Newbie Here

[Fundog]

Hi, I've been lurking for a couple of months and finally decided to sign up.  I don't actually have celiac disease, or at least I've tested negative on two tests.  I do have a serious problem with eczema, which is triggered/aggravated by wheat.  I am absolutely certain wheat is a factor, at least, and so is my nurse practitioner.  And since there are no support groups or forums for folks with wheat sensitivities, I decided to come here.  My sister does have celiac disease, another sister is deathly allergic to nuts, another has a lot of environmental allergies, and I have thyroid disease.  I've been learning how to bake all over again, using grains I've never tried before and omitting wheat.  For those of you with DH, I can truly relate and empathize!  My brain rewards me for scratching, and it is so hard to stop!  I've already had cellulitis once.   Anyway, I'm rambling.  I just wanted to say hello and introduce myself.

[cyclinglady]

Welcome!  ? . There are many folks here who do not have an official diagnosis of celiac disease for a variety of reasons.  Are you going to eliminate gluten (wheat, barley, rye) or just wheat?  With such a strong family history, I would suggest going gluten free.  

By the way, I tested negative to the TTG IGA and the Iga deficieny tests too (and still do in follow-up testing).  I only test positive to the DGP IGa.  Biopsies revealed moderate to severe damage.  How did your sister test out on the blood panel?  

[Fundog]

Hi, thank you for your reply!   When I started the wheat elimination challenge, per my NPs suggestion, I went gluten free, mostly because it is simpler.  After my skin biopsy results came back negative, I started adding barley to my recipes, and later rye.  I am starting to wonder about the barley though. (Rye is really difficult to work with, so I don't use it much)  If I eat more than two servings of homemade barley bread I start to get more itchy.  And it gives me gas.  Since I grind the flour myself, I am going to go back to being gluten free as soon as I use up the rest of this batch of flour I've custom blended..   I was getting better, my skin was clearing up, and then I got remiss about reading labels.  Come to find out, I was eating a small amount of wheat several days in a row.    I am having a really bad flare right now, it is so discouraging.

When my sister was diagnosed, she woke up in the night with symptoms of a heart attack.  She went to the ER, and the ECG was going crazy.  Eventually they decided she was not having a heart attack, but they didn't know why her heart was doing that either.  Finally one very astute nurse ordered tests for celiac disease with the rest of the blood work, and it came back positive.   Needless to say, my sister was very surprised!  She had no other symptoms, she had never even heard of celiac disease.  It was only after she went gluten free, now if she eats gluten she will have some digestive upset, but mostly her symptoms are more to do with her autonomic functions.

[squirmingitch]

Fundog, how was your skin biopsy done? If it was taken ON a lesion, it was done incorrectly. 

[Fundog]

Hi Squirmy, the biopsy was done correctly.  I actually offended my dermatologist by asking him if he knew how to do it, if he had ever seen dh, lol.  Then he told me that he had trained at the Mayo Clinic, and that yes, he has "seen all kinds of weird, rare, and bizarre" skin disorders and diseases.  I softened up our relationship by explaining about this site.   He actually took two specimens, one from a lesion itself, and one from a clear spot next to that lesion.  He said the clear spot was for the antibody test, and the lesion spot was for basic pathology.  Which is not a bad idea, actually.

Part of the issue, I'm afraid, is the timing.  1) I had been scratching, uncontrollably.  2) I had resorted to topical steroids, and had been on antibiotics to help with the cellulitis  3) I had been gluten free for three weeks, per the suggestion of my NP (I had suggested a possible food allergy, and she suggested I pick a suspect-- she surprised me by mentioning wheat was among the top five food allergens!-- and avoid that one ingredient for three weeks, then eat some and see what happens)  I finished the challenge, and the result was swift and severe.  I told my hubby I would "never eat wheat on purpose again," lol.  I saw my NP the next day (a Monday), and she agreed I should see the dermatologist ASAP, while my skin was "still yelling and screaming."  The dermatologist fit me in for my biopsy on Friday.  On Tuesday, in preparation for the biopsy, I tried to eat a bunch more stuff with wheat in in, but it made me so miserable I gave up.  He had a hard time finding a fresh spot, it having been four days since I ate wheat.  In the end, the pathology report just showed "very dry, itchy skin," and no antibodies.  He actually suggested I reintroduce wheat back into my diet, in very small amounts.  I actually did that recently, accidentally.  It was not good.  I was FINALLY starting to get better, I had stopped itching for the most part, and I only had nasty skin in three places--- and now my arms and legs are covered in a horrible itchy rash again.   celiac disease or not, I just know I react to wheat, and I will not eat it on purpose ever again.  I don't need a diagnosis.  I may at some point in the future see an allergist, though.

[squirmingitch]

Ah, I see. I'm sorry. 

A word of advice. Ditch the barley NOW. No more rye either. It isn't worth it. Remember that if it is dh & it sounds like it is, it can come & go at will whether you're eating gluten grains or not until such time as all the antibodies are out of your skin. Meanwhile, if you're eating gluten grains, the antibodies are getting deposited under your skin even if you aren't breaking out at that particular point in time.

Try soaking in a hot, hot epsom salts bath at least once a day & see if that helps some.

[Fundog]

I will do that, thank you.   I use plain baking soda as my " soap" and I've found it to be very nice and soothing.  Soaking in soda/epsom salts baths is nice too.   Yep, I've decided to ditch all gluten.  My mother is coming to visit, so I'm going to give the rest of my barley impregnated flour blend to her, and make a new one for me.  She is interested in trying new grains.  It's nice to find a place of moral support, knowing I'm not alone, even without an official diagnosis.  Thank you.

[squirmingitch]

there are plenty here who don't have an official dx. The fates conspire against them or the doctors do; one or the other. You are not alone!!!