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Behçet's UK
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Bread/English muffins

Hi,

I have been clear of bread for about 3 weeks now as it was causing bloating and upset stomachs. I had eggs benedict this morning and have suffered bloating and severe cramping this afternoon.

Could these be a one off or linked to an allergy or behcets?

Thanks

C

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If you have eaten the bread muffin or any other muffin based bread with gluten I would say this is why you feel bloated, happens to me every time I have any gluten based product, especially white bread/flour based products.

It could also be the hollandaise sauce, some people make mock hollandaise sauce, made with flour, best ask if flour is used in the recipe.

Maybe if you try again see if gluten free bread helps and check the hollandaise is flour free.

Hope your bloating goes down soon 😏

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If you go from eating no gluten products just even for a few weeks to eating gluten again the first few times everybody gets some bloating.

That is possibly evidence to add to one nutritional science theory that actually all humans have a certain level of intolerance to wheat , and also Lactolose.

So Eggs Benedict has a touch of both.

Giving up gluten can help your overall health and Fatigue levels , especially if you suffer from autoinflammatory and Autoimmune conditions , like Behcets.

So it doesn't necessarily mean it is an allergy reaction , or the growth of an allergy syndrome that can be present with some Behcets sufferers . It could just be a natural intolerance reaction which would subside if you started eating gluten regularly again and have nothing to do with Behcets.

In my opinion , unless you get a continued amount of bloating , pain and other issues from eating gluten every day , you haven't got an allergy. But , if you have found that any gastric issues you have because of Behcets or from other health issues have improved it's probably best to stay gluten free , and if you fall of the gluten free wagon and have the odd Eggs Benedict or other treat just be prepared that this sort of reaction will probably happen again , and you have to decide first if it's worth it.

Take care , Bee x

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Gluten crashes my blood pressure too and my heart rate increases and won’t come back down from the 160s for two to three days. I usually know I’ve been exposed to it within about five minutes because my mouth starts feeling numb and lips swell a little bit. Was alright with gluten until my mid-30s. Not sure if the Behçet’s damaged whatever organ or gland that makes the stuff that digests gluten or why I developed a reaction like this. I always did have a belly ache after eating it, but the enjoyment of pizza and other wonderful delicacies outweighed the discomfort. I’ve never liked gluten-free pizza. Gluten-free brownies, cookies and bread can be awesome if you find the right brands. If Behçet’s is hitting your digestive system, I can see why gluten might not be a great idea if you already have sensitivity. If you’re passing blood, that might be one of the early things to stop eating to give your belly a rest.

Best,

Dave

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Gosh , your new reaction to gluten sounds far more like an allergy with your swelling lips and possibly Behcets related.

It's certainly a severed intolerance , especially if it happens so quickly.

Have you noticed if it's just wheat products or all trains that do this?

I would definitely avoid it now .

Keep an eye out for hidden gluten too , in sauces , puddings and some ready meals that don't appear to have gluten in it.

Some of the gluten free breads are much better now , and if you can make your own from products you know you can eat , you can still have a good pizza

Take care , and watch out for those food triggers , bee xx

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Soy sauce, beer, malt flavorings, maltodextrin, a bunch of things cause a reaction. The most severe reaction was after biting into a dinner roll. I had been gluten-free for a long time, and a doctor wanted to see my reaction. Not knowing that the body becomes less tolerant if you don’t eat it for a while, I obliged and wanted to clobber the doctor. He should’ve known better, but he didn’t until I played guinea pig for him. I’m very careful because I definitely don’t want to go through that ever again. That one incident kind of tipped a cascade of problems that took months to sort out. You’re right though, that it could have triggered a Behçet’s attack. That would be the only way to explain the ongoing problems I had because the gluten would’ve been out of my system in a few days.

D

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It's like dominoes with these diseases you push the first one and all the others slowly fall . It can take just one tiny trigger to cause months of symptoms , your system is sensitive and your immune system is less active on the medication , so a flare can make you open to infections too , which cause another flare of Behcets and on it goes.

You are right about soya sauce etc. Lots of those sorts of condiments contain gluten. You also have to be careful even with things like rice crispies and some non grain cereals because they are often dusted with a non caking agent which contains wheat.

Be careful how you go , and with your sensitivity always check your labels , bee

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Dominoes ... that sure is the truth. The Behçet’s has taken quite a toll on my health in general. Trying to stay in positive energy as my doctors try to treat this condition. The doctor says that a particularly bad thing that has happened is the Behçet’s killed my pituitary, the main thermostat for all endocrine functions. I have to manage with synthetic replacement hormone shots and pills. Even kidney function has to be handled manually with synthetic vasopressin. Feeling so grateful to have insurance coverage through the company I work for. They’re letting me maintain full coverage while I am on medical leave. Otherwise, there’d be no way that I could afford all of these medications and doctor visits. I’m in the U.S., and medical costs are ridiculously high here, to say the very least.

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I am interested to hear about these food sensitivities and reactions. Our daughter is 8 and has been in a flare since New Year. It seemed to be triggered by a viral infection with fever, sore throat and cough. But I also wonder about the foods eaten over the Christmas holiday eg more sweet things.

Years ago I stopped her eating brioche as it was one thing none of us ate and she was getting mouth ulcers. The other day I had a bite of a brioche and felt my whole mouth “fizz” so I threw the rest away. I also have Behçet’s.

Now I am curious what could be in that brioche that caused that, or was it completely random. We eat a pretty health diet with all food groups and include lots of eggs, fruit and cereals and eat weetabix and bran flakes for breakfast. I try not to buy things with preservatives in.

We avoid cinnamon and cloves and ginger as they have all caused rashes.

I went gluten-free for over 6 months in the past and did not notice any difference with my Behçet’s. I have always been a healthy BMI but lost weight due to eating less bread / carb products so that was a bonus!

Now my daughter is suffering more I would consider changing diets if there was food evidence or really strong anecdotal stories from the Behçet’s community of things that work. I am thinking low sugar, maybe gluten free but knowing how much it would impact (family, telling school, playdates etc) I really need to be able to justify it!

Appreciate advice and any other patterns people see improvements with.

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Sugar was the first thing I had trouble with as a youngster. There would be a saturation point, where I could eat sugar and then, if I didn’t completely stop and flush with water for several days, the huge ulcers would come and I would be in agony. Sugar and Colgate toothpaste. Gluten issues came much later, in my 30s. Endocrine failure in my late 30s to early 40s. Have you ever heard of Behçet’s burnout? Where the disease just goes away? I am wondering if I will live to see it! Haha

Dave

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Interesting reading that people diagnosed with Behcet’s Disease all have issues with Gluten.

Do any of you have issues with Dairy?

Thyroid or Hormones issues?

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Hello,

I’m gluten-free and also try to avoid soy. Dairy is not my friend, either, but I still sneak a little ice cream here and there and, as long as I take Creon, I can tolerate it.

Now....about the HORMONES. Lord, yes, I have major endocrine issues. It took specialized endocrinologists a while to figure out what was going on with my endocrine system, partially because the problems evolved slowly and symptoms were confusing at first. Here is a list of endocrine issues that I have, and all of them are attributed to Behçet’s - confirmed by surgical biopsy, scans and repeated bloodwork over a period of several years:

Pituitary failure a.k.a. panhypopituitaryism

Hypothalamus damage

Thyroid (low) - take replacement pills

Adrenal (low) - take replacement pills

Aldosterone - take replacement pills

Testosterone - regulate with shots

Kidney function - regulate with shots

Pancreatic Exocrine - take replacement pills (insulin production still ok)

If Behçet’s attacks one part of your endocrine system, it will likely affect other parts over time. The pituitary, supplied blood via tiny vessels, is a particularly critical component because it controls so many things. My first indication of pituitary failure was crazy kidney function. I was extremely thirsty and could put out 13+ liters of urine every day. A test in Intensive Care revealed that I was not producing Vasopressin at all. Next to go was my thyroid. Then testosterone and aldosterone, then adrenals, then pancreatic enzymes.

Hope this helps!

Best,

Dave

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Thanks for replying Dave!!

That’s interesting that your endocrine issues developed slowly and are attributed to Bechet’s.

Wish that was somewhere documented as a sign or another symptom.

So many doctors work only by what they see/read in a textbook and they see black/white and not listen to the person and how they are suffering.

Since some of my symptoms weren’t documented by doctors record to her (offices closed and I didn’t think way back then I would still be having these issues) she is acting as if she’s discrediting them.

(Since no pictures to prove)

I’m still have not been diagnosed.

I have a lot of issues with my eyes

Always dry, ache burn, migraine type daily headache and Trigeminal nerve pain, thyroid and hormones whacking out, malaise, fatigue, bloat left side intestinal pain, inconsistencies bowels.

Have had both ulcers, nodules, acne face).

But my bloodwork doesn’t show what she thinks I should. I don’t have the Gene.

But I have had 11 Episodes of outbreaks..

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I ran into doctors who were skeptical of everything I said. I ended up finding doctors all over the U.S. who are at the top of their field to do a workup on me and give me their expert advice and diagnosis. I then took that info to my local doctors in Georgia and had better results in treatment. It is so hard to find doctors who speak our language!

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Goodness Dave, what a lot to go through. The doctors should write a case report about your pituitary failure in Behçet’s then others can learn from it. Where is your endocrinologist based?

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It has been a nightmare. The biopsy of my pituitary showed unusual inflammation, “nest” cells and some kind of specific scar tissue. During surgery, the doctor noted that the stalk had atrophied and become useless. He also discovered that the vessels that supply blood to the pituitary had atrophied, starving it of blood and killing the pituitary. My endocrinologist is in San Francisco. Dr. Lewis Blevins is at UCSF/Parnassus and the surgery was done at UCSF.

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Dave.

We’ve chatted before about your pituitary. But I didn’t realize it was all of this too 😱 My gosh you have gone through a lot!!

How long how many years have you been battling Bechet’s?

If I recall you live in Atlanta area?

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I’ve had it my whole life, but it was only diagnosed in 2013, after a lot of damage was already done. Better late than never!

I live in Blue Ridge, GA. It is a couple hours north of Atlanta.

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