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What Do You Think?


MamaMeagan

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MamaMeagan Apprentice

Okay I've made a few posts like this, but my GI doctor decided to run the gene test on me, not really sure why, because well he still said it doesn't always mean anything.

These are the testing I've had done and the results....positive IgG and IgA, but negative ttg. Had a scope had inflammation and some errosions healing. Responded VERY well to diet, until I had to cut out dairy also, now doing very well with no dairy or gluten. Then I had the gene test which showed I do carry the celiac genes.

My doctor said with the scope, you have 15 feet on intestines and he only sees a foot, so it is possible to miss it. He said could be just a gluten intolerance also or could be Celiacs. I don't know he just said in the end it's the samething, but to me if you are just intolerant you can be a little more leniant, ya know?

I am having the enterolab testing done. I plan to show him that when I go in April. We are also having chronic loose stools with my 2 year old, he is also having enterolab testing done.

So what do you think??


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Wolicki Enthusiast

Okay I've made a few posts like this, but my GI doctor decided to run the gene test on me, not really sure why, because well he still said it doesn't always mean anything.

These are the testing I've had done and the results....positive IgG and IgA, but negative ttg. Had a scope had inflammation and some errosions healing. Responded VERY well to diet, until I had to cut out dairy also, now doing very well with no dairy or gluten. Then I had the gene test which showed I do carry the celiac genes.

My doctor said with the scope, you have 15 feet on intestines and he only sees a foot, so it is possible to miss it. He said could be just a gluten intolerance also or could be Celiacs. I don't know he just said in the end it's the samething, but to me if you are just intolerant you can be a little more leniant, ya know?

I am having the enterolab testing done. I plan to show him that when I go in April. We are also having chronic loose stools with my 2 year old, he is also having enterolab testing done.

So what do you think??

Your blood tests were positive. The cure for either Celiac or Gluten intolerance is a life long gluten free diet. And sorry to say, your doctor is wrong. You have to be 100% gluten free, with either diagnosis. Once in a while cheating is not an option- at least not if you want to heal.

MamaMeagan Apprentice

Hmm they wrote on my lab work the blood test, questionable for celiac not for diagnosis??

katifer Apprentice

Okay I've made a few posts like this, but my GI doctor decided to run the gene test on me, not really sure why, because well he still said it doesn't always mean anything.

These are the testing I've had done and the results....positive IgG and IgA, but negative ttg. Had a scope had inflammation and some errosions healing. Responded VERY well to diet, until I had to cut out dairy also, now doing very well with no dairy or gluten. Then I had the gene test which showed I do carry the celiac genes.

My doctor said with the scope, you have 15 feet on intestines and he only sees a foot, so it is possible to miss it. He said could be just a gluten intolerance also or could be Celiacs. I don't know he just said in the end it's the samething, but to me if you are just intolerant you can be a little more leniant, ya know?

I am having the enterolab testing done. I plan to show him that when I go in April. We are also having chronic loose stools with my 2 year old, he is also having enterolab testing done.

So what do you think??

I am just going to add that the reason i went to be tested was because my child was having chronic lose stool and was struggling to gain weight/and grow. Both of our tests came back negative.(unfortunately i was put on an elimination diet while breastfeeding and gluten had been out of my system for a while) He was diagnosed failure to thrive(born a 9lb)...under the 2nd %...took gluten out of his diet and has been great since...he and i both have the gene and his endoscopy was fine but he had already been off gluten for too long they shouldn't have even done it. I will be honest it was a VERY hard decision to make without every test coming back positive but the doctors at Emory in Atlanta just said if he cannot tolerate it then it is not good for him. He is 3 now and my 5 year old and i all are gluten free. They are both doing so well--they are not catching ever sickness anymore(they rarely ever get sick), they do not know the difference when it comes to gluten free food and they know what they are allowed to have. We eat well and they are so much more healthy than before. My 3 year old is growing and doing well. The doctors believe that i have celiac because of all my symptoms,gene test and i am very,very small compared to the rest of my family...i stopped growing in 6th grade. Celiac and food intolerances..anything that makes your food rush through your body means you are not getting the proper nutrition and your body suffers. i hope you can find a support group to help if you decide to go fully gluten free-it has saved our family from sooo much pain. God Bless

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    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
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    • Scott Adams
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    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
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