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Ugh. Dh But The Dermatologist Is Stupid


glutenfreemamax2

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glutenfreemamax2 Enthusiast

I've had this rash on and off for years. The last 9 months its getting worse and worse. I was gluten-free for a year ago for a year but life dumped on me and I went back to the dark side. I was okay for a while but now I'm flairing with this rash on my ankles feet and shins. Sometimes it's my hands also. I have scars.... It itches so uncontrollable that I scratch literally until I bleed. I finally found a dermatologist on my health plan and he told me that there is no rash with Celiac, and that it's never on the legs or feet. Mine is bilateral on my legs. I told the guy to go back to school and learn about this and left. So there is no one else on my plan, and and I'm still itchy. Today was my first full day gluten-free in a year or so. I forgot how hard it was!! My boyfriend went gluten-free with me also so I wasn't alone. He's wonderful. I'm trying to teach him about it.

How do I post pictures so you can tell me what you think? The dr also told me he can't biopsy it unless the rash came and I didn't touch it. Yeah try and tell me not to scratch this thing.....


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mushroom Proficient

Uhmmm, my understanding of biopsying for DH is that you take a punch biopsy of clear skiin adjacent to the active lesion. It wouldn't seem to make any difference if it were scratched or not, so long as it was active. He is (or should be) looking for antibodies in the skin adjacent, not in the lesion itself :wacko:

squirmingitch Veteran

AND you have to be actively eating gluten diet or the dh biopsy will be negative. Don't stop eating that gluten if you are determined to get a dx.

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    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
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      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
    • tiffanygosci
      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
    • RMJ
      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
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