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1 Year Gluten Free And Still A Score Of 6
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ARG - any idea's, 12 year old son & 8 year old daughter plus myself have been Dairy & Gluten Free for 1year now. My daughter still has stomach issues and pain AND is still a 6 on the celiac blood test.

 

We are 100% Gluten Free - we just in the last month have started to eat foods with milk in them - but not Dairy products.

 

Any ideas - the GI specialist just stated that she is still getting this in her diet - so we have no clue as to how.

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What test and what are the reference ranges? The ones I have taken a 6 would be negative.

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What do you mean by 100% gluten free?  Different celiacs have different levels of sensitivity to gluten.  Some celiacs who had been diagnosed with refractory celiac, or who were still having symptoms on the typical gluten free diet improved when they went on a gluten contamination elimination diet in this study: 

http://www.biomedcentral.com/1471-230X/13/40/abstract

 

The diet is mainly one of unprocessed foods.  This subject is discussed more here: http://celiacdisease.about.com/b/2013/03/04/study-trace-gluten-responsible-for-ongoing-celiac-symptoms.htm

 

I needed to eliminate even some of the foods in the GCED diet in the study.  What helped me figure out what I can eat was keeping a food/symptom journal.

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She takes a TTGIGA and normal range is < 6

I will have to read the studies provided by the other reply before I comment -

 

What test and what are the reference ranges? The ones I have taken a 6 would be negative.

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I would think "accidental" exposure as opposed to another developing disease. Also, some people take longer to get down to "normal". I would examine all your foods, condiments, prep areas, utensils, small appliances, cutting boards and all.  If you do all that and another 6 months goes past with still no improvement, perhaps look into there causes. I know we found a mustard that was part of this issue (I purchased some gluten detecting strips to test products we didn't get good manufacturing info from).  

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Thanks - where did you get the strips? I have only found really expensive ones - $40/3 (i think)

 

Thanks above pricklypear - for the articles,

 

we originaly did not want to freak out and replace all stuff in house - but that is where we are now -

 

I like the celiac elemination diet - we eat pretty healthfully so this shouldn't be too terrible

 

 

I would think "accidental" exposure as opposed to another developing disease. Also, some people take longer to get down to "normal". I would examine all your foods, condiments, prep areas, utensils, small appliances, cutting boards and all.  If you do all that and another 6 months goes past with still no improvement, perhaps look into there causes. I know we found a mustard that was part of this issue (I purchased some gluten detecting strips to test products we didn't get good manufacturing info from).  

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Thanks - where did you get the strips? I have only found really expensive ones - $40/3 (i think)

 

:blink: Yeah. Those are them. We narrowed down what we thought could be the culprit and had 3 that we tested. This was after a lot of calls and emails to companies to decrease what we needed to test. 

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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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