Help please- rash,labs, and more

[nestowyn]

Since I was a teenager I had abdominal issues. I was diagnosed with endometriosis, chronically anemic, and went through 15 surgeries (including a colin resection for endometriosis) that ultimately lead to a hysterectomy. I thought I was better, but struggled still with occasional cramps, diarrhea, and excessive fatigue. I gained substantial weight, and then when I started trying hard to lose weight - I developed what I believed was gallbladder symptoms. Over the next few years I worked hard to get healthy and lost over 100 lbs thinking that must be the solution I needed. During the last two years though I developed thyroid problems, and have to take a laxative every few days. My gallbladder symptoms progressed and in August I had it removed as it was "overactive " on HIDA scan. Feeling liberated, I expanded my diet. I indulged more in fried foods. About 2 werks after gallbladder surgery, I became depressed. My energy levels persisted as low. And most curiously, I developed a rash around my eyes. For months I went bonkers with the itching, puffiness, and trying to figure what was causing it. One day I got the idea of a food allergy as I noticed I was consistently itching more when in the kitchen. My husband noticed my rash was redder after making sandwiches. It lead us to try avoiding gluten, and my rash cleared mostly. My doctor and I agreed after 2 weeks and so many improved symptoms aside from the rash... that I should do a gluten challenge. Within a few days I was exhausted and the rash was back full force. I said I couldn't continue, and we tested early. 

My DGP IgA came back at over 100 with a positive result being considered >15. My Ttg was negative. Wheat, barley and rye food allergy testing was negative. 

I would love to hear thoughts. I have driven myself mad reading literature. Today a restaurant didn't get me the gluten free bun I ordered and tonight I am broken out again, nauseous and have a headache. I am mad thinking that maybe I could have not had so many surgeries, that maybe I would have had a chance to have kids... and then also thinking maybe we are wrong and it is not celiac? Maybe I am just making my past fit the current situation?

I know it is not classic DH. But I have included a picture of the rash.

Local digestive specialists are booked months out for endoscopy currently

[tessa25]

9 hours ago, nestowyn said:

My DGP IgA came back at over 100 with a positive result being considered >15. My Ttg was negative. Wheat, barley and rye food allergy testing was negative. 

A positive on any one celiac test means you should get a gastroenterologist to do an endoscopy/biopsies for celiac. >100 is very high so I'm thinking you have your answer.  I am not familiar with the procedure for DH testing. I think it involves getting a dermatologist to do biopsies next to the rash. You are supposed to keep eating gluten until all celiac testing is completed.

[cyclinglady]

My DGP IgA was the only positive on the celiac panel and I had some severe damage (anemia was my main symptom).   I strongly recommend that you move forward and talk to a Gastroenterologist for a firm diagnosis.  Why?  The GI can not only identify damaged villi (great for a benchmark), but rule out other concurrent health issues.  Biopsies via endoscopy is the “Gold Standard” for diagnosing celiac disease.  But some people do not have access to a GI for a variety of reasons, like you.  Consider getting that appointment and doing a two week challenge (challenge is shorter than for the blood test) prior to the scope.  

  I can speak for my family.  I am officially diagnosed but my hubby who went gluten-free 12 years before my diagnosis is not.  His is fine as anyone can eat gluten free, but he would be the first to say that I have had way more support from medical, yes medical, and family than he has.  My diagnosis makes it easy for my kid to get tested every few years too.  

I do not know if you have celiac disease, but your eyes look like mine when I have an allergic reaction (remember, I am just a lady on the internet).   When I start to see my eyelids (they block my vision), I know that I need to medicate right away (EPI pens or antihistamines).  Some allergies are mild, but if it progresses get to a doctor.  I am allergic to many things, but insect stings and medications like ibuprofen and acetaminophen are big triggers.  My allergies are not a gluten reaction, but do worsen when I am exposed to gluten because that triggers an entire autoimmune responseout.  My other AI issues flare too (e.g. thyroiditis).  You could be allergic to anything, even wheat.  Yes, you can have both a wheat allergy and have celiac disease (or be allergic to anything you ate or were exposed to).  

Take care! 

[squirmingitch]

OK so you were gluten-free for 2 weeks & then went back to gluten & within a few days stopped the challenge & the doc tested? And still that DGP IgA result was over 100 with positive being >15? OY!!!! And wheat, badly & rye food allergy testing came up negative. Oh honey, all things considered, it looks like celiac is screaming at you. 

I would say to go gluten-free & pursue the endoscopy & resume gluten 2 weeks prior to it. Keep records & photos & take them to the GI along with your serum panel.