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Biopsy Results


channy77

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channy77 Newbie

Hello everyone, i'm new so hopefully I do this right. I went to the GI Dr. for various symptoms, he did a colonoscopy and that turned out normal, so he said he wanted to test me for something called celiac disease. I went home and looked it up on the net. Well the doc's nurse called me at work and said that the blood test results were back and the numbers were really high so they wanted to do an upper endoscopy w/ biopsy as soon as possible. While I was still out of it from sedation, the dr. talked with my hubby and told him that he was 99% sure it was celiac disease, but would know for sure when the results came back. Here's what he wrote for results

"I am delighted to report that your small bowel biopsies are normal, excluding the diagnosis for celiac disease. This, of course, is wonderful news in terms of your quality of life going forward and the lab tests are abnormal, but not definate in this regard. It is conceivable that you carry a predisposition for developing celiac disease, but there is no clinacal expression of this genetic predisposition and this would not in any way be associated with the bloating and the nausea that you experiendced." Then he went on to say he would say I had IBS, I tried 3 dif meds and none did anything. I also had an x-ray of my small bowel and it came back fine. I'm confused could I really have celiac disease and the biopsy was taken from a spot that had no damage? Or that there isn't any damage yet??


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KaitiUSA Enthusiast

Biopsies can be good but they can also miss a diagnosis altogether if there is no damage yet or if they took samples from a spot that contained no damage. With your blood work really high I would definately not x celiac off at all. You could very well have celiac disease and with your blood tests high like you said I highly suspect celiac disease. I was diagnosed by my GI doctor through a blood test.

Doctors commonly misdiagnose celiac for IBS. I would find a doctor who is knowledgeable in celiac and show him your blood tests and tell him about your symptoms.

CarolynM Newbie

Similar with us - biopsy "within normal range" No celiacs we were told. Also, told only 3 samples were taken, since then I read should have been many more and nothing else was found.

We had 2 weeks between biopsy and results. I had gone nearly gluten-free and begun to see improvement, it went back to worse when I returned her to a normal diet. After 2 weeks of loose stools again, we tried gluten-free. She has been gluten-free since August and showed improvement very quickly.

I have no official diagnosis but a healthier child.

Good luck

plantime Contributor

It sould just be that you don't have any damage yet. If you go gluten-free now, you will feel better in a much shorter time, and prevent damage from occurring. An ounce of prevention is worth a pound of cure!

channy77 Newbie

Thanks for the info, is/has anyone else uncomfortably bloated all the time? If so, did it go away after becoming gluten-free? How long did it take after going gluten-free?? I'd like to try it and see if I feel better. It looks soooo overwhelming tho :(

cdford Contributor

Yes the bloating is common and yes it does tend to settle down after being gluten-free for a while. It is the first symptom I notice when my daughter has been somewhere other than home and snuck something she wasn't supposed to. I get it as well, just not as badly as she.

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      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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    • 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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