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Suspected Gluten Sensitive 5 Year Old, Iga Negative - Health And Behavoir Issues

Gruuuvygrl

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Gruuuvygrl Newbie
Gruuuvygrl
Posted

I'm totally stressed about what to do for my 5 year old. I'm not sure if I should just start him gluten free and send his food to pre-school or try one of the entero lab tests. He was tested last year and the Iga showed he was negative. He has a history of anemia (not super low but definately below normal). For at least the last several years he's also had low neutrophils, high lymphs and high basos. Does this mean anything? Even though he is about 50% for weight and height he is super pale and just looks skinny and unhealthy. My mom and my sister expressed some concern last week when we all went swimming. I'm very fair but is sickly pale really normal? At normal weight are you really supposed to see each and every rib? His tummy has always looked a little bloated too. He also has tummy troubles and has the stinkiest stools and gas ever. I thought his constipation was improving this past year but realized he just wasn't telling me about it. He just happened to have the urge when we were at a store the other day and so I saw him almost start crying from how much it hurt when he was on the toilet. My biggest worry is his language delay. He's always had a language delay and last year autism was suspected but then ruled out. He's improving at a fast rate than what his 'goal' is but he's still behind for his age.

I just don't know what to do. We have another appointment at specialty clinic next week. They consulted with a pediatric gi specialist and they said the Iga test rules out celiac. I'm sure most of you know that is not true.

I was tested negative too last year after several family members found out they were celiac. I finally went on the diet after my mom kept after me to go on the diet and I'm a changed person. I had very bad emotional effects as well as what I thought was IBS and after going gluten free those symptoms are GONE.

I'm definitely going to put my son on the diet this summer atleast but want to do something now. Are there any other tests I can ask the dr to do? Should I ask they do more extensive blood work next week? Should I just start bringing him gluten free food to preschool? This would be hard for my schedule and finances but maybe I should just do it. I'm just wondering if there is somehow I can prove he is gluten sensitive. I just know in my heart something is not right with him but am sure I'm just going to sound like the crazy over worried mom.

What should I do next?

Lisa

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Juliet Newbie
Juliet
Posted

There's a full spectrum blood test that's supposed to be done to rule out Celiac Disease which includes more than just Iga. In fact, I thought I read on another post that the Iga levels were the least accurate for testing. Plus, at 5 years of age, the tests aren't very accurate as well. You can do the Enterolab tests, including the gene test, but some doctors do not accept the validity of this specific test. And as you mentioned, you can always forego these tests altogether and try out the diet. If gluten is the culprit, you'll see results very quickly.

Go with what your intuition tells you - I know it's overwhelming right now, but you're the mother. Who cares if others think you're overly concerned. If you choose the diet and it works, you have your proof. And if you do the Enterolab tests, and it also comes back positive, although you may not have the proof with your doctor there are enough people on this board who feel that they are very accurate, so you have your proof again.

Jestgar Rising Star
Jestgar
Posted

I agree with Juliet. Even if the tests were negative wouldn't you try gluten-free? Just start now. As for bringing food to his preschool, can't you send ziplock baggies of food with him? Or maybe set up a stash in the daycare with his name and warnings on it that it's allergen free food?

mommida Enthusiast
mommida
Posted

You need the full Celiac panel of blood tests including the total Iga, because a Celiac can be Iga deficient.

The negative Iga test result does not rule out Celiac. I would see the pediatric gastro. for more testing to rule out any other issues. Wait to start the gluten free diet until testing has been completed. When testing has been completed and even if testing has been inconclusive, start a gluten free diet.

L.

mandasmom Rookie
mandasmom
Posted
You need the full Celiac panel of blood tests including the total Iga, because a Celiac can be Iga deficient.

The negative Iga test result does not rule out Celiac. I would see the pediatric gastro. for more testing to rule out any other issues. Wait to start the gluten free diet until testing has been completed. When testing has been completed and even if testing has been inconclusive, start a gluten free diet.

L.

Do you live near a major Celiac Center? They are much ore lilkely to take your concerns seriously...it may be worth traveling to one just to get a firm diagnosis..

ssjrobbins Newbie
ssjrobbins
Posted

Our daughter is IgA deficient so her blood tests came back negative. She did go through the biopsy for diagnosis but we found out how severe her celiac disease was by having the biopsy done. I know the biopsy is not for everyone, but for a kid, I think it is easier to explain to them that they have this disease and they HAVE to eat gluten-free rather than "we think you have this disease" but when you are 14, 16, 18 and want to rebel.....know what I mean.

shannon

chrissy Collaborator
chrissy
Posted

which IgA test did they run? if it were me, i would investigate things further before putting my child gluten free. if nothing shows up, then i'd try gluten free. i'd dfinitely see a ped gi, too.

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    • trents
      High TTG-IgG and Normal TTG-IgA

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      Son's legs shaking

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      Son's legs shaking

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