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darlenevile

Autistic Daughter W/ Strange Bowel Problems, Tooth Decay, More

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I'm a young mother with two autistic daughters, one 8 years old, the other one 7. My 7 year old is more severe than her sister, with her lack of potty training being a major issue. With so many problems to deal with, including my own health problems, my husband and I have been very quick to blame her bowel issues on her autistic behavior or the lack of variety in her diet, but I just know that it's something serious. For one thing, she has had this weird soft diarrhea everyday of her life for four years. It's not as liquid as with food poisoning, but it's very very soft and unformed. It's seems impossible for her to evacuate all of it out, and there's always some there left that makes diapers a necessity. The reason we've blamed her autism is because she hates going potty and will hold it in as long as possible, and refuses to go number two in the toilet. She has no problem peeing in the toilet, but she will kick and scream if you try to put her on the toilet while she's going number two. So we thought her holding it was somehow causing the texture to be how it is, but we can't ignore the fact that it's something else causing it. It's too soft, too runny, for too long and she has too little control for it to be purely behavioral. She has many other unexplained problems as well--one being her teeth seemed to be rotting away for no reason. Her teeth just keep flaking and breaking off and turning brown, and we've had to get root canals on her front teeth to stop the pain it was causing. The dentist accused us of not brushing her teeth, of feeding her nothing but junk food, and what not, but that's not true. So why is this happening?? Another thing is she is so weak and small, that people always think she's atleast two years younger than she is. She's pale, is always tired--in fact she carries around a security pillow because she always needs to lay down every so often, even at the store or playground. The most disturbing symptom by far is her periodical stomach 'attacks'. Every few months, she has violent bouts of vomiting and pain in her stomach, so bad she screams in pain and vomits every ten to fifteen minutes. The muscles in her hands and feet lock up like the blood has been cut off, like when a limb gets pins and needles from falling asleep, except violently, causing her hands to take on a claw shape and they are stuck that way for twenty minutes at a time, then they relax. Then an hour later, they lock up again. This goes on for about 24 hours, and then the symptoms calm down and she vomits every few hours for another day or so, and then she's back to normal. We think it's related to something she is eating, with pizza from certain restaurants and hot dogs being on top of our enemies list, but then sometimes we don't know what it could be that's upset her stomach so badly. All of this is a lot to consider, but does this sound anything like celiac disease? She eats so much gluten in her diet, with ramen noodles being her favorite food. We eat a lot of fast food as well like chicken nuggets and french fries, and I'm sure many other gluten laced foods. If anyone has a child with similar problems I would really appreciate any information or advice anyone can give me.

Thanks so much!

Darlene

darlenevile@gmail.com

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Hi Darlene. I'm certainly not an expert, but I have read several articles that relate some forms of autism to Celiac Disease. As far as bowels.....I had soft, unformed movements for years. I thought it was just "normal" for me. I called them cat-poops, because that was about the size of it. In spite of regular brushing and a so-called healthy diet, I lost the enamal on my teeth and have had many dental problems.

Because of her small stature...digestive problems....peripheral neuropathy, I would say to not hesitate to have her tested. It's the only way you'll know for sure, assuming that a negative would not be a false negative. It's a place to start, anyway. Good luck to you....my heart goes out to you.

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Hi Darlene. I am so sorry your daughter is having such problems. I agree with Flourgirl that with those symptoms the first place I would start is blood testing for celiac disease.

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It sounds to me as there is definately dietary issues coming into play. Autistic children even if not celiac often benefit from a gluten free diet. I have 2 autistic children and both have had bowel issues.

Dairy is a major concern as often too there is an intolerance or allergic reaction to the casien in milk.

I'd keep a food diary or seek the guidance of a dietician in the very first instance and there is absolutely a benefit to seeing if there is a celiac allergy.

I hope things improve for you. Having older children in nappies isn't fun at the best of times.

ALso wanted to add that your dentist is an ass. I have the best oral hygeine of anyone I know and I have had to have all my teeth crowned due to enamel erosion. Sometimes dental issues are not solely related to brushing.

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Sounds like the three of you could all try a few weeks off all gluten, dairy and soy to see if there is any improvement. Let us know if you try it.

One of the side effects I (and my two children) had when we ate gluten was an itchy/burning rectum. If this is bothering a child I can see why they would not want to move their bowels. Children may not know how to explain what is bothering them if they had this problem.

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I'm a young mother with two autistic daughters, one 8 years old, the other one 7. My 7 year old is more severe than her sister, with her lack of potty training being a major issue. With so many problems to deal with, including my own health problems, my husband and I have been very quick to blame her bowel issues on her autistic behavior or the lack of variety in her diet, but I just know that it's something serious. For one thing, she has had this weird soft diarrhea everyday of her life for four years. It's not as liquid as with food poisoning, but it's very very soft and unformed. It's seems impossible for her to evacuate all of it out, and there's always some there left that makes diapers a necessity. The reason we've blamed her autism is because she hates going potty and will hold it in as long as possible, and refuses to go number two in the toilet. She has no problem peeing in the toilet, but she will kick and scream if you try to put her on the toilet while she's going number two. So we thought her holding it was somehow causing the texture to be how it is, but we can't ignore the fact that it's something else causing it. It's too soft, too runny, for too long and she has too little control for it to be purely behavioral. She has many other unexplained problems as well--one being her teeth seemed to be rotting away for no reason. Her teeth just keep flaking and breaking off and turning brown, and we've had to get root canals on her front teeth to stop the pain it was causing. The dentist accused us of not brushing her teeth, of feeding her nothing but junk food, and what not, but that's not true. So why is this happening?? Another thing is she is so weak and small, that people always think she's atleast two years younger than she is. She's pale, is always tired--in fact she carries around a security pillow because she always needs to lay down every so often, even at the store or playground. The most disturbing symptom by far is her periodical stomach 'attacks'. Every few months, she has violent bouts of vomiting and pain in her stomach, so bad she screams in pain and vomits every ten to fifteen minutes. The muscles in her hands and feet lock up like the blood has been cut off, like when a limb gets pins and needles from falling asleep, except violently, causing her hands to take on a claw shape and they are stuck that way for twenty minutes at a time, then they relax. Then an hour later, they lock up again. This goes on for about 24 hours, and then the symptoms calm down and she vomits every few hours for another day or so, and then she's back to normal. We think it's related to something she is eating, with pizza from certain restaurants and hot dogs being on top of our enemies list, but then sometimes we don't know what it could be that's upset her stomach so badly. All of this is a lot to consider, but does this sound anything like celiac disease? She eats so much gluten in her diet, with ramen noodles being her favorite food. We eat a lot of fast food as well like chicken nuggets and french fries, and I'm sure many other gluten laced foods. If anyone has a child with similar problems I would really appreciate any information or advice anyone can give me.

Thanks so much!

Darlene

darlenevile@gmail.com

Hi Darlene,

A friend of ours has son who is autistic, and they have been having wonderful success with a variant of the SCD called the GAPS (Gut And Psychology Syndrome) which comes from a center in England where they are studying the linkage between intestinal flora and the psychological anxiety disorder spectrum, including autism, certain forms of depression and schizophrenia, ADD/ADHD, and others. You might want to take a look at it. Their website is http://www.gapsdiet.com. I am not affiliated in any way, I just know what it has done for our friend's son, and two other families we know whose children who have gone through it.

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Darlene, my son was diagnosed with autism at age 3.

He has since lost the diagnosis, and going off gluten was one of the best things we ever did for him.

THERE IS HOPE.

Here are some websites that helped us enormously, and might give you some help:

www.putchildrenfirst.org

www.ageofautism.com

www.generationrescue.org

Best of luck to you and your daughters, and please keep us posted!

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I agree with everyone else, you should definitely have her tested for Celiac. We did the blood test and endoscopy and I am glad I did as they have been following her blood levels to monitor her gluten free diet.

My daughter had the stomach pains and vomiting prior to going gluten free. She would have hours of sharp stomach pains and then vomit several times and then seem as if everything was completely fine. We have been gluten free since January of this year and had an episode where she was glutened last week which followed with severe pains and vomiting again. Also, prior to being gluten free she had problems with seizures, has been seizure free now for 4 1/2 months without meds. (Prior to that she was seizure free for 1 1/2 yrs on meds) She also had the yellowing teeth and fatigue. She needed at least 12 hours sleep a night and if she lost sleep from a late night out (and I mean only slightly late) it took her several days to a week to recover.

I have been amazed how much she has improved over the past 9 1/2 months. It just seems to keep getting better.

I really hope the gluten free diet can help you and your daughters!

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