Autism & Digestive Issues | New Diagnosis | Gastroparesis
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- Опубліковано 28 вер 2023
- I am autistic and like many autistic people I have comorbidities, a connective tissues disorder (EDS) and gastrointestinal difficulties (slow transit constipation, lactose intolerance and gastroparesis).
In this video I'm talking about my history of digestive issues, and how I got the three digestive system diagnosis's I have, and what they mean for my life.
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I wish everyone with digestive issues could see a gastroenterologist as good as yours sounds like he is! Too many people are simply dismissed and told they have ibs.
IBS calls for a psychiatrist, not a gastroenterologist. It's psychosomatic and is pretty much the result of the brain overreacting to signals coming from the intestines and reacting as if there's something in there to attack. When I was diagnosed my doctor even said as much that it was the result of what my brain was doing, not something wrong with the intestine. Unfortunately, he didn't suggest that I go to a mental health provider to sort it out.
@@SmallSpoonBrigade but many people are misdiagnosed with ibs,like Ella, when they actually have a serious condition. So people need thorough investigations with a GI doctor first.
@@SmallSpoonBrigade the subconscious mind not the conscious
As an AuDHD Gastroenterology nurse this is really fascinating. I have personally struggled my whole life with eating the set 3 meals a day. I have self managed by eating little and often which seems to work for me. I don't have the diagnosis that you do because, although I work in the NHS, I try to stay away from doctors as far as possible. The model which we are working from is wrong. Our bodies are not capable of lots of big meals. We have evolved as hunter/gatherers who would eat on the go all day long. When we are socially conditioned to have sit down meals at set times, that is where the problems arise.
My daughter was diagnosed with gastroparesis aged 1, but deemed cured aged 3. She was recently diagnosed autistic (aged 17) and her symptoms have got quite bad again over the last 2-3 years. It's fascinating reading about others experiencing the same.
I love when those of you in the UK share your findings. Here in the US, our “healthcare” system is both terrible and expensive. Even for those of us lucky to have employer sponsored insurance, if you need diagnostic tests (vs age appropriate screenings) you are charged an astronomical fee. With annual deductibles in the thousands of dollars, diagnostic testing is often out of reach. Those like me rely on you tubers like you to help us get the information we need! Thanks Ella! ❤
Thank you so much for bringing up this topic for the neurodivergent community. HUGE problem with my tummy....Had it ever since the trauma started getting bad, been dealing with it since middle-school. And I’m 26 now. In pain. Still dealing. I hope everyone can find things that work for their poor tummy’s ❤
I've dealt with gastrointestinal issues my whole life too. Gerd, IBS, gastroporesis at one point during my 20's, just so much nonsense. And I'm incredibly sensitive to change in diet and very sensitive to overly processed food and food additives here in the US.
Same except that I have never been diagnosed with gastroporesis. I seem to get heartburn four to six hours after a meal instead of less than 3 hours after.
@@Catlily5I had this until I had haitus hernia oo dine due to heds
So helpful. Struggling with my autistic child with digestive issues. Very stressful. No one knows what's wrong. She's had all these test you mention. I'm glad to have some terms I can speak on and see if we can get my daughter diagnosed.
Take gluten out
Thank you for sharing this. I’ve had digestive issues (most recently labelled as IBS) of one sort or another for as long as I can remember, and have had a few tests, including ultrasound scans and colonoscopies. I do have a long, tortuous, poorly toned colon. But I don’t know if I’ll ever get to the bottom of my issues. I’m not surprised you’re grateful for your gastroenterologist!
Hi Ella, thanks for another great video. And welcome to the Ridiculous Amount of Multiple Diagnoses Club. I'm sorry you're a member. I think I know you're also a member of the Positive Attitude Club, so hopefully that'll get you through. Thanks for doing the job that you can do and remember to take care of yourself. (It is often not as easy as it sounds, isn't it?)
Omg this describes my life! I was also diagnosed with stomach migraines as a kid 🙄 after being dismissed so many times over the years this gives me the boost to try again 😊
I've dealt with digestive issues pretty much my whole life. I am audhd and this has been miserable. So much missed work. So much pain and discomfort. After trying so many meds they said I may have to take Miralax the rest of my life. It works. I'm still uncomfortable now and then but it's changed life for the better. Thanks for all of your videos. At 61 years olds it's comforting to know I'm not the only one.
Thank you yet again. I think iy is best to think of the gut as the early brain
I've needed to make a GI appointment for along time. I finally messaged a doctors office today to make an appointment. Thank you.
I have stomach issues too and have had various tests over the years but no one actually wants to take it and run with it and follow it up….I think they hope I’ll just go away….diagnosed with Autism, fibro, A&D, asthma, IBS, Raynauds, muscle spasms….I sometimes feel like giving up as no one takes me seriously so I now don’t go unless I think it’s an emergency…..and my stomach is really bad. I too have nausea, constipation/diarrhoea etc and it’s no fun. I’m glad you got to the bottom of yours.
I'm so sorry to hear about your relentless struggles. Sounds so exhausting and demoralising for you. X
Sounds like hypermobility to me. Check out the work of Dr. Jessica Eccles at Brighton University - she's finding loads of stuff out about this and the links to neurodivergence. ❤️
I'm dealing with persistent stomach issues over the last few months that seem to telegraph milder symptoms I hadn't made connections to before and just got waved away by the gastroenterologist so this video is pretty validating while I'm pretty low about it. Thank you!
I was also told by a very young GP that it takes different times for food to be digested. I had low stomach acid and literally couldn’t digest food for very many hours, as my food piles up inside me. 😮😢
Awh, I'm glad you got that sorted out. I have stomach issues too. You are looking super cute today, BTW.
I’m so happy I found you!! I also have autism, adhd, and gastroparesis. I totally understand the feeling of maybe I’m just making this up or everyone feels this way and I’m just weak. It’s so validating to finally get a diagnosis! It took 3 years for me, which felt like a long time, but I can’t imagine how you must feel after not being believed for 20 years!
Very sad how the connection between autism and GI issues has been ignored while it applies to the majority of us
Thankyou Ella. You have helped My GF and I understand why She feels sick all the time, and has sharp pains in her stomach. Your a superstar.
My whole family has digestive issues, and im sure at lease 3 of us are on the autistic spectrum. Only one, my brother has a formal autism diagnosis, but we all have celiac and chronic joint pain and tons of other comorbid issues. Really fascinating how all these bodily issues happen together in most autistic and nurodivergent people.
Do you have muscle pain to
Very interesting tests. I got some digestive problems too....maybe I'll go back to my gastroenterologist and ask him about it. Thank you.💜💜💜
Congrats on finally being able to get answers. I'm really happy for you. I'm currently going through my own struggle with physical health issues. My biggest worry at the moment is not being believed or listened to as I'm non-binary, fem presenting and visually impaired on top of being black. I feel like I've gotten better at advocating for myself as the years go by but it's still hard to trust in doctors to actually listen to me. I've been experiencing a lot of stomach and back pain that leaves me breathless all the time and really hope I can get some conclusive answers eventually as on top of my chronic pain it leaves me feeling miserable and hopefully a lot. Friends and found family are a blessing especially now.
Spot on. A person who's had his entire life huge digestive problems was given a first mild medication during later- in- life AUDHD diagnosis period.
Turns out that particular medicine first caused nausea but well administred (at right time a.m. and middle of first meal and drinks) stopped all extreme retention or excessive discharges.
Patient only understood after stopping medication that stomach and bowel are so neuro- related. Medics knew and that's why the medication oozed and erased some AU- symptoms. It helped them diagnozing and confirmed to seek out AU spectrum.
Patient was so relieved those disabling symptoms were taken care of. People with diverticulosis or Chrohn's disease have a clear diagnosis and become a patient taken seriously. People with AU- related painful digestive issues are being put in the " oh, I.B.S. imaginative sick or crybaby patient" box and can get addicted to anti diarrheal, anti constipation drugs, painkillers and / or develop serious eat disorders.
I had the same problem Doctors keep giving me tablets appointments after appointments I’m sure they think I’m a hypochondriac but every time I eat I get a lump under my left side very uncomfortable. Going to have Camera gone soon plus I have adhd with fibromyalgia, not eating for days feels normal. When I do eat after a day or two the pain comes back , brilliant video ❤❤ i’ve had gut problems for many many years as well
That sounds very similar to the issues I have had. The only thing I have found to help is drinking a ton of water. It seems to help dilute the solids, but it is not always effective
I'd recommend the book fiber fueled or perhaps better, the fiber fueled cookbook which contains tips on how to manage histamine intolerance, which I believe is a common problem for people with nervous system issues. I have M.E. and ADHD and feel like theses are connected to gut health too.
They are threw mcas
Have you looked into Fabry disease? I have… I think all the symptoms I’ve seen you mention in your videos (just started watching, love what you’re doing).
I didn’t know I had this disease until I was 36 and it unraveled the true underlying source of my symptoms.
Truly, I suspect that beneath most neurodivergence is a driving, physical origin.
I hope you keep finding ways to thrive. “Suffer well”, that’s what I tell myself.
Would be great to hear what piece of advice on food and ev meds you will get
Digestive tract is also generally responding well to herbal tea treatments. The challenge here is to find a very good experienced phytotherapist to design therapy for you…. The usual issue. I studied medical herb therapy for many years, and I don’t find myself confident with that yet.😅 and it is often times not paid by insurances.
AUDHD'er here...gastroparesis, EDS, MCAS, POTS.
Interesting! I got diagnosed with gastroparesis in college. Wonder how many autistics deal with this?
Lots of autistics have co-occurring GI issues including IBS but not sure if there’s stats on those.
@@lucfierslightthere are stats definitely, and some were studying this link but due to conflicting interests, some companies fought and had the studies redacted. They were ranging from quite high to almost every single one in some form, however.
@@DivineLightPaladin Wow… 🤦 Well at least we hear it anecdotally from others including how we are usually hypermobile too. There’s always hope for research in the future. It just requires $$$.
I also have had gastroparesis! My digestion is better now, but it can still flare up. My lack of interoception can sometimes lead to eating more insoluble fiber than my stomach can actually handle..
I'm so glad they found out what your issue is! I have episodes of slow transit with nausea that have led to ER visits. But I wasn't given any of those tests beyond an endoscopy. I really deeply disliked my gastro specialist and will never see him or the other gastro specialist who did my follow up. Both are rotten clinicians and uncaring people. My GP is great and had told me to expect the same kinds of tests you got with the radioactive meal and the other one too but neither specialist took my issues seriously. My rheumy specialist thinks I could have EDS too. How did they diagnose yours? Did they do genetic testing? I've heard EDS and autism are often seen together. Hope your team takes very good care of you!
Having been diagnosed with idiopathic gastroparesis (before recognizing my neurodivergence...) I am really glad to hear you're getting some good support and assistance! There are some good resources online - Crystal Saltrelli has some really good tips and info! (She's a professional, registered nutritionist and her advice was helpful for me)
Same! I suspected this when I heard you mention you wake up in the middle of the night with intense stomach pain. I have the same issue and have to take motility meds with large meals.
Thank you very much for these videos. It is so kind and brave of you. We do need this to normalise our experiences. About you dietary issues you sound worried but... you have lived with all your life and you are pretty good. It can only get better.
I Also have gastroparesis ( eds, pandys, pots etc) and it took me years to get a diagnosis on the NHS but i did get the same tests as you and im now tube fed via an NJ tube. The fight for answers is not enjoyable especially when it hampers quality of life so much !
I suspect I have Gastroparesis, and I had one test that went funny. The doc gave me some meds that speed up my digestion, and they help, so yay, but I don't have a Gastroparesis diagnosis, which I would find helpful. I'm not sure what to do at this point...
Interesting - I think I need to revisit my gp!
Oh Purple Ella I have the same!!! Ehlers Danlos, ADHD, Non-Verbal learning disability, and many digestive issues. - recently found to have diverticulosis and partial obstruction…I also suggest you get your hooha checked, because with your history you may have a rectocele as well (i do - needed surgery, but pelvic phisio therapy can delay the need for surgery!!!
How did you get your EDS diagnosed? A certain Dr, certain tests? I’ve wondered that too.
I have all of the disabilities that you described even down to learning, RA, Fibromyalgia, ADHD, getting tested for autism in next couple of weeks.
@@sharonvaldez9059 I was diagnosed by a rheumatologist in my forties, after I had a few pelvic floor surgeries. My latest update is that I have had a banding procedure for my internal hemorrhoids and it has helped me enourmously!!!!
@@sharonvaldez9059I have to but no problems verbally late diagnosed autism last year heds
That’s amazing you have a wholistic approach to your care. ❤
I wonder if it’s related to dysautonomia, which I understand is common in autistic people.
I am so glad you have been able to get some answers and plans for going forward, after years of being dismissed as you describe. It is so utterly disheartening to have to go to the lengths many of us have to go, to advocate for ourselves, to be heard and taken seriously. Wishing you the best support and outcomes as you find ways to cope with the newly diagnosed condition.
Wow.. Interesting and enlightening!😊
Thank you!
Celiac disease, gastroparesis, Eosinophilia, milk and fructose malabsortion, chronic duodenitis, a ud bile malabsortion, estrogen dominance, adhd, schizoaffective disorder,, chronic low vitamin d, folate, b12 and iron.
I'm an adult-diagnosed autistic woman with supposed "IBS," "acid reflux," and apparently lactose and non-celiac gluten intolerance, despite barely being tested for anything but the intolerances (one x-ray for the IBS on a day that it wasn't really acting up, nothing for the reflux).
I don't get the burning sensation or belching or any of the common symptoms of reflux, I only get regurgitation, and it came on very suddenly one day out of nowhere! I seemed to have caught a stomach bug but it was different than any I'd had before, and then the regurgitation just never went away. It wasn't a gradual progression or something I've had since childhood. It's mostly under control now after a long time on a PPI and getting a bed frame with adjustable head and foot height (propping yourself up on pillows never works, ever, in my experience. you always just slide off them). Can't eat anything for at least a couple hours before bed and even then sometimes I'll still have reflux happen.
I'm so sure there's something more going on with me but doctors always brush me off. I got to see a gastroenterologist for a swallowing-related issue (had this since I was born but had very recently worsened for some reason, but it's calmed down back to how it used to be now) and was supposed to have a study done for it, but our insurance sucks (good old USA) so I couldn't afford to get it done so who knows what's up with that.
Already being diagnosed with anxiety doesn't help a doctor take you any more seriously, either, and my own imposter syndrome makes it hard to even believe myself sometimes. "Am I just overthinking it? Am I a hypochondriac? Am I somehow playing it up for attention even though I actually go out of my way to hide when I'm having health problems even from my partner?" Medical gaslighting/dismissal messes you up.
Anyway. All this to say thank you for sharing this, it gives me some hope that maybe one day I'll get it all figured out and be able to live at least a bit more comfortably. I'm really glad that you were able to get a good care team to manage your symptoms.
Wow you have just described my symptoms that I've had since I can remember they just said it was ibs
I have this constipation, no investigation, dx IBS. I use psyllium husk because the lactulose was hellish.
Gastroscopy revealed a small hiatus hernia but no explanation for the gastric reflux.
Can’t imagine the NHS spending any money on this for me.
I had all these tests on the NHS. I have GP and I'm now tube fed. It did take me years to get help , but I got it.
Thank you for sharing this - it’s so informative!
I’m glad that you were finally taken seriously 🙌
My 13 year old also has ongoing stomach problems (from birth - I used to have to mix gaviscon into his bottles🥺) He now takes omeprazole every morning and I’m worried that he’ll be taking it for life and I thought this was a short term medicine (I know it causes the body to not absorb B12 long-term) He’s Hyper sensitive to every twinge, pain, rumble in his tum - it’s overtaking his life and getting worse, not easier, as he gets older - trouble is, he would be too scared to take any kind of tests you mentioned (if they were needed) .. it’s not helped by the fact that his diet is so so limited and he’s also terrified of being sick. I also deal with long term stomach issues and it saddens me that he does too.
Finding your content today feels like a gift from God.
I've had stomach issues since puberty; mainly nausea and stomach growling constantly. I actually got put on a muscle relaxer at age 13 and have been dealing with it on and off. I had barium test done years ago and found out I have GERD because my throat flap doesn't close completely. I hope the medicine helps
Birth control caused this for me as a teenager, and it went away when I stopped 😮 so could be hormone related!
Good for you, Ella and welcome to the tummy colleewobbles club!❤
Sure, have had food issues my whole life. As a teenager, I had several barrier meal tests as a teenager because of suspected stomach ulcers. Nothing ever came of it, no doctor has ever been very helpful. I now know to not have lactose or gluten products. I also can’t eat beef and lamb, I get severe cramps from it. I’ve had my gallbladder removed so stay away from greasy foods also. I really just have to be very conscientious of the food I eat, then I’m okay.
I have had gut issues for as long as I can remember. My mom told me that she had to shove suppositories up me when I started eating solid food. I also have Asperger’s. Coincidence? Maybe. It also confirms the suspicion that I was born with Asperger’s. My mom said I was different from the moment I entered the world. I never liked being touched or cuddled like a regular baby. I only tolerated her and my dad touching me, which is probably why I got potty-trained so quickly. Now this gut stuff has come back to bite me in the ass and I’ve been trying different things to help. I’m lucky that my aunt is an ER nurse and has pointed me in the direction of great supplements like Thorne Magnesium CitraMate.
I have been having symptoms since 2018, like a lot of vomiting. But in July of last year my stomach would bloat like crazy if I ate even the simplest meal, or even got worse with a heavy meat meal. Then in January my problems became worse. I went to the ER 5 times in 30 days and kept getting dismissed. They even said you're nervous, when I was very calm, here's a Valium. Then I went to my PCP and all she said is you do need to see a gastroenterologist but you are way too anxious, you should see a psychologist. When I was very calm. This month both me and my mom did a gastric emptying test cause she was going through the same thing, and yesterday I found out my mom has Gastroparesis and today I found out that I also have it. So I was not crazy. I feel like Drs took me as a crazy person cause I kept telling them a whole bunch of symptoms and that treatment actually got me to be scared of them. But my gastroenterologist was super nice and actually listened to me.
I have Gastroparesis, was diagnosed with it in 2022. I also have autism and recently diagnosed with ADHD. Gastroparesis sucks.
At least you got the capsule endoscopy. I needed to have a biopsy of the duodenum, and they went through the mouth with the camera taking pictures along the way to see what was going on and only after going through the stomach did they get to where they needed the biopsy. The doctor didn't want to do it at all because I told him absolutely no anesthesia beyond something for the tongue and honestly, it wasn't really that big of a deal.
I did also have a standard endoscopy and colonoscopy, they were not pleasant!
I very much related to aspects of this
Thank you for talking about all this because I've struggled my whole life with stomach issues. I have this intense fear of eating because of it. After my autism assessment this coming Monday I will have to ask my doctor about sending me to a gastro doctor
I got my diagnos at 47 years old adhd and Asperger’s síndrome.
I have problems with my health asma gastrointestinal and stomach problems, but went I started with Concerta 54 mg my problems almost disappeared, now I am sensitive but far away from before
I’ve been told by two gastroenterologist at different hospitals to come back when I have an ulcer or cancer 😮😢
I'm glad that I didn't get them. I nearly starved to death do to a bad H. Pylorii infection. If I had waited for it to get bad enough for an ulcer, I probably would have died. As it was, I could eat basically a cup of yogurt a day and lost roughly 30# over the course of the month before I realized that it wasn't going to get any better.
It took the better part of 20 years before my go-to response to excessive anxiety in the morning wasn't to just go to the restroom to eject anything that might still be in my stomach.
Find someone else! That's horrible.
Hi Ella, unfortunately, I haven't had too many good encounters with doctors, therefore I'm not digging into one thing I saw in a documentary once (I cannot find it anymore, but maybe you could ask your doctor if it could be related in your case. The case I had heard about was a nerve being squeezed by the diaphragm, reducing the speed of the digestion / leading to pain.
Yes. My father had lifelong gut problems. I had no serious gut issues until early 2020, when suddenly, I had to be admitted to hospital. Good job I'm not an emetophobe, or squeamish, because the symptoms were like something from a horror film. Turned out that excesses acid was dissolving my duodenum. Nice. 🤢 Anyway, all is well, now that I have medication.
My young adult daughter endure similar issues,( she is Autistic & ADHD) doctors don’t seem to be of any help . The continuous body pains, digestive issues plus the numerous medical debt has now lead to severe depression. I wish doctors actually existed who could help ;SMH and being a black female put an additional level of dismissiveness to the issue
Are you also emetophobic? I've been struggling with that phobia over 30 years now :(
Anyway I'm glad you now have a proper diagnosis and can act upon it.
I had to look this up.
I was as a kid. If anyone did, I would subsequently also ____.
Now, I kind of grimace but only in witnessing some poor being experiencing said act in my presence.
Liked and subscribed
funny, i just went to the doctor because of digestive issues. I'm also audhd. They told me they would refer me to a specualist if i'm not getting better in 3 months. We'll see😊
If I eat ice cream I’ll be in unreal amounts of pain and NEED access to a toilet within 20/30 mins, sometimes less, the pain will continue into the next day and wakes me in the night. Lots of food causes me pain but ice cream has to be the worst, I just don’t eat it at all now 😭
Its caysed by mcas gluten sensitivity un alot if us with autism heds
All this radioactive stuff doesn’t sound good. Do they give you something to get rid of it after the fact?
I really hope that in the last 20 years someone did prescribe you anti-nausea/ anti-emetic medication... But it sounds like maybe the NHS said you did not qualify for relief from nausea and v. until you had a diagnosis that they felt was real enough??? Is that how things work there? I'm fairly certain that no human being should want to make you to suffer like that.
Also, please tell me that your doctor's office at least give you a call to tell you you did not have cancer, even though you have to wait weeks and weeks for the full follow-up appointment.
(I don't live in the UK, but I am familiar with being dismissed by doctors. I hope you had a least some symptom relief up to now and that the new interventions will help even more.)
I was given anti emetics around two years ago, but only once I was under gastro, and yes they did let me know I didn't have cancer sooner, sorry I didn't make that clear.
Does anyone have the problem of vomiting when sexual climax arises? Or getting too hot and have vomiting and diarrhea?
I wonder if the carnivore diet would work for you. I've been 2.4 years on it and my digestion is so much better (and a bunch of other health issues). 😊
probably not because I am vegetarian
Ahahaha didn't know such bizarre tests existed