Celiac diagnosed but is later Duhring worth exploring?

[Richard D]

I was diagnosed with Celiac about 2 years ago.  I failed the blood test 2 years before that (was literally told "we've ruled out Celiac diesease") when trying to figure out why my body hated me but was in for an upper endo related to reflux and mentioned I was still having mystery stomach pain, so the gastro literally said, "I'm going to check something else while I'm in there."  He did a small intestine biopsy and two weeks later, I got a letter that said: "signs of gluten enteropathy."

The next week, I went off gluten, and it has been life-changing.  No more lower GI symptoms (sudden extreme BM urge, mixed consistency, liquids pushing out solids - very painful) and my mystery stomach pain has disappeared.  I think my story so far is pretty "typical" based on reading these forums for a bit.  When I am glutened by unknown cross-contamination (I travel for work a lot, so I accept this as unavoidable), I get the same lower GI symptoms I used to, usually about 2 hours after eating, followed by a few days of feeling crummy in a variety of ways.  If it is a particularly bad CC, I will also get the stomach pain, for which the gastro has given me as-needed corticosteroids, which helps a lot and means the feeling crummy only lasts two days instead of two weeks.  So that is all much better than it used to be.

But what I've also noticed is that every time I get CC'd, I break out in various rashes in lots of different places - typically the inside of my thigh near my knee, the back of my hands, the top of my thighs where my pockets are, or on my waist along the belt line.  I had never thought of this being Celiac-related before but happened to come across an article about skin rashes and Celiac in the last week.  I used to think that I got the rashes all the time, but now that my whole body isn't inflamed all the time (due to the mostly successful gluten-free diet), the timing of new rashes appearing with being CC'd is making me think that this is Duhring disease and might have been Duhring all along.   What's weird to me is that I only started developing GI-related Celiac symptoms in my mid-to-late 20s, and I've never had any of the weight loss/nutrition issues that seem to be common with Celiac, but I've had this undiagnosable skin problem since I was 4 or 5.  So I'm wondering now if I had Duhring, and leaving the Duhring untreated eventually created the GI symptoms.  I'm thinking that might also explain why the blood tests always came back negative despite the positive result from the biopsy and genetic test.

In any case, Duhring is still a type of Celiac, so the overall treatment-by-gluten-free-diet is the same, but now I'm wondering if I should find a Celiac-knowledgeable dermatologist to get an actual Duhring diagnosis and see if I can treat the rashes directly.  From my reading, it seems like there are some pills you can take for it.  I've had these rashes my entire life, so I had never really thought much about getting rid of them completely.  They do itch like fire whenever I get glutened, and sometimes even when I don't get glutened, and they look pretty nasty, and they stick around for a couple of weeks whenever I do get them.  But the idea of having a hole punch of my skin removed to do the test doesn't sound pleasant, especially when apparently the doctor can do the punch wrong and not find the IgA even when there is IgA present. 

So I guess my question is this: has anyone had a Celiac diagnosis, THEN a Duhring diagnosis?  Is the pill-based treatment for Duhring "worth it"?  Should I just keep eating gluten free (with occasional screw ups - down to getting CC'd once every couple of months now) and not worry about it, or will treating the Duhring directly be worth the hassle of finding a new doctor and explaining all of this again and worrying about being taken seriously, etc?  It took about a decade to figure out my issues were all related to Celiac, and the idea of getting a "new diagnosis" makes me a little queasy.

I might also note that I had a dermatologist for years about the rashes, and all he ever did when I came in - for years with the same symptoms - is say "Have you been having unprotected sex?", to which I said no, to which he said, "probably eczema" and gave me a weak topical corticosteroid.  So I am a little uneasy about dermatologists.  Maybe I just had a bad one.   
 

[cyclinglady]

Welcome!  Celiac disease and Dermatitis Herpetiformis (DH or Duhring Disease) is the same thing.  One effects the small intestine and the other the skin (or both).  It all depends on the individual as to how they present.  Sure, you can take Dapsone for the DH, but it has some seriously HARSH side effects.  A gluten free diet, (super strict) can keep DH under control.  

You do not need  to go back and get another celiac disease diagnosis.  You have celiac disease.  Unfortunately, you suffer from both intestinal and skin issues.  Your earlier negative blood tests?  Did you get an entire panel?  Did you know some celiacs are IGA deficient?  Did you know some are seronegative (could be your reason).  

I personally avoid gluten at all costs.  I am on my third autoimmune disorder and I strongly feel that I could have avoided developing them had my celiac disease had been discovered sooner!  

 

[GFinDC]

Hi Richard,

There is a section of this forum that is dedicated to DH (dermatitis herpetiformis).  You can find lots of information there.  People with DH sometimes avoid iodine in their food to reduce/shorten the rash duration.

[Richard D]

Ok, so you are both saying I should not bother finding a new dermatologist?  My gastro doesn’t know anything about the skin aspects, and I live in a place without any Celiac specialists.  And I doubt my existing dermatologist would be very helpful.

I’m more of a “take charge of your own health by working with doctors” sort than a “self diagnosis” sort, so just trying to figure out what to do now...  if the meds have big side effects, it sounds like “stay gluten-free and just live with it” is the best approach?  I have been gluten-free (aside from occasional CC) for two years, and still get the rashes, so this sounds like “live with it forever.”  Which is fine, I just want to be confident that really is the best option.

[cyclinglady]

First, let me tell you that I do not suffer from DH and I am not a doctor.  That said, I have been on this forum for almost five years and have read member postings about DH.   I strongly encourage you to browse through the DH postings for tips and advice (like GFinCD suggested).  Those members (like SquirmingItch) live with DH daily.  What I have learned is that you can either being a very strict gluten free celiac or you can take Dapsone, the only known medication that has been used with DH which helps but not not cure DH.   Side effects from this strong medication must be considered.  

I have also learned that there are celiacs who can be super sensitive and those with DH seem to fall into this category.   Consider learning more outside of this forum by reading Jane Anderson’s article.  She has DH and as a result, she is very very careful in her management of her DH.  I like most of her advice, because honestly, she can visually see her gluten gluten exposures while the rest of us have no idea if we are damaging our small intestine or not.  Research the diet and DH more.  I think you will find that you probably are not as gluten free as you think.  

Keep on researching!  

[squirmingitch]

You don't need a new dermatologist b/c they can't do anything an MD can't do for you at this point. As has been said, dermatitis herpetiformis (we just call it dh for short) IS celiac disease. This is also probably why you were negative on the blood work 2 years before the endoscopy as 60% of the time, those with dh test negative on the blood panel however, on endoscopy, we do have the villi damage. Your MD can prescribe Dapsone. Personally, I wouldn't touch the stuff & if you do, then make sure you are monitored properly throughout. Your MD can also prescribe a topical steroid that actually works pretty well but boy does it cost $$$! Fluocinonide cream (or ointment) 0.05%.

Sorry but you've GOT to stop getting cc'd!!!! I read you travel for work but you HAVE to stop getting cc'd!!!! You have to start bringing your own food. That's all there is to it. Either bring your own food or go to a store & buy food wherever you are. I don't know if you travel by the day & are home every night ..... in that case just pack your lunch & snack. If you travel where you're away from home for days on end & stay in hotels, then you're going to need to have kitchenettes where you can prep your own food. Read the Newbie 101thread pinned at the top of the Coping section & that will give you a lot of info for traveling with this disease. It CAN be done!!!! We have members who travel for work, staying away from home base for weeks at a time & they manage. They have it down pat. You'll need to get a cooler & some pots & pans & supplies you take with you everywhere but it can be kept minimal.