Diagnosing Celiac

[anniebeth]

Hi. I am new to this forum. I have an 18month old daughter that has always suffered from food intolerances. She was diagnosed with an intolerance to milk at only a few months old. After that, quite a few other foods popped up as well. Since these are intolerances and not "allergies" that (to me) means this is a problem with her gut. The pediatrician recently suggested celiac disease as a possible cause. We did a blood test, and it came back negative. This weekend I read an article in Parent's magazine saying that the blood test is not always accurate on toddlers. Why is this? Despite the food restrictions we are already living with, she continues to have diarrhea and is not even on the growth chart for weight. At birth, she was an average 7lb baby. I now feel that maybe she does have either celiac disease or gluten intolerance. I want to go gluten free. The doctor, however, feels that the blood test results mean that she is definitely not having problems with gluten. What should I do?

[ang1e0251]

Blood tests can be inconclusive especially in young children. You can definately start a gluten free diet. This will tell you whether your child is sensitive or not. Your her mother, you know her best. Don't let any doctor or test results tell you what your instincts already know.

I hope she's feeling better soon. She's lucky her mom is so on top of her health.

[Genna'smom]

My daughter had blood tests and they were negative but the only way we found out was that she had a biopsy done.

[anniebeth]

Thanks. I think I'll go to the store tonight to get some gluten free foods...

[mstroud]

I think you're smart to question the results. I've heard many times that the tests can be negative in children. My oldest son (8) has Celiac Disease which was diagnosed via blood work and a biopsy. He was diagnosed after a year or more of chronic stomach pains, fatigue, and joint pains. His blood work was not horribly high, but the doctor said that we probably caught it early on. He also had a genetic test with the blood work which came back positive for a marker. My middle son had behaivoral problems and seemed to be tired all of the time ... I kept reading that could be early signs of celiac. He was tested and his results were negative, but he did come back with a double genetic marker (DQ2 homozygous). I also tested postive for the genetic marker (also the double genes), but negative on the blood work.

Sorry ... long story short is that my middle son who had negative blood work has done very well on the gluten free diet! His moods are MUCH more even (as even as it gets with an energetic 4 1/2 year old!) and his fatigue disappeared. I feel TONS better on the gluten free diet (had depression, felt very overwhelmed most of the time, and had stomach pains before the diet). So, I am totally agree that it's worth a try! This forum is a tremendous help in getting started with the diet!!!

Good luck! Margaret

[The Kids Folks]

Hi AnnieBeth,

Our son also had negative blood work at age 7. Our ped's said that he didn't have it and sent us to a peds GI - who also felt that we should treat the symptoms and not the cause. (chronic C, slow or no growth)

DS weighed almost 9 lbs when he was born. Each year he started to slowly drop on the growth chart. Twice being failure to thrive (once at 4 months and again at 7 YEARS). You are good to believe that something is not right!!

After a few weeks of listening to the doctors treating his symptoms - I was like a crabby old mamma bear and said enough already! We started the gluten free diet and it has been tremendous!! He is like a new kids. We are starting to see some weight gain, and he has gained almost an inch in height!!

I read online about ?doctorceliac? who believes that the doctors should recommend the diet to help our kids get healthy and GROW now and they can try the gluten challenge when they are older. But his main thing is let's help our kids feel good now!

We opted to not have the biopsy at this point - we decided that we would go gluten free regardless of the results!

The Kids Folks

[KaidensMummy]

My 2 yr old son has been having the same problem but we have not had any testing done. The doc is telling us to go on a gluten free diet for 2 weeks to see if it helps out with the chronic diarrhea.

SO, now I am making up a list of what to buy! Good Luck

[anniebeth]

So we didn't have any diarrhea today. We had somewhat normal looking poop. I think I'm going to stick with this for a while and see what happens.

[ang1e0251]

Very good news! Looks like you are on to something!

[kbalman]

kuddos to you annie my now 18 month old son has been gluten free for a little over two months. After going through lots of blood work, biopsy (that they didnt do right) 2 gi docs, dietician (who wouldnt help us with out diagnosis) 2 pediatricians. We opted to try the diet. I have read several articles that say under the age of 6 tests are not accurate even biopsies. He also had severe failure to thrive, constipation, anemia , skin issues etc. He has finally gained weight is wearing 18 month clothes, grown and much happier.

Go with your gut feeling. My son loves his gluten free food. Also FYI if you email alot of the gluten free companies they will send you coupons.

[anniebeth]

So we were doing well and then she had diarrhea this afternoon. I thought, "oh well, I guess that wasn't the problem after all." Then I asked my mother in law what she had for snack yesterday afternoon and she said "cheerios". I had shown her what to give for snack, but apparently they were at her house for some reason and she gave her cheerios instead. So. Would that be a reasonable time frame for a reaction? Should it have been sooner?

[mamaesq]

The reaction can be that quick. When I have something with gluten, I can tell usually within a few hours. Yesterday I licked an envelope (apparently a big no-no, and I had forgotten this), and then took a tiny piece of icing off of a cake, I figured since it was touching the part of the cake that was touching icing, I would be ok. Apparently not. A couple of hours later, I had explosive diarrhea. I'm not sure if it was the envelope or the icing, but I was gluten-free the rest of the day.

I am taking my 4 year old for a follow up to the pediatric GI on Tuesday, his bloodwork also appears to be normal, but I'm not convinced. He was 30.4 lbs at his 3 year appointment last November, and he's 32.0 pounds now. I think that a gain of under 2 lbs in a year is very concerning...He complains about stomach aches, has canker sores, and is constipated. I am tempted to start him on a gluten-free diet to see if he grows, regardless of what the doctor says.

[Fiddle-Faddle]

You might want to report this apparent dietary response to your doctor.

He might want to do an endoscopy/biopsy (which DOES have risks, and anyone who says it doesn't is either mistaken or lying). It won't be accurate unless your daughter is eating gluten, though (same with the bloodwork). Both bloodwork and biopsy can be inaccurate in toddlers because sometimes it takes years to cause enough damage to show up on the tests.

He might want to continue with a trial of the gluten-free diet, which I think is much more reasonable--but doctors don't make as much money on that as they do on endoscopies/biopsies! And if there is something else going on, an endoscopy might show what. But you could always do an endoscopy later, if there IS any indication that something else is going on.

Be aware that gluten-free breads, cookies, pancakes, etc., are more difficult for a damaged tummy to digest. You might want to stick with plainer, unprocessed foods for a while, and go very easy on the gluten-free flours.

Good luck!

[ang1e0251]

I react quickly to "normal" amounts of gluten, the same day. Smaller amounts I react to a couple of days later or even very small amounts, it takes every day exposure for a few days. But each person reacts differently. It's very reasonable to hear she ate a food one day and reacted the next. Put these foods in your food/ reaction diary and report them to her dr. I'd say that's a sign of a definative response.