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Mother of a Celiac

Is The Biopsy Completely Necessary After A Positive Blood Test?

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Hi- after years of unexplained allergic reactions, chronic itching, stomach aches, and being chronically ill with colds and viruses, we finally have an answer and are actually relieved. Our 6 year tested positive with a blood test for Celiac and she has now been gluten free for 5 days. My husband and I have decided that we will have a gluten free house instead of just limiting her diet, to make it easier fixing meals and hoping that it will help our daughter not feel so different after years of elimination diets, testing, and doctors visits. Recently she has had multiple allergic reactions to different antibiotics, is it necessary to put her thru the biopsy test if the blood test was overwhelmingly positive? Does this really need anymore confirmation? I just can't see putting her thru an operation just for

the 'golden seal' and putting her back on gluten which will further delay her progress. She has missed 25 days of school this year already. We really want to just move forward now.

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Hi- after years of unexplained allergic reactions, chronic itching, stomach aches, and being chronically ill with colds and viruses, we finally have an answer and are actually relieved. Our 6 year tested positive with a blood test for Celiac and she has now been gluten free for 5 days. My husband and I have decided that we will have a gluten free house instead of just limiting her diet, to make it easier fixing meals and hoping that it will help our daughter not feel so different after years of elimination diets, testing, and doctors visits. Recently she has had multiple allergic reactions to different antibiotics, is it necessary to put her thru the biopsy test if the blood test was overwhelmingly positive? Does this really need anymore confirmation? I just can't see putting her thru an operation just for

the 'golden seal' and putting her back on gluten which will further delay her progress. She has missed 25 days of school this year already. We really want to just move forward now.

Our 2 year old has celiac and our specialist said that a biopsy is the only way to make a 100% dignosis. The biopsy wasn't that bad it only took like 45 minutes between her leaving the room and coming back. It was also helpful to see how much damage this disease can really do, so we could fully understand the importance of being gluten free. It may not be completely necessary but for us it was helpful. Good Luck

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It's really a personal decision. Talk to the doctor. For us, our oldest had a very positive blood test, no family history. The GI doc talked to us about it, saying they look to make sure it's celiac (at that point, there was a 5-10% chance it was something else), to see the damage done(could affect aggressiveness of treatment beyond just gluten-free diet) and to see if something else was going on as well as celiac that could affect recovery. My son did great with the endoscopy (4 yrs old). We were able to be with him right up to him going in the procedure room where he was put under. My husband and I were in the waiting room maybe ten minutes when the doctor came out with the "unofficial" results. When my second son (2 yrs) then tested positive, based on the test used, their GI doc said we could bypass the endoscopy but he did mention at their first follow-up this week that it's not totally out of the question yet. Basically if he's not responding as he should be by 6 months.

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It is completely a personal decision. We did the biopsy with our son, but we new nothing about Celiac back then. I don't know if we would go through it knowing what we know now...Also, it was costly. Even with a very good insurance plan, our co-pay was still really high. I know it is the gold standard, but I would really like to see some hard scientific data on the number of negative biopsies with positive blood tests. And if I already had a child on the gluten-free diet and they were responding to it, I don't think I could put them back on gluten. It's definitely a personal decision...

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It is completely a personal decision. We did the biopsy with our son, but we new nothing about Celiac back then. I don't know if we would go through it knowing what we know now...Also, it was costly. Even with a very good insurance plan, our co-pay was still really high. I know it is the gold standard, but I would really like to see some hard scientific data on the number of negative biopsies with positive blood tests. And if I already had a child on the gluten-free diet and they were responding to it, I don't think I could put them back on gluten. It's definitely a personal decision...

If the blood test is positive, what are the chances of it being something else? I thought that if it was positive than it is definitely Celiac, but now I"m reading that they actually confirm it thru the biopsy. We have an appointment with a very good GI at the beginning of March. Our pediatrician told us to keep her off gluten for now and then see what he says about the biopsy. My only concern is that she may have other things going on to. Some of her symptoms haven't been really typical for Celiacs. For the past 1 1/2 she has had a lot

of itching all over with no rash and certain types of citrus give her a bright red bottom, like a diaper rash almost. It always happens with apple juice, sometimes when she eats oranges. Her stool is usually light colored, which is a symptom of liver problems (as well as

the itching). I don't know, we were actually relieved when we found out she had Celiac, but now I'm finding that a lot of Celiacs can have multiple auto immune issues...Does anyone else find this to be true?

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It is completely a personal decision. We did the biopsy with our son, but we new nothing about Celiac back then. I don't know if we would go through it knowing what we know now...Also, it was costly. Even with a very good insurance plan, our co-pay was still really high. I know it is the gold standard, but I would really like to see some hard scientific data on the number of negative biopsies with positive blood tests. And if I already had a child on the gluten-free diet and they were responding to it, I don't think I could put them back on gluten. It's definitely a personal decision...

BTW, did your son have a negative biopsy? Do you remember what his levels were on the blood test? Our daughter had a level of 30 for transglutaminase antibody. It said that over 8 was a positive result...this seems overwhelmingly positive to me, but now I don't know.

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When I was diagnosed (at age 48 and no family history), my blood work was so positive, my GI told me I didn't need to have a biopsy. I went gluten free and that was it. Several years later, I did have an endoscopy/biopsy because I was suffering wicked heartburn. The test itself is nothing... don't be afraid if you need one.

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Our son had a positive biopsy as well. His blood test came back at an even 100!

I've always read that the blood test is 98-99% accurate. I've also read that typcially when it's wrong it is a false NEGATIVE, not a false positive. I have done a lot of reading on Celiac over the past two years (I highly recommend Dr. Peter Green's book Celiac Disease: A Hidden Epidemic as well as Danna Korn's Celiac Disease & Kids both were very helpful when we were starting out). I've never seen the percentage for false positives reversed with a biopsy. That's one question I would ask if I had it to do over again - and I'd want to see scientific documentation to support the answer.

Itching...yes, our son had very scratchy skin prior to diagnosis. Now it hasn't completely gone away, but it is no where near as bad. Other symptoms that disappeared or greatly improved: chronic runny nose, frequent illness (he was in doctor's office every spring and fall with bronchitis that they chalked up to allergies, had strep and pink eye at least annually (but typically more than once a year), foot/ankle/leg pain, dark circles under his eyes despite 12 hours of sleep at 8 years of age, fatigue, severe mood swings (thankfully these disappeared!!) and of course the gastro stuff.

As for multiple issues, you'll need to discuss that with your doctor. Yes, there can be other issues that develop. The longer a person is undiagnosed (or diagnosed and still eating gluten), the more damage that occurs to the body. Celiac damages the small intestine and interferes with absorption of nutrients from the food. So any part of your body that might need nutrients can be affected (yeah, that would be your whole body!). The question to ask regarding the biopsy and multiple issues is whether or not the biopsy is going to shed any light on those. Like the itchy skin - I'm not a doctor, but I can't think of anything that would show up in a biopsy of the small intestine (other than Celiac) that would be related to ithiness. Again, I'm not a doctor though. I would ask those types of questions to the doctor doing the procedure.

As for your pediatrician's recommendation to stay on gluten...I've read that you have to be back on gluten (daily intake) for anywhere from 6 weeks to 6 months before the biopsy. If you think you may go the route of the biopsy I would call the gastro's office and ask them what they want you to do. As someone who has seen the affects of gluten after a gluten free diet, I know I could not knowingly poison him daily without some really really good reason. Although he was sick daily before diagnosis, it was more mild and frankly, he had never known what it was to feel "good". His reactions to gluten now are so much more violent and he does enjoy his healthy, feel good lifestyle.

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Our son had a positive biopsy as well. His blood test came back at an even 100!

I've always read that the blood test is 98-99% accurate. I've also read that typcially when it's wrong it is a false NEGATIVE, not a false positive. I have done a lot of reading on Celiac over the past two years (I highly recommend Dr. Peter Green's book Celiac Disease: A Hidden Epidemic as well as Danna Korn's Celiac Disease & Kids both were very helpful when we were starting out). I've never seen the percentage for false positives reversed with a biopsy. That's one question I would ask if I had it to do over again - and I'd want to see scientific documentation to support the answer.

Itching...yes, our son had very scratchy skin prior to diagnosis. Now it hasn't completely gone away, but it is no where near as bad. Other symptoms that disappeared or greatly improved: chronic runny nose, frequent illness (he was in doctor's office every spring and fall with bronchitis that they chalked up to allergies, had strep and pink eye at least annually (but typically more than once a year), foot/ankle/leg pain, dark circles under his eyes despite 12 hours of sleep at 8 years of age, fatigue, severe mood swings (thankfully these disappeared!!) and of course the gastro stuff.

As for multiple issues, you'll need to discuss that with your doctor. Yes, there can be other issues that develop. The longer a person is undiagnosed (or diagnosed and still eating gluten), the more damage that occurs to the body. Celiac damages the small intestine and interferes with absorption of nutrients from the food. So any part of your body that might need nutrients can be affected (yeah, that would be your whole body!). The question to ask regarding the biopsy and multiple issues is whether or not the biopsy is going to shed any light on those. Like the itchy skin - I'm not a doctor, but I can't think of anything that would show up in a biopsy of the small intestine (other than Celiac) that would be related to ithiness. Again, I'm not a doctor though. I would ask those types of questions to the doctor doing the procedure.

As for your pediatrician's recommendation to stay on gluten...I've read that you have to be back on gluten (daily intake) for anywhere from 6 weeks to 6 months before the biopsy. If you think you may go the route of the biopsy I would call the gastro's office and ask them what they want you to do. As someone who has seen the affects of gluten after a gluten free diet, I know I could not knowingly poison him daily without some really really good reason. Although he was sick daily before diagnosis, it was more mild and frankly, he had never known what it was to feel "good". His reactions to gluten now are so much more violent and he does enjoy his healthy, feel good lifestyle.

Good luck with your decision.

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To me, positive blood test and dietary confirmation would be sufficient. What're you going to do if the biopsy is negative? Don't put her through it.

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At age 3 my son had very positive blood work and we put him gluten free right away. The two GI doctors (one who specializes in kids celiac) we saw in the weeks after that quickly agreed that a biopsy was not necessary. It is now 3 1/2 years later and I've never regretted that decision. I hope she feels better soon!

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Thank you so much for your post. I almost started crying when I read that your son also had itching issues...this has been such a source of stress for us for the past couple years. Many nights I have to give her Benedryl (like tonight) to try and ease the itching. I've never seen/heard that this is a symptom of Celiac, so I'm relieved that you have also experienced this. She has only been gluten free for a little over a week so far, and I've narotic about making sure nothing I'm giving her has gluten in it, but she has still been itching a lot. Do you know how long it normally takes for symptoms to subside? Thank you also for the book recommendations. I will definitely look them up.

Did your son have diarrhea or any blatant symptoms like that before diagnosis? Our daughter didn't which made me originally rule out Celiac as the source before it was confirmed.

Thanks again.

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At age 3 my son had very positive blood work and we put him gluten free right away. The two GI doctors (one who specializes in kids celiac) we saw in the weeks after that quickly agreed that a biopsy was not necessary. It is now 3 1/2 years later and I've never regretted that decision. I hope she feels better soon!

Wow, that is good news. Thank you. I am just so confused about this whole thing. My husband and I can't see putting her back on gluten after she will most likely be off for 1-2 months before we see the GI. She has been through so much testing, blood work, elimination diets, etc., leading up to this, that I really do not want to put her through anything else. I'm ready to just start healing. How long did it take before your son started feeling better and what were his original symptoms? Again, thanks so much.

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Oh he could scratch himself until his skin welted up and had red blotches. It was awful! There was never a rash with it really. Any visible signs of it were due to his scratching. I don't remember how soon it cleared up...sorry.

He did have gastro symptoms. Doctors told us for years (literally years) that that was because he ate so many fruits and vegetables, but as he aged and his diet included less of those items the symptoms got worse.

What I've learned with Celiac is that it truly does affect so many parts of the body that the symptoms are extremely varied. For example, two weeks into the diet his hand writing changed so dramatically that his dad and I thought he'd brought home a different child's school work. We had started the diet a couple days before school got out for Christmas break. He didn't write anything for the two weeks they were off and the first day he went back his writing was so neat and clear we thought he had someone else's. It was amazing! We had people that we played sports with comment about how "everything seemed to be clicking for him suddently". They had no idea about the diagnosis. We knew it was too coincidental that this amazing transformation occured at the same time as his gluten free lifestyle and literallly within weeks of the diet change. He was always a neat kid (I'm not biased or anything ;) ) but he really became an even greater kid. Some people make comments about how hard the diet is or how hard his life is now. No, having a child who never knew what it was like to not have a stomach ache was hard. Having your mood completely out of your control is hard. Being so tired you can't go to Christmas Eve with your cousins unless you take a 4 hour nap is hard. Watching your child not be all they can be is hard. Spending extra time in the kitchen or driving to 4 different grocery stores is a piece of cake. A piece of gluten free cake that is! (Which by the way, I serve all the time for his birthday parties or family events and no one EVER knows the difference!)

Good luck with the next few weeks, especially with the doctor. And once you're comfortable with her diagnosis, rejoice that you have the power to help her get healthy and that she is young enough that you can help her grow up knowing how to take care herself!

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If the blood test is positive, what are the chances of it being something else? I thought that if it was positive than it is definitely Celiac, but now I"m reading that they actually confirm it thru the biopsy. We have an appointment with a very good GI at the beginning of March. Our pediatrician told us to keep her off gluten for now and then see what he says about the biopsy. My only concern is that she may have other things going on to. Some of her symptoms haven't been really typical for Celiacs. For the past 1 1/2 she has had a lot

of itching all over with no rash and certain types of citrus give her a bright red bottom, like a diaper rash almost. It always happens with apple juice, sometimes when she eats oranges. Her stool is usually light colored, which is a symptom of liver problems (as well as

the itching). I don't know, we were actually relieved when we found out she had Celiac, but now I'm finding that a lot of Celiacs can have multiple auto immune issues...Does anyone else find this to be true?

I agree with the other posters who have said this is a personal choice. But I do believe that a strongly positive TTG should be enough to confirm the diagnosis.

I do not agree with the new and growing trend of putting a new patient on a gluten-free diet after positive bloodwork but before a biopsy. That is just begging for a false negative biopsy result and the practice should be discontinued. Please ask your GI to talk to the pediatrician about this as it prolongs the suffering of many children by skewing test results. Patients should be made aware of the options and requirements of the tests so that they can make a choice as to how they want to proceed.

That being said, we did not go to biopsy with my daughter. I don't really regret it. There have been times when I've thought it would help out with the school (in terms of "official" dx), but in all honesty, it hasn't been required. Our doctor writes up any notes we need as he saw our daughter throughout this process. The only "problem" we've run into is with an aunt who cannot bring herself to acknowledge that this is a real disease. And I really don't care that she has issues with what we're doing. It is working for my daughter and that matters most to me. My daughter's reactions to gluten are very extreme and she's very sensitive to miniscule exposures. There are no doubts for us.

I totally can relate to you wanting to just heal your daughter. The stress of seeing your child suffer while running all of these tests is just incredible. And not following through on an answer doesn't feel right when you're looking at prolonging suffering for months for a test that may, or may not confirm.

Good luck with your decision. It is a tough one to grapple with in the beginning of this journey. Just stay true to yourself and it will all work out best.

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When my daughter's blood test was positive, my sister who decided against the biopsy urged me to just go gluten-free and skip the scope. (my nephew has it too and they confirmed it with the blood test and diet. her numbers were really high) The GI doctor (first one we saw that I ended up really disliking) really, really, really urged me to get the biopsy. At the time my daughter was kind of tired and thin only, so I thought OK it's just a little while and I want to be sure. The biopsy was scheduled for June in April so it didn't seem too far off and so bad to keep her eating gluten. Then, she started to feel yuckier and yuckier. I called the GI department and said that if they want to scope her they had to do it immediately because she was done with gluten. They went on and on about how I could cut back to just a little gluten, a piece of toast a day and I said no. Then, they offered to put me on a list in case someone canceled. Later that day they called and said they had an opening in two days for the scope. We went ahead and got it over with. It was, no surprise, 'positive'. After all that urging about the importance of getting the biopsy, it didn't seem like the information was all that useful in the end. They couldn't say how long it might take her to heal or how long she may have had it.

The procedure wasn't bad at all. I didn't even get to read through a whole US magazine in the waiting room. (At the time I didn't know who Jon and Kate plus 8 were, so it was useful in that I caught up on that in the waiting room. right?). The doctors and nurses treated her like a princess, so she wasn't too traumatized by it. She was home by lunch time.

I guess you just need to choose what works best for you long term. This is a lifetime illness. So think about whether you might be having doubts in five,ten years or not.

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I agree with everyone about this being a personal decision.

Since we had never heard of Celiac before, we had our daughter get a biopsy. She was 4 at the time. Since we now know it runs in the family, I don't think I would have a biopsy for our second shild if a blood test came back positive, we would just switch her to a gluten-free diet, which is is mostly on now, as everyone eats gluten-free at home.

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At age 3 my son had very positive blood work and we put him gluten free right away. The two GI doctors (one who specializes in kids celiac) we saw in the weeks after that quickly agreed that a biopsy was not necessary. It is now 3 1/2 years later and I've never regretted that decision. I hope she feels better soon!

Wow, that is good news. Thank you. I am just so confused about this whole thing. My husband and I can't see putting her back on gluten after she will most likely be off for 1-2 months before we see the GI. She has been through so much testing, blood work, elimination diets, etc., leading up to this, that I really do not want to put her through anything else. I'm ready to just start healing. How long did it take before your son started feeling better and what were his original symptoms? Again, thanks so much.

Just before he turned 3 he seemed to be extra tired - so I took him to the doctor thinking he was anemic. He wasn't so we went on another couple months. During that time he seemed extra irritable, wanted lots of milk and one week he would only eat yogurt! He never had diarrhea and he was pooping like clockwork normally every day. A couple weeks later we realized he was looking unusually skinny and had a distended tummy! So I searched on the internet for "distended stomach" and found celiac (had never heard of it) Took him to the doctor who now agreed he was looking pretty sickly. About a week later we actually had the celiac blood tests. In the meantime he started what we now know were bladder spasms caused by the vast amount of poop stuck in his system that was pushing on his bladder. But the blood test came back positive - a TTG of 177. We put him gluten-free right away and then in the coming weeks saw a GI who I remember circling his number 177 on the results and said "there is only one thing that causes that." We agreed no biopsy and then another specialist that we decided to get established with also saw no reason for a biopsy.

How long did it take to heal? The bladder spasms stopped right away. Maybe 2 months for the tummy to go down. His TTG had dropped dramatically 4 months later to 14 and since then he's always been negative.

We had it easy - from when we first noticed he was tired to diagnosis was 4 months. I will always think his was triggered by a regular stomach bug he had 2 months before the tired symptoms started. Also we found out he is double DQ2.

I hope the diet is showing some results for your daughter. Also I understand the biopsy can miss the damaged area leading to a false negative, while a positive blood test means positive. Also, I've read that some people remove dairy while the healing is taking place, though we didn't. Let us know how she does.

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Just before he turned 3 he seemed to be extra tired - so I took him to the doctor thinking he was anemic. He wasn't so we went on another couple months. During that time he seemed extra irritable, wanted lots of milk and one week he would only eat yogurt! He never had diarrhea and he was pooping like clockwork normally every day. A couple weeks later we realized he was looking unusually skinny and had a distended tummy! So I searched on the internet for "distended stomach" and found celiac (had never heard of it) Took him to the doctor who now agreed he was looking pretty sickly. About a week later we actually had the celiac blood tests. In the meantime he started what we now know were bladder spasms caused by the vast amount of poop stuck in his system that was pushing on his bladder. But the blood test came back positive - a TTG of 177. We put him gluten-free right away and then in the coming weeks saw a GI who I remember circling his number 177 on the results and said "there is only one thing that causes that." We agreed no biopsy and then another specialist that we decided to get established with also saw no reason for a biopsy.

How long did it take to heal? The bladder spasms stopped right away. Maybe 2 months for the tummy to go down. His TTG had dropped dramatically 4 months later to 14 and since then he's always been negative.

We had it easy - from when we first noticed he was tired to diagnosis was 4 months. I will always think his was triggered by a regular stomach bug he had 2 months before the tired symptoms started. Also we found out he is double DQ2.

I hope the diet is showing some results for your daughter. Also I understand the biopsy can miss the damaged area leading to a false negative, while a positive blood test means positive. Also, I've read that some people remove dairy while the healing is taking place, though we didn't. Let us know how she does.

Thank you again. We actually got our appoint. moved up with the GI for tomorrow from a cancellation! We were originally supposed to go in March. I'm making a list of questions right now to ask her. I find it very interesting about your son and his bowel movements (as odd as that sounds) Our daughter has always gone daily and when she has to go it comes out right away, but it is usually very bulky and firm, in fact sometimes it doesn't even look like it should come out of a body so small. I wonder if this is from the same thing?? She has been gluten free for a little over a week and has actually seemed a little constipated. She has still been going, but they are small now, like rabbit feces, and a lot of them. This has been the first time I've heard her actually have to push on the toilet...sorry to be so graffic. I think this is the only place you can talk about bowel movements and have it be acceptable! I need to find a way to get more fiber in her diet. Any recommendations are appreciated. Also, her TTG was only 30. I was thinking that sounded really high since anything over 8 was positive, but now from hearing other stories it doesn't seem so high. Should I question whether or not she has it??

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I think it's not so bad getting all the tests done. The hard thing is feeding your kid something that is most likely making her super sick for months while you wait for your appointment. Hope everything goes alright.

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Ok, I don't mean to sound dumb, but what does the initial blood test actually test for?

I have not been diagnosed with Celiac disease but have been gluten free for a few months now. I don't think my doctor knows much about Celiac because he acknowledged that gluten was a problem for me but thinks it is being caused by my IBS. He told me he didn't think I have the symptoms of Celiac and that my gluten intolerance will probably improve in a few years.

I didn't press the issue of Celiac because I knew I would have to go back on gluten (which I don't know if I could do) but what does the blood test check for? If I was off gluten for 4 or 5 months now would it it all be helpful for me?

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Proper blood testing consists of multiple tests. One or more tests are done looking for antibodies specific to gluten, combined with a total serum iga test. The latter test must be "normal" for the results of the antibody tests to be valid.

The antibody tests vary in sensitivity and specificity, but they all depend on the antibodies being currently produced which means regular exposure to gluten in quantity.

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Proper blood testing consists of multiple tests. One or more tests are done looking for antibodies specific to gluten, combined with a total serum iga test. The latter test must be "normal" for the results of the antibody tests to be valid.

The antibody tests vary in sensitivity and specificity, but they all depend on the antibodies being currenly produced which means regular exposure to gluten in quantity.

I see. So this test would likely be negative since I have been off gluten so long? This is frustrating. I just want proof, besides how I feel, that I should stay off gluten permanently, especially since my doctor thinks my intolerance is temporary. I don't know that I have found any proof that gluten intolerance is temporary.

To the OP, I think that decision is personal too. Even if the biopsy is the gold standard, many doctors seem to know little about Celiac anyway.

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Thank you again. We actually got our appoint. moved up with the GI for tomorrow from a cancellation! We were originally supposed to go in March. I'm making a list of questions right now to ask her. I find it very interesting about your son and his bowel movements (as odd as that sounds) Our daughter has always gone daily and when she has to go it comes out right away, but it is usually very bulky and firm, in fact sometimes it doesn't even look like it should come out of a body so small. I wonder if this is from the same thing?? She has been gluten free for a little over a week and has actually seemed a little constipated. She has still been going, but they are small now, like rabbit feces, and a lot of them. This has been the first time I've heard her actually have to push on the toilet...sorry to be so graffic. I think this is the only place you can talk about bowel movements and have it be acceptable! I need to find a way to get more fiber in her diet. Any recommendations are appreciated. Also, her TTG was only 30. I was thinking that sounded really high since anything over 8 was positive, but now from hearing other stories it doesn't seem so high. Should I question whether or not she has it??

I hope your appointment went well and you were able to be some answers. As for your daughters poop (yes, love the poop talk!)though I'm not strictly gluten free, if I have been sticking to the gluten-free diet well I get the same way. My gluten-free son is that way sometimes too. His non-celiac gluten eating brother has the giant poops. The only suggestion I can offer is more fruit. As for a TTG of 30 I don't know..but I've heard of people being very sick with a low TTG and others feeling quite well with a high TTG. Then there are the poor kids who have all the classic celiac symptoms but get a false negative on the blood test and the doctor insists they couldn't have it. Celiac is so tricky since symptoms can vary so much. Hope you had a good appointment!

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