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Testing Question


rjshill

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rjshill Newbie

I have been having symptoms of gas bloating diarrhea and constipation alternating fatigue headache low vit. d (extremely) boarder line low b12 and depression for the past 2 years. Last summer I had a celiac lab panel completed and the doctor said it was negative. I then had an upper endoscopy. The GI doc said that my bowel had a very smooth appearance and he suspected celiac. However, he only took one biopsy and then said the result came back negative. The pathologist never commented on the villi on his report. I am trying to decide whether just to go ahead and try going gluten free and seeing if it helps or if I need to push for more testing to get a valid negative test result. Any opinions?


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mushroom Proficient

Do you have a copy of the results of the celiac panel that was run?  Sometimes this can provide some clues, especially if he went on to do the endo with biopsy.  If you don't have a copy it is always a good idea to get one, and if you would care to share we might be able to comment.  One sample is certainly not diagnostic on the endo because celiac often has a very patchy presentation and it is easy to miss damaged areas.  A minimum of 6 is recommended. 

rjshill Newbie

so it says ttg antibody, iga < 3 was my results and < 5 is what they refrence as negative my immunoglobulin a was was 155 81-463 normal. These are the only labs she ran to say my celiac labs were negative. Can anyone help me with these?

mushroom Proficient

That tTG is definitely negative, and is validated by your normal immunoglobulin result.  BUT, the tTG was the onlly test run.  I would try to have a doctor order the DGP (Deamidated Gliadin Peptide) in both IgA and IgG versions.  This is a newer test and more sensitive and specific to celiac than any of the other tests.  If this is also negative then you may well be non-celiac gluten intolerant.  You would need to be gluten free either way :) and once all testing is completed give the diet a good 4-6 month trial.

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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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?
    • jenniber
      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.
    • trents
      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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