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Possible Gluten Intolerance & Questions, Please


Jujbe

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Jujbe Rookie

This is all so new to me that I'm not sure I even know what to ask yet. I'll try to be clear so bear with me if this sounds rambling. Questions will be in bold to see them easier.

I strongly suspect gluten intolerance but never had any idea I had trouble with it before. I chalked up my somewhat looser bowels & lots of gas to what I inherited from my mom as she's the same. When I came out with this indescribably itchy rash starting a month ago, I looked for answers on the cause. I've never shown (other than loser bowels & gas) any allergic reactions to any foods, drugs, or airborne allergens. My immune system is strong - I don't get colds, flu or infections from cuts or punctures ever. So never thought I might be gluten sensitive. But looking at dozens & dozens of photos of dermatitis herpetiformis, I was struck at how much my rash looked like those. It sure didn't look remotely like any other rash either. And the itch was worse than I've ever had before & I had scabies once years ago. It doesn't hold a candle to this itch!

So if I have gluten intolerance (which I guess means I have celiac disease) because of DH, does that mean I also have pathological changes (of some degree) in my intestine? About 15 years ago, another doctor had me tested for nutrient deficiencies because I bruised so easily. But my iron was normal & B12, folic acid levels & a few others came back in the high normal range. All was good. Mind you, I took extra supplements as I've always had low stomach acid & was worried about assimilation of nutrients. And I've always eaten very healthy, no junk food, home-grown (mostly) & home cooked.

I have some of the other linked disorders that come with celiac disease but not severely. And some things don't seem to fit - like my excellent immune system, very strong bones (I've worked hard though, always drank milk & ate cheese & took extra vitamin D - 1000 IU halibut liver oil capsules). Could I still have celiac disease?

I'm thinking perhaps my rash appeared because I'd been eating a lot of gluten lately (I bake my own foods & use extra gluten when I add various non-wheat flours) & seaweed. I read about the link of iodides wit DH. I love seaweed & eat it in various forms - been pigging out on it lately. Could that be why this rash decided to appear now after so many years?

I'm just confused still. Not so much about how celiac disease is but with the range of its symptoms, how severe or mild they may be & how it relates to me. I'm still waiting on the results of the blood tests. If negative, I'll be referred to a specialist. Right now, I'm driven to distraction trying not to rip at myself any more than I have to. I have stopped ALL gluten though - even any possible hidden sources by simply not eating those foods.

Thank you anyone for any answers or enlightenment you can provide.


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    • trents
      Do the skin care products that give you a rash list wheat as an ingredient or are you assuming from your reaction that they contain gluten? It is possible that not only do you have celiac disease, which is not an allergy but an autoimmune disorder, but that you also have a wheat allergy.
    • allis
      Thank you, I’m very happy to be here!! Yes, lately I get rashes and itching when I accidentally use topical skin products with gluten in them. I got a bad rash around my hairline after unknowingly using glutenous hairspray, and a near-full-body rash with a sea salt spray that I guess I rinsed off insufficiently in the shower. Neither looked like typical dermatitis herpetiformis to me based on the posts I’ve read here—both were just large patches, red and slightly raised, with no blisters to speak of. At least yet. The sea salt spray was used yesterday and I noticed the itching this morning, with the rash forming obviously by this afternoon and evening. 
    • Sarah Marie
      Thanks so much for your thorough reply! I was able to schedule with the local pediatric gastroenterologist who specializes in celiac but we have to wait 3 months to see her. 
    • trents
      Sorry, meant to type "or dermatitis herpetiformis for short". What? Every time I try it, the abbreviation for this skin condition is converted to the full length term. I'm trying to type "D" followed by "H". 
    • trents
      Welcome to the forum, allis! By "skin response to gluten products" are you saying you develop a rash when you use lotions, creams, shampoos, etc. that contain gluten? One of the classical symptoms of celiac disease is a skin rash known as dermatitis herpetiformis or "dermatitis herpetiformis" for short. Celiac disease is the only known cause for dermatitis herpetiformis. It has a distinct appearance. It has little blisters or pustules in the bumps. Does this sound like what you experience? Is so, it might be possible to get a punch biopsy done when you are having an outbreak. This would be an alternative to eating gluten. If your skin biopsy was positive for dermatitis herpetiformis you could be diagnosed with celiac disease on that basis alone. Apart from that, I know of no other way to get a diagnosis apart from returning to eating gluten for a period of weeks.
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