Can Someone Tell Me If This Sounds Like Celiac...

[HeatherG]

My daughter will be 7 years old in July. She has had stomach problems nearly her whole life. She had terrible constipation (10 -14 days between BMs) often not able to go at all without an enema even when she was a 100% breastfed child. We started treating it with month after month of laxatives that really didn't work. 2 to 3 times the adult dose and it just barely kept us from having to give her enemas. She had constant respiratory issues and sinus infections. When she was 18 months old my ped decided to go ahead and run a celiac panel - basicaly he was running out of ideas and GI guys told me I just needed to punish her when she wouldn't poop (nice). Here are the results from 18 months of age:

IgG was 89 which is hugely high

IgA was 10 which is normal

tTG IgA was 1 - again very normal

From this they told me she didn't have celiac and that the IgG didn't mean anything. They did do a suction biopsy which was negative but they said it wasn't very accurate for babies.

Fast forward 5 years - the symptoms have gotten no better. She is in constant pain. She's being diagnosed with reflux and a slow gut. Nothing seems to help. No one has any solution but constant laxatives which just makes her sick and unless I give her lots of exlax it doesn't help anyway. If I give her enough laxatives to help the cramping is so bad she can't get off the couch. Her reflux is bad too. I know it's all connected but I'm just at my wits end. She can't eat without pain so she often doesn't eat at all.

I don't know if it's related but in October she had horrible joint pain that they couldnt' diagnose and could barely walk for 2 weeks. Usually she's a very active girl so that was wierd.

Do you think I should pursue the celiac angle again or does it sound like something else. I can't get anyone to do anything but say 'Give her more laxatives'.

Help!!

Thanks

Heather

[mouse]

Is she still consuming gluten? If so, then insist on the full Celiac panel which is 5 tests.

[mommida]

Yes. Those symptoms can be Celiac or gluten intolerance. Get the blood test panel done as soon as possible, while she is still eating gluten! Have the endoscopy with biopsy. If all those tests are completed and are negative, start the gluten free diet anyway.

L.

[Matilda]

..

[tarnalberry]

...

Here are the results from 18 months of age:

IgG was 89 which is hugely high

IgA was 10 which is normal

tTG IgA was 1 - again very normal

From this they told me she didn't have celiac and that the IgG didn't mean anything. They did do a suction biopsy which was negative but they said it wasn't very accurate for babies.

...

I don't know if it's related but in October she had horrible joint pain that they couldnt' diagnose and could barely walk for 2 weeks. Usually she's a very active girl so that was wierd.

Do you think I should pursue the celiac angle again or does it sound like something else. I can't get anyone to do anything but say 'Give her more laxatives'.

Unfortunately, the testing that was done was incomplete in such a fashion that you cannot say that she doesn't have celiac. A number of celiacs are IgA deficient, which means that *all* of the IgA antibodies are low, and can't be compared to standard numbers. Essentially, those with IgA deficiencies are playing with a short deck at all times.

Assuming that she is still consuming gluten, I would encourage you to get her retested with the FULL celiac panel, including a total IgA test, so that you can determine if she is IgA deficient. (Quite frankly, I would suggest that the fact her doctor didn't test that, even as a follow up, borders on negligence... It doesn't take much research into celiac disease testing to find out that many celiacs are IgA deficient.) It is true that blood tests and biopsies aren't terribly accurate in those under 2.

After pursuing blood tests, and any followup biopsies that are suggested from that, regardless of the test results, I would encourage following up with one of the most important tests - two months on a strictly gluten free diet. It is a valid diagnostic test, and an important one.

Your daughter may have celiac disease, or she may have something else wrong. But please don't give up on finding out what the problem is.

[Canadian Karen]

Even if tests show inconclusive, there is a very strong possibility she is "gluten intolerant", which could be just as damaging as celiac itself. Another thing to consider is with a biopsy, depending on how many specimens they take, it basically is a crap shoot. Damage to the villi quite often is "spotty" and "patchy", and it is hit or miss as to whether they actually take a sample from the damaged area......

Karen

[Guinevere]

she sounds totally celiac from my perspective!! if it were me, i would not wait for the Dr's diagnosis, i would give her relief and start her on a gluten-free diet immediately!!! you will know better very soon, she'll even know better.

someone shared this website with us not too long ago and i am now a regular there. the information available there is priceless!!

Open Original Shared Link

do what you can to look around and look into the "Sticky - the Gluten Free File"