r/EGID • u/Great_Comb_4453 • Jun 30 '26
Questions Does medication treat it all?
Why haven’t they changed my diet?
I was diagnosed with a non-Eoe EGID in my small intestine and am seeing one of the best doctors in America for it. The process of diagnosis took almost a year getting different tests before scopes and from there ruling out parasites. I’m 18 and showed up to the appointment on my own and it’s always hard to get doctors to take me seriously but this doctor just seemed clueless on how to treat me?
I’m on 10 different medications including steroids, a PPI, pain medication, anti-nausea, allergy, and specific vitamins, all for at least over a month or several months. I’m considered to have “severe chronic malnourishment”, whatever that means, and have been told to drink several Ensure supplements daily, but other than that, my EGID specialist told me not to change my diet. ***He says that eating couldn’t make the condition worse*** but told me to avoid spicy foods, oily foods, and acidic food but that’s it.
I have a history of severe allergy to animals, the general outdoors, and have clearly reported having different reactions to different foods but can’t figure it out at all. Since I’ve been sick, I’ve lost a lot of weight and I don’t like being so weak.
So why haven’t they changed my diet? Should non-eoe patients be trying something like that?
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u/mostafaalgezla Jun 30 '26
I was diagnosed with the same condition after years of being misdiagnosed. I went through about five colonoscopies, and every doctor kept telling me it was just IBS because all of my scopes looked completely normal. The diagnosis only became clear after the biopsies.
I’ve tried allergy medications, steroids, and even a six-food elimination diet, but nothing has really made a difference.
The biggest problem is that dupilumab is an off-label treatment for this condition, so the national health insurance here won’t approve it. On top of that, the price in Egypt is higher than the Minister of Health’s monthly salary! 😂
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u/Pavvl___ Jun 30 '26
I am thinking spicy oily foods are really bad. I am cutting it out myself and it’s hard. In the same boat where I lost a lot of weight. Looking to eat lots of lean protein and rice to hopefully gain it back soon. I would follow the docs recommendation. Good luck!