Iga Positive - Always Celiac? Or Just Sensitivity?

[bjshad]

Hi - I have a very general question - My DD who is three had a stool test with Enterolab that came back positive for IgA anti-gliadin antibodies - she scored a 62. Is the production of IgA antibodies to gluten simply mean she's having an immune system response, not necessarily celiac, but an immune response nonetheless?

I'm trying to figure out if I want to persue an actual diagnosis. We had taken her off gluten because she is on the autism spectrum and she was being weaned off gluten (about 95% gluten free) at the time of Enterolabs test. We were planning to give gluten free a good, honest try as a therapy and being very strict about the diet - doing it the proper way. But I wanted to have some proof that it was a good thing to do, so I ordered the Enterolab test, and it came back positive. So now I'm not sure what to do. I don't want to put her back on gluten (just for the sake of another test) because she's had a very positive response to the diet - her speech is improving, her asthma is clearing up (and it was VERY BAD for awhile there), her skin looks less blotch and rashy. Main thing - her speech! Much more complex thoughts and speech than when she's on gluten.

So should I persue a diagnosis or just keep her on the diet? Does is matter? Thanks for any and all opinions. Just not sure what to do.

Beth

[lob6796]

Hi - I have a very general question - My DD who is three had a stool test with Enterolab that came back positive for IgA anti-gliadin antibodies - she scored a 62. Is the production of IgA antibodies to gluten simply mean she's having an immune system response, not necessarily celiac, but an immune response nonetheless?

I'm trying to figure out if I want to persue an actual diagnosis. We had taken her off gluten because she is on the autism spectrum and she was being weaned off gluten (about 95% gluten free) at the time of Enterolabs test. We were planning to give gluten free a good, honest try as a therapy and being very strict about the diet - doing it the proper way. But I wanted to have some proof that it was a good thing to do, so I ordered the Enterolab test, and it came back positive. So now I'm not sure what to do. I don't want to put her back on gluten (just for the sake of another test) because she's had a very positive response to the diet - her speech is improving, her asthma is clearing up (and it was VERY BAD for awhile there), her skin looks less blotch and rashy. Main thing - her speech! Much more complex thoughts and speech than when she's on gluten.

So should I persue a diagnosis or just keep her on the diet? Does is matter? Thanks for any and all opinions. Just not sure what to do.

Beth

It is my understanding that a positive IgA means Celiac for sure. A negative IgA doesn't mean she doesn't have Celiac (since some are IgA defiecient). So I would say yes, she has Celiac disease and you could approach official diagnosis through her pedi. That said, you don't NEED a diagnosis to go gluten free with her. In fact, a gluten free diet (with or without Celiac) is recommended for children with autism anyway. So if she's doing good, you could just go strictly gluten free knowing that she does have Celiac, and that you are helping to improve the symptoms from that and the autism spectrum. Good luck

[Rachel--24]

So should I persue a diagnosis or just keep her on the diet? Does is matter? Thanks for any and all opinions. Just not sure what to do.

Beth,

In my opinion most autistic kids will do much better on a gluten-free/cf diet. I would keep her on the diet if she were my child. She may not have Celiac but still....its my understanding that "leaky gut" is very common with kids on the spectrum.

If she has leaky gut (and I dont doubt that she does given the fact that speech is improving) she will be reactive to gluten regardless of whether or not she has Celiac.

Yes...with Enterolab's IgA testing there is an immune response to gluten but its not Celiac in every case. I have leaky gut and similar issues that are commonly found in autistic kids.....my Dr.'s treat Atuism so I have learned quite a bit from them and from my own research.

I do not have Celiac and would never test positive for it in traditional bloodtests or biopsies...I'm not genetically susceptible....however, it doesnt make the immune response any less serious.

Your daughter may very well have Celiac.....it would be impossible to determine that w/out having her back on gluten for a few months and then tested. In this case I dont think the "official" diagnosis matters much. Her launguage skills are improving and this is a clear indication that she is benefiting from not having gluten in her diet. For this reason I would keep her on the diet as if she were diagnosed Celiac.

We were planning to give gluten free a good, honest try as a therapy and being very strict about the diet - doing it the proper way. But I wanted to have some proof that it was a good thing to do, so I ordered the Enterolab test, and it came back positive.

The diet really does help kids on the spectrum. Yes....I do think its a good thing that you're doing and I hope that you continue.

With regards to Enterolab...the test cant determine whether or not your child has Celiac. It can only identify a sensitivity to gluten. I dont consider the test to be diagnostic....nor do they claim to diagnose Celiac. Many people, myself included, can become gluten intolerant due to leaky gut and other problems in the gut so its hard to know what the true cause is with Enterolab results.

The main thing is that there is an immune response occurring and that your daughter is improving on the diet. I would stick with it for sure.

There is much evidence that the kids on the spectrum benefit from not having gluten and casein opiates passing through the gut and into the bloodstream.

Even if you pursued a Celiac diagnosis and she was found not to have it...I wouldnt say she *just* has a sensitivity. Since the gluten is impairing her speech...I think its safe to say that she has leaky gut and the opiates from gluten can have quite an affect on the brain...not unlike a powerful drug. She will most likely have much better brain function on a gluten-free/cf diet.

Have you read much about the gluten-free/cf diet and autism??

If you are interested I can provide you with some links.

Good luck...hope she continues to improve her laungauge skills.

[Guest j_mommy]

Getting an "official" Diagnosis is a personal choice. If she's improving amd moving ahead is it worth it to set her back???

If I were in your position...I would just continue the diet, b/c as mentioned above she would have to back on Gluten to get a good diagnosis through a physician.

Maybe when she's older you could get the offical one...maybe give her the choice of doing so(in a couple of years of course).

I wish you the best of luck!!!

I'm a huge supporter of "Living Gluten free for dummies by Dana Korn and "Celiac Disease: A Hidden Epidemic" by Dr. Peter Green they are great resources!

[bjshad]

Thanks for the advice everyone - I appreciate it. She definitely has leaky gut. She was on round after round of antibiotics and had yeast overgrowth as a result until this past February when we figured out milk was causing her ear infections - since then, she's had only one after a cold that only needed topical antibiotic drops with no resulting fungal infection in her ear, which is a miracle! She was getting infections every 2-3 weeks for the past year or two, I kid you not. We finally took her to a differenet ENT who cultured her ear discharge (why didn't anyone do that before?!) and found out her infections were fungal, not bacterial. Her naturopath said she most likely has leaky gut and she definitely has all the symptoms of that. And with her autism spectrum issues - the Enterolab test was just the "nail in the gluten coffin".

We're going to keep her completely off gluten - I think when she's old enough to make a choice, if it becomes an issue, then we'll think about doing a gluten challenge and going for a diagnosis, but whether or not she has actual celiac or not - she definitely has reactions to gluten. And she has a positive stool test to it as well, so I'm positive it's the right thing to do.

As a matter of fact, I have issues with gluten myself. Since going gluten free (we're doing it as a family, unless my oldest daughter is out or DH is out and wants something with gluten), my "aches and pains" are better - I thought I seriously had chronic fatigue syndrome or fibromyalgia until I went off gluten. Now I'm off it completely as well and if I get "glutened", I start to ache again. And I have gastro issues as well. I actually think both DD and I were glutened yesterday. We went to church and I have a feeling she snuck something she wasn't supposed to have - I need to deal with that issue because it's happened before - it's DD - she'll sneak food before anyone notices - and later in the day, DD had explosive - no nice way to say it - diarhhea and it had "that smell" to it. So I definitely know she has gluten issues. No doubt in my mind.

Anyway, thanks for all the help - I appreciate it.

Beth