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Negative For Celiac Despite Biopsy And Prior Positive Bloodwork...confused!

rhyanen

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rhyanen Newbie
rhyanen
Posted

Hi, it's been years since I've been here. Long story short. My son was diagnosed with celiac at 22 months. He had all the classic symptoms. His gliadin IgG was strongly positive, all other tests negative. He underwent intestinal biopsy,which showed focal flattening of villi. We implemented the gluten-free diet and his health dramatically improved. He had behavioral issues that did seem to subside, but not enoigh to keep him from being diagnosed with high functioning autism at age 3.

After 6+ years of being gluten free, our ped GI informed us that he sent the biopsy slides in for a second opinion due to misdiagnosis of other patients. The slides came back negative for celiac. Around that time, we were having some financial difficulty and were having a hard time affording the gluten-free diet, so we started introducing gluten back into his diet. It has now been 3 years that he has been eating gluten regularly. No GI problems whatsoever, where in the past, he would get deathly ill..(weight loss, chronic vomiting and diarrhea, lethargy and bone pain, fevers)

Recently he has been having an onset of OCD and tics, so we consulted our DAN! doctor who decided to run another celiac panel among other tests. Completely expecting it to come back positive and awaiting a lecture from the doc, we were completely surprised and baffled when it came back totally negative for celiac/gluten sensitivity despite eating gluten the past 3 years!

So if he doesn't have celiac or a gluten intolerance, what would cause the gliadin IgG to be positive in the past if gluten isn't affecting him? So confused! Thanks!

Amy

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Skylark Collaborator
Skylark
Posted

How confusing! I wonder if your son had an IgG allergy or severe intolerance rather than celiac?

As I'm sure you know, gluten-free/casein-free is great for autistic kids. I would encourage you to take him back to gluten-free/casein-free and see if it helps the OCD and tics even if he is not celiac. It could be that the gluten-caused inflammation has shifted from his gut to his nervous system. Gluten can cause a lot of psychiatric problems in intolerant folks and if you can afford it now, you may really help your son taking him off gluten again.

rhyanen Newbie
rhyanen
Posted
  • Author

Thanks Skylark. We may just do that. He is off most dairy even though he doesn't have any problems with it. We also are looking at PANDAS as part of the culprit for his ocd and tics. He tested positive for anti-strep antibodies. It's crazy how once the wheels of autoimmunity start turning, anything can happen.

maximoo Enthusiast
maximoo
Posted

I saw a documentary (I think it was Mystery DX) about a kid who had PANDAS It was fascinating. For those of you who don't know what it is, its the strep virus (or is it bacteria?) & it attacks the brain instead of settling in the throat (strep throat) Well the boy in the documentary fully recovered with the right meds & therapy.

Whatever is afflicting ur boy I hope it gets resolved. Best of luck !!

frieze Community Regular
frieze
Posted

Hi, it's been years since I've been here. Long story short. My son was diagnosed with celiac at 22 months. He had all the classic symptoms. His gliadin IgG was strongly positive, all other tests negative. He underwent intestinal biopsy,which showed focal flattening of villi. We implemented the gluten-free diet and his health dramatically improved. He had behavioral issues that did seem to subside, but not enoigh to keep him from being diagnosed with high functioning autism at age 3.

After 6+ years of being gluten free, our ped GI informed us that he sent the biopsy slides in for a second opinion due to misdiagnosis of other patients. The slides came back negative for celiac. Around that time, we were having some financial difficulty and were having a hard time affording the gluten-free diet, so we started introducing gluten back into his diet. It has now been 3 years that he has been eating gluten regularly. No GI problems whatsoever, where in the past, he would get deathly ill..(weight loss, chronic vomiting and diarrhea, lethargy and bone pain, fevers)

Recently he has been having an onset of OCD and tics, so we consulted our DAN! doctor who decided to run another celiac panel among other tests. Completely expecting it to come back positive and awaiting a lecture from the doc, we were completely surprised and baffled when it came back totally negative for celiac/gluten sensitivity despite eating gluten the past 3 years!

So if he doesn't have celiac or a gluten intolerance, what would cause the gliadin IgG to be positive in the past if gluten isn't affecting him? So confused! Thanks!

Amy

Is it possible the DAN doc did only the IgA panel?

dilettantesteph Collaborator
dilettantesteph
Posted

False negative tests are possible. I wonder if a gluten free diet might have an effect on the OCD and ticks? Might be worth a short trial.

maximoo Enthusiast
maximoo
Posted

what is a DAN doc?

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frieze Community Regular
frieze
Posted

what is a DAN doc?

D efeat

A utism

N ow

October3 Explorer
October3
Posted

I am still pretty confused about the celiac tests and what exactly they are looking at, but I do know that it is possible to have an IgG based sensitivity to a food that is not life long. I had extensive IgG food intolerance testing done and am almost certain that with eliminating those foods for a time and working on overall gut health I've been able to reintroduce those foods without issues. And I know a lot of people who say the same. So, again, I don't know what exactly they look at with the gliadin IgG but it seems to me it might be possible to be positive at the time because he really was very sensitive then but if the biopsy was wrong and he simply had a gluten sensitivity rather than celiac he might be tolerating it fine now.

GFdad0110 Apprentice
GFdad0110
Posted

Isn't it possible that infants and toddlers can have a wheat allergy and out grow it?

rhyanen Newbie
rhyanen
Posted
  • Author

That's what I was thinking. I think he just had a terribly leaky gut when younger and it caused his gliadin IgG to be positive. He had several insults to his body, and we recently found out he is sensitive to soy. I feel terrible because he didn't tolerate regular formula well as an infant, so we switched him to soy. Just another extra insult added to the mix. I am thinking his gut has healed enough over time though after removing gluten for all those years. I guess it doesn't hurt anyone to be gluten free anyway.

Mom-of-Two Contributor
Mom-of-Two
Posted

I honestly wouldn't worry about getting a diagnosis, rather keep him on a gluten-free and casein free diet, as it is very beneficial for autistic kiddos. I worked with some young ones who did fantastic on gluten-free diet, and then casein removed improved them even more- in addition, some good probiotics for autistic children can be very beneficial at keeping their gut flora ideal. I would continue with what you know works, as there is not a different treatment for celiac anyway, other than doing what you were doing and cutting out the gluten.

Also be sure about hidden sources if you think he should be totally gluten-free- soaps, lotions, supplements or drugs, etc.

I am learning a lot since being diagnosed only less than 2 weeks ago, about how hidden gluten can be in items, it is amazing!

I am not an expert since I just got diagnosed with celiac, however I do know about autism which is why I commented :)

Good luck!

1974girl Enthusiast
1974girl
Posted

I have a friend who does gluten free soley because of her child's facial ticks. She had them for 2 years and within 3 days of gluten-free and Dairy free...they were gone. She has introduced dairy back just a little and they are still gone. She swears it is gluten. Just thought I'd pass it along.

October3 Explorer
October3
Posted

That's what I was thinking. I think he just had a terribly leaky gut when younger and it caused his gliadin IgG to be positive. He had several insults to his body, and we recently found out he is sensitive to soy. I feel terrible because he didn't tolerate regular formula well as an infant, so we switched him to soy. Just another extra insult added to the mix. I am thinking his gut has healed enough over time though after removing gluten for all those years. I guess it doesn't hurt anyone to be gluten free anyway.

I did the same thing to my super sensitive baby girl. Poor thing. She's 4 now and can tolerate almost everything that used to be a problem but soy is still a major problem even though we figured it out when she was 6 months so she's been off soy since then except for the periodic accidental contamination. I will say though that her reactions have changed through the years. It used to be more of a GI reaction where now soy for her is a big behavioral trigger.

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