Autism And Gluten Free Diet...thoughts, Etc...

[JillyBean]

Hi Everyone, I'm a Mom who has a son with Aspergers syndrome. I'm not sure whether I should have done so without getting the blood work

etc, but I started my son on a gluten-free diet a couple weeks ago. School has been going horribly and we've been trying all sorts of

other things like occupational therapy etc. Our occupational therapist wanted us to do some kind of therapy where they let him listen

to some kind of a music disc for 45 minutes/session and charge us $8,000 (insurance doesn't cover it)...and she couldn't provide me any kind of

references or even printed matter to back it up. Obviously, I would spend any amount of money if it would help my

son and make him better...but I don't really have $8,000 and so decided to exhaust other options first.

A couple of questions. First of all, do you think it's likely if I were to go get the blood work done maybe it's not been all that long

and we might get a correct result? Our doctor did also mention that there were lots of false negatives with the blood work. He also

seemed to think that gluten sensitivity is pretty rare so pretty unlikely.

So he's been gluten-free (mostly...and yes I know that's probably not good enough..I've been checking labels and he hasn't had anything

with obvious wheat) for a little over 2 weeks. I'm wondering how long is long enough to determine if the diet is working? If he does have

some sort of gluten-sensitivity do you think there would have been some sort of amazing improvement after only a few days or would this take a while?

Anyway, I did notice that they gave him crackers at school (regular glutenous crackers) and I had to go get him at school due to his behavior. Anyway,

I noticed that a couple hours after I brought him home, his eyes were purple underneath (so it was probably close to 3 hours since he had the crackers).

This seemed to go away by evening. Obviously, who knows why his eyes were purple underneath...could have been anything.

Does anyone have any advice on how I can keep objective in this. Obviously, I want my son to get better and some things *seem* to be better, but how

do I make sure I'm not just seeing what I want to see?

Thanks for any advice, etc on this.

[starrytrekchic]

My understanding (I am not a doctor, I've just read up on it) is that gluten free works only when celiac or gluten intolerance is an underlying cause of autism (or if a celiac child has been misdiagnosed as autistic.)

A few days should be enough to recognize changes and improvements, but that's assuming everything you're feeding him is truly gluten free (no cross contamination, no one giving him anything else.)

Bloodwork is always iffy with children (lots of false negatives). I would go ahead and try the bloodwork now, but it's very likely to come back negative. The chance of it not being gluten intolerance isn't really a good reason for your doctor not to do it. Obviously, the odds were against all of us being celiac, yet here we are....

I'd stick with the gluten free anyway--anything that might help, right?--for at least several months, just to see.

[celiac-mommy]

My son was definately on the autism spectrum. The only reason we tried the gluten-free diet was because my daughter had a positive diagnosis, gi issues only. His tests results, pre-gluten-free, were negative. He had 3 weeks worth of diarrhea and was losing weight that he couldn't afford to lose. I took him off of gluten just to see what happened and within 3 days he was a totally different kid. He was 'normal'. All of his teachers noticed immediately, family and friends were shocked that it was the same kid. His biopsy was suspicious, yet negative but our gi diagnosed him based on his dietary response. He never had a complete autistic diagnosis either. The pediatrician was waiting to see... for what, I'm not sure....

[JillyBean]

My son was definately on the autism spectrum. The only reason we tried the gluten-free diet was because my daughter had a positive diagnosis, gi issues only. His tests results, pre-gluten-free, were negative. He had 3 weeks worth of diarrhea and was losing weight that he couldn't afford to lose. I took him off of gluten just to see what happened and within 3 days he was a totally different kid. He was 'normal'. All of his teachers noticed immediately, family and friends were shocked that it was the same kid. His biopsy was suspicious, yet negative but our gi diagnosed him based on his dietary response. He never had a complete autistic diagnosis either. The pediatrician was waiting to see... for what, I'm not sure....

Rachelle,

That's amazing!!! I do think my son is doing a bit better...but he came home from school with stuff on his face and his eyes purple underneath again and then his lips bright

red all around the perimeter (like he put on lipstick right outside his lips). He said the teacher gave him crackers. Now it's a few hours later and his eyes look better

and lips too. I wonder if he's actually allergic. Though he's been eating wheat like any regular person all this time (until I decided to try the gluten free thing a couple

weeks ago) and I've never seen the purple eyes or the funky lips.

My son is high functioning, but is having lots of meltdowns, mostly at school. Yesterday though he came home and

wanted to use the telephone to call his friend. I almost fell on the floor. He's never cared much about using the telephone before. Anyway, I guess I'll keep trying and

will make sure the teacher isn't giving him gluten.

Interesting.

[GlutenFreeManna]

Rachelle,

That's amazing!!! I do think my son is doing a bit better...but he came home from school with stuff on his face and his eyes purple underneath again and then his lips bright

red all around the perimeter (like he put on lipstick right outside his lips). He said the teacher gave him crackers. Now it's a few hours later and his eyes look better

and lips too. I wonder if he's actually allergic. Though he's been eating wheat like any regular person all this time (until I decided to try the gluten free thing a couple

weeks ago) and I've never seen the purple eyes or the funky lips.

My son is high functioning, but is having lots of meltdowns, mostly at school. Yesterday though he came home and

wanted to use the telephone to call his friend. I almost fell on the floor. He's never cared much about using the telephone before. Anyway, I guess I'll keep trying and

will make sure the teacher isn't giving him gluten.

Interesting.

I don't know how it works with autism, but many of us with gluten intolerance find we get more sensitive to gluten after we go gluten free. I never had any bad gastro problem before I went gluten free, my symptoms were mostly neurological. Now if I get gluten accidently I have BOTH gastro-intestial symptoms and neuro symptoms. So if the purple eyes and red lips are a result of gluten it would not be surprising, IMO that he never had that reaction before.

At this point I think you either need to challenge him with lots of gluten again and get the blood tests or see if the school will work with you on keeping him gluten free without the doctor's diagnosis. Take some gluten-free snacks in for him to eat during snack time so he doesn't get the gluten ones.

[GFinDC]

There are some members with Asperger's who pop in now and then. I have no direct experience with it so can only relate what I have heard. It seems that nuerological symptoms can be some of the slowest to respond, judging from other posts here. So a good plan might be to try the diet very strictly for 6 months and then see if there is a change. Casein free is usually suggested also. Really the only way to know if it is going to help is to actually do the diet and see. I don't think there are any tests that would tell that ahead of time. It is a good healthy diet though and no reason not to do it anyway. A whole foods approach is a great way to get going. By avoiding all processed foods you eliminate =more things than gluten. There is also, soy, food colorings, and preservatives to consider. It's not impossible to have a reaction to any of those things also.

[missy'smom]

My son has an ADHD DX. Different I know but we have seen improvement with him. Not dramatic with gluten-free. Took us a long while to realize the changes. He's gluten-free because his eczema disappeared and stayed away with gluten-free and comes back with gluten. What's made a more noticable difference is getting tested for allergies, environmental and extensive food panels and agressively managing them. Last year, because he has an IEP, they tracked his progress and made a graph. They gave that to me this year and the pattern was unmistakeable. At the time they were not aware of what we were doing at home-so, one month after agressively tackling his allergies, his progress shot way up and stayed there the rest of the school year. I might not have noticed such a dramatic difference on my own. To manage the alleries that were uncovered, we started meds and allergy shots for the heavy environmental load and eliminated all 10 food allergies. One parent of an ADHD child here told me much the same but at the time I couldn't imagine that happening for us. This year we started reducing our exposure to latex, which we are both allergic to. I heard from another mom and I experinced myself that latex exposure for those who are allergic can cause a person to feel uncomfortable in their own skin, irritable, jumpy...

I guess my point is that there can be multiple pieces to the puzzle and the total sum can make a difference if one thing alone doesn't seem to make a big difference. With us, I felt overwhelmed by all the avenues to pursue so I decided to start with the known. We knew he had serious environmental load because of constant runny/stuffy nose. I suspected a possible food allergy and found a good allergist who believed in eliminating foods even if they didn't cause anaphylaxis, but had not idea of the things that revealed themselves. It's been a journey. Good luck to you. My kiddo still needs some services but was on the honor roll last semester and he has never been medicated.

Those lips and eyes would make me want to get allergy tests. I know many say testing wasn't helpful for them and we went to one allergist who wasn't but this second one has been very helpful. His tests have been right on and as I said, we've made a lot of progress with him.

[jenngolightly]

Hi Everyone, I'm a Mom who has a son with Aspergers syndrome. I'm not sure whether I should have done so without getting the blood work

etc, but I started my son on a gluten-free diet a couple weeks ago. School has been going horribly and we've been trying all sorts of

other things like occupational therapy etc. Our occupational therapist wanted us to do some kind of therapy where they let him listen

to some kind of a music disc for 45 minutes/session and charge us $8,000 (insurance doesn't cover it)...and she couldn't provide me any kind of

references or even printed matter to back it up. Obviously, I would spend any amount of money if it would help my

son and make him better...but I don't really have $8,000 and so decided to exhaust other options first.

A couple of questions. First of all, do you think it's likely if I were to go get the blood work done maybe it's not been all that long

and we might get a correct result? Our doctor did also mention that there were lots of false negatives with the blood work. He also

seemed to think that gluten sensitivity is pretty rare so pretty unlikely.

So he's been gluten-free (mostly...and yes I know that's probably not good enough..I've been checking labels and he hasn't had anything

with obvious wheat) for a little over 2 weeks. I'm wondering how long is long enough to determine if the diet is working? If he does have

some sort of gluten-sensitivity do you think there would have been some sort of amazing improvement after only a few days or would this take a while?

Anyway, I did notice that they gave him crackers at school (regular glutenous crackers) and I had to go get him at school due to his behavior. Anyway,

I noticed that a couple hours after I brought him home, his eyes were purple underneath (so it was probably close to 3 hours since he had the crackers).

This seemed to go away by evening. Obviously, who knows why his eyes were purple underneath...could have been anything.

Does anyone have any advice on how I can keep objective in this. Obviously, I want my son to get better and some things *seem* to be better, but how

do I make sure I'm not just seeing what I want to see?

Thanks for any advice, etc on this.

I was not totally better on a gluten-free diet, so I eliminated more foods. I went on the Specific Carb Diet and the following website was recommended. It's much more strict than gluten-free, but parents find that it really improves behavior issues. It is geared toward parents of Autistic kids, so I thought it might be of interest to you... Open Original Shared Link

[JillyBean]

I was not totally better on a gluten-free diet, so I eliminated more foods. I went on the Specific Carb Diet and the following website was recommended. It's much more strict than gluten-free, but parents find that it really improves behavior issues. It is geared toward parents of Autistic kids, so I thought it might be of interest to you... Open Original Shared Link

Oh, I've heard of the SCD. I did send gluten free snacks to school for them to have on hand today. I'm not exactly sure how to keep up the motivation both for myself cooking for

him and also for him (if someone offers him a regular cookie, of course he wants it). I'm guessing we're going to have a "gluten" challenge on Christmas (or else I have to figure out

where to get gluten free "ritz" crackers). One of you guys mentioned trying for 6 months, I'm not sure I'll be able to keep it up that long unless we really are seeing good results.

My son did have atopic dermatitis something awful when he was a baby and I took him to one of the top 100 skin doctors in the entire USA. At the time it didn't occur to me it could be

some food allergy and I didn't ask, but prednisone did an amazing job of clearing up the dermatitis. Grandma insists that he was completely fine (no autism) until sometime when he was

between 2 or 3 and she claims all of a sudden something seemed "off" - I myself didn't notice any such thing, but then I live with him and see him every day. She would like to blame

vaccination. I do remember trying to get him to look at me and make eye contact when he was a baby and having trouble getting him to look at me.

So I guess I just need to decide if I want to try to get some kind of medical proof and thus some kind of motivation to stick with the gluten-free diet...or if I'm motivated enough to just keep

doing this in hopes that something will change and get better. Thanks you guys for any other advice.

[GFinDC]

...

My son did have atopic dermatitis something awful when he was a baby and I took him to one of the top 100 skin doctors in the entire USA. At the time it didn't occur to me it could be

some food allergy and I didn't ask, but prednisone did an amazing job of clearing up the dermatitis.

...

There is a skin condition that some people with celiac get called dermatitis herpetiformis (DH). There is a section of this board dedicated to it with lots of info. But it can cause a rash that is symetrical on both sides of the body, both elbows, both knees etc. I think they treat it prednisone. Anyway, DH is a specific to celiac skin condition. If you have DH, you have celiac too. They test for it by taking a biopsy of the skin around the lesions, not the lesion itself.

Just some more info to consider.

[mommida]

If you are going to test for Celiac, the patient needs to ingest gluten. You can try the genetic test, but it wouldn't be a "gold standard diagnoses" and it still is not a fail proof test.

If there is a positive on the bloodwork panel, the next step toward diagnoses is the scope with biopsy. (A friend's child was wrongly diagnosed with Celiac. A medication was causing the villous atrophy. ~This is their story, not mine.) Is your child on any medications?

My friend's son with Asperger's does have quite a list of allergies. (He carries an Epi-pen EVERYWHERE,, and because we are rural, more than one dose too.)

An objective way of monitoring the diet is to make a food journal. Note all foods, amounts, time of ingesting, mood check, and BM's. An intolerance should show a reaction quickly. I'm not sure of the window of time for a "true allergic" reaction. In the case of "like an allergic reaction" ,specifically an eosinophilic reaction, that can react up to 12 days after "trigger" food reaction. So you really need to be diligent for a "food" journal. The younger the child the more diligent to include any toys that may go into their mouths. Toothpaste, Chapstick, mom's hand lotion, even pet food.

Dark circles or Purple under the eyes is sometimes referred to as "allergy shiners". Allergy testing would be a good place to start too.

Most of the "Autism diet" reccomendations are to be gluten and CASIEN free.