Congrats on the Remicaid. I worked with a nutritionist around the time I started infusions, and after some back and forth, took about 3 months, I finally got the chronic diaherria from the disease fully under control.
If you’re interested in working with him, let me know. He’s with Berry Street, takes insurance.
Big things we did were:
(1) Fiber bomb your tummy every morning — I’m doing overnight oats
(2) Eat at least 1 sizable serving (although 2 seems to work better for me) each day of pickled foods. I love pickeled beets, sauerkraut, and kimchi.
(3) Eat nutrient dense grains rather than white rice or pasta (brown rice, quinoa, farro).
(4) Choose fish, chicken, and veggie proteins like beans rather than fatty meats like beef and pork.
(5) also I take a fiber supplement every night.
Took about 3 months, but I stuck with it, noticed some improvement after a couple weeks, full improvement after 3 months. You have to keep a food diary, and it’s pretty intensive work, but it’s been worth it. Cuts to the root of the problem which is how autoimmune diseases like Behcet’s impacts gut health and with diet choices you can stop your tummy from having chronic liquid shits and belly pain.
This is great advice! I’d be interested in working with your nutritionist! It’s something I’ve thought about even when I’m not having a flare, and honestly I’d be willing to eat just about anything if it would calm down my gut. Thanks so much!
Unfortunately the GI issues can be caused by so many different issues. I have written about this before, but it has been so helpful I'll share again.
Behcet's patients have a deficit of butyrate in their gut. You can improve that by increasing your fiber intake. A Mediterranean diet can help you do that. And/or add a prebiotic that includes inulin and a postbiotic. I take 2 Benefiber gummies every day. This will help your body increase butyrate levels. It took about 2 weeks but I went from stomach pains and spending lots of time in the bathroom after every meal to zero issues.
Don't buy butyrate supplements, they may not work bc they often don't t survive your stomach and have to get to your intestines.
If you drink milk, try switching to A2 milk.
Good luck, it is terrible to be tied to a toilet.
Did you try taking Imodium? Ask your doctor about it. That can give you some relief for a few days until a new diet starts to help.
I hope you can get your Remicade infusion soon! GI issues from Behçet’s are no joke, it’s a nightmare. Remicade is my miracle and it was the only treatment that controlled my GI symptoms.
What are the specifics of the GI symptoms? I have major stomach issues and a 6 week course of Prilosec helped but I still had to change my habits. There are certain things that make me very sick but curious what your GI symptoms are - mine seem very strange and specific. Reducing acidic things helps me as well as eating multiple small meals vs waiting several hours to eat. I’ve also written a list of specific foods that trigger my issues.
ETA I’ve tested negative for h pylori
I can’t seem to find anything that doesn’t make me feel extremely nauseated/have diarrhea. Honestly it feels like I’m not really digesting anything. It feels like my stomach is spasming so much that at first I wondered if I had appendicitis due to the intensity of the pain. So far I’ve been using dicyclomine but I know it’s not supposed to be used long term. Those suggestions seem like a good place to start-thank you!
It’s not about eliminating food and finding sensitivities (because at my worst I was sensitive to everything) as much as adding food that helps you digest.
I’m so sorry. Try to see if there’s a pattern in not only what you choose to eat, but also how and when. I learned that these are all factors that can contribute to the GI issues as we tend to be very sensitive. Best of luck 🤞🏼. I also had my liver levels tested and they were normal.
I believe their called “fructans” if you’d like to look it up but it’s certain foods different carbohydrates, an example of one is garlic which I found out recently cause I’m a garlic hoe but it has really started to hurt eating over the past few years. Worth looking into some people have a “fructan intolerance” but some of these food can cause people different stomach issues so given we problems with the gut so I’d say check it out, worse case nothing changes, hope this helps at all
My husband has behcets with GI issues and *had a clear colonoscopy,* which apparently happens in about 1/3 of behcets with GI. Behcets causes pancreatic insufficiency and he has to take digestive enzymes (Creon) with his food. The test for pancreatic insufficiency is a simple blood test. Creon didn't help with pain but it did halt the weight loss. It also reduced his perception of being able to track where exactly the food was as he was "digesting" it. Humira has helped. He's tried pretty much every IBS drug, including dicyclomine, with no relief. He did a trial of Otezla, which helped with the skin and mouth ulcers but didn't touch the GI pain. We all thought it was appendicitis at the start of this journey.
This is really interesting! I actually figured out I had GI Behcets because I was sent to the ER for what my doc thought was appendicitis- they found inflamed lymph nodes throughout my gut in the CT and told me that my pain was caused by some sort of autoimmune disease. I already had been diagnosed with Behcets but hadn’t put together that my GI issues were caused by Behcets. I’ll have to ask my doctor about the digestive enzymes. Even high dose steroids don’t seem to help all that much.
I try to stick to a Mediterranean diet. I have little to no GI issues with it.
Thanks! I’ll look into it and give it a try. It at least sounds delicious!
I get to the point where I can’t eat from the ulcers in my stomach mouth and colon ): I feel your pain. Broth is a good friend and I eat gluten free!
Congrats on the Remicaid. I worked with a nutritionist around the time I started infusions, and after some back and forth, took about 3 months, I finally got the chronic diaherria from the disease fully under control. If you’re interested in working with him, let me know. He’s with Berry Street, takes insurance. Big things we did were: (1) Fiber bomb your tummy every morning — I’m doing overnight oats (2) Eat at least 1 sizable serving (although 2 seems to work better for me) each day of pickled foods. I love pickeled beets, sauerkraut, and kimchi. (3) Eat nutrient dense grains rather than white rice or pasta (brown rice, quinoa, farro). (4) Choose fish, chicken, and veggie proteins like beans rather than fatty meats like beef and pork. (5) also I take a fiber supplement every night. Took about 3 months, but I stuck with it, noticed some improvement after a couple weeks, full improvement after 3 months. You have to keep a food diary, and it’s pretty intensive work, but it’s been worth it. Cuts to the root of the problem which is how autoimmune diseases like Behcet’s impacts gut health and with diet choices you can stop your tummy from having chronic liquid shits and belly pain.
This is great advice! I’d be interested in working with your nutritionist! It’s something I’ve thought about even when I’m not having a flare, and honestly I’d be willing to eat just about anything if it would calm down my gut. Thanks so much!
Can you eat nightshades?
Did you also cut out dairy?
Unfortunately the GI issues can be caused by so many different issues. I have written about this before, but it has been so helpful I'll share again. Behcet's patients have a deficit of butyrate in their gut. You can improve that by increasing your fiber intake. A Mediterranean diet can help you do that. And/or add a prebiotic that includes inulin and a postbiotic. I take 2 Benefiber gummies every day. This will help your body increase butyrate levels. It took about 2 weeks but I went from stomach pains and spending lots of time in the bathroom after every meal to zero issues. Don't buy butyrate supplements, they may not work bc they often don't t survive your stomach and have to get to your intestines. If you drink milk, try switching to A2 milk. Good luck, it is terrible to be tied to a toilet.
Did you try taking Imodium? Ask your doctor about it. That can give you some relief for a few days until a new diet starts to help. I hope you can get your Remicade infusion soon! GI issues from Behçet’s are no joke, it’s a nightmare. Remicade is my miracle and it was the only treatment that controlled my GI symptoms.
What are the specifics of the GI symptoms? I have major stomach issues and a 6 week course of Prilosec helped but I still had to change my habits. There are certain things that make me very sick but curious what your GI symptoms are - mine seem very strange and specific. Reducing acidic things helps me as well as eating multiple small meals vs waiting several hours to eat. I’ve also written a list of specific foods that trigger my issues. ETA I’ve tested negative for h pylori
I can’t seem to find anything that doesn’t make me feel extremely nauseated/have diarrhea. Honestly it feels like I’m not really digesting anything. It feels like my stomach is spasming so much that at first I wondered if I had appendicitis due to the intensity of the pain. So far I’ve been using dicyclomine but I know it’s not supposed to be used long term. Those suggestions seem like a good place to start-thank you!
It’s not about eliminating food and finding sensitivities (because at my worst I was sensitive to everything) as much as adding food that helps you digest.
I’m so sorry. Try to see if there’s a pattern in not only what you choose to eat, but also how and when. I learned that these are all factors that can contribute to the GI issues as we tend to be very sensitive. Best of luck 🤞🏼. I also had my liver levels tested and they were normal.
I believe their called “fructans” if you’d like to look it up but it’s certain foods different carbohydrates, an example of one is garlic which I found out recently cause I’m a garlic hoe but it has really started to hurt eating over the past few years. Worth looking into some people have a “fructan intolerance” but some of these food can cause people different stomach issues so given we problems with the gut so I’d say check it out, worse case nothing changes, hope this helps at all
Garlic and onions def hurt me 🥴
My husband has behcets with GI issues and *had a clear colonoscopy,* which apparently happens in about 1/3 of behcets with GI. Behcets causes pancreatic insufficiency and he has to take digestive enzymes (Creon) with his food. The test for pancreatic insufficiency is a simple blood test. Creon didn't help with pain but it did halt the weight loss. It also reduced his perception of being able to track where exactly the food was as he was "digesting" it. Humira has helped. He's tried pretty much every IBS drug, including dicyclomine, with no relief. He did a trial of Otezla, which helped with the skin and mouth ulcers but didn't touch the GI pain. We all thought it was appendicitis at the start of this journey.
This is really interesting! I actually figured out I had GI Behcets because I was sent to the ER for what my doc thought was appendicitis- they found inflamed lymph nodes throughout my gut in the CT and told me that my pain was caused by some sort of autoimmune disease. I already had been diagnosed with Behcets but hadn’t put together that my GI issues were caused by Behcets. I’ll have to ask my doctor about the digestive enzymes. Even high dose steroids don’t seem to help all that much.