Food intolerance and Behcets: Just posting this... - Behçet's UK

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Food intolerance and Behcets

sam0511 profile image
6 Replies

Just posting this - it may help someone else. I found out I was lactose intolerant a while back - high chance I now have gluten intolerance too - see the link.

ibstreatmentcenter.com/2012...

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sam0511
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6 Replies
lalamilw profile image
lalamilw

Thanks for sharing! Great article! I’ve shown crazy high IgG/IgA reactions to dairy, but in the same tests, all things I get immediate mouth sore reactions from (berries, nuts, coffee, seeds...), did not show any sensitivity, so I am hesitant with the results of these tests. Anyway, it’s always helpful to know other people’s stories related to food and Behcets! I know my symptoms are very food related, but there are just so many things I react to, I don’t know what would be left to eat If I eliminated everything. Fingers crossed a legit test will be developed that can accurately tell us what not to eat. 🍓

zjade profile image
zjade

Thank you for sharing! I have had BD since the age of 1.5 although it went undiagnosed (misdiagnosed as Chrohn's Disease) until I was 20 years old. At 10 I was diagnosed with Lactose intolerance but that barely scraped the surface. Having healed myself through holistic healing (mind-body-breath work, nutrition, lifestyle changes) and being well for the first time in my life in my mid-to-late 20's, I know that it is possible to get well through alternative methods.

Now 12 years later I have been very ill for about 3 years. I am revisiting all of the healing methods and have delved deeply into two specific diets although I am specifically exploring a third possibility. From what I understand lab tests won't show these food sensitivities but rather it's up to us to do the experimentations through diet on ourselves.

Have you hear of or tried the AIP- Autoimmune Protocol? Basically you stop eating any and all foods which can be causing irritation & inflammation to the gut, thereby allowing it to heal and resetting the gut microbiome so there is no leaky gut - one of the biggest culprits to autoimmunity. Here's a great, huge list: thepaleomom.com/wp-content/....

I am also working with the ketogenic diet but that's not necessary for finding out what foods you are sensitive to, it's just helpful for leveling out insulin sensitivity. Also, some docs (Dr. Grundry) speculate that autoimmunity is caused by a lechtin sensitivity.

Worth exploring in depth - by experimenting with your body and going off all of these foods and adding them back one by one (there are specific protocols for adding foods over time, read the blogs & books) - to find out what the culprits are. Western docs know little to nothing about this, let alone what is truly the underlying cause of autoimmune disease.

You can get more control over your life, your body and your health to thrive. It's not easy, it takes a ton of dedication and commitment to yourself but it's more than worthwhile!

sam0511 profile image
sam0511 in reply tozjade

Thanks for the reply - I will have a read. I am lucky - my Behcets is under control with Azathioprine. Stress is a massive trigger, as is hormones, but as I get older these are diminishing. Maybe one day it will just burn itself out. I hope you start to feel well again soon. Thanks again x

zjade profile image
zjade in reply tosam0511

Sending good vibes your way. So awesome to hear about that medicine. I am definitely feeling that enbrel is no longer working for me but I know that if I discuss it with my doc he will want to just put me on another medicine and I'm not certain that I want to be on anything. I was on Imuran a long time ago not sure if it worked....Best of luck and thanks for sharing x

NerdyChristina profile image
NerdyChristina

I also cannot do gluten. I am lactose intolerant but I can tolerate low lactose cheeses. (The lower the sugar of the cheese the less lactose, and with no sugar there should be little to no lactose.) If lactose is the issue, give yogurt a shot! The cultures in yogurt break down the lactose during digestion. (I have gastroparesis and GI involvement, so my diet has a lot of foods cut out.) Aspartame slaughters my gut. I look like I’m pregnant if I eat it or drink it!

I’d like to add, if you have ANY GI symptoms, keep a notebook of what and when you’re eating/drinking and what your symptoms are if they come about. I blamed everything for my bloat and then swapped sodas and voila 🤷🏻‍♀️

GloomyEeyore profile image
GloomyEeyore

I have not yet been diagnosed with Behcet’s but my rheumy consultant is thinking down those lines. I was however diagnosed with coeliac more than 10 years ago so gluten is a big no. I’m not diagnosed lactose intolerant, but can’t tolerate large amounts of lactose. I also can’t tolerate caffeine. Only drink water, herbal tea and the occasional lemonade.

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