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ABQturkey

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ABQturkey Rookie

This is utterly embarassing, but has anyone else suffered from this as a symptom of a food allergy? I've been tested for celiac disease twice (blood test - both negative) because my 9yo daugter was diagnosed with it 4 years ago. I went to a colo-rectal surgeon because I thought he would be able to help me, but he told me I had this condition and that it was probably the most common thing that he diagnoses, yet I had never heard of it. Then I went to an allergist who did the skin prick test, but apparently I'm not allergic to anything - I cried. I was hoping he would have an answer for me and I could go home and avoid this or that and it would clear up. I'm so miserable - this has been going on for a long time and it's ruining my life. I'm doing an elimination diet, but funnily enough, I can eat potatoes, tomatoes and peppers, which kind of surprised me. I haven't seen anyone mention this before, maybe because of the nature of the condition (look it up - I'm not going to go into the gorey details). Is there anyone else out there who knows what I'm going through? :(


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Goddessheart Newbie

This is utterly embarassing, but has anyone else suffered from this as a symptom of a food allergy? I've been tested for celiac disease twice (blood test - both negative) because my 9yo daugter was diagnosed with it 4 years ago. I went to a colo-rectal surgeon because I thought he would be able to help me, but he told me I had this condition and that it was probably the most common thing that he diagnoses, yet I had never heard of it. Then I went to an allergist who did the skin prick test, but apparently I'm not allergic to anything - I cried. I was hoping he would have an answer for me and I could go home and avoid this or that and it would clear up. I'm so miserable - this has been going on for a long time and it's ruining my life. I'm doing an elimination diet, but funnily enough, I can eat potatoes, tomatoes and peppers, which kind of surprised me. I haven't seen anyone mention this before, maybe because of the nature of the condition (look it up - I'm not going to go into the gorey details). Is there anyone else out there who knows what I'm going through? :(

Yes, me. I had it from gluten. I kept thinking my kids had given me worms lol. Now I sometimes get a different version where.. um well it's like when I go to the toilet it feels like it's burning, and then later (I think because the irritation is healing) it itches. I am pretty sure that is a food reaction, but I don't know what to. I used to think casein but not so sure now.

txplowgirl Enthusiast

Yes. I get it when I've been glutened.

Korwyn Explorer

Yes, I used to suffer from this horribly. I didn't know it had a name until now and I never associated it with celiac disease or gluten!! When I read this I realized that I haven't experienced this is at least a year or more! I used to deal with it every few days and it has faded away!!! Wow! Another thing to chalk up to going gluten-free/CF that I didn't realize had changed.

jenngolightly Contributor

I had this for years and years. :(

It still bothered me even after I went gluten-free. However, it FINALLY cleared up when I went on an elimination diet and found I was allergic to tree-nuts and intolerant to corn. After removing these from my diet, the symptom cleared up.

I totally feel for your misery. I hope you feel better soon. Maybe you are intolerant to something else and can find what it is with an elimination diet? Is it constant? Have you kept a food diary?

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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
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      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.
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      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
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      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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