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Gluten'ed :(


firefightersgal

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firefightersgal Apprentice

I'm not exactly sure where I got a dosage of gluten, but it's quite obvious that I had some. I noticed yesterday that I had DH all over my back. Then, last night, I was unable to sleep because the backs of my legs were itching so bad. I also felt generally 'blah' yesterday. I feel more awake today, but I'm still itching. I'm guessing it will take a few careful days before it gets better. :(

On another note, I have yet to hear back from my doctor on my blood test results. I have a two-week follow up appointment on Friday, so I assume they are just waiting to tell me the results, then. How annoying. I hope, hope, hope that the blood test is positive, because I have a feeling my doctor won't take me too seriously unless it is.


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K8ling Enthusiast

If you have DH you have celiac. DH only comes with celiac. I hope you feel better!!!

Skylark Collaborator

Sorry you got into wheat. Must be awful to break out on top of feeling crummy. Like K8ling says, DH is celiac no matter what your blood test says. Also, a dermatologist can biopsy next to an outbreak of you want a firmer diagnosis.

GirlScout Newbie

sorry, a little off topic, new here... but what is DH? Thanks

firefightersgal Apprentice

I'm glad I have you all to tell me about DH=Celiac. I've read that here before, but I'm not sure what my doctor's take will be on it. He didn't seem overly thrilled when I came in with the idea of a potential diagnosis.

Side note: I hate that I spelled gluten wrong in the title of this post! I can't fix it and it's bugging me. So sorry :)

psawyer Proficient

DH refers to Dermatitis Herpetiformis, the skin rash manifestation of celiac disease.

BTW I fixed the title.

firefightersgal Apprentice

DH refers to Dermatitis Herpetiformis, the skin rash manifestation of celiac disease.

BTW I fixed the title.

Thanks for fixing my title! I knew that DH stood for Dermatitis Herpetiformis, I just meant that I appreciate that the folks here have validated that if I have DH, I have Celiac. :)


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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.
    • knitty kitty
      @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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