NoriTori

@Scott Adams  Sure, Any and all information is welcome. Also the only was to convince my family to get tested is to get tested myself and conclusive answers. Very stubborn lot.

@Scott Adams No one said anything about eating gluten consistently until testing, the appointment was scheduled and an address was given. I don't even have access to the results as it stands. I was just told "everything looks fine, but slight irritation." I don't know if they took a biopsy because I have no access to the results. I don't know how many samples they took (I recently learned they're supposed to take more than one), I don't know what things looked like internally, it was just word of mouth and I didn't know any better to pry and get copies of everything. And I know! I also have chronic Anemia, never truly resolved UNTIL I went gluten free, and low vitamin D (fairly normal in black community), and low creatine (also resolved with gluten free diet). I plan to request a new dermatologist! As well as a referral to Gastro. Food/symptom diary is a great idea though. I have no way of cooking as it stands, so even just the basics wouldn't work for me.

@trents A gluten intolerance is a real possibility! I never ruled it out, but am keen on finding out the EXACT cause. I'd want testing done again to be sure it's not celiac, or SIBO (which I've considered) or other digestive disorder. Celiac seems the most pertinent considering its implications.

1. Yes, but it was less than I’d normally eat, I felt sick and just restricted everything. I felt like it was something do with gluten so I’d started eating less of it as well - I had something wheat every other day

2. No, they did not. They tested for the 2 genes they usually test for and that was that

3. YES, but what pushes me away from it is the rashes and lots of pain with bms(this felt like glass was being pulled through me before I had the urge to go, but was how I always knew I had a bm soon). Every time I eat I get cramps and lose my appetite but force myself to eat, and there are times what I’ve eaten isn't ever enough. This wasn't a problem when I was gluten free

4. As for dermatitis herpetiformis, what made me think I had it was the rash on the tops of my feet, always itchy, always blistery. The itching never ceased and I would scratch until I drew blood. It did come and go on and off but for the months I was gluten free I never saw it and never had the itching. I now have just random blistering bumps everywhere and my skin itches randomly.

Currently, all my meals come from a communal space! We are allowed no kitchen access and they cook FOR you. As far as I know the food is bought in bulk within their budget so I don’t pay for food at all. There is no work around

Also forgot to add that I've had eczema and digestive problems my whole life and the only thing that cleared it up significantly was going gluten free

Hi! I just wanted to start out by saying that gastro problems seem to run on both sides of my family as well as that I am of African descent which I know complicates potential diagnosis. My dad is always bloated and has a massive appetite (mostly) but somehow still very slim. My brother was always sick with something, we always figured food poisoning of some kind because he'd complain of stomach pain, nausea, vomiting, the works. Even when he ate a lot he remained underweight. It was to the point that our then GP, had to prescribe ensure which never worked. To this day he still has stomach problems and remains skinny (borderline but normal weight). As for me, I just had lots of allergies, "eczema" and an autoimmune disease, then later developed another in my teens. I didn't think any of it was connected until one year at thanksgiving I started experiencing almost immediate symptoms and google (forgive me) led me to food poisoning, and celiacs. I brushed them both off but did more research on celiac and symptoms continued. Some time later I asked for testing, IgE came back high-ish for gluten but all antibody tests were negative. That turned into allergy testing, and an endoscopy which both came back fine. The only thing that showed up on the endoscopy was slight irritation but no damage. I was told it could be an intolerance and went gluten free for a time and got significant better. Lost lots of weight, my stomach went down, bowel movements were more regular and not painful, and my eczema went away completely.

The current problem is I don't have the money to maintain a gluten free diet so I've been consuming it and in mass quantities :'). Almost every meal contains something with wheat in it and I've kept this up for a month now and am experiencing symptoms again. I'm bloated, my jeans don't fit as well, stomach cramps, boats of constipation, hungrier than usual, brain fog, fatigue, peeling skin on hands and feet, itchy skin all over and small blister bumps are popping up. I was diagnosed with dyshidrotic eczema and at one point had it on my elbows, knees, feet, and hands. I asked my GP if testing could be done to know for sure that it was eczema and not dermatitis herpetiformis but all she did was bring up pictures of severe forms of dermatitis herpetiformis an say it couldn't be that. I don't know what to do at this point outside of document symptoms and maybe request a new dermatologist. Has anyone had similar experiences with symptoms or dismissal by doctors?