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Told My Baby May Be Autistic, Could It Be Celiac


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9 replies to this topic

#1 jbranham001

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Posted 15 April 2011 - 07:45 AM

I just found this page and am so grateful. I am hoping other parents may be able to give advice on this. Here is a description of what has happened. My daughter now 21 months was born at 36 weeks gestation. She never had any problems other than not being able to maintain her body temp. I have always ever since birth had feeding problems with her. I just thought it was just her. Not being able to latch to the breast or bottle. I however was not able to breastfeed due to fibrocystic breast but I gave it my best shot. She was then put on formula NEOSURE for low birth weight infants. She was 5 lb 4 oz at birth. She came home at 4 lb 11 oz and just has never been able to gain much. She would gain, then lose or just stay the same. She was the typical newborn for the first 4 to 6 weeks. Other than she just could not poop. I started giving her Karo Syrup since the doc was no help at all. The child was about 3 weeks old before I was able to get her to poop at all. She had some spitting up smelled like acid. But nothing major like alot of acid reflux babies. At 6 weeks old all HELL broke loose. She started screaming and just would not stop. The doc said she has colic. The only thing was. There was no routine to her screaming. She screamed constantly until she would wear herself out and crash. But she was never asleep for long. She would wake up screaming again in maybe 30 minutes to an hour. The doc put her in the hospital and did a upper GI. Why I do not know. That wasn't the prob. I told him she needed a lower GI. He switched her Alimentum formula and gave her all sorts of meds for acid reflux which I never filled cause that was not the problem. She did this from 6 weeks old to around 7 months. At 7 months still a very fussy baby, still not sleeping well but more. She is put on a laxative. It helped but still every aspect is not resolved. She is now 21 months and she either has

massive amounts of diareaha or can't poop over the winter I would have 4 to 5 weeks of water poop(yellow) super foul.
Very fussy child still
Very clingy
Very hyperactive
Has always had the shuddering(shaking like she has a chill) not all the time but some
Cannot speak well (delayed speech and the doc says she may be autistic because she also squeals alot
Still very tiny (21 months old 20 pounds, 33 inches long and still in 12 month clothes if they even ft her.
Distended belly most of the time especially after eating. She is a very picky eater and loves the carbs.
She keeps a yeast type rash constantly. When her tummy is upset it changes to a bleeding rash that I can never get healed.


Please help if any others have dealt with this issue. If she is celiac or has a gluten intolerance it really would explain alot. The autism just doesn't make since. She has no other symptoms of that at all.
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#2 GlutenFreeManna

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Posted 15 April 2011 - 09:34 AM

I'm not a parent but it sounds like it could be celiac or it could be another food allergy such as dairy. Has she had blood tests for celiac or other food allergies? Regardless, her situation sounds very dire and I'm surprised she has not spent more time in the hospital than what your describe. You need to take her to a dr ASAP and ask for testing. Write down all the problems she has had since birth and be sure to tell the dr everythign you told us here. If they refuse to test or refuse to refer you to a specialist, try another dr and keep tryign drs until you find one knowledgable. None of those symptoms sounds similar to autism at all--they are symptoms of a very sick child.

I'm sorry you are having such a rough time...If you go the doctors board here and make post asking for Celiac knowledgable drs in your area you might have better luck finding one that will do testing.
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#3 jbranham001

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Posted 15 April 2011 - 10:19 AM

I did fail to mention. I have requested a lower GI be several times and was denied by the doc. Also requested dairy allergy testing also denied. The doc did however do that one upper GI which is in no way related to her lower end. I decided to try gluten free as of yesterday. I know this could just be me wanting a change. But her attitude/demeanor has vastly improved even since just yesterday. She is always very fussy. We never have good days with her. All days are a challenge with her. I just am thankful at the end of the day to have gotten through it. But since yesterday when I started the change. She seems happy. She was a little fussy somewhat yesterday at the beginning. However today she has been all smiles. She has also finally pooped since yesterday. Before that she's been constipated for a week. She goes back and forth between loose stools and constipation. She pooped today and it was strange. 1/2 acidic loose stool and 1/2 patty type poop. Loose was yellow and patty was brown. I know gross but never seen anything in a diaper quite like that. I am just so frustrated and I know. My child is not autistic. In pain yes, probably, maybe. But not autistic. Thanks for the reply. All help, suggestion, whatever is greatly appreciated.
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#4 Cara in Boston

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Posted 15 April 2011 - 12:47 PM

I feel like autism is related to gluten somehow. Many parents of autistic children find that keeping them gluten free helps tremendously.

My son (6) was just diagnosed with celiac. He has been screened for autism three times (toddler, preschool, Kindergarten) because he was showing some early signs of it and he has a cousin with Aspergers. He was delayed in speech (went to Early Intervention at age 2) and had a tendency to not make eye contact, not have spontaneous conversations, etc. etc. He is also very, very bright with a fantastic memory. He also flaps his arms and hands when he gets excited or frustrated.

He was never diagnosed because he is also very social and had plenty of behaviors that are not typical of an autistic child. I always wondered about him but he was doing fine in Kindergarten - top of his class actually.

Anyway, he was recently diagnosed with celiac and now that he is gluten free he is happier, has more energy, and we haven't been seeing any of the behaviors that used to concern us. Maybe it is a coincidence, maybe not.

Ask you doctor to do the blood tests. It certainly can't hurt. Once the testing is over, then go gluten free. Do not change your child's diet before the testing is complete.

Cara
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#5 mamabickler

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Posted 15 April 2011 - 02:18 PM

when did the shuddering start? my son started with those at 7 months and was diagnosed with "infantile shuddering" basically bc the neuro didn't have a good answer. he's also gained weight poorly since then.



I just found this page and am so grateful. I am hoping other parents may be able to give advice on this. Here is a description of what has happened. My daughter now 21 months was born at 36 weeks gestation. She never had any problems other than not being able to maintain her body temp. I have always ever since birth had feeding problems with her. I just thought it was just her. Not being able to latch to the breast or bottle. I however was not able to breastfeed due to fibrocystic breast but I gave it my best shot. She was then put on formula NEOSURE for low birth weight infants. She was 5 lb 4 oz at birth. She came home at 4 lb 11 oz and just has never been able to gain much. She would gain, then lose or just stay the same. She was the typical newborn for the first 4 to 6 weeks. Other than she just could not poop. I started giving her Karo Syrup since the doc was no help at all. The child was about 3 weeks old before I was able to get her to poop at all. She had some spitting up smelled like acid. But nothing major like alot of acid reflux babies. At 6 weeks old all HELL broke loose. She started screaming and just would not stop. The doc said she has colic. The only thing was. There was no routine to her screaming. She screamed constantly until she would wear herself out and crash. But she was never asleep for long. She would wake up screaming again in maybe 30 minutes to an hour. The doc put her in the hospital and did a upper GI. Why I do not know. That wasn't the prob. I told him she needed a lower GI. He switched her Alimentum formula and gave her all sorts of meds for acid reflux which I never filled cause that was not the problem. She did this from 6 weeks old to around 7 months. At 7 months still a very fussy baby, still not sleeping well but more. She is put on a laxative. It helped but still every aspect is not resolved. She is now 21 months and she either has

massive amounts of diareaha or can't poop over the winter I would have 4 to 5 weeks of water poop(yellow) super foul.
Very fussy child still
Very clingy
Very hyperactive
Has always had the shuddering(shaking like she has a chill) not all the time but some
Cannot speak well (delayed speech and the doc says she may be autistic because she also squeals alot
Still very tiny (21 months old 20 pounds, 33 inches long and still in 12 month clothes if they even ft her.
Distended belly most of the time especially after eating. She is a very picky eater and loves the carbs.
She keeps a yeast type rash constantly. When her tummy is upset it changes to a bleeding rash that I can never get healed.


Please help if any others have dealt with this issue. If she is celiac or has a gluten intolerance it really would explain alot. The autism just doesn't make since. She has no other symptoms of that at all.


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#6 Kelleybean

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Posted 15 April 2011 - 04:43 PM

My son was diagnosed with autism at 18 months. Stomach issues are VERY common with autistics - it is theorized that these stomach problems can aggravate autistic symptoms. Many parents have tried a gluten free/casein free diet with their autistic children and had incredible results. The problem is that a blood allergy test may not reveal a sensitivity to gluten or casein, so the only way to know is to try the diet. You mentioned yeast - yeast buildups are also very common for autistic children (not sure about celiac - someone else here might know more about that).

Keep in mind that there is a HUGE range of autism and it can present in so many different ways. We didn't think that my son had autism at first b/c he could make eye contact, liked to be held, etc. So I think the answer is that it could be celiac, but could also be autism. Please know I'm not AT ALL saying your child is autistic, I just don't want you to rule it out b/c obviously if she has autism you want to know. I would look at both, if nothing else for your peace of mind. You could also try going gluten free (and even casein free) and see if it makes a difference.
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#7 MacieMay

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Posted 15 April 2011 - 05:59 PM

My toddler has a Non-Celiac Gluten Intolerance. She had a lot of the same symptoms your describing, she had those terrible diaper rashes, no solid BM's, she would cry in her sleep and wake up in the middle of the night. She was growing OK so it was hard to get the Dr's to believe there was something wrong with her. She has been off all gluten and dairy since she was 18 months, she is 2 now. She is doing soooooo much better. Try the diet and see if it helps, and I would consider eliminating dairy if you don't see immediate results with the BM's and the tummy troubles. WE found that my daughter was lactose intolerant secondary to her gluten intolerance.
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#8 jbranham001

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Posted 15 April 2011 - 06:42 PM

The shuddering started around I would say 6 months or so. It may have been a little bit later. It was like she would get a chill or she was cold or something. Even though it may be 110 degrees(we live in the south). The shuddering has subsided quite a bit and rarely happens anymore. The only autistic type things she has is delayed speech, she squeals (but it is only to get what she wants), now I guess possibly her tummy issues. The doc did give me the in office evaluation sheet. They said the answers looked good. They are now referring us to an in home therapist that will come to our house and work with her. They and I as well are hoping it is just delayed speech. Once the therapist evaluates her. They said the therapist may then suggest the doc order more testing. She has always had very good eye contact as well, she points at objects to show me. Or if I am trying to show her something, she will point at it. She plays well with others she knows and does not know. She is fine with other adults that may watch her for bit. Even if she is not familiar with them. She plays with toys the way they are intended. She does not have repetitive things that she does. She also loves to shop and gets very excited. She does great in restaurants and public places. She is just your all around active 21 month old. Except for these issues at hand. Which we have always dealt with. I just hope to find some sort of answer soon of "what" it is. I think the not knowing may be the worst. But my heart just breaks.
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#9 mommida

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Posted 17 April 2011 - 06:31 AM

I feel like autism is related to gluten somehow. Many parents of autistic children find that keeping them gluten free helps tremendously.

My son (6) was just diagnosed with celiac. He has been screened for autism three times (toddler, preschool, Kindergarten) because he was showing some early signs of it and he has a cousin with Aspergers. He was delayed in speech (went to Early Intervention at age 2) and had a tendency to not make eye contact, not have spontaneous conversations, etc. etc. He is also very, very bright with a fantastic memory. He also flaps his arms and hands when he gets excited or frustrated.

He was never diagnosed because he is also very social and had plenty of behaviors that are not typical of an autistic child. I always wondered about him but he was doing fine in Kindergarten - top of his class actually.

Anyway, he was recently diagnosed with celiac and now that he is gluten free he is happier, has more energy, and we haven't been seeing any of the behaviors that used to concern us. Maybe it is a coincidence, maybe not.

Ask you doctor to do the blood tests. It certainly can't hurt. Once the testing is over, then go gluten free. Do not change your child's diet before the testing is complete.

Cara

Like Cara said Do NOT CHANGE THE DIET UNTIL TESTING IS DONE.

New research is delving into cholesterol. Specifically adding more into the diet. Cholesterol is needed for synapses of brain cells. I'm thinking the links between the GI /allergens issues associated with Autism and poor absorbtion of nutrients.
If I remember correctly the formula the doctor told you to switch to is hypoallergenic. What was his explaination? That says to me there was evidence of food sensitivity/damage.
In my opinion, you are correct for wanting a lower GI too.
You need to be working with a pediatric gastroenterologist. I assume your child was diagnosed with the Autism by a nuerologist? That should have been an instant refferal to an allergist/immunologist.
Keep a complete food journal. Time, date, amount, reaction, and mood check for foods ingested, (at this age don't forget playing with playdough and toothbrushing) BM's, and activities, and sleep.
Reaction times can vary drastically. i.e. 15 minutes for an anaphalytic to 12 days for activated Eosinophils.
So this journaling is very important. I don't know how any human would be able to remember back almost 2 weeks to connect to a food "trigger" without using a journal.
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#10 KFH

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Posted 17 April 2011 - 07:17 AM

Find a new Dr. now! Look for a Developmental Pediatrician. IF(and you may or may not be dealing with the challenges of Autism)your child is Autistic this will help tremendously. But if you are just dealing with Developmental Delays than you will appreciate the support by this DR.
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