I've just recently had a Behcet's flare-up and when I do I always have stomach issues, i.e. nausea, diarrhea, loss of appetite. And of course I have the genital sores, joint pain, fatigue, and not sleeping well.
But with this flare-up my stomach issues were a lot of bloating, and indigestion. I've never had that before.
I did some research and Professor Robert Moots Rheumatology, Director, Behcet’s Syndrome Centre of Excellence stated the following .....
"Many patients with Behçet’s experience abdominal pains, and symptoms similar to “irritable bowel syndrome” (bloating, diarrhea or constipation). Camera tests such as colonoscopy / OGDs are frequently normal despite symptoms, with only about 1 in 10 symptomatic patients having visible ulceration or inflammation on these tests. Symptoms may respond to irritable bowel syndrome treatments or, when ulcers are present, by treatment with immunosuppressive drugs."
I was surprised because I hadn't attributed my bloating & indigestion ("similar to IBS") as having to do with my Behcet's.
Just curious if others have had similar.
Thank you!
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Psalm116
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Boy I love this site. More or less 24 years ago I was having some stomach issues, they sent a scope down, and I had three inflamed spots on the top section of my stomach. The Gastro guy recommended Prilosec or something like that and sent me on my way. 20 years ago I got diagnosed with Behcets, roughly 10 years ago, saw another Gastro guy and had the same problem… Three inflamed spots on the top of my stomach. Once again, the doctor told me to take Prilosec or something. I would say probably three or four times now in the last 10 years, my flareups entail problems with my stomach. (My current issue for these last two months)
The place where I had those three inflamed spots is where my stomach always hurts. I get bloated, I have nausea, I have diarrhea… All the fun stuff. Now there may be doctors out there that will say, “oh no that’s not Behcets “, but I’ve decided that any place I have small blood vessels, I can have Behcets issues .
I love this site because when I come here, I find people who have symptoms similar to what I have in spite of doctors saying, “Behcets doesn’t do that.” So yes, I have problems with stomach issues. Just like any of the other Behcets issues I have, I just try to take care of myself, eat right, and get a lot of rest.
I totally agree with you, as I have constantly been told that my stomach issues are not linked to Betchets, but then I had some genetic testing done at the Royal Free Hospital and they found a gene that was linked to Betchets and Gastro problems, so the Rheumatologist is now very interested in my case. She was the one that pushed for the genetic testing and she was right.
Thank you for sharing your post. Just one question, I have never heard of Prilosec, can you please explain what it does and how it helps?
I am so sorry to hear about your stomach problems. I too have Betchets and it has taken 8 years to get diagnosed. My main problem is stomach issues. I have constipation and a lot of pain in my upper left quadrant. When I had a diagnostic laparoscopy, they discovered lots of adhesions, which they cut, as my stomach was quite stuck together. Doctors were perplexed, as I have never had a previous stomach op to cause scar tissue/adhesions.
The only relief I have had from this is in December 2020, I felt something burst in my stomach, I felt really nauseous all day, but by the evening I felt completely pain free, it was amazing!!!! However, after about 12 hours the pain started again, so I’m not sure if that was an ulcer that burst or not. Doctors cannot explain it and just keep using the word idiopathic, so I have no answers regarding this. However, I just wanted to let you know I fully understand the bloating and indigestion you are experiencing.
Thank you, Suzy, for sharing. I'm grateful for this site as it has always been SO helpful for me to connect with others that are suffering through Behcet's. You gotta love it when the Doctors don't know and they say it's "idiopathic", ugh!
Prilosec, like other proton-pump inhibitors, blocks the enzyme in the wall of the stomach that produces acid. By blocking the enzyme, the production of acid is decreased, and this allows the stomach and esophagus to heal.
I have always assumed that Prilosec worked similarly to Pepto-Bismol, Mylanta, or even Tums. That it coats your stomach, protects any sores, and gives your stomach a chance to heal.
Here in the US all the above are sold over the counter.
I should probably give it a try, but I have this thing about taking a lot of medicine. Also, I suppose I figure they really haven’t diagnosed what’s wrong with me (when it comes to my stomach). So, I have a hard time taking a medicine the doctor is just sort of throwing at something when he doesn’t really know what’s going on with me.
Although, when my stomach does bother me, it doesn’t happen very often, and the pain and discomfort isn’t greater than my desire to not take added medicines. So, I haven’t tried it yet…
Thank you for your reply. It's always comforting to hear from others and know of shared experiences. Thus Behcet's is a strange disease & a lot of Doctors don't know much about it. Take care of yourself & thanks again.
yes i used to have a ton of issues, including chronic thrush, ulcers, massive weight loss, no appetite.
i was so desperate, i ultimately did the candida diet religiously for 9 months and that is honestly what gave me my whole life back. I am no longer on meds or immunosuppressants.
its like keto with no dairy and def no carbs. It was hard but so so so worth it.
i do not have bloating or poop issues anymore besides the occasional hormonal week but its nothing to mention. no ulcers anymore. my skin cleared up, i have energy again. no weekly infections. i 100% attribute my healing to my change in diet.
cut all the sugar- eat whole foods. your body will thank you!
Thank you, I appreciate your input! I agree that diet matters.... I don't eat gluten, and dairy. I really work at not eating sugar. Keep up the good efforts. 🙂
Hi, I really enjoyed reading your post and I am interested in the Candida diet. I don’t eat dairy, spicy food or gluten, but I struggle not having anything sweet, however, I know that is not good for me. How do you find meals with no carbs or sugar?
Thank you for sharing and take care of yourself, you certainly seem to have cracked it with diet.
candida is very close to a clean keto, how i went about it was :meat: fat: vegetable. choose low starch veggies (greens and peppers) no corn, potatoes, carrots.
it is a very hard diet, but take solace in the fact that it is a temporary healing solution-chronic inflammation takes months to years to resolve. i did it for nine months and it sucked, i mean,. it really did. but how good i felt around day 10 and continuously after was SO WORTH IT. i now have carbs back in my diet without joint pain or my mouth bleeding.
some ideas off the bat:
salmon with dill or rosemary, lemon and EVOO, green beans or sauted spinach and mushrooms
steak and brocolli, use evoo or coconut oil and any seasonings.
roasted chicken with sauted peppers and onions, could make it more of a taco/fajita flavor
nothing from a box, no carbs or processed sauces. at one point i made my own mayonaise- looking back i think using jar would have been fine... but i tried to adhere as strictly as possible.
eggs and bacon (use a high quality)
snacks i had in very very small amounts- hummus and those terra chips (this was a few weeks into it)
but with the lack of carbs and the increase of protein, you wont find yourself hungry. And the amount of fat should also keep you satisfied (coconut oil, evoo).
i have an ig with the food i make now bitterbiologist. it is still sugar free. there are carbs now, but i can tell you how to omit (its usually just a side)
I applaud your consistent discipline. We done!! It is VERY hard to change our eating habits and learn to eat clean whole foods. About 8-years ago, I was having such bad issues when I ate any kind of bread (i.e., rolls, bread, tortillas, cake, etc.). I was tested for celiac disease, thankfully it came back negative. But, I wanted to know why I suffered so much when I ate that stuff. So, I decided to read the book "Wheat Belly" .... very eye-opening to the damage wheat does to our body, and the inflammation it causes. I finished the book and made a vow to go off ALL gluten and ALL gluten-free products. It was the BEST decision, but it was very hard. Once I got past the first 2-weeks it was easier and I didn't crave all that stuff anymore. And get this!, within 6-months my wedding ring was too loose, my shoes got too big, had to buy all new underwear ... because so much inflammation went down in my body! He says that in his book - that you will notice the inflammation go down. It was amazing. And I felt amazing.
What was hard .... I worked full-time when I went through these changes and watching everyone eat a sandwich, or a burrito, etc was tough. But, the cravings went away and I was good to go after that.
It's discipline to take care of ourselves, but well worth it!!
YES!! My stomach problems are a huge issue for me. Bloating, constipation, pain, reflux … it’s so bad when I’m having a flare. I’m waiting to see the Centre of Excellence now but I’m convinced they are symptoms of Behçet’s. I tend to drink Gaviscon like it’s water and take buscopan like sweets 🤷🏼♀️ Just another thing we need to deal with. Seeing you all my thoughts. Hopefully you can get some help!
Wow! Sounds like what this last flare-up was like for me. When I'm not having a flare-up, my stomach is ok. We don't eat fast food. I prepare all our meals at home and we eat really healthy, but when I have a flare-up .... ugh, it's a bummer.
Thank you so much for sharing. I hope when you get into the Centre of Excellence they can confirm what we all experience with Behcet's.
Hi TNBecRay, I am also waiting to go to the Centre of Excellence in London, but I have been warned they may not concentrate on stomach issues, it sounds like the lead person at the Birmingham one has some knowledge of Gastro Betchets. This is why I love this site, as there seems to be a few of us with these stomach issues and we all have Betchets.
Just seen this and thought I would add on my situation as might be useful! I have had random symptoms all my life but then at 51 everything happened at the same time including awful stomach pains diarrhoea - I was losing 1kg a week. I was diagnosed with Behçet’s and this was then confirmed with the London Behçet’s centre. Over the next few years I was still losing weight and my gastroenterologist who I was then referred to, after carrying out a colonoscopy said there was no sign of typical crohns inflammation yet my fcp test was through the roof and in his view the symptoms I had was due to Behçet’s. Either way it’s treated the same he said and as by now I had lost 10kg and was 55kg and a frequent visitor of A&E I was put on vedolizumab which was a game changer. Still on mycophenolate and steroids as I appear to have a bad case of Behçet’s or I’m still in a large flare! Behçet’s centre have been amazing as are the IBD team where I go for my 8 weekly infusions. Apparently crohns and Behçet’s are very close together on the autoimmune spectrum so Professor Fortune (London Behçet’s) said.
I can’t eat wheat , gluten or dairy and follow the healthiest diet, avoid sugar or anything processed, no alcohol and still have to take so many immune suppressant drugs and even then I end up in hospital- so frustrating. Already had three emergency visits this year! Fortunately the psychologist at London just about keeps me sane!
So after a long rambling answer I have been told Behçet’s does cause IBD symptoms which are very like crohns. The Behçet’s centre will get you referred to a gastroenterologist as equally you can have more than one autoimmune disease!
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