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Celiac Disease And Other Food Intolerances
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Hello, I was found to be Celiac through the Enterolab testing. It didn't show up in the celiac blood panel. Other Enterolab results showed casein intolerance. I just got back the egg, yeast and soy and it showed mild reaction to egg and a high reaction to soy. I just don't know what to think right now as it seems there are so many foods I will have to take out of my diet. Could there possibly be a mistake? Once one stops eaten gluten is it possible the other food intolerances might go away?

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HI

ACTUALLY I THINK THAT YOU'RE LUCKY TO HAVE FOUND THIS OUT ALL AT ONCE..AS I THINK YOU'LL HEAL FASTER.

I WISH I HAD CUT DAIRY, SOY, CASEIN ALONG WITH GLUTEN WHEN I FIRST STARTED.

TESTED WITH THE LAB AFTER 20 MONTHS gluten-free AND THESE SHOWED UP.

GOOD LUCK AND KEEP ASKING QUESTIONS AND WE'LL HELP ALL WE CAN

JUDY

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I think Enterolab only tells you if you are gluten intolerant. Did they do the gene testing as well, find it positive, and say you are celiac?

I had positive results to everything (I see you don't mention yeast -- I'm jealous :lol: )

I emailed Enterolab and asked what the margin of error was, since the yeast score was so low. (The egg one was low too. But that's because I've tried to avoid eggs for years since they often caused gastric distress.) I didn't get an answer to that one.

The answer they gave me would indicate that the other intolerances are permanent. If you don't eat the foods the antibodies go down. But if you start eating them again, they go up. I've heard people say that after 6 months or a year they have been able to eat things they couldn't tolerate before. But I don't remember anyone saying this who had had the Enterolab testing.

The only research I've found relates to yeast. It found that some celiacs stopped creating the antiyeast antibodies after a time on a gluten-free diet. The abstract didn't mention them avoiding yeast.

I'm planning on staying away from everything long enough to cure the malabsorption and for the antibodies to clear out of my system. I might then try to introduce back the yeast and then the soy. Cutting out the soy is difficult since I'm vegetarian. Eating at home isn't that big a problem, but lacking soy cuts out a lot of what I can eat in a restaurant. So many Asian dishes, for instance, have soy sauce in them. A couple times restaurants have made adjustments for me, but the results have been rather tasteless.

I don't know I'm giving you any answers. Just trying to tell you that you are not alone. For what that's worth :lol:

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You might want to cut out both egg and soy for a while. Not with the paranoia required for gluten, but be very careful. After you've been gluten-free for a while start adding back small amounts of egg. If you feel bad when you eat it, then you can't eat it. Some people find they can tolerate a little, or just whites, or just yolks.

Then do the same with soy. My opinion is: if you are producing antibodies, but it doesn't make you feel bad, then limit that particular food, but don't stress about it.

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You might want to cut out both egg and soy for a while. Not with the paranoia required for gluten, but be very careful. After you've been gluten-free for a while start adding back small amounts of egg. If you feel bad when you eat it, then you can't eat it. Some people find they can tolerate a little, or just whites, or just yolks.

Then do the same with soy. My opinion is: if you are producing antibodies, but it doesn't make you feel bad, then limit that particular food, but don't stress about it.

I agree with this. Cut it out entirely in the beginning, then challenge it after a few months to see if you react. I did this with dairy, my score was 30, and I have no problem whatsoever with dairy. It doesn't bother me at all. I can't really explain why my score was so high ... but there is no test that is perfect.

I had a negative celiac blood test, negative biopsy and positive Enterolab. I am very sensitive to gluten and need to avoid it as seriously as a celiac.

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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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