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RakkasanWife

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RakkasanWife Rookie

Hi folks....I'm needing some help!

My 11yo daughter was diagnosed about 2 1/2 weeks ago with celiac disease. This was based solely on description of symptoms. The doc has not run a single test and didnt know I have a family history of celiac disease untill after she told me her diagnosis. Well, we immediatly put her on the gluten free diet. I did see some improvement almost immediately (she stopped needing pepto bismol two-three times a week, and her attitude started improving). But knowing how military medicine seems to be all knowing (*cough*yea-right*cough*) I decided to put her on an extremely reduced gluten diet after two weeks of being gluten free. That way there would be *some* gluten in her system so they could at least run the blood tests once we get to our next duty station.

So her first gluten containing meal in two weeks...she had one small pig-in-a-blanket and two pieces of sweet and sour chicken (breaded in whatever it is that they bread it in to get that smooth texture) and miscelaneous other items that she has had before on other occasions.

Before she even finished eating, she started breaking out in hives at the dinner table!!! All up her chest and around her back. We gat home, she took her zyrtec and they went away.

Now is this a "normal" reaction for someone with celiac disease or a food alergy? I'm asking so I know whether she needs to see the GI doc and an alergist, or just the GI or just the alergist, etc.

Thanks!

btw, we're back to exclusively gluten free....screw the tests!


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Mtndog Collaborator
Hi folks....I'm needing some help!

My 11yo daughter was diagnosed about 2 1/2 weeks ago with celiac disease. This was based solely on description of symptoms. The doc has not run a single test and didnt know I have a family history of celiac disease untill after she told me her diagnosis. Well, we immediatly put her on the gluten free diet. I did see some improvement almost immediately (she stopped needing pepto bismol two-three times a week, and her attitude started improving). But knowing how military medicine seems to be all knowing (*cough*yea-right*cough*) I decided to put her on an extremely reduced gluten diet after two weeks of being gluten free. That way there would be *some* gluten in her system so they could at least run the blood tests once we get to our next duty station.

So her first gluten containing meal in two weeks...she had one small pig-in-a-blanket and two pieces of sweet and sour chicken (breaded in whatever it is that they bread it in to get that smooth texture) and miscelaneous other items that she has had before on other occasions.

Before she even finished eating, she started breaking out in hives at the dinner table!!! All up her chest and around her back. We gat home, she took her zyrtec and they went away.

Now is this a "normal" reaction for someone with celiac disease or a food alergy? I'm asking so I know whether she needs to see the GI doc and an alergist, or just the GI or just the alergist, etc.

Thanks!

btw, we're back to exclusively gluten free....screw the tests!

Hi- If they were truly hives, it sounds like an allergic reaction. But, there is a reaction with celiac called DH where the skin breaks out. I don't have it so I don't know much about it but there is a whole section of this board devoted to it (Dermatitis Herp.)

But if the antihistamine worked, you could be dealing with an allergic reaction. There are lots of people on here who are both allergic/intolerant so maybe they can help you more.

Welcome though- that must have been SO scary. I'm sorry you and she had to go through that. :( Beverly

RakkasanWife Rookie
Hi- If they were truly hives, it sounds like an allergic reaction. But, there is a reaction with celiac called DH where the skin breaks out. I don't have it so I don't know much about it but there is a whole section of this board devoted to it (Dermatitis Herp.)

But if the antihistamine worked, you could be dealing with an allergic reaction. There are lots of people on here who are both allergic/intolerant so maybe they can help you more.

Welcome though- that must have been SO scary. I'm sorry you and she had to go through that. :( Beverly

Thanks Beverly

I guess thats what I was wondering....if it was possible for it to be both (intolerance and now allergy).

It wasn't all that scary...I was an EMT in the Army, so I knew it wasnt a severe reaction, so Morganne saw me reacting nonchalantly and followed suit. I think we were both more annoyed (and at the same time kinda resigned to going back on the diet). At least she's stopped complaining about it (as much lol). She's actually checking labels now and helping me to figure out what she can and can't eat. She's starting to accept that she cant have wonder bread anymore and that she's going to have to find a way to get used to new flavors and textures of old favorite foods.

Thanks again!

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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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