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Testing


JUDI42MIL

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JUDI42MIL Apprentice

I have a question? I had the blood work for celiac done, and it came back positive. My doctor said there was no reason to then have a biopsy done as the bloodwork was positive. Ive been reading a lot on this board that most it seems after a positive bloodwork have the biopsy. So question is , is the biopsy needed?????

he also said he doesnt even have to waste anyones money to test my one daughter. that because I have it and my mom has it, and with her symptoms, he is 98 % sure my daughter has it without any testing.

So do you think he is right? Or do we need the biopsy?


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lovegrov Collaborator

If your mother has it and you have symptoms (do you, you didn't say) and your bloodwork is positive, the odds are higher than 99 percent that you have it. Do you need the biopsy to convince yourself and to stay on the diet? If so, tell your doctor that. If not, you don't need the biopsy. But whatever you do don't decide to skip the biopsy now only to come back later and do a challenge to get one.

As for your daughter, the same question applies. Do either you or she need to see some test results to be convinced?

richard

GEF Explorer

I'm with Richard on your probability of having celiac. Now, apparently you need to be biopsy-proven to participate in some celiac studies... and I'm not sure if the tax-relef would apply to that as well. Perhaps someone could shed a light on that.

Gretchen

Guest missyflanders

I think for the tax relief you just need a diagonosis from a doctor, which she has.

kschmitz Newbie

I had a history of anemia, GERD, low thyroid function, early onset osteoporosis, bloating, gas, constant fatigue, etc. After experiencing unexplained weight loss, my internist referred me to a gastroenterologist, who after looking at my history, ordered the blood tests for celiac disease. The tests were positive, and with my other medical history, my doctor said that a biopsy was not necessary to diagnose me with celiac disease. My doctor also said that the "best test" is improvement from symptoms with the gluten free diet. If your symptoms are diminishing and you are feeling better, why would you need to have any more tests?

My sister, who was diagnosed with Type 1 diabetes and IBS about ten years ago, had the blood tests for celiac disease after my tests were positive. She also tested positive. She is encouraging her two daughters and their children to be tested.

My daughter, who had dh-like symptoms from age 12 until 19, also had the blood tests recently and was IgG positive only. She is now having her daughters checked.

I can't talk my son into having the tests, but he is soon to be a new father, and I think he will probably come to terms with the possibility of having celiac disease, especially since so many of our family are showing positive test results.

ks

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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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