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confusing blood results


Erin1712

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Erin1712 Newbie

I was tested in 2012 and my tests came back positive. But I never got my results. A few weeks ago I got the test results and the family doctor said I have celiac disease. I went gluten free and know when I have had gluten now. I feel so much better. But because I had such a long time before I got my results I got another test. That blood test came back normal even though I had not been gluten free much. I did one day without and then one day with. Back and forth. So at the time of testing I had done 2 days gluten free with 10 days of on and off gluten free before that. Is that enough to make my results go down to normal? Here they don't transfer you to a GI doctor for biopsy to diagnose. 

The plus side is that my 2 year old was diagnosed and is doing much better. 


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MatthewK Newbie

Yes, your results can be skewed by the fact that you were not eating enough gluten.  This is what I tell everyone who tell me that the have celiac symptoms;  Go get a Gene test to see if you carry the DQ2, or DQ8 gene, If you carry either or both, you have the ability to have Celiac disease, if you don't have either than you cannot have celiac disease.  In my opinion if you have several of the over 200 possible Celiac symptoms, and also carry one of the genes, assume you have the disease.  More importantly check to see if your child has the gene too.  You can eliminate a lot of guessing by getting the gene test.  

Another thing I tell people new to the Celiac world is to buy the book Recognizing Celiac Disease, by Cleo J. Libonati, RN, BSN.  It gives all the signs, symptoms, etc.  Look on abebooks.com I've bought several for friends and family.

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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
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      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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