Awaiting Diagnosis, Have A Few Questions...

[mhalpin12]

Hello. I'm a new poster to these forums, though I've been reading them for a couple of weeks. I am awaiting results from blood tests and a skin biopsy to determine if I have DH. I've done lots of my own research over the past few months, and all of it led me to believe that I may have DH. I've learned a lot from these boards, so a hearty Thank You to all of you who share so freely here. You've been an emormous help.

I broke out in the rash back in July, when I was about 6 weeks into my 5th pregnancy. Doc said it looked like PUPPS or an allergic dermatitis, told me to take Zyrtec or Benadryl and it would go away. It was worst on the fleshy part of my buttocks and was constantly irritated by my clothing rubbing it; I sit most of the day and the rash was right on that part of my bum. The bum rash has never healed up at all, though the rash on the rest of my body has come and gone, over and over again. The bum rash got so bad that I finally went to see a dermatologist. I got the inept Physician's Assistant who looked at it with disgust and told me I had Herpes. The rash is NOT on my genital area. She did NO blood work, NO biopsy, nothing. Just handed me Valtrex and said to take it for a month. I knew for a fact that there was no way I could have herpes, and I wasn't popping Valtrex while pregnant, so I asked my OB/GYN to biopsy the area at my next visit. She kindly obliged, commenting that there was no way it was herpes. She was correct; biopsy showed a psoriasis-like eczema. I have been using steroid creams on it intermittently since August, but it just doesn't get better.

I miscarried in early September, and after that, the rash all over my body just got worse and worse. I gave it some time, thinking it might be a hormonal reaction, or a reaction to the anesthesia/drugs from my D&C. But as it worsened even more, I saw an actual dermatologist at the same practice as before. He biopsied again, and it showed eczema. He gave me more steroid creams and said to come back in a month if it wasn't better. The steroids did nothing for the rash. The itcing was just horrible, as I'm sure you all know. I started doing my own research at that point, and kept coming back to DH, based on the descriptions and pictures I saw online. The rash is symmetrical, on my lower legs and my forearms, the back of my neck, chest, and lower back/buttocks. It itches like crazy and burns like fire. I finally got in to see my Internist, who is running all the blood tests for Celiac. I saw a different dermatologist to get a biopsy with immunoflouresce to check to DH. I should have the results for both of these things next week.

My question is: is it possible to have a positive DH biopsy with negative results on blood testing for celiac? My Internist ran all the labs that I requested; I printed off a list of the blood celiac tests and took it with me. I seem to get conflicting information on whether you can have DH without positive celiac tests or actual vilii damage.

Once interesting thing I noted was a salivary Adrenal Index test that I had done last year. The test was to check on my adrenals (I have hypothyroidism and adrenal fatigue issues), but one of the tests in the panel was a Gliadin Ab, SIgA. My result was borderline positive, which I found interesting. That result is a year old, but now I"m wondering if my body was beginning to be sensitive to gluten even then. What is you take on this test and the result? Does the fact that it was a saliva test significant in any way?

So much of what I've read about DH applies to my situation. It seems to have been "triggered" by my pregnancy, I have a history of hypothyroidism, and I have a history of low levels of iron, B-12, Vitamin D, etc. I've been plagued by health problems all my life, including depression/anxiety/infertility/miscarriage and bowel issues. It probably sounds crazy to say this, but I HOPE that I have DH, for then at least I'll have an answer to this hellish itching/rash, and perhaps will be able to heal all these other issues with my body.

Thanks for reading this far; I included my entire history just as my introduction to the boards. Any answers or help you can offer is so much appreciated. Thank you!!!

Michelle H. in TN

[Glamour]

Your symptoms sound like mine and DH is possible. You could also have other skin issues along with it Eczema and P. Welcome to the butt rash club and here's to us getting out of it soon!

I am no expert on the testing, but if you DID NOT go gluten free yet, you have a good chance of the DH being diagnosed in lab tests.

I can't afford the testing and was miserable to I just went gluten-free. My one test, a skin biopsy showed E & P but many derms are not aware of DH or put it far down the list, and I did not know about it either. I a peri menopausal and have read several links about hormone fluctuations and pregnancy triggering skin issues. Your other history seems to come up with things I have seen on skin issues. Many places refer to celiac and DH as autoimmune, but some say it is a different kind of situation with t-cell activites. Other AI issues sure seem to show up with a lot of celiacs.

Continue with your online research. There are others on this board that are much more experienced with this topic than me, as I have only been gluten-free for about a month.

After your testing, going gluten, dairy, free and or doing elimination diets might help you.

I am sorry for your recent loss and medical troubles. You will find a lot of support here.

[mhalpin12]

Thank you so much for the information and your kindness. And for the welcome to the butt rash club! LOL! I'm not at all happy to be a member, but it's nice to know that someone else understands the awfulness of it.

Well, I got back all my test results. All bloodwork testing for celiac were negative. Skin biopsy was also negative. They tested especially for DH with immunoflourescence. I did have a positive ANA, which suggests something autoimmune going on.

My concern now is that the biopsy wasn't done correctly. She took two places off my back, and said she was taking the biopsies right from "fresh" lesions. I had read enough to know that the biopsies should be done on unaffected skin NEAR a lesion, and I mentioned as much. She assured me she was getting some unaffected skin, too, but I couldn't see what she was doing, so I'm doubtful. I don't think it was far enough away from the lesions to be correct. From all the research I've done today, I see that if the biopsies are done on active lesions, they can give a false negative.

So now I'm wondering if the biopsy result was reliable. She said they tested the skin samples for other things and it said eczema, again. But I just can't help thinking this has to be DH; it follows the symptom pattern and description perfectly. Looks just like all the pictures I've seen all over the internet. It presents in the exact places that DH presents, not in typical eczema places. Plus the positive Gliadin Antiobidy results with the saliva tests. Even the Derm. herself said it looked like DH, just at first examination!

Has anyone had the experience of a false negative with DH? How do I go about getting another biopsy from this doctor without looking like I'm trying to tell her she did it wrong the first time? Ugh. So frustrating. I just don't want to go through the whole Gluten-Free commitment, which costs a lot of time, money and energy, if it's not necessary.

Any help or advice is appreciated. Thanks!

Michelle H. in TN

[ravenwoodglass]

First the bloodwork, doctors were so sure that I had celiac that they redid the blood tests over and over and over...but they kept coming back negative so noone even told me what the test was for or that the chances of it being a false negative was high.

I had the same experience you did with the biopsy, the doctor biopsied the lesion and I was then told that I had 'pickers acne'. All I got when I asked if 'acne' itched and burned was a blank look. Finally as a last ditch effort, I actually had given up by then, my PT insisited I see an allergist who would guide me through an elimination diet. It wasn't easy but I found one and was finally diagnosed a few weeks later. As that MD said, sometimes the body knows the answer that the testing can't tell us.

I would advise trying the diet strictly for a couple months, you have nothing to lose and in reality the diet isn't more expensive than what I was spending prediagnosis.

Here is a link to what the NIH has to say about testing for celiac. If you want to go back to the same derm bring this with you and highlight the biopsy procedure for your derm to read before the biopsy is done. She did do it wrong.

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[mhalpin12]

First the bloodwork, doctors were so sure that I had celiac that they redid the blood tests over and over and over...but they kept coming back negative so noone even told me what the test was for or that the chances of it being a false negative was high.

I had the same experience you did with the biopsy, the doctor biopsied the lesion and I was then told that I had 'pickers acne'. All I got when I asked if 'acne' itched and burned was a blank look. Finally as a last ditch effort, I actually had given up by then, my PT insisited I see an allergist who would guide me through an elimination diet. It wasn't easy but I found one and was finally diagnosed a few weeks later. As that MD said, sometimes the body knows the answer that the testing can't tell us.

I would advise trying the diet strictly for a couple months, you have nothing to lose and in reality the diet isn't more expensive than what I was spending prediagnosis.

Here is a link to what the NIH has to say about testing for celiac. If you want to go back to the same derm bring this with you and highlight the biopsy procedure for your derm to read before the biopsy is done. She did do it wrong.

Open Original Shared Link

Thank you so much for the link. It was very informative about the biopsy procedure. Now I have to decide whether to go to yet another dermatologist for yet another biopsy, or just try Gluten Free Diet on my own. I'm sick of having pieces of my skin cut out, since they take so long to heal and look all purple-y afterwards. But I really want to know if correctly done biopsy would show up positive.

I'm struggled with going Gluten Free because I did have some blood allergy tests come back with allergies to eggs and corn. The corn was a level II allergy, which is significant enough to cause this rash, IF it is eczema. I don't want to embark on the gluten-free diet if the problem is really corn. I guess the rash COULD be eczema, but the presentation of it, and the location of it, follows a DH pattern. I don't know what to do. Guess I need to pray about it and explore the options again. Thanks again for your help!

Michelle in TN

[nmlove]

I'm struggled with going Gluten Free because I did have some blood allergy tests come back with allergies to eggs and corn. The corn was a level II allergy, which is significant enough to cause this rash, IF it is eczema. I don't want to embark on the gluten-free diet if the problem is really corn. I guess the rash COULD be eczema, but the presentation of it, and the location of it, follows a DH pattern. I don't know what to do. Guess I need to pray about it and explore the options again. Thanks again for your help!

Michelle in TN

Could you work on no corn, see how it goes as far as the rash? No improvement, then go gluten free and see. One thing at a time so you're not questioning your results. Just a thought...

[mhalpin12]

Could you work on no corn, see how it goes as far as the rash? No improvement, then go gluten free and see. One thing at a time so you're not questioning your results. Just a thought...

Yes, that option is on my list of directions to take. Corn, however, is even more difficult to remove completely than gluten. It's not recognized as a standard allergen that must be put on food lables, like eggs, wheat, milk, nuts, etc. I've done some research on going corn free, and corn/corn derivatives are in everything!!!! I'm no stranger to special diets, as we've followed the Feingold Diet for years for my son's autism/ADHD. We eliminate all artificial flavors, colors and petroleum based preservatives, plus an entire category of fruits/veggies with high salicylates. We eat only foods that have been carefully researched by the Feingold Association. I know how to work with those kinds of restrictive diets. But I guess I'm just feeling overwhelmed by the thoughts of going gluten or corn free IN ADDITION to the already restrictive diet we do with Feingold. I know I could do it, if I had some really hard evidence that corn or gluten was definitely the problem. But at this point, I don't have anything more than conjecture. The corn and egg allergy results were a shock, because I've never had any kind of food issues before, and even when I load up on corn products, there is no change in the rash on my body.

Sigh. I just want some kind of test result or something that would give me the assurance that going gluten free or corn free was the right direction to go. Putting in months with food restrictions, with the potential for no results, feels disheartening. I just need some indication that gluten or corn is definitely the problem. I guess that positive corn allergy test is good enough proof, but I wish I could go gluten free instead of corn-free. Seems easier.

I guess I'm hesitating because I've seen my in-laws make these huge, sweeping diet changes based on some little bit of information they read somewhere, with no actual medical proof. My FIL has major health issues and has been on every diet you think of. At one point the man was eating nothing but rice and water, as they searched for what was ailing him. They would never see a doctor or get any tests or professional help, and they're still trying every new diet they come across. Interestingly, he's done the best on a Gluten Free diet, which makes me think he was a celiac all along. But they still come up with random things they think he can't eat, and it's maddening to see them do all this on their hunches. I just don't want to do that to myself. I'm no friend of the medical community, much preferring alternative practitioners and therapies. And I don't believe for a minute that doctors and tests can help everything. But for some reason, I feel like I need some kind of positive test that gluten is the problem. Still thinking it through and considering all the options.

Michelle in TN