Silent Celiac Disease Symptoms: Celiacs Don't Always Have Digestive Problems
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- Опубліковано 3 жов 2024
- When 770 celiac disease patients were evaluated, only 50% of them had digestive problems or villous atrophy. The other half had symptoms affecting bone, liver, hormones and nervous system. Learn more from a doctor and author.
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Dr Vikki, I wish there were more doctors like you in the world!
I've had very severe symptoms all my life - severe hormone problems (never had a period), severe digestive issues (severe diarrhea and bloating to the point people have thought I was heavily pregnant, extreme pain), malnutrition, numerous allergies, loss of most of my hair and most of my teeth, severe fatigue, constant battle with severe anemia and other deficiencies, lifelong estrogen deficiency, extremely brittle nails leading to frequent infections. But doctors treat me appallingly - they did one blood test for Celiac over twenty years ago (in the late 90's) when I was already on a glutenfree diet, and so because that came back borderline, they are insisting that I am not Celiac.
However, these blood tests have a high failure rate and more often than not show a false negative, also the fact that I was already on a glutenfree diet and it still came back borderline means that my Celiac must be very severe - and, given the dramatic symptoms, that wouldn't surprise me. Celiac very much runs in my family, with both parents and both sets of grandparents affected, further back is unknown. Allergies also run in the family on both maternal and paternal side.
Instead of getting helped, I've been subjected to horrendous abuse from doctors - accusations that I must be anorexic (I've never been anorexic), which got so bad I was forced to take witnesses to the doctors' office to confirm that I do eat to prevent the doctor from falsely diagnosing me with mental illness, then accusations that I must "just be imagining that I eat", accusations that it's all "just in my mind", that I should just put on lots of weight as I "must weigh at least 76 kilogram" (I'm tiny and for my height, frame and ethnicity that would be morbidly obese!), accusations that I must have periods but that I am "just imagining that I never had a period", accusations that I am "just imagining" my severe alopecia - until it got so bad I had to have wigs prescribed and get them via the NHS (I'm in the UK) to this day so I can't be "imagining" having lost most of my hair, then the constant accusations from dentists who don't know that Celiac can cause tooth loss, don't believe me when I tell them, and so regularly assume I'm just not brushing my teeth and sitting around eating candy all day long.
I'm being denied any and all medical support, and my constant deficiencies including anemia gets cried of with "just eat more", my fatigue I don't even dare to mention as I once hinted at it and was met with "mental illness" and "antidepressants" until it transpired that I was yet again severely anemic, my non-existent periods have never been investigated and I was just given a hysterectomy at the age of 31 due to extreme pain without investigation of where the pain came from and why I never had a period - until the pathology report came back an entire A4 page of everything that was wrong with my uterus and ovaries! Literally anything you could think of that could possibly go wrong gynecologically - I had it!
I've been left to my own devices, I struggle to afford a glutenfree diet (due to the lack of official diagnosis I don't get glutenfree products prescribed), and with numerous food allergies on top I stick to a very repetetive diet that still causes me pain and digestive issues - though far, far less so than before I switched to glutenfree.
Here in the UK, one cannot just switch doctors, and all NHS doctors are like that - just fobbing patients off with "you are just depressed" and a packet of antidepressants, so it's not a case of just switching doctors. I'm at a loss of what to do and feel like if this carries on, I'm not going to make it much longer!
I was finally diagnosed with coeliac disease after having elevated liver readings and joint pain for over 10yrs and no I do not drink alcohol. I feel that most doctors do not look outside the box and are not trained to ever think about checking patients for CD My reading came in at nearly 5000 😮 and should have been below 20. Fortunately for me, it was the foresight of a gastroenterologist who advised the GP to check my bloods even then the GP said I did not have the classic symptoms. Not everyone has the same symptoms. Doctors should be more aware that this disease is more common and should not fob off patients on a let’s wait and see what happens basis.
Your symptoms sound like mine! I have had no answers for these symptoms! Did they just check bloodwork or did you have a biopsy?
I was diagnosed during covid and at that time they were not performing biopsies. I got a telephone call from the gastroenterologist who advised me that due to the extremely high readings of TtG i definitely had CD. I was to go without gluten for 6mths if there wasn’t any change in my bloods then an endoscopy would be performed when restrictions eased during covid. 6 months on my Ttg reading dropped to 139. On my last
reading it was 10. Gastroenterologist was happy and now so am I. My liver readings are now all normal and my joint pain eased. Hope this helps you and I wish you every success with your CD journey ❤
I'm surprised that depression and ADHD weren't mentioned. Very strong link between brain issues and celiac disease
ok.my bad...depression mentioned later on but not as a symptom of CD and that's what I meant in my previous comment. The major symptoms I experience with CD are all brain-related and of course with all of the microbiome research surfacing one can see how and why CD is so highly linked with brain issues.
That's true. It's a long link of diseases and conditions - difficult to mention every single one.
Excellent video. Thanks for your work dr Vikki.
I have extreme fatigue and I find that I can't tolerate dairy but when I stop eating all dairy I get calcium deficiency and it's a vicious circle. What could be causing calcium deficiency?
I have almost every symptom with profound fatigue-usually in response to eating. My doc says its all in my head and recommends Benzos and SSRi's.
That's unfortunate. I would be happy to try to help, if you'd like. Consider contacting us for a phone consultation - call 408-733-0400.
Dr. Vikki Petersen thank you. I will do that.
I just got my health report from 23andMe and it said I have both gene variants for celiac disease. I’m not happy about this... but I am one of those people who has been seeing the same doctor for 2.5 years, and they’re telling me I’m just depressed. I’m so tired of being told I’m “just” depressed. Thank you for saying what you said about that. I absolutely agree that symptoms don’t just come from nowhere.
I’ve been dealing with severe chronic fatigue for many, many years. I didn’t have healthcare all my life until a few years ago. I’m ALWAYS too exhausted to function, low appetite (I really struggle to eat), suffer frequent headaches, and have dealt with anemia.
I think I’m going to switch doctors and remove gluten from my diet. If you monitor these comments, do you have any other suggestions? My blood work always comes back “normal”, my thyroid has been checked, and my anemia went away after an iron infusion.
Thank you so much.
It’s actually eerie that you basically repeated verbatim the conversation my doctor and I have. I’m always begging for help and they just think I’m crazy.
@@brixtonmoss2573 You're not crazy and it is so frustrating that doctors treat you that way. We'd be happy to help you. You shouldn't have to continue suffering. The best way to assist you is to get more information on your condition and health history. Consider contacting us for a free phone consultation - 408-733-0400.
Hello Dr. Vickie, conciliate disease, give you severe muscle spasms in your legs, sore feet and what seems to be poor circulation in your calves and feet?
Wow thank you
Is there a chance that one can have celiac disease even if the blood test for celiac was negative(I didn't eat a gluten free diet before)? I had iron deficiency that didn't respond to different pills eventually I got iron infusion(but symptoms didn't improve). first symptom is hair loss from my scalp and from eyelashes,eyebrows, legs, armpits and basically all over my body(hundreds everyday. was diagnosed with telogen effluvium. its been going for 18 months),yellowish ridged nails(it never was like this before), unexplained weight loss, geographic tongue, my stomach rumbling no matter what I eat, I have mild constipation now, extreme fatigue and memory problems? my hematologist ruled out lymphoma and said I need to get evaluated by gastro for the iron deficiency. all my blood tests were all good(full thyoid panel etc) except for the iron. I'm 27 male. was healthy all my life before these symptoms.
There is a condition called non-celiac gluten sensitivity, which cannot be detected by the blood test used for celiac's. That may be the case.
I was diognosed with celiac disease when i was 5 yo now iam 15yo and ihave no symptom of celiac disease and i eat gluten could this mean i am healed. And how to cure dermatograhism currently i am facing it it is irratating pls tell
Hi Dr. Vikki, your videos are so informative and helpful. I’ve been struggling with my allergies... I have hypothyroidism and was still loosing weight so my doctor suggested gluten allergy test, in the blood test ttg levels were extremely high around 150 but villous atrophy was normal in endoscopy, although I have no symptoms other than weight loss and fatigue. Do you think I would be asymptotic or non celiac with gluten intolerance?
Yes, that is a possibility. Hypothyroidism and losing weight ARE symptoms of a gluten problem, and your lab test is also positive. If you're ready for answers, consider contacting us for a free phone consultation - call us at 408-733-0400. We'd be happy to help.
@@DrVikkiPetersen both of my parents have hypothyroidism but not gluten problems at all so maybe I just have thyroid issue because of that? Also losing weight because of malabsorption would mean biopsy not being normal right because of the damaged villi? But mine was perfectly normal. It’s so confusing.. it’s wonderful that you’re helping so many people. Also I have no iron deficiency or low haemoglobin and white blood cell count, lymphocytes etc are also normal. Generally when ttg is positive but biopsy is normal with little to no symptoms.. what is the evaluation on that?
@@DrVikkiPetersen also does being ttg positive mean that I’m a potential celiac? It doesn’t confirm the disease right?
Mouth Ulcers were my main symptom🤷🏽♀️
Digestion does begin in the mouth. I have had many patients suffering with that symptom. We're happy to assist you if you'd like. Give us a call for a consultation: 408-733-0400.
Hi dr vikkie peterson i always watch ur vedioes but all r old like before two years ago or three or one no one latest why?rather there is no new research about celiac
Hello. I speak about the whole body and a variety of conditions, not just celiac disease. I recently did one about antibiotic use and increased incidence of celiac disease in children. It will probably be up this week.
Hi Dr Peterson
Do you have contact details im based in the uk and have been unwell for 9 years lots of celiac symptoms....my doctors here havent been too helpful and diagnosed fibromyalgia
Love and best wishes
Helen x
We do treat in the UK Helen. I know it can be difficult there to get a true root cause evaluation and treatment. We would be delighted to help you. Consider contacting us for a consultation: call 727-335-0400 or email newpatient@rootcausemedical.com.