Weird Symptoms of Celiac Disease | Atypical Clinical Features
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- Опубліковано 27 вер 2024
- Weird Symptoms of Celiac Disease | Atypical Clinical Features
Celiac disease is a gastrointestinal condition involving autoimmune destruction of the absorptive surface of the small intestine, which is triggered by the gluten breakdown product gliadin. Celiac disease is characterized by hallmark gastrointestinal signs and symptoms including abdominal pain, diarrhea and weight loss. However, particular nutrient deficiencies can also occur in Celiac disease leading to “weird” (atypical) and more rare findings. In this lesson, we discuss these more atypical and rare signs and symptoms and why they occur.
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JJ
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I'm 51 now and was diagnosed at 47. I've always been underweight since childhood, and had a gluten allergy but didn't know. By the time I was diagnosed I was showing obvious symptoms most people notice:
- extended stomach bloating
- reoccuring persistent itchy skin rashes
- bleeding gums and swollen tongue
- brittle nails and splitting hair
- chronic fatigue and tiredness
After diagnosis and undergoing scans and tests, they revealed advanced Coeliacs Disease damage to my body:
- chronic deficiency in vitamins and minerals due to inability to absorb them
- osteopenia, low calcium bone density, pronounced spine curvature
- severe intestinal inflammation and damage to lining
Despite doing my best to follow a gluten-free diet (which is actually quite hard unless you avoid all processed-foods and can cook), my symptoms worsened
to the point of the more atypical symptoms described in the video:
- Chronic depression and cognitive impairment
- Gastrointestinal bleeding (coughing up blood most days)
- Severe weight loss (20% or more and was already underweight)
- Restless leg syndrome and inability to sleep properly
- Increased need to urinate and more urgently
- Occasional pains and odd nerve sensations in extremities (arms, hands, feet)
It's estimated that up to 20% of the population have gluten-allergy, but not all will go on to develop Coeliacs Disease. A common an unusual feature to people with gluten-allergy is a tendency to crave foods with gluten, particularly wheat foods like bread, ironically.
Coeliacs Diease despite being fairly common is still not well understood or recognised by Doctors because its a silent disease and people with gluten allergy can go decades without presenting any noticeable symptoms. There's also a lot of conflicting (and often incomplete or inaccurate) information regarding treatment and following a strict gluten-free diet.
There's a whole range of food additives that contain gluten and should be avoided such as:
- Modified Starch and Modified Maize Starch (common in processed and canned foods)
- Processed Soya meat alternatives (unless labelled Gluten-Free)
- Barley and other grains besides wheat (often used for colour and flavouring in Cola)
- Yeast Extract
- Oats (unless Gluten-Free Oats)
- Caramel Colouring
- Smokey Flavouring
Most beers contain gluten but you can buy Gluten-Free beer or cider.
My advice to anyone showing early signs of gluten allergy is to stop eating gluten then get a diagnosis early on to avoid having serious problems later in life.
And if you have been diagnosed with Coeliacs Disease and like myself have some of the more severe complications, my advice is to avoid processed foods except clearly labelled Gluten-Free processed foods, and eat only non-gluten simple foods, ie foods in their natural state. Don't make the mistake I did for years of assuming just because the ingredients look ok and there's no warning about gluten it's safe to eat. At present, there's no legal regulations on food manufacturers in most countries to mention the risk of cross-contamination in food factories that handle wheat and gluten, so always assume unless a food is labelled Gluten-Free there's a risk it may contain trace amounts of gluten and isn't safe to eat. Don't take the chance.
And most important, to combat the nutrient deficiency problems associated (because your body won't be able to absorb nutrients as well even on a gluten-free diet) is to take a really high-quality well absorbed vitamin and mineral supplement daily. You're better off getting this from a Doctor prescribed or from a qualified nutritionalist. Normal over-the-counter pill supplements are usually poorly absorbed and even less well absorbed in Coeliacs sufferers. So you may need B12 injections and mega-doses of vitamin D and Calcium in easy to absorb formulas.
It can take many months and often YEARS to fix chronic nutrient deficiency (up to 5 years to replace calcium loss in bones) so It's well worth getting regular blood tests done to monitor your nutrient levels and treatment progress and see whether you need more/better supplements. If you can't get blood tests done via a Doctor, there's plenty of private medical services that do this now via the mail with simple inexpensive kits you can order online and do at home with just a pin-prick. You mail it back and they send you detailed analysis which you can use to monitor your recovery. Unless you have a good Doctor, it's probably something you're going to have to take care of yourself to get well and stay well being a life-long condition.
If you don't avoid gluten completely (even trace amounts) and take a good nutrient supplement, then you're putting your health and life at risk. As well being more at risk of neurological diseases such as dementia you can die early from complications related including stroke/heart-failure and and an increased risk of fatal respitory infections and also various cancers.
Remember it's an auto-immune disease, so over time your immune system is impaired and that combined with the nutrient deficiencies and damage to organs all contribute to a significantly higher risk of serious illnesses and terminal diseases, which can be avoided if you take care of yourself by gettting proper dietary nutrition support and completely avoiding gluten. Don't eat foods prepared outside your home because cross-contamination is a real risk.
You keep equating allergy like it is related to Celiac. It is NOT. If you have an allergy to wheat, it is a completely different disease. It does not somehow morph into Celiac disease. If you are going to copy paste something multiple times, at least check it for errors.
Thank you for sharing!!
I've had severe bowel & digestive issues all of my freaking life!
I thought I was only allergic to dairy!
After continuously studying Coeliac disease just within the last few days on UA-cam & Google I have every issue & symptom!
It most recently started with extremely painful gut purging after eating some bread that had wheat gluten added to it in the ingredient list.
2 weeks later I consumed a small amount of the same bread & the same extremely painful purging occurred, both times within 1 hour of consumption.
Now... I am a self diagnosed Coeliac @ 70 years old.
I will have my doctor do tests as well!
I am now going to eat a strictly Carnivore diet & pray my health finally improves.
Well wishes ❤
God bless you for this information, and May the Lord God,the Lord of Mercy and the Great healer ,send healing to you in Jesus name, May you be healed and your health restored in Jesus Name,Amen.
This is the coolest frigging comment I've ever seen. Hands down. What great information. I got diagnosed today. I'm kinda freaking out. I've had a stomach ache every day for 4 months. I scheduled a endoscopy 3 months ago. Went in the other day and got my results today. Inflamed intestines. My sister also has Coeliac disease. So they knew right then what was going on. My nails have gotten weird the last few years. I was diagnosed with ACTUAL Restless leg syndrome as a child and it runs heavily in my family. As well as coeliac I guess. I'm kinda... no I am definitely freaking out. I can't handle a chronic pain condition like this forever for one. 2, I love my cookies. I love my cookies. Ugh. This sucks so bad. Anyway, I really appreciated your comment. So helpful
When I was a child, after waking up from an afternoon sleep. I would always wake up crying. It would drive Mother mad. Growing a little, once the afternoon naps stopped, things were fine. But later in life I started to take afternoon naps again & would always wake up with a horrible feeling. Almost like feeling suicidal, (Honestly though, I don't know what genuinely like to feel Suicidal. It's the only way can describe the feeling). When I was getting into my 40's though I started getting mild joint pains especially in my hips. By chance I came across an article by a lady called Zoe Harcombe, that stated there was an association with wheat & some other cereal grains to arthritis. So as an experiment, I cut all cereal grains out of my diet. It worked & my mildly painful joints got better. I also have more energy then before & now when I wake up from an afternoon nap, I feel refreshed. If only my Mun knew this when I was a child. That said, I'm 59 now & up until this date I still haven't had or sought out a diagnosis. Though I did mention it to my doctor once, he wasn't even interested.
Thanks for making this video. I was diagnosed at 38, with mostly atypical symptoms. I stopped absorbing my levothyroxine, so I had many hypothyroid symptoms. Every crumb of gluten causes a rheumatoid arthritis & vasculitis flare. I also had the typical malabsorption issues, deficient in iron, b-6, folate, b12, d, magnesium, and zinc. Along with that came many symptoms associated with the vitamin deficiencies, like depression, tension headaches, etc. And because I was starving at the cellular level, my food cravings were uncontrollable. Now that I’ve been gluten free for three years, I’m off most of the meds and vitamin supplements. My mental health is stable, and my food cravings have normalized. Now I can focus my energy back to managing the rheumatoid arthritis. 🎉
Kindly reply ...
Did you have diahorrea or constipation
That's fantastic, thanks for sharing.
There is kind of undeclared ban on wheat consumption among south Indians , since thousands of years.
Collagen- hydrolyzed to undo damage
@@shabnamimran7053, I’d had constipation for years, and diarrhea in the month before my diagnosis.
Many celiacs are NOT under but overweight. The malabsorbtion does not affect calory uptake. So because of malnutrition (vitamins etc) celiacs crave more food and "overeat" in an attempt to get the nutrients they lack.
I think I have celiac desiese and I am 52 kilos.
@@rockmetalband Yes, you get both. I am sorry to hear that.
That would be me! Then again, almost every single one of my abdominal organs is wrecked + I have anemia and am IgG deficient in all 4 subclasses. I am tired of going around with a broken, painful digestive system requiring an arsenal of meds to not vomit + being fully dietarily compliant.
@@kgrfirdjydont eat while you drink(before 30 minutes and after 2 hours,dont eat sugar nochocolates or softdrinks even softdrinks without sugar are bad and dont eat glutten bread or croissants also start exercising i exercise 4 times a week mma ) all of the above help alot
I'm Italian and I feel attacked. We are all over weight
I appreciate this video, but all doctors need to hear this, not just people like me sitting on UA-cam all day.
I'd like to know why most doctors do not test for CD when there are SO many symptoms and it is the most common autoimmune disease in the US and UK? I cannot tell you how angry I am at the medical community for treating CD like it is a joke. It goes beyond infuriating! I am sure my son has it and my sis did too, but she is dead now, never having been tested.
THANK YOU.. I'm 60 n have suffered since childhood.. TG UA-cam has so much wonderful info is available .. l've learned to basically diagnose myself.. SHAMEFUL worst doctors in best city NYC hospitals I have found ESPECIALLY gastro!! Thanks wishing you well! ( Still suffering a bit but NATURAL REMEDIES n making my own diet!) GOOD HEALTH to all!!!
It should be talked about in schools. But wheat has a big lobbiest
The trouble is, there's no expensive drug to prescribe for celiac disease. If there was one then the doctors would be a lot more interested in diagnosing this illness.
@@SeanFication i agree.
I understand your frustration, many Drs don’t thinks of CD
A lot of women with Poly Ovarian Syndrom are Celiac as well as insulin resistant.
Ah yes. You just described me.
Your comment should be pinned
Really?
I am SUPER excited I found your channel. I wish I had found it 4 months ago when I started Microbiology and A &P. The detail and the organization is phenomenal ☺️. I love it! Thank you so much for your efforts and trying to help people like me. God bless you!
I quit gluten and dairy two weeks ago hoping it calms the hives and angioedema I’ve suffered with for 35+. I already feel/see a difference.
I diagnosed myself with nonceliac gluten sensitivity in my sixties
I've researched a lot. It can cause many illnesses. Some are very serious.
Thank you
Having many of these symptoms I have often thought that I was diagnosed wrongly as a child,being told that I had asthma at age 7 but could never get any real relief from the numerous inhalers and preventatives I was using. I had a number of health conditions where I spent much of my childhood and some of my adult life in hospitals. I have had a number of GI symptoms with gastritis,inflammation and bleeding of the ileum along with both peptic and duodenal ulcers among some of them. I was diagnosed at age 18 with bronchiectasis but over the years have had several different diagnosis with lung diseases including last year being diagnosed at age 50 with fibrocavitary fibrosis. I haven't had wheat or gluten for 7 years due to having an allergy to the wheat protein which caused me to have severe hives and dermatitis along with anaphylaxis. Last year I was treated for a severe B12 deficiency and I am under Specialist care seeing a Haematologist on a regular basis. I have hemiplegic migraines with a movement disorder which causes aphasia and seizures. Have severe anxiety so have been seeing a psychotherapist for a year now, I just wish someone once and for all could treat my health conditions as a whole.
🙏🙏🙏
Sometimes gluten hides in food additives like "natural" flavors or artificial. Someone double check me? But for sure if you get accidental micro contamination, you will commonly see ppl continue to have symptoms, especially when they have severe sensitivity. ❤❤❤
Try not to eat out. The grill can be contaminated, and frying grease is almost always contaminated.
Eating eggs at a place that does pancakes...won't be totally GF, due to cross contamination. ❤❤❤
Doctors certainly were not trained in detecting celiac symptoms evidently. I had a mouth full of canker sores, the most the doctors said they had ever seen, but no one tested me for celiac. I was instructed to brush teeth every time I ate one bite and use some kind of rinse they prescribed. Of course it did not help.😅. So glad more doctors are becoming aware of it.
I had CD for 8 years before it was diagnosed. There are many in my family that have it, so it does seem to be hereditary as my mother also had it. Only 1 was diagnosed as a baby when he started eating solids; the rest all developed the symptoms in teen and adult life and often after something stressful like surgery, bereavement, and extreme dieting for weight loss. Hashimotos thyroiditis also come along with it in my siblings and I. My nephew has the dermatitis only, while the rest of us all have bowel trouble and severe pain when we accidentally eat gluten. Not a fun thing, but we are thankful there is now so much better labeling and many more gluten free products available compared to when the first ones were diagnosed 50 years ago!
Do the hashimoto and dermatitis go away with gluten free diet?
@@PatroliHoax The dermatitis will go away with the gluten free diet, but not the thyroid problem. I have to take a little pill for that every morning. Some people have beat Hashimotos with diet, but they didn’t have celiac too. Dr Berry’s wife Neisha has done that. So have the folks on Rain Country homestead. They and Dr Berry and his wife are all on UA-cam.
I think we’re related..lol..same story except I wasn’t diagnosed until 48.
My symptoms start by age 5. Finally diagnosed at 48.
I have hashimotos, too. I'm also thankful for better labeling. It's so much easier! I have to treat myself with NDT ordered from online because I can't find a doctor in my state that even understands hashimotos, and they won't treat it here. I was diagnosed with CD at 32, but had diagnose the thyroid problem myself at 58. I had goiter and kept gaining weight despite starving myself trying to control it. Now I feel better and am no longer obese. I had symptoms of both since birth but some doctors are useless. One gave me tetracycline for the dermatitis because I get that, too. Tetracycline has gluten in it! If course it made it worse - and he told me to keep taking it. I didn't.
Can you make a video about Microscopic Colitis? I really like all of your information on health.
Many thanks for this video. I have Coeliac Disease and Dermatitis Herpetiformis both controlled with a very strict Gluten Free diet and Vit B12 supplement. When diagnosed in my mid 30s I was 50kg. I went on a GF diet and 2 years later I weighed 85kgs and my Dr told me I had to lose weight. Really??? I am now 73kg and 76 years. This was a very helpful video and thanks.
FYI: If you misscarry or can't get pregnant, you might have Celiac.
Also the average Doctor knows nothing about this disease and its symptoms, let alone the proper testing proticols. If you think you have it, and diagnosis is important, don't just quit eating gluten.
I have D.H. AND I gave 5 Drs 23 years to diagnose my illness, I had over 30 symptoms. In the end this retired EMT diagnosed herself.
These and other educatinal videos and documentries are the real reason why internet and youtube was made . ✔️✔️✔️✔️
I want to thank you for this video full of great information. I was diagnosed with celiac disease 14 years ago. I also have the skin disorder. I am native American and about five years ago my husband noticed that my skin was getting very pale. We could not figure out what happened or what was going on. Thanks to this video, I now understand!
Have you try gluten free diet?
Low Fodmap diet
This is a wonderful video, thank you. Every GP should view this video. I actually diagnosed myself, after many years of running around to many specialist. I now realise It’s virtually impossible to eat out. I ask for gluten free as I’m celiac, they assure me saying yes it’s GF, what they don’t take into consideration is cross contamination, whilst these GF foods are being processed. 🤷♀️ Manufactures would under stand if they, them selves or family members had CD.
May I ask where you first noticed the paleness? As in what area of the body? My hands have gotten really pale. But other times they appear to be very red. Other times they are a mottled combination of red and white like when I make a fist and then open my palm it looks blotchy. I'm also part native American. The good part 😉
@@jimig399 I want to see my face at first. But I can tell you what was taking place at the time that everything went pale. My gallbladder had went out and I had unknown to me, three gall stones removed at the same time my gallbladder was removed. I'm not sure how they're connected, but that's what I remember. That was a little over five years ago.
So can anyone explain the impairment of the spleen in coeliac disease. I have been given various vaccines against meningococci type bugs. I have laterally ridged finger nails but normal folates. Also four further food allergies including lactose. My condition took 20 years to be diagnosed and a healthy gall bladder was removed along the way. The most frustrating issue was being lectured by a clinician on mind over matter and being accused of attention seeking.
Should make a complaint on their license for doing inadequate work
Maybe change clinicians, many don’t see it for the serious disease it is. If they had it, they’d soon understand. I’ve noticed celiacs often become lactose intolerant.
May be you are deficient in fat soluble vitamins , vitamin d especially can cause lower immune levels. Fat malabsorption may cause gallbladder dysfunction.
I was a used and hospitalized for anorexia as a 19 year old. I was also type 1 diabetic and it took 20 years to diagnose. I was at my lowest cuz my family criticized me everyday. It was awful!
@@calisingh7978 One reason for doctors brushing off this problem is because of all people who claim they have the problem when actually it is just a dietary fad. A lot of people avoid gluten thinking it’s bad for you anyway. So doctors do n’t want to be bothered with the self-diagnosed hypochondriacs. They’ve never known much about true celiac disease and now they act like it doesn’t exist. Demand a small intestine biopsy.
How did you manage to do this e tire video without mentioning severe constipation from inflammatory response?
This omission is so common. Sadly.
I had a lower intestinal resection due to a twist, 12 yrs ago.
Osteoporosis + other issues
Celiac hits every nerve
I’m trying to get some relief from herniated disc’s and severe sciatica, the anemia issues are there, bloodwork showed otherwise, I appreciate your information thank you
Same here, I have the same back injuries, nerve pain is a big problem. I noticed the nerve pain gets worse, after being accidentally glutened. CD can come on at any age. I was in my 60s, I know of a lady in her 80s just being diagnosed with CD. I feel so sorry for kids having It 😞 so hard for kids.
I have corn induced celiacs and it’s kind of annoying to hear only the wheat version and have people for decades misdiagnosis me because they don’t understand how corn gluten is overused in our food system. Have had anemia horribly and life is pretty miserable trying to avoid corn m. Definitely fortified foods are problematic. But no problems in Europe so
I have celiac and gluten allergy. I had 25 symptoms. Including minor hallucinations asthma stomach pain
I never counted, but I had many too, but was not dx'd until I was 55. By then I had a lot of damage done.
@@cbryce9243 thats sad. My friend learned at 75. Its a tough pill to swallow when you find out so late.
May sound dumb but how did you get diagnosed? What kind of doctor? I cannnnnot find a reasonable gastro who w LISTEN! I had OSTEONECROSIS stage 6 of the hip plus w need probably 4 joints replaced eventually STILL SUFFERING w stomach! 62 yrs old ! Healthy habits .. it's the STOMACH!
@@janicejacome i was super sick went to allergist dermotologist pulmologist and one day at work i said to myself you have celiac. Like it was a thought from god . Never went to doc. When you stop eating gluten for 3 weeks you will know. I have zero symptoms i had before
I also have wheat allergy and celiac disease along with lupus!
Thanks so much for this informative explanation! I’ve never been diagnosed as celiac because I stopped eating gluten, wheat when it was suggested doing so would alleviate my terrible symptoms. But I can see now how it may be responsible for my anemia and severe ibs. Will be meeting with the hematologist on Monday and this video will definitely help me make the most of my visit with him or her. Tnx again 🙏
I have the MTHFR genetic anomaly, and came down with a terrible case of SIBO, which is not autoimmune but can be practically indistinguishable from celiac. I ended up getting transfused with 4 packed red blood pints. I was fortunate to be able to respond quickly to treatment.
It might be worth one's while to research both MTHFR and SIBO.
You are so right. After getting my 2nd celiac test (did it correctly the 2nd time) came back negative I've started to look at SIBO closely. As I watched this video I was struck by how many similarities the CD symptoms are to SIBO. Reading Dr. Davis "Super Gut" on how to naturally cure SIBO and how to keep it away as you heal. I'm already wheat free despite the negative celiac test and I'm keeping it that way. Patience is needed to deal with SIBO. I've been aware of MTHFR for a while. I wonder who you can trust to get affordable genetic testing. I'd love to see what my genes say but I don't want certain corporations having my genetic code which they may sell if not specifically prohibited and I'm not sure that is a good thing to have happen in this day and age.
Thank you doctor for the information i really appreciate it i did not know this i learned something new I love watching you
.
Super interesting to me as I am celiac with none of the obvious GI symptoms and many of the atypical symptoms: secondary infertility, early menopause, vitamin d deficiency, joint pain were and confirmed hashimotoa thyroiditis.
all this led my Endocrinologist to run a celiac antigen test - lo and behold, it was positive. My GI Dr ran bw that revealed I had the genes for celiac and subsequent Endoscopy confirmed damage to my small intestine.
Age 46 when dx as celiac. And I now have osteoporosis.
My mother was then dx as celiac at age 75. as we discussed the "symptoms", we concluded my maternal grandmother and 4 of my mother's siblings all had celiac - vitamin B12 deficiency "runs in my family" so I was told - ya, clearly celiac is the root cause.
So I now warn my brothers, their kids and my kids to watch for the atypical symptoms and to get tested for celiac periodically.
Did you have any hairloss?
@@laurawhite4118 I did not experience hair loss due to being celiac. But decades after being diagnosed I am experiencing hair loss and cannot find an obvious cause. I suspect that either my age, genetics or another acquired/ triggered autoimmune disorder is at work. My hypothyroidism is under control if you believe in TSH and Free T4 tests... I do believe in the tests based on monitoring the results in relation to my symptoms for so many years.
@@debmurray2734 I was wondering because I've seen several people talk about hairloss with celiac.they cut out gluten and their hair grew back.thanks for answering.
I wonder if I have this. I break out in weird, itchy, painful blisters all over the palms of my hands down to my wrists when I eat too much bread. I also get the cracking in the sides of my mouth, and it takes a long time to heal. I just thought that I was dehydrated.
You should get tested that’s how mine presented I believe it’s called dermatitis hermetephormis
Can Celiac be improved or cured with Bile Therapy ? It may be too early to tell but I could tolerate wheat better after taking 1-2 capsules of Ox Bile (500 mg) around meal time. Maybe the Bile breaks down the wheat so that your intestine isn't bombarded by undigested particles that trigger a response from your immune system. Due to other medical conditions I have making my pancreas and liver sluggish,I figured it'd be good to try some Ox Bile for digestion,but it improved my tolerance and absorption of wheat also.
I was diagnosed with Celiac at 45, and I had all of the above symptoms. And neurological problems are indeed irreparable as I failed to get a diagnosis on time, must have had it for over 10 years , if not longer.....Since I was diagnosed, 3 other members of my family did as well, including my elderly mother that did not have any gastrointestinal symptoms....
So I have virtually all of these symptoms but I have been diagnosed with POTS, heat intolerance with that rash, and IBS.
There is some overlap between POTS and coeliac disease, but it's poorly researched. Some POTS sufferers benefit from a gf diet, and a LOT of them benefit from low carb. Might be worth a try?
@@danmcdaid Thanks 😊
I've struggled with anemia since the age of 6. Currently, still struggling with both anemias at age 62. Every time my hematocrit drops, the MCV increases proportionally. I constantly have severe drops In other vitamins and minerals as well. My test for Celiac always come back neg. I have crohn's and psoriatic arthritis which many say are caused by gluten intolerance.
Thank you so very much for this top quality information. It is the very best I have ever come across on UA-cam. You're a great teacher. You give all the relevant medical info without dumbing it down. Thanks again.
I was diagnosed fifteen years ago. The dietitian diagnosed it since the doctors gave me every test but this one. I think I had it as a kid because I would get the rash. Never could gain weight. .
Does anyone else with Celiac’s disease get joint pain??
I get systematic joint pain as well as brain fog.
Joint pain u til I'm sobbing. I can't do anything to relieve it. Just wait for pain pills to bring it down, 😮some.
Anyone know why my vitamin levels always seemed fine enough, but I was still having symptoms like mouth ulcers? Took me three years of constant ulcers to be diagnosed with celiac. But if my vitamin levels are fine I don’t understand how it can happen
I was diagnosed in my 40’s with celiac disease after a biopsy and genetic DNA testing. It took over 11 months to be diagnosed as I was a false negative on the original blood test. I was hungry all the time and actually gained weight as I became sicker as I was eating so much as my body was not getting the nutrients it needed. It took 3 weeks to start feeling better. I find it hard to eat out. I have found not all products marked gluten free are. I have found I can’t eat oats as well as wheat, rye, and barley. Thank you for this information as both my children have the genetic markers for celiac disease. Also, to my understanding the USA is allowed to have a higher level of trace gluten in their gluten free products than other countries like Australia.
I can’t do oats either.
I also have the symptoms but tested negative in ttg. Upper endoscopy showed gastritis but im not gettin any relief from medications. My symptoms appear after i eat. Its been 3 months and no relief. I don't know what to do.
If you haven't maybe read the Cleveland Clinic information on gastritis to see if there is something that helps-@@meghamehra3777
In Australia and New Zealand oats are not considered GF as it has a protein that can cause reactions similar to gluten in some celiac people.
It is frustrating to see so many products listed as Gluten Free in the USA and then look at the ingredients and oats are listed. @@drayner2517
I was diagnosed with Celiac at age 30 and it’s very different I have bad days and good days 😢 but I have to deal with it
I have battled With anaemia for years. My dr told me it was due to poor diet, even though never discussed my diet! I think he never thought to consider my CD
I am 52 and found out I had celiac 3 yrs ago, when a gastroligist went in to see if I had acid reflux. I didnt have symptoms, but i had been gaining weight even though i excercised. During covid i still would go on an eliptical and ate one meal a day and fruit in the morning. I am still learning what has and has no gluten. I have gained weight no matter what i do and my belly looks pregnant. I started going back to the gym a few weeks ago. I eat a trailmix in the morning 2 snack packs and dinner. I drink water and green tea and so.etimes a half zero gatorade with dinner. I do not know what else to do. My nutritionist said to take glutamine to help heal the villi. Im out of ideas. Hopefully working out 3 times a week will help. But i dont know what to eat half the time. Im also tired alot. I mamy vitamins to help replace some that might not absorb. Any advice would help.
From what I have learned since 2011 that Celiac Disease is caused in children to start with when their mothers take them off their milk and put them on solid Baby foods. The food is made with three foods that have gluten in them. They are Wheat, Rye, and Barley. Just after turning 67 I found I had these blisters appear (yes, your number 5 (DH). Saw three doctors and the first two recommended I see a Dietician but they had no idea what I had. I had these blisters that were the size of my ring finger nail on my hand (second largest nail).
Meanwhile I learned to cut each blister off below my kneecaps, off below my elbows, and I usually had five to six blisters on my shoulder blades; if there were five on the right side there were five on the left side, if the next day there were six on one side there were six on the other side. And another collection of blisters on my buttocks. Never told my wife but had to cut each and every one of them with my thumbnail to be able to sleep from the intense itch that was there. Finally, eleven months later I went to see my Dermatologist 100 kilometers away for my yearly skin cancer tests. Whilst she was looking at everything I asked her what she thought of the blisters I had on my knees and elbows. She took one look at them and said she would take a biopsy off my right knee and one off my left elbow. As she walked away she said she suspected she would have to give me tablets! A week later with the results she put me on two Dapsone tablets a day for 50 days, then one tablet for 100 days, and had just put me on half a tablet when she rang me at home and said STOP.
Your Biliruben has gone out the window. Long story short my Y-DNA is I1a3a1 haplogroup and we are of Northern European ancestry. They are the only people who are said to get Dermatitis Herpetiformis (DH). Caused by a close person making fun of him/her. It is said that one can come right and go off being gluten-free if we are lucky. I went back to normal in 2016 but now having moved again to an area where there is limestone in the town water I seem to have blisters come around. Much different to DH as they are just as itchy but are mostly on my forearms ...little pin-head-size blisters. I would imagine this could come right if we bought another fresh water tank for all our other water needs. This time I note my wife has them, and no 2 daughter half an hour's drive away as it is in her town too. Might I suggest you google Professor Lionel Fry as I saw his many years of testing in 2012 onwards. Also a lady from Scandinavia. Kia Ora.
There’s a Dr. de Adamo who wrote a book called eat right for your type. In this book he indicated that type O do not handle the digestion of grains well. The most common blood type is type O. I think anybody suffering from chronic illness would do well to try an elimination diet. I was chronically anemic my entire life I only recently had a good enough hemoglobin to donate blood. I didn’t discover I had a wheat intolerance until I went on the Prizm diet for weight loss. Eliminated all grains and sugar . I lost 20 pounds in two weeks just from eliminating the inflammation it was all water. Also got rid of all of the pain in my joints. Also suddenly had a normal hemoglobin.
Yup, my blood type is O, and I have to avoid grains 😑 due to celiac disease.
Ive been suspicious of gluten for a year or w bow but im positive ive had it since my mid twenties ... i have went days n days without food fasting and my stomach is hard as a rock. No matter what i eat nd no mtter how empty.. i did a raw vegandiet for about a year or two.. best iive ever felt but its a very hard diet to stick to..been living w this mess at least 30 years now as im 55 now... but since im considdered Obese when i complained to drs.. all they can see is Fat and would push me out the doors LITTERALLY saying just lose some weight 😮 but never attempt to figgure out the problem... blood work came back and all is good on the average so yet another Dr w a all is well diagnosis... but something is for certain messed up. 730 at night right now and haven't had a meal or a bite to eat since supper yesterday. My stomach is hard as a rock and I'm sick w low sugar at a reading of 60... just sick all the time but can't get ANY HELLLLLLLP 😭😭😭
I’ve cut all wheat and dairy out for wks now. Feeling a lot better without it. ❤
If you are not a Ceoliac then make sure you take extra vitamins and minerals as a gluten free diet is deficient
I was diagnosed at the age of 34.The only symptom was Gerd and difficulty in swallowing.. Does any one feel that symptoms.?I m worried because even going gluten free i feel sometimes tightness in my throat ir feel like food is stucked in my throat. That is weird symptom i never listen. Otherwise I'm asymptomatic.
I have similar symptoms like u had
When the Atkin’s Diet was popular in the 1990’s & early 2000’s I was eating low carb(mostly vegetables, meat, some dairy & berry’s)the insanely itchy rash on my chest, stomach, buttocks & thighs disappeared. If I cheated on my diet the rash would reappear and I would sometimes grow painful lumps on the first joints at the end of my fingers. If I stay away from wheat, barley & rye the pain would subside & the lumps didn’t grow bigger. Could arthritis be related?
Best video on celiac I’ve seen so far. Thanks for this.
Female celiacs often bleed more and excessively because of vit k deficiency. Also there is a recognized increased risk of miscarriages.
Oh my goodness. I don't bleed I FLOOD!! This been going on for over 15yrs! I just been diagnosed with Celiac disease 2wks ago! I will speak to my GP regarding Vitamin K
@@maitabasa7693 You may have PCOS as that causes severely heavy bleeding, i have it too
My son was diagnosed with celiac disease at 7 months old he in his 40s now i was diagnosed in 2017 so i developed it, it can run in family's all you have to do is go on a gluten free diet have much fresh food as possible vegetables and fruit cook your own food so you know its gluten free and get into the habit of reading labels and when eating out ask or tell them you need gluten free.
No.
Never mentioned by all the Doctors I visited with most of these symptoms.
I grew up with weird symptoms my entire life and no doctors could figure out what the heck was going on and they had no clue that was actually a symptom of undiagnosed celiac disease. I used to get migraines and leg cramps as a child. No reason was found for it. I was always anemic. I had late onset menstrual period. I was born with bone malformation. I was born with scoliosis. I was born with balance problems. I also had anxiety and depression as a child. Plus I had the usual GI symptoms. Unfortunately I wasn't diagnosed until I was 47 years old and at that point I was already close to death. My doctors couldn't figure out why I was so sick and why I was losing so much weight and why I couldn't take in any more nutrients. I was sent to the hospital and that's where I got my diagnosis through an upper endoscopy. I was severely dehydrated and I was depleted of all my vitamins and minerals. My lower body started to swell because I was lacking in protein. So my lower limbs started to fill with fluid and that didn't go away until I got enough protein in my body.
Thank you, best ever description!
I must of had this as a child but wasn't diagnosed till I was 52! I grew up eating wheat Rte and barley! I was active but always chunky around the middle! I was getting gret& white hair at 11 also my teeth were bad no enamel! One time my brother near said try wheat germ in yogurt just allittle made me pass out immediately on the table! I never ate that again! It affects bones I have brittle bones ! If I have shampoo with wheat protein my scalp burns and I have bad dandruff! My skin will itch and flake very dry! I had acid reflux and a hiatus hernia! At 52 had a stomach empty test! I ate a half of peanut butter & jelly on cracked wheat 17 hours before test and it was still in my stomach at time of test! It looked whole in picture never digest Ed! That's why I always had acid reflex
Any correlation with mucus creation in throat? Impossible to clear? Infrequently passing stool? Intestinal spasms? A problem with serious insomnia? Dry mouth? Likely some of these not related.. also a persistent jejunal Intussusception (found imaging)
I have the same symptoms as yours, Did you stop taking of depression medication? I did so after that I faced almost mentioned symptoms, Could you please tell how did you solve or overcome these problems.
Much appreciated if help me by telling your related experience
@@EduJob-dl7pu I was on some for about 2 years. But this happened unrelated it seems? Been off over 6 months, too. Is it the mucus issue? I still get it.
@@djkenny1202 It is not diagnosed yet
Thank you for the feedback
@@EduJob-dl7pu what symptoms?
@@djkenny1202 Throat and mouth dryness, pain in chest, stomach problems,bowels movements, nausea and diarrhea,
I was diagnosed with UC. Could I have been misdiagnosed?
Eliminate all gluten from your diet and you will quickly found out
I was diagnosed with Gastroparesis. When I finally went gluten free my stomach aches completely stopped. Either I was misdiagnosed or I have both
I'm starting to suspect I have this. I recently developed anemia, extremely low folate, low b12 and high white blood cell count and I've been getting alot of random rashes lately and getting sick after eating foods that used to he fine but it's inconsistent and random
I agree it is difficult to find gluten free products in countries where it isnt a very well known disease...and if at all some pockets of the country have gluten free options they cost nearly 20times more than regular stuff ...i have started reading labels for finding alternatives for my different type of requirements aka avoiding all purpose flour etc but yeah even whole wheat bread bas added glutten in my country
Eating gluten free is easy, just eat real food bro. Vegetables, fruits, rice and animal products excluding dairy
@@Aviamoyal vegetarian...so no animal products
@@amitas7047are you from India..? I also have same problem gluten free flour of 1 to 5 kg is more expensive then 20 kg wheat flour bag ...
I am diagnosed negative but my doctor said me to avoid wheat products.
My simptoms came in like 10 days. What I experienced is tiredness, constipation that was 7 days long, cramps, feeling like my blood was poisoned, my hands were going numb, I had ulcers inside my mouth, my anxiety was baddddd, when I stood up, i felt like OI had no balance. I felt good in the morning... until I ate and first meal always had gluten in it (pastries, cereal...). And I realised that something is wrong. I decided to stop eating gluten. Today marks the one week. And oh my gosh, the energy I have, I go number 2 every day, no more other symptoms, I AM LESS HUNGRY!!! Which i thought would be opposite because gluten free diet is not really tasty and I thought I would be hungry, but no. After meal I am full for so much longer. I am a bit overweight, so I'll see if that will impact my weight. Also my whoooole life I had thyroid problem, and my doctor never knew what was causing it, and also it wasnt that bad to treat it. Celiac often causes thyroid problem, so I'll also see how that goes, and if next blood work will come better.
Yeah, i totally feel you, gluten free diet is not that good, it also often depends on the companies that produce the gluten free food. Some of them have good breads, but disgusting sweets, etc.
It takes a lot of time to get used to it and all... For me to find good gluten free products took me atleast a few years!
I wonder can celiac disease cause palpitations and tachycardia?
Anemia is a mother*******😮. I had IBS and other issues but the anemia, and resultant depression and brain fog were the absolute worst 🥵🤯. Didn't get diagnosed until this year, gut hasn't recovered yet but getting iron infusion this week.👍
Some of these symptoms mimic POTS which I have and a folic absorption deficiency. I CANNOT remember the clinical term. So could this be related 🤔
look up info on MTHFR for folic acid absorption issues - it is in part a genetic variant. i have that, celiac disease, and hypogammaglobulinemia and found out about it when i got genetic testing to see which psych meds work best for me due to anxiety, depression, and adhd. many of these can have a connection, showing up together 🤬
MTHFR
@@kgrfirdjy yes B-12 deficiency can cause psychiatric symptoms
Yes...most certainly...for 15 plus years I was diagnosed same as you! Finally the Malobsortion got so bad my Potassium dropped to 2.5 and it took several more months to find all the nutrition deficiencies that led to me being placed on a gluten free dairy free diet along with supplements...I lost 80 percent of my laundry list of symptoms that I had suffered with on and off since childhood...and I tested NEGATIVE by biopsy on my Colonoscopy...yet 8 months later after the near heart attack and being placed on the gluten free dairy free diet was THE TRUE ANSWER...I'm known as a Gluten Sensitive Person ~Best of luck to everyone
@@kgrfirdjy Try Homocystene levels. They elevated in low folic acid and b12 deficiency
When I get accidentally glutened I get those sores on my tongue and gums. I had a very large and aggressive growth removed in my upper colon from years of damage. The Dr. tattooed the spot and now looks every colonoscopy I get. He wants me to get them more often that others due to my history now.
Hi JJ,
Could you also make a video about Cystic Fibrosis, PLEASE?!? (Also falls into the celiac type diseases)
As it wasn't routinely tested for before 1989 (by genetic test on baby heel prick test at birth), there will be a fair few people who walk around undiagnosed, wondering what is wrong with them.
Thank you
Too bad doctor's don't seem to know this! Too bad people don't believe this diagnosis too!
I am in the process of being diagnosed as i await further tests. Mother has had it 10yrs.
Also diagnosed with a 6cm Hiatus hernia and Diverticular Disease/Diverticulitis since 2019. So my digestive system is a bit messed up 😂🤦🏻♂️
Diverticulitis is from eating a diet low in fiber. So when you eat your food, it tears the inside intestines trying to get the waste out. You cannot heal that. So the problem becomes when you eat things with seeds or popcorn, those seeds get into the tears and get stuck. They get inflamed and bleed. A diet high in fiber help move waste along quicker. Most Americans have diverticulitis from our diet. But just because we have it, shouldn’t make it an ok situation. We still need to address it. I have a friend who didn’t listen and perforated a diverticulum and had to have some of her colon removed.
A hiatal hernia comes from excess stomach acid. Another common problem from a poor diet. A diet high in fiber, fruits and vegetables will balance the pH in the body. But once you get a hiatal hernia, you will always have one. So you will always be prone to having acid rise up. A more base environment would be better for you to help with this and the diverticulitis.
I was diagnosed with a severe Wheat, rye & barley allergy & celiac disease two months ago, hence a strict gluten free diet. When will I feel start to feel better? My Dr said it will take months for me to feel better, that there isn’t any meds to relieve the discomfort. What can I do?
Cannabis
It took me 6 months to clear gluten from my system when I first went on the GF diet, but you have to completely avoid gluten in anything including medication and beverages.
Have you tried a detox? They sell them at health food stores. Or you can do juicing only for a few days. Do some research first, of course.
@@raven4090 Agree. Too many foods and even liquids have gluten as an additive. Barley malt is a sweetener, for example. Read labels every time.
18 months. It will take 18 months for tour body to rid itself of gluten. Same as if you have a surgery...if a dr cuts you open, takes 18 months for your body to recover. That's why you should never let a dr schedule back to back surgeries if one can help it. I dont know the science, I just know that's how our bodies tend to work. Lifetime of research.
I have a question, and since you all seem helpful I feel this is the right place to ask. I was diagnosed as celiac less than 2 months ago, having previously had symptoms for about 9 weeks. The symptoms just started a day after I came back from a short trip to Romania and Bulgaria, I had a late night flight, barely had any sleep the night I came back, and stayed up the rest of the day. That day I smoked a cigar, which I sometimes get nausea from, and so I figured that evening when I got nausea that that was it. Until I got it again the next night also. By the weekend I had a bloated stomach and the awful abdomen pain that's seemingly very common.
Now the reason for my comment, is while it's seemingly possible to start having symptoms randomly, it just strikes me as odd. Next is that for a couple of 3 day periods every so often in the 9 weeks I'd be completely fine, and while I wasn't eating the same thing daily, breakfast and lunch were always filled with gluten. Is it weird that sometimes I wouldn't react negatively to gluten? When I went to an initial checkup at the 9 week point, I was given a diagnosis of trapped wind, and I was given some prescription tablets to break down the acid. Ever since I have had 0 nausea, and the pain had shifted to just abdominal for the 6 weeks before I got blood test results back with the celiac diagnosis, even while obviously still consuming gluten. Unfortunately I'm not sure if the blood test that labelled me as celiac, was one specific to finding the disease. I have switched to a gluten free diet, and while I do feel better than I did, I don't feel like I am recovered, or even on the way to recovery. I think I'll be looking to seek a second opinion after Christmas, but it would be interesting to hear of others insights, any and all of which will be greatly appreciated.
I feel I should add and clarify that I had pretty gnarly eye surgery on both eyes in 2017 and 2018, which I would suggest is maybe too long ago to be the potential cause for my onset of 'celiac like' symptoms. The clarification is that other than the initial phase of bloating that I had in the first week, I can't recall really having it since. Plus the reason for me taking the initial 9 weeks to go for the first appointment was because I kept periodically feeling 'better' to the point I thought I'd recovered from whatever I thought I'd had, before being struck down with symptoms again.
Thanks all
Can the Vitamin K deficiency link directly to the Vit. D deficiency and vice/versa? How long after intense Vit. D deficiency are neurological symptoms presenting in the literature and at what point will a gluten free diet NOT reverse the problem of neuropathy and brain damage (AKA gluten ataxia)?
I now have the dermatitis above one ankle, not both. It has the little blisters and severe itching. I have avoided gluten like it is poison so do not understand having the dermatitis.
This sounds like crohns disease?of which my daughter has...she has never been tested for CD.
This is really interesting and quite a strange disease.. I've had Long Covid for 2 years with many odd symptoms and it's been a roller coaster, but I've always felt like something else was going on to add to my misery... there's a lot of cross over with CD and as LC is being talked about as being another autoimmune disease, then you normally start to get more.. as I'm feeling much better these days, what brought me here was the canker sore in the mouth, I don't have the sore, but I do have that red irritating part in the roof of my mouth.. I get the impression my Long Covid is mimicking celiac disease in some ways but not fully.... I know they are saying LC patients are low in iron, testosterone, serotonin, we all have insomnia and tinnitus.. not sure about the B12 though.,...
It would be interesting to do this research in a country that doesn't desicate their crops with glyphosate. I'm pretty sure Italy doesn't soak their crops in round up and im willing to bet they don't have the health problems Canada and the USA does. I think all these diseases have alot to do with our GMO roundup glyphosate doused foods. Oh and all the toxic poison vaccines injected into people is suspect to say the least!
Europe still uses glyphosate, loads of it, and Italy has the same levels of coeliac as every other country. They're just very aware.
If the EU bans glyphosate, and they're considering it, I definitely want to know what happens to coeliac levels.
Glyphosate is terrible for us, for sure, but I think high gluten hybrid wheat and the overuse of corn in food products are a huge contributing factor.
@@sia9907 yes especially the GMO corn
Im positive i have CD. Not only do i have every single symptom, but i also carry both variants in my DNA. Ive never been tested for CD. Its so hard to not consume gluten. Its literally in everything.
@@gretchenk.2516 If they are frozen or canned, better check the labels. It’s not about just avoiding bread and pasta. And avoid restaurants who don’t realize that you can’t slap a steak on a griddle you just used for something with gluten in it. This is about avoided the tiniest amount of gluten in anything. It is not the diet for the new disease du jour that people call gluten sensitivity. Cutting out obvious gluten isn’t good enough for people with CD. Heck, you can cut out bread and feel better. It’s refined white flour. Has nothing to do with gluten.
Even the shampo and tooth paste contains gluten 🤦♀️
I got diagnosed a year ago ,as I suffered chronic constipation doctors and specialist never suspected coeliacs . I was only diagnosed after Pfizer vaccine caused me to see a neurologist.they discovered I have gluten ataxia ,had iron levels of six .was also eleven stone and now 16 months later I am nine stone four .biopsy confirmed coeliacs also .
@WhereeyescanC it could well be , I’ve noticed such a difference .it great to be feeling well ,I had forgotten what it felt like ! Good luck !
Thanks doc very informative
What can you use on that dermatitis herpetiformis
As far as I know, the only treatment is to get off of gluten. There might be cream prescriptions for it, but I don't know of any.
@@cbryce9243 i have been off for a couple months now. My Dr also had me do the uv light treatment to stop the itch from the rash. It's not found away.
Protopic ointment and a lotion made for ezema
@@cbryce9243 protopic but its expensive
@@annberlin5811 thank you
Low Fodmap diet
Excellent info
Is it known to DH on your upper back? I have it terribly when I ingest gluten.
I have ma few autoimmune diseases. I believe it could be in my intestines. I get SIBO on and off. Must use Miralax daily to make my intestines work. In a Colonoscopy Dr removed precancerous polyps. I do bleed when I haven't taken miralax. I get rashes, have had it all over me!
Thank you
Mom has it,is it heritage
Spot on.
Thank you doctor Ogie for the time you took to make the best herbal medication and also give me the best treatment ever. You are the best doctor and no words can describe how grateful I am.
No info on treatment? Oral vitamins help?
If there is a mixed picture having hb low but due to different causes ..
Why can we come back neg for celiac and have symptoms...
I would recommend that you do your research on a parasite cleaning, and a parasite symptoms and causes there is no diseases in cancers that it’s just something you guys start labeling it when it literally is either parasite, or a mineral vitamin deficiency
How do they test you for this in the UK? I'm certain i have this issue. I've lacked a lot of vitamins and having issues with low iron, B12 etc
Go to your gp, tell them you suspect you have coeliac disease and would like the blood test. Point out that low b12 and iron are consistent with the disease, and you'd just like to eliminate it as a possibility for peace of mind. You'll need to eat gluten every day for six weeks prior to the blood test. Good luck!
@@danmcdaidThanks!! I was tested repeatedly, but not one Dr ever mentioned the need to consume gluten prior to the test. Each of the Drs insisted that I had CD, but disregarded following the negative test results.
The main reason of older women having osteoporosis is because they need Estrogen!! Real estrogen, not horse urine or "the pill".
What is real estrogen and how does one get it? I read it could cause breast cancer in women over 50, but I am not sure how up-to-date that information is?
Thank you!
@@JesusSaves77799 WHO (World Health Organization) did a study using horse urine (premarin). Please disregard their information. UCLA did a new study around 2016, whose new correct information was blocked. Del-Estrogen is injectible good estrogen. Good luck getting it, doctor's want women to fall apart. Men can get testosterone shots till they die. You have to be persistent. Moving from California to Florida, was awful for me. I couldn't get it. Mayo used me as a lab rat to see how low my estrogen could get and watch me fall apart. Then they put me in a mental hospital. I don't like to use the word "hate", but I hate them. Tomorrow I'm going to my doctor whose going to have to try to get my del-estrogen approved. You need to get name brand. I don't know what's in the generic, but it's not the same at all, and there used to be a lot of generics, but now I can only find one, and it's not good. I had a hysterectomy and osteoporosis, so I fight to get it, and it's getting harder. What's really upsetting is that men becoming women, get it easier then women. I'm always joking, saying I should say I had a sex change, then I'll probably get it easier. But Del-Estrogen injectible is really the only one. Good luck and God bless you. 🙏🍀
Please do tell
@@JesusSaves77799 it is estradiol and they also need progesterone and can get both bio identical. The progesterone is called prometrium and there are several different bio identical estradiol products available. One well absorbed one is estradiol patches. These products can be prescribed through a doctor. Hope that helps.
Not true
So whats the answer . If quit all grains will body be able to absorb vitamin supplements?
You only rule out wheat barley rye and oats. There are plenty of other grains
My question is if liquor dont have gluten ,it should be ok to have!
I'm 44 year old,l was 17 when l had my first problem with celiac disease,
What happened?
In other words, every symptom in the book leading to a slow and painful death.
The “ch” in Chvostek SILENT. It is pronounced “vos-tek”.
they don't realize how awkward are things in the neighborhood people having continuous nightmares some looking for buyers and others cursing they dau they met those wicked individuals shame on the governement allowing those psychotic reasearchers stabbers and backing a mafia case terrorizing innocents for visa promises
Your explanation is as clear as MUD
Folic acid poisoning
ITS NOT A DISEASE AND IS CURABLE
If only psychopaths, sociopaths, narcissists, and borderlines could be infertile. Instead, it's people with celiac disease (likely because of the folate absorption issue).
❤