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Celiac And Wheat Allergy
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I was DX Celiac 3 years ago this past week. Shortly after DX, I was food allergy tested. The Dr told me I would not be positive for wheat because Celiac is auto immune etc. However, she was surprised when I reacted to wheat and barely. (skin test) I haven't thought to much about it because I must be gluten-free anyway. I've had good and bad days trying to feel better. I work at a school and am around gluten a lot! I try to do  my best at avoiding it.

 

Sometimes I notice if I am in the same room with someone else cooking gluten I start to cramp up. I just thought I was crazy until today.You know, it's all in my head thing. I was alone all weekend with no gluten in sight and I felt human! Today I picked my daughter up from her friends and she hugged me a lot. About 15 minutes later, I'm cramping and bloating. Now, call me crazy, I asked her what she had eaten. She said pancakes, am I crazy? They had made pancakes from a mix. Has anyone heard of this. I didn't want to write this, because I didn't want people to think I've totally lost it.

My daughter said she will go gluten-free all summer to see if this is truly an issue for me.

 

Has this happened to anyone else or am I crazy?

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C Kip! I am so happy to see you! ;)

 

Want my opinion--from my "gut"? sure, why wouldn't you have a reaction of some kind?

if you are still having "good and bad days" 3 years later? SOMETHING is causing you grief.

 

Celiacs can also have a wheat allergy (and I say this often) and it is entirely possible that just being around wheat flour ( or people consuming it ) is giving you continuing symptoms.

 

If your daughter is willing to go gluten-free to see if you feel better, well, kudos to her..... and frankly, she may benefit as well as I am a huge believer in the hereditary aspect of this disease--no matter what the celiac test results say/

 

It is always great to "see you" either here or on GD site. Take care, dear girl!!

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C Kip! I am so happy to see you! ;)

 

Want my opinion--from my "gut"? sure, why wouldn't you have a reaction of some kind?

if you are still having "good and bad days" 3 years later? SOMETHING is causing you grief.

 

Celiacs can also have a wheat allergy (and I say this often) and it is entirely possible that just being around wheat flour ( or people consuming it ) is giving you continuing symptoms.

 

If your daughter is willing to go gluten-free to see if you feel better, well, kudos to her..... and frankly, she may benefit as well as I am a huge believer in the hereditary aspect of this disease--no matter what the celiac test results say/

 

It is always great to "see you" either here or on GD site. Take care, dear girl!!

 

Thanks Irish!!

 

I'm about to have a break coming soon, so you will "see me" more often!

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I do have typical wheat allergy symptoms at times... last time I tried a gluten challenge, my lips, eyes, and face puffed up, and my heart raced. Classic allergy stuff...

 

But whenever I get glutened, my guts ALSO go freakin' bonkers. Classic intolerance.

 

So is it allergy or intolerance? My GI gave up trying to decide and just went with common sense: DON'T... EAT... WHEAT...

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I was just tested for Wheat allergy and I should have my results in two weeks. I accidently ingested wheat and my eyes became swollen and I broke out in hives. My doctor said that it probably wasn't wheat, but maybe my makeup. I've been using the same makeup for years and it happens to be gluten-free. I don't know what else it could have been. We will see in a few weeks what is causing this reaction. It was pretty scary and hoping it doesn't happen again. I have never once had an issue, but once I went gluten-free I have become super sensitive to a lot of different things. I'm so nervous, I don't even want to eat :(

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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