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Questions About My 5 Year Old

kpw31

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kpw31 Rookie
kpw31
Posted

My daughter has been complaining of abdominal pain, just about every day, for 5 months.  We have been seeing a GI and all of her blood work has come back normal except for her TTG-IGG which was at 25.  The dr said celiac disease is suspected if it's over 100 but 25 is still elevated.  She is also not IGA deficient.  Other than that all other tests have been fine.  They want to do an endoscopy now since we're still not getting any definitive answers but I don't want to do it unless we've exhausted all other options, just because it seems so invasive, especially for a child..  I guess what I want to know is: 

 

-Can she still have Celiac with just that one antibody being elevated?

-Can she still have visible damage that they would see with an endoscopy with her blood results being what they are?

 

 

I'd appreciate any advice thanks!

 

(her main complaint is the abdominal pain, and she doesn't eat as much at some meals because she says her tummy hurts, other than that, activity levels, growth, stool etc. seems to be normal)

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glutenfree7562 Newbie
glutenfree7562
Posted

If you really don't want to get the endoscopy done try first just going gluten free for 2-3 weeks. If her stomach aches go away or get better then just continue from there. I was 17 and terrified of the endoscopy idea, but i did it and it really wasn't bad. They just gave me an IV, I fell asleep, and I woke up later laying in the hospital bed. They gave me juice and I got dressed and my mom came and got me. It was super quick, and there was absolutely no pain. Im not trying to say you should do it, but if you end up having to bring your daughter in, its pretty easy and quick. And yes I think she would show damage with lowish levels, because if she eats gluten the night before, her villi will be flattened and there will be inflammation. For your question on just one being elevated, if it was really early along that could be possible. Everything varies with each person. But I would recommend trying the gluten free diet and if it helps, make it permanent. 

I would also recommend getting her tested for food allergies. I had just stomach aches, no other symptoms, when I was 13 and was diagnosed with milk and egg allergy. It wasn't until I started having severe pain  and diarrhea and complete loss of appetite at the age of 17 that I was diagnosed with celiac. 

nvsmom Community Regular
nvsmom
Posted

-Can she still have Celiac with just that one antibody being elevated?

-Can she still have visible damage that they would see with an endoscopy with her blood results being what they are?

Welcome to the boards.  :)

 

To answer you questions: yes and yes. We have board members who had positive endoscopic biopsies without ANY positive blood tests sn conversely, we have board members who had negative biopsies with multiple positive blood tests... Both groups have celiac though. If she has elevated tTG IgA levels, that means that damage has been done to the intestines. Usually it is caused by celiac but it can also be from infection or other autoimmune diseases. tTG IgA is 91-99% specific to celiac disease, which means out of 100 people with a positive tTG IgA, 91-99 of them are celiacs. This is the reposrt I took those numbers from, please look to page 11-12. Open Original Shared Link

 

The statement your doctor made that "celiac disease is suspected if it's over 100 but 25 is still elevated" does not make sense to me.  If 100 is your lab's upper limit for their normal reference range, then 25 is not really elevated - it is in the bottom 25% of the normal range.  I suspect that your daughter's result of 25 is near or above your lab's normal reference range but you doctor (for some unknown reason) wants a REALLY elevated result before he is willing to call it celiac.

 

Can you get copies of your daughter's lab report? I have found that it's a good idea to get copies of all labs because my doctors tend to err on the side of caution - meaning they do nothing unless my labs scream ABNORMAL at them.  I haven't had great doctors... yep, I'm bitter. LOL ;) It's always a good idea to act as a second check.

 

Perhaps also check if they ran the DGP IgA and DGP IgG tests on your daughter. They are very sensitive and specific celiac tests which are excellent for catching celiac disease in children.  Those two tests are only 5 years old and not all doctors know about them.  They might be worth requesting.

 

Best wishes.  I hope you find definite answers.

kpw31 Rookie
kpw31
Posted
  • Author

Thanks for the replies!

 

Caroline- it helps to hear that you had the same issue (just stomach aches, because I feel like everything I read about this has a huge list of symptoms and my daughter just seems to have the abdominal pain), do you think you actually had the milk and egg allergy or do you think it was celiac disease all along?

 

nvs-I don't have a copy of the labs but I am going to request them this week, when I talked to the dr on the phone she just said the TTG-IGG was a 25 and a normal level would be 5 but that in people with full blown celiac disease it can be over 100 (I don't really know what the numbers mean, or what context they're in).  I'm not sure if the other ones you mentioned were tested in the panel so I guess I'll see when I get copies of the lab results.

 

We are going to go ahead with the endoscopy so I guess we'll see what that shows, I don't want something to be wrong with my child but at least if they find that it is celiac we can get her the help she needs, it is so disconcerting to have her complaining about her stomach hurting all the time and not know what the cause is.

nvsmom Community Regular
nvsmom
Posted

If the upper limit of the test was 5, and she had a 25.... that's 5 times the upper limit so it is quite positive. Some celiacs do have ridiculously high test results but not all; a 25 is pretty high - especially in a child.

 

This report has more info on the tests and how the endoscopic biopsy results will be classified. It could be helpful:

Open Original Shared Link

 

I wish her luck with the endoscopy. I hope they find very clear results. If you can, request 6 or more biopsy samples be taken; the surface area of the small intestines is the size of a tennis court, so the more samples taken, the better the chances of observing any damage that is there.

 

Will her endoscopic bipsy be soon?

kpw31 Rookie
kpw31
Posted
  • Author

thanks again for the information. I actually just called to get a copy of the labs and  I'm waiting to hear from the hospital this week to schedule the endo. I'm hoping to do it before the end of the month.  I guess they just don't know until they look, I've been looking online about just the IGG being elevated and keep seeing conflicting information, some says it is a sign of celiac, other things say it usually means gluten intolerance or sensitivity hopefully we'll have more answers soon.

nvsmom Community Regular
nvsmom
Posted

... I've been looking online about just the IGG being elevated and keep seeing conflicting information, some says it is a sign of celiac, other things say it usually means gluten intolerance or sensitivity hopefully we'll have more answers soon.

 

The tTG  tests do not test for gluten sensitivity, they test for damage caused to the gut because some autoantibodies attacked the tissue transglutaminase enzymes found on the surface of the intestines. If you have a positive tTG test, it means damage has been done to the intestines - usually it is caused by celiac disease but it can be caused by other diseases or severe GI illnesses.

 

If she has a positive tTG, she has intestinal damage. It's just a matter of finding out what caused it now.

 

I like how these sites explain the tests:

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

 

The AGA tests are the only tests that show gluten (gliadin) sensitivity.

 

.... It's a confusing diagnostic process isn't it?  :(

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kpw31 Rookie
kpw31
Posted
  • Author

it is confusing and every time I think I get it I come up with more questions!

 

what else could cause intestinal damage?  

nvsmom Community Regular
nvsmom
Posted

Celiac disease is the most common cause of a positive tTG test. I believe a positive tTG is from celiac over 90% of the time. The other causes are often infection (like a serious bout of e.coli) or diseases like diabetes, crohn's, thyroiditis, or liver disease...usually it is celiac disease though. :( I am not sure if there are any other possible causes or not.

When you have a very positive test, it is less likely to be caused by other illnesses. Because your daughter's test was quite high, as opposed to a result of 6 or so, it is more likely to be related to celiac disease than other causes.

This Q&A site from the Celiac Disease Centre at the U of Chicago asks some good questions about tTg tests. There is lots of good info there if you search around it. Open Original Shared Link

Try to stay positive. If your daughter is going to have an illness, celiac disease is one of the better ones because you can put it into remission for life with just a diet change....and many of us end up eating healthier without as many processed foods. It is definitely inconvenient, but by catching it so early (if it is celiac disease, and I would guess it is) she won't have any long term complications.

You might want together everyone in the family tested while waiting for the endo. celiac disease is genetically linked so there is a chance others could have it.

Dr Green has a good book on celiac disease. There are a few other good ones out there. Raid your library if you can. There are a few good books for kids on celiac disease too that might come in handy in the future.

Best wishes!

kpw31 Rookie
kpw31
Posted
  • Author

I got copies of my daughter's blood work this weekend so it looks like the range for TGG IGG was 0-5 and she was 25 the first time she was tested and 23 the second time, anything over 9 says "positive."  I'm still confused ,with a normal IGA  can this be celiac? I'm still waiting to hear back from the hospital to schedule the endoscopy so hopefully that will happen soon.  There's more things on this report that I'm trying to decipher.

nvsmom Community Regular
nvsmom
Posted

I got copies of my daughter's blood work this weekend so it looks like the range for TGG IGG was 0-5 and she was 25 the first time she was tested and 23 the second time, anything over 9 says "positive."  I'm still confused ,with a normal IGA  can this be celiac?

Yes. The IgA is probably the "total serum IgA" which is just a control test (not a celiac test) to ensure that she produced enough IgA for the actual celiac tests that use IgA (tTG IgA, EMA IgA DGP IgA) are accurate. The test IgA levels because about 5% of celiacs are deficient in IgA and would thus have false negative tests.

 

If the range of her test is 0-5, and she was 4 to 5 times the upper limit, I would say that is quite positive and there is very little chance that the test result was caused by something else.

 

You could always request further blood work. The DGP tests are very good for children. The EMA IgA is a good tests but usually not accurate for kids as it usually indicates more advanced damage.

 

Good luck with the endoscopy.

kpw31 Rookie
kpw31
Posted
  • Author

thanks again.  they did the DGP and EMA in the panel and they were in the normal range the IGG was the only one that was flagged.

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