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What Kind Of Doctor Should I See First?


-renee-

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-renee- Newbie

This is my first post. I've called around to a few doctors offices and they don't seem to have an answer to my question. Here it goes:

Short history: Back in February 2011 my son was diagnosed with an IgE allergic reaction to wheat and gluten. I took him to an alternative medicine doctor for this testing because all of his other pediatricians where sloughing us off despite the vomiting for 24-48 hours a week. BUT he didn't have diarrhea, "it couldn't be celiac". Anyway we immediately took him off of many food, mainly gluten and diary. He gets too sick to put him back on the food for celiac testing. At that alternitve medicine appointment the doctor looked at my and said "you are sensitive to gluten also - I can tell my your flaming red face, red ears and hands". I went gluten free too.

Fast forward: Since February 2011 I have cheated and had gluten 3x (First time a beer in Disney, Second time I ate wheat for 4 days only because I had a celiac panel done - which came back negative - and 3rd time was a mistake of soy sauce). Each time I've had gluten I get a horrible blistery rash that cracks and bleeds on my right index and middle finger. I used to have this chronic rash that went diagnosed as dermatitis by a dermatologist. Dr didn't do a biopsy or anything, just a casual look-see.

Here is the question: Should I schedule a dermatologist appointment and eat wheat about a week before so the rash is in the worst stage? Or should I skip the dermo and go straight to a GI even though I have no GI symptoms and my panel came back negative?


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GlutenFreeManna Rising Star

This is my first post. I've called around to a few doctors offices and they don't seem to have an answer to my question. Here it goes:

Short history: Back in February 2011 my son was diagnosed with an IgE allergic reaction to wheat and gluten. I took him to an alternative medicine doctor for this testing because all of his other pediatricians where sloughing us off despite the vomiting for 24-48 hours a week. BUT he didn't have diarrhea, "it couldn't be celiac". Anyway we immediately took him off of many food, mainly gluten and diary. He gets too sick to put him back on the food for celiac testing. At that alternitve medicine appointment the doctor looked at my and said "you are sensitive to gluten also - I can tell my your flaming red face, red ears and hands". I went gluten free too.

Fast forward: Since February 2011 I have cheated and had gluten 3x (First time a beer in Disney, Second time I ate wheat for 4 days only because I had a celiac panel done - which came back negative - and 3rd time was a mistake of soy sauce). Each time I've had gluten I get a horrible blistery rash that cracks and bleeds on my right index and middle finger. I used to have this chronic rash that went diagnosed as dermatitis by a dermatologist. Dr didn't do a biopsy or anything, just a casual look-see.

Here is the question: Should I schedule a dermatologist appointment and eat wheat about a week before so the rash is in the worst stage? Or should I skip the dermo and go straight to a GI even though I have no GI symptoms and my panel came back negative?

If you are tryign to get a dr diagnosis I would go to the dermatologist first. They don't need your rash you be at it's worse but they do need an active legion to see. Make sur eyou tell the derm that your other dr told you that you have a glutne intolerance and that you have noticed a change in the rash since going gluten-free. To test for DH They should biopsy the clear skin next to the blisters, not the blisters themselves. If you get a diagnosis of DH you have celiac disease--the skin form. You don't need any further testing. Any intestinal biopsy you have at this stage will be unlikely to be positive for damage anyway. The same with the blood tests--you most likely haven't been on enough gluten for the past 9 months to keep antibodies active.

JoshB Apprentice

It sounds like you and your son are allergic to wheat rather than gluten intolerant. I think you could test that without eating wheat for a long time, just get an allergist to do a prick test.

If your reactions are that quick and clear, I'm not really sure what a doctor or a diagnosis is going to do for you. You'll have to eat wheat for several months to test for celiac antibodies, and frankly I don't think you'll be positive. What difference does it make to you if the rash is allergic or auto-immune? Either way you're not going to want to eat wheat. I guess it would be nice to figure out if anti-histamines help you.

ravenwoodglass Mentor

Unless you go back on a full gluten diet for at least 2 to 3 months you can't be tested for celiac. Your rash does sound like the skin form of celiac, DH. Do go to the derm and tell them you want them to look for DH. As mentioned you do need to have an active lesion and the doctor needs to biopsy next to the lesion and the lab needs to be looking for DH.

By the way not all celiacs have D. Some have C and some will vomit and some will have no GI issues at all. We can also be celiac and have an actual allergy to wheat at the same time.

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  • Posts

    • trents
      Unfortunately, the development of celiac disease usually is not an end in and of itself. It usually brings along friends, given time. It is at heart an immune system dysfunction which often embraces other immune system dysfunctions as time goes on.
    • Celiacpartner
      Thanks so much for the responses. I will urge him to go for further investigation. To be 48yrs old and develop a new allergy.. ugh, As if celiac disease isn’t enough! 
    • trents
      This does not seem to be an anaphylactic response but I agree it would be wise to seek allergy-food sensitivity testing. You might look into ALCAT food sensitivity testing.
    • Rogol72
      @Celiacpartner, I agree with Scott. We have a food festival yearly in the town I live in, with artisan food stalls everywhere. I spoke to the owner of one of the artisan burger stalls, enquiring if the burgers were gluten-free when I said I was Coeliac ... he said he had a serious anaphylactic allergy to fish himself. He possibly carries an epi-pen or two everywhere he goes. I would go see an allergist as soon as possible as suggested.
    • Scott Adams
      After years of stable management, developing new symptoms to historically safe foods like nuts and fish strongly suggests a secondary issue has developed. It is highly unlikely to be a new gluten issue if the foods themselves are certified gluten-free. The most probable explanations are a new, separate food intolerance (perhaps to a specific protein in certain nuts or fish) or a true IgE-mediated food allergy, which can develop at any age. The symptoms you describe—cramps and the urge to vomit—can be consistent with either. It is crucial he sees an allergist for proper testing (like a skin prick or blood test) to identify the specific culprit and rule out a serious allergy, as reactions can sometimes worsen with repeated exposure.
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