Babies With Celiac: At Risk For Autism?

[Fiddle-Faddle]

I don't want to send anyone into an unwarranted panic, but I think everyone with an infant or toddler with celiac in the family might want to check out this website: Open Original Shared Link or www.autisminfo.com and click on Karyn Seroussi's story.

This is something I first read about 6 years ago--BEFORE I had any symptoms that might be related to celiac (except for Hashimoto's and having had shingles at age 25). My son, who was 4 at the time, had recently been diagnosed as autistic. After reading Karyn Seroussi's book, I promptly took him off all gluten and casein--and noticed significant improvements. After several months, we gradually reintroduced first gluten and then casein--with no noticeable changes. However, he does have occasional stomach things going on now which make me wonder if we should go gluten/casein free again. What I'm doing now is making breakfasts, snacks, and dinners gluten-free, and for lunch I've been giving him PBJ on sourdough bread (he HATES the gluten-free breads), fruit, and yogurt.

Another thing to check out (I've mentioned this somewhere on another thread here) is Andrew Wakefield's research involving leaky gut, the MMR vaccine--and autism.

This might be the subject of yet another thread (moderators, feel free to move anything I've written to a more appropriate place), but I'm wondering if a good place to look for recommendation for a doctor who actually KNOWS something about celiac might be an autism support group, since celiac is so common among autistics.

[lovegrov]

Not a criticism, but why did you put him back on gluten?

richard

[Fiddle-Faddle]

Not a criticism, but why did you put him back on gluten?

richard

At that point, nobody had said, "Celiac" to us. (And even now, I'm not officially diagnosed with it.)

When I first introduced cow's milk to him, he had instant diarrhea, so I put him on soy milk and tried again a month later, with the same result. It didn't occur to me that trouble with casein or gluten could be a lifelong difficulty; I thought that if I introduced cow's milk v-e-r-y slowly, he would be able to tolerate it. So I mixed 9 parts soy milk with 1 part cow's milk--and it didn't seem to bother him at all, so I gradually increased the cow's milk over about six months.

He never had the classic signs of celiac (stomach aches, diarrhea, etc) as a toddler. When I took him off gluten and casein, we didn't notice any physical effect--but his eye contact and social skills improved noticeably. I thought I could do the same thing with gluten that I did with casein--reintroduce it gradually. And in fact, we didn't see any discernable changes when we did reintroduce gluten into his diet.

A couple of years later, he began to get once-or-twice-a-year horrendous stomach aches, followed by an enormous large round solid poop. We increased the fruit in his diet, and these episodes remained few and far between.

What I've noticed recently has been frequent stomach aches with all my kids, and, with my oldest, large, pale-yellowish stools--but, like any other 10-year-old, he refuses to discuss his bowel habits with me, so I don't know if that part has gotten better, but since I've drastically decreased the gluten at home (right now, I'm the only one who is gluten-free), we've only had one quick tummy ache in 6 weeks!

At this point, I'm only guessing, but I think the recent spate of tummyaches has to do with my serving much more bread and cookies than I had in the past (I developed an interest in baking this year). I never had tummy troubles as a child--and my mother NEVER served bread with breakfast or dinner, and she never breaded-and-fried anything, either. The only gluten we had was at lunch and snack except for Passover. Maybe if I limit gluten now, that might be enough to keep them from having problems--or maybe we'll just all have to go completely gluten-free. We'll see. Good thing we all like rice and potatoes in our family.

[KayJay]

When do they usually get the MMR vaccine? Maddie like all babies has a leaky gut but her GI said her seems to be sealing very slowly. Should I delay this vaccine?

Thanks for sharing by the way.

[Fiddle-Faddle]

When do they usually get the MMR vaccine? Maddie like all babies has a leaky gut but her GI said her seems to be sealing very slowly. Should I delay this vaccine?

Thanks for sharing by the way.

Wow, that's a tough one to answer. My husband and I got measles-only vaccines for our boys when they started kindergarten. Our oldest had an MMR at 15 months (before we know there was a possible problem), and our school district requires another MMR upon starting school. (By the way, you don't HAVE to get the vaccines, even though the media says you do. You simply check off the little box on the form saying that there is either a medical or religious reason not to give the child the vaccine.)

We're not totally anti-vaccine--we just don't want to wreck our children's immune systems shooting 26 vaccines into their bloodstreams by the time they're 2, which is the recommended schedule. (Scary, isn't it?)We were planning on getting a mumps-only vaccine for our son before he hit puberty (mumps can cause sterillity to adolescent boys), but were told that there is no mumps-only vaccine. Rather than automatically give him another MMR, we asked the pediatrician to do a mumps titer (measure the level of mumps antibody in his blood) to see if he really needed it. The pediatrician said, "Well, don't get your hopes up--he had an MMR at 15 months, he's 10 now, and the original MMR is only supposed to give 3-5 years of protection."

I bet it won't surprise any of you that our son had over 4 times the amount of antibodies in his system to be considered immune to mumps.

We will give our daughter a measles-only vaccine before she starts kindergarten. We have followed the suggested schedule for the polio vaccine, but not for things like hepatitis, as nobody in our family (certainly not any of our children) are at risk for hepatitis. And we turned down the rotavirus vaccine, which I think got recalled anyway, and every other vaccine where I felt that breastfeeding offered a healthier kind of protection.

My son did get a chicken pox vaccine before I knew that they weren't mandatory. Interestingly, he got chicken pox anyway--as did most of his school the same month. Every mom I talked to said that her kid had also received the vaccine. While I admit that just about all the kids had milder than usual cases, my pediatrician told us that these kids may be at greater risk for shingles later on.

Rubella (the R in the MMR) is not a dangerous virus for children--but it IS disastrous to the fetus of a pregnant woman who might be exposed to it. That is certainly something to take very seriously.

Hope that gives you some info for starters. Ask your pediatrician--and if he or she insists on your following the recommended schedule, find another pediatrician (check with your local autism support group to find which pediatricians let you spread out the vaccines).

Good luck!

[taweavmo3]

I've read the book by Karen Sourrisi, it was GREAT! I love that book. I have no doubt that my daughter would have been diagnosed with autism had we not found celiac first. I still wonder, b/c she is delayed by 18-24 months. She still has problems learning new things, like colors. Her brain just seems to process things differently, and I'm waiting on an eval by a dev. ped to get more ifo. Her speech is also very behind, and she's in therapy for that. But she has great eye contact, she's very social, and afftectionate. She had none of this before starting the diet.

The ped also asked alot of questions regarding autism with my youngest, who's almost 2. His speech is also behind now, but in every other way he seems right on track. I put him on the diet too, just in case. I'm not taking any chances with him! He didn't have any of the classic symptoms either, but now that he's been gluten-free for about a month, he can tolerate dairy again. If his speech does not catch up soon though, I'll probably make him casein free as well.

I definately think it is all linked together......there is a strong gut-brain connection, and so much more to be learned. It frustrates me when doctors push all these new vaccines. I'm not anti vaccine by any means, I've had all my kids vaccinated. But I would like more choices to be available, and more support for a modified vaccine schedule. So many autistic kids have improved with chelation, that there has to be something there.

[shayesmom]

We're not totally anti-vaccine--we just don't want to wreck our children's immune systems shooting 26 vaccines into their bloodstreams by the time they're 2, which is the recommended schedule. (Scary, isn't it?)

Yes that is scary. Especially in light of the fact that two immunologists have now told me that in young children, the vaccines can be the "trigger" needed to activate Celiac's. My dd developed a new food intolerance after almost every vaccine she got. I finally confronted her doctor about this (armed with some medical studies) and he admitted that in families with autoimmune disorders, the current vaccine schedule is NOT a good idea and can trigger these problems. Unfortunately, until we figured out that Shaye had a gluten intolerance, we were not aware that there was an autoimmune disorder in the family.

Drawing blood titres is an EXCELLENT suggestion for people whose children have Celiac's or are at risk of other autoimmune disorders due to family medical history.

[taweavmo3]

Funny you mentioned that immunologists said the vaccines could be a trigger. I have always thought of that as a possible trigger for my child. I posed this question on another forum one time and got completely flamed for even thinking it. I guess I should have expected it since vaccines are such a hot topic, but it took me by surprise a bit. It seems like at the moment it's an all or nothing stance....and if you opt for an altered vacc. schedule, you are labeled as "anti vaccine".

I'm not sure what I'll do with this next baby, but I'm definately looking at options. I'm expecting some resistance from the ped already, based on the plethera of news articles posted in his office about the studies that show autism is not the result of vaccines! Oh well, wouldn't be the first time I've had to fight, and I'm sure it won't be the last.

[Jnkmnky]

My son looked like a mild form of autism prior to the gluten free diet. He is NOT autistic in any way, shape or form. But to think that GLUTEN in his diet camethisclose to having him dxed as autistic... I can't believe the lack of knowledge about how food can impact a person. I was raised on twinkies and coke, cheetos and kool aid, chef boy ardee and capn crunch.... And they wonder why we have an epidemic of diabetes, overweight folks, and auto immune diseases... I am thankful that my son developed Celiac disease. It changed the way I saw food. I had not even considered how much it mattered. I was not overweight, my kids sure looked healthy even on the standard american diet of processed crap. But what I've learned... We are soy, dairy, gluten, gmo, and msg free. (dairy very light, I should say.. like a couple times a month we'll use a dairy product in cooking or something.) I feel so good about how they eat. I wandered way off topic, but I wanted to chime in really about the autism connection to celiac.

[Fiddle-Faddle]

Jnkmnky, do you mind if I ask what kinds of lunches you pack, and what dinners your kids like? I'm starting to run out of ideas....Thanks!

[shayesmom]

Funny you mentioned that immunologists said the vaccines could be a trigger. I have always thought of that as a possible trigger for my child. I posed this question on another forum one time and got completely flamed for even thinking it. I guess I should have expected it since vaccines are such a hot topic, but it took me by surprise a bit. It seems like at the moment it's an all or nothing stance....and if you opt for an altered vacc. schedule, you are labeled as "anti vaccine".

I'm not sure what I'll do with this next baby, but I'm definately looking at options. I'm expecting some resistance from the ped already, based on the plethera of news articles posted in his office about the studies that show autism is not the result of vaccines! Oh well, wouldn't be the first time I've had to fight, and I'm sure it won't be the last.

When I went to our PCP with the information I had gathered and asked him directly about the possibility of the vaccines triggering this disorder, he was very honest about it and said the probabilities were high. He also went as far as to tell me that vaccines are an issue he has personally struggled with for the past 15 years. He is definitely against any combination of vaccines and is a firm believer of doing them one at a time, one month apart. I wish I would have been with his office instead of our former pedi. She was a vaccine pusher....no matter what the circumstances. She even pushes the flu shot on children who have tested positively for egg allergies! I know this because she pushed it on us on the same appointment that I told her of Shaye's confirmed allergy to eggs. PSYCHO! We haven't seen her since.

Anyway, our PCP wrote us a medical exemption from the vaccines as he was definitely concerned that we'd be at risk for autism. Not only does Shaye have food intolerances, but she's a bit high on some of her heavy metal tests which suggests a problem of eliminating metals to begin with. No thanks. I like my child just the way she is and will live with the fact that most people think we're crazy for not vaccinating. Ultimately, SHE has to live with the consequences of what I decide. All things considered, you feel d@mned if you do and d@mned if you don't when it comes to this topic. I am not claiming that Shaye wouldn't have ever developed full-blown Celiac's or even saying that she wasn't born with it already "activated". But our doctor said that there was a very strong possibility that the vaccines can be one of the "environmental triggers". The fact that new food allergies cropped up within days of vaccines being administered definitely points to a possible connection. She has made such huge strides in her health, height and weight that I am NOT about to rock the boat again. I can deal with keeping her home for 10 days should there be an outbreak of an infectious disease.

I'm sorry that you got flamed in the past when bringing this topic up. People mean well....and they truly see this as being part of a greater good. Unfortunately, the sky isn't so bright for those of us whose children are in the minority who have unfavorable responses to the vaccines. There needs to be choice when it comes to this and parents should be well informed prior to consenting. But what do you do? Hindsight is always 20/20. You may want to ask around a bit and see if you can schedule a consult with a physician who is familiar with autoimmune disorders and has some sort of background in immunology. You don't have to avoid the vaccines at all. But it may be better to begin them later on (6 months old) and not to do the combination vaccines. In either case, research this out just as you have the gluten-free stuff.