1 Year Gluten Free And Still A Score Of 6

[alscat]

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.

[kareng]

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

[dilettantesteph]

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: 

Open Original Shared Link

 

The diet is mainly one of unprocessed foods.  This subject is discussed more here: Open Original Shared Link

 

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.

[alscat]

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.

[pricklypear1971]

The Ttg-iga can be falsely elevated in the presence of another developing autoimmune disease.

Open Original Shared Link

[StephanieL]

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).  

[alscat]

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).  

[StephanieL]

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

 

 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.