Anything else to ask the doctor?

[deanna1ynne]

I have a 6 yo whose ttg-iga was 3X the UL when we first tested (not gluten free, but only had bread once a week or so) and 6X the UL when tested a month later (after feeding her a serving of bread every day), but whose biopsy was negative for celiac (4 samples from the duodenum and 2 samples from the duodenum bulb). D-gliadin igg was also over the upper limit, but the d-gliadin iga was not flagged as high. Because I have two other children who were recently diagnosed with celiac (via positive blood test and positive biopsy), we're going gluten free as a family (we're just one week in). The doctor didn't do an EMA test on the 6 yo, but besides that, I'm wondering if there's any other testing I should ask about before going gluten free would skew her results too much? I'm just not sure what the conclusion is at this point. We're going gluten-free anyway, so maybe the official dx doesn't matter for her?

[Scott Adams]

If their ttg-iga was 3 times the upper limit, then 6 times when eating gluten more often, then your 6 year old likely has celiac disease. I don't think more blood tests would be required. Children are now being diagnosed in Europe without a biopsy if they are 10x the upper limit on any blood test. Also, kids are more likely to have a negative biopsy than adults, and in this case it does not mean they don't have celiac disease.

[deanna1ynne]

48 minutes ago, Scott Adams said:

If their ttg-iga was 3 times the upper limit, then 6 times when eating gluten more often, then your 6 year old likely has celiac disease. I don't think more blood tests would be required. Children are now being diagnosed in Europe without a biopsy if they are 10x the upper limit on any blood test. Also, kids are more likely to have a negative biopsy than adults, and in this case it does not mean they don't have celiac disease.

Thank you! I didn't know that kids are more likely to have negative biopsies - I'll definitely look into that more!

The doc is willing to diagnose with 10X the upper limit, so recommended she continue eating gluten and test again in 3 months. He did also order an EMA which came back positive, so I agree that she likely has it. I'm thankful he didn't just dismiss us. When I brought up my concerns, he said he absolutely would want to continue to monitor the situation - just that he can't give an official dx at this point. 

[Scott Adams]

I’m not really sure I agree with your doctor’s approach here. Why would we be trying to get their levels up to 10 times normal? I only mentioned what they are doing in Europe just as a reference, not as a target for your child. Currently the tests confirm that your child has celiac disease and shouldn’t be eating any gluten. It’s your call how you want to pursue this, but I think it’s a rather strange approach to try to see if we can get the antibodies to 10 times the normal before a diagnosis can be made. The fact that the antibodies are as high as they are indicates that your child has an autoimmune reaction to Gluten.

[deanna1ynne]

3 minutes ago, Scott Adams said:

I’m not really sure I agree with your doctor’s approach here. Why would we be trying to get their levels up to 10 times normal? I only mentioned what they are doing in Europe just as a reference, not as a target for your child. Currently the tests confirm that your child has celiac disease and shouldn’t be eating any gluten. It’s your call how you want to pursue this, but I think it’s a rather strange approach to try to see if we can get the antibodies to 10 times the normal before a diagnosis can be made. The fact that the antibodies are as high as they are indicates that your child has an autoimmune reaction to Gluten.

He just said he can't give an "official dx" without either a positive biopsy or ttg >10X the upper limit. And I have school aged children who need things to be "official" so that schools and other people will take it seriously.

I don't like the idea either. I've been trying to figure out if I can cause it to "spike" somehow (e.g., feeding her gluten twice a day for a few weeks instead of once a day, or even feeding it to her at every meal?) He suggested we re-test in 3 months, but I think I'm going to aim for 6 weeks instead. 

[Scott Adams]

You can tell the school whatever you prefer, call it gluten sensitivity, or get the non-celiac gluten sensitivity diagnosis (NCGS, which around 10x more people have than celiac disease), as they can’t check your child’s medical records and as far as I know they are private. I’m not asking you to lie to your school, but for your child to continue eating gluten after two celiac disease tests were strongly positive is, I believe, a really bad idea for your child’s health. 

Also, from the many comments in this forum about how our schools deal with this, they generally don’t do a good job, so I’m not sure whether an official diagnosis would make any difference with them or not. In general schools do very poorly in dealing with celiac children.

[Scott Adams]

By the way if you look at the accuracy of the blood tests you had done the strong positive results mean that your child is around 97% likely to have celiac disease. Reaching a level of 10x would not change this at all, but would only circumvent the need for a biopsy in some countries. 

[Scott Adams]

Sorry but one more point I wanted to mention is that after my daughter went gluten free and we told her elementary school about it they responded by making her sit at the “peanut allergy” table with two other kids. These two other kids would eat gluten regularly at that table, so the response was completely idiotic. She was not allowed to eat lunch with her friends anymore. That was how her school dealt with it. When she changed schools in middle school we decided not to mention it to the school at all because she didn’t want to be ostracized. This is just one example but there are probably hundreds of others like this on this forum.

[deanna1ynne]

7 minutes ago, Scott Adams said:

Sorry but one more point I wanted to mention is that after my daughter went gluten free and we told her elementary school about it they responded by making her sit at the “peanut allergy” table with two other kids. These two other kids would eat gluten regularly at that table, so the response was completely idiotic. She was not allowed to eat lunch with her friends anymore. That was how her school dealt with it. When she changed schools in middle school we decided not to mention it to the school at all because she didn’t want to be ostracized. This is just one example but there are probably hundreds of others like this on this forum.

How sad! Thank you for your input. I will talk more with my husband. I’m really frustrated with the whole situation right now.

[RMJ]

Before I had an endoscopy (delayed for unrelated reasons) the diagnosis in my medical record was “abnormal celiac antibody panel.”  Would a formal diagnosis like that be enough for a school to take it seriously?  (They probably wouldn’t even know what it meant).