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#16 smithy4

 
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Posted 25 February 2007 - 04:35 PM

My older daughter has gluten intolerance and an auto-immune (probably colitis, not celiac). The gluten causes temper tantrums and hyperactivity. If you'd known her before being gluten-free you'd think she had autism. She also gets exema and the look of a sunburn on her face. Since being gluten, casein, egg, and other foods-free all of these symptoms have disappeared. When she gets something in her system she is sensitive to her face turns red within minutes. We've used this as a quick indicator.

My younger daughter has some of the digestive problems, but really responds with hyperactivity. We tried to put some gluten back into her diet, wondering if she'd outgrown it, but she reacted with extreme hyperactivity. Imagine having a four-year-old who, literally, can't stop moving. After about a week, we pulled out all the gluten indefinately. Within a couple of days, she was focused and calm.

Neither girl has all of the screening markers for celiac. But when they've been tested, they had already been on a gluten-free diet, so the results are not valid. I'm not willing to put them through a gluten diet just to tell me to remove the gluten, since I know the removal works. My older daughter did have an endoscope put through her from stem to stern, and they did find damage in the lower intestine, but not the upper. That's why she has a different auto-immune diagnosis than celiac. I was told it will be a few years before a valid test can tell us exactly which auto-immune she has. In the meantime, she takes medication (Pentasa) and we control her diet. Otherwise, she doesn't gain height nor weight.


Hello, I'm new to the forum, but my goodness your daughter reacts in the same way as my eldest daughter does! The sunburn type rash which is immediate, extreme behaviour changes. We lose our daughter for weeks if she eats gluten. I mean she no longer makes eye contact, reacts to everything, she hand flaps; is unable to sleep, is often in terrible pain comes out in a rash all over. We have often wondered if B is autistic however if you remove gluten, dairy and soya all the symptoms disappear. I would also be interested, too, if others have the same experience of gluten. There is very little written about celiac disease and autism, does anyone have children with both?
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#17 kookaburra

 
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Posted 29 March 2007 - 02:08 PM

Well, It was thought that I may have Aspergers Syndrome in my early teens, and(connected?) I definitely had bad social anxiety. Went off the Gluten at 19, and 3 years later I'm a different person. The difference has been amazing. I'm out there doing customer service, great reputation for being good with customers, just, you know, living my life in ways that wouldn't have been likely a few years ago.

I'd actually be interested in hearing if anyone else who either has Aspergers or has been thought to have it has had an almost complete disappearance of Asperger symptoms by going Gluten-Free?


My 4yo son on gluten responds as if he has Aspergers while on gluten. He does not respond when spoken to, has a high level of anxiety, misinterprets social cues, and has extreme sensory issues (screams when he takes a shower, when you brush his teeth, etc. Wears a hat, gloves, and footy pajamas in order to be completely covered ). He also loses his skills. Off gluten, he is very very smart, scarily so. I'm still trying to wrap my brain around this. He has (obvious) gastro symptoms on gluten, too, but is not DQ2 or 8 positive (he is a double DQ1). I'd love to hear more about your situation.... I've been told by a doctor who thinks outside the box that in has case it is a leaky gut problem, too. That he can't just stop eating gluten, that we need to address the bacterial overgrowth in his gut, a persistent yeast problem, and food allergies. But the Asperger type symptoms disappear simply when he goes off gluten. Like night and day.
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#18 kookaburra

 
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Posted 29 March 2007 - 02:08 PM

Well, It was thought that I may have Aspergers Syndrome in my early teens, and(connected?) I definitely had bad social anxiety. Went off the Gluten at 19, and 3 years later I'm a different person. The difference has been amazing. I'm out there doing customer service, great reputation for being good with customers, just, you know, living my life in ways that wouldn't have been likely a few years ago.

I'd actually be interested in hearing if anyone else who either has Aspergers or has been thought to have it has had an almost complete disappearance of Asperger symptoms by going Gluten-Free?


My 4yo son on gluten responds as if he has Aspergers while on gluten. He does not respond when spoken to, has a high level of anxiety, misinterprets social cues, and has extreme sensory issues (screams when he takes a shower, when you brush his teeth, etc. Wears a hat, gloves, and footy pajamas in order to be completely covered ). He also loses his skills. Off gluten, he is very very smart, scarily so. I'm still trying to wrap my brain around this. He has (obvious) gastro symptoms on gluten, too, but is not DQ2 or 8 positive (he is a double DQ1). I'd love to hear more about your situation.... I've been told by a doctor who thinks outside the box that in has case it is a leaky gut problem, too. That he can't just stop eating gluten, that we need to address the bacterial overgrowth in his gut, a persistent yeast problem, and food allergies. But the Asperger type symptoms disappear simply when he goes off gluten. Like night and day.
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#19 sarah ruth

 
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Posted 30 March 2007 - 03:10 PM

oh ladies! our poor kids :( . My little guy is a nutter when he eats gluten too (I just asked this same question last week in the kids forum - I hadn't seen this forum yet). SCREAMING at me, painting all in black, unable to focus on simple tasks but a rain-man like ability to recite anything he has seen in a nature movie, collapsing into tears, getting stressed and flapping his hands, black circles under his eyes. I feel so lucky to read everyone elses posts and begin seeing a pattern in all this.
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#20 wolfie

 
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Posted 30 March 2007 - 03:30 PM

This was an issue with our son as well. He was being evaluated for ADHD, he was irritable and had some vague stomach issues...constipation and occasional non-specific tummy aches. Asked his Ped to test him and his blood work was really high and his biopsy was positive. He is a different person now that he is gluten-free. He is so much more pleasant to be around and you can tell that he feels better, even though he never really said that he felt horrible. He did tell me a few days after going on the diet that he didn't have the cramp in his stomach anymore. He had never even mentioned that to me before....apparently he thought that was how he was supposed to feel!
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Kim

"Life isn't about how to survive the storm
but how to dance in the rain."


Positive bloodwork 1/9/06
gluten-free since 1/12/06
Very positive dietary response


DS (12 years old)
Biopsy 7/7/06 ~ Diagnosed Celiac 7/12/2006
gluten-free since 7/15/2006

DD (almost 6)
HLA-DQ2 positive
Celiac Bloodwork negative 2 different times
Still eating gluten for now.

#21 Guest_AlabamaGirl_*

 
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Posted 05 April 2007 - 12:52 PM

My 8 year old becomes very angry, mean and aggressive, my 5 year old starts crying over everything and loses control easily. Does anyone else have children where gluten causes behavior issues.


Kelly, you just described my children! They both get really "weepy" when they eat gluten -- sensitive and out of control. In fact, the day after I accidentally consume gluten, I have to be on my guard because I tend to get angry really easily. How can it not be related???
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#22 smithy4

 
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Posted 11 April 2007 - 02:00 PM

Hi there

I 'm needing some help. My daughter is still experiencing behavioural problems even when off Gluten, Dairy and soya. Mostly problems communicating her emotions and not able to stop her self going off like a bomb many times a day. She has one form of speech thats shouting!! She is unable to understand the other persons perspective.

The diet has done wonders and it is much more manageable completely GI problem free. Is this prephaps as good as it gets? Does anyone else experience behavioural problems even on diet. She has terrible trouble sleeping and I am wondering if this is the root of the behavioural problems now. We have been gluten free for 4yrs 100% different cooking utensils,pans plates toaster.
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#23 annie76

 
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Posted 15 April 2007 - 09:09 AM

I'm not really new here, (FKA jules). Anyhow, my oldest son (9) has had behavioral problems since kindergarden. The schools have tested him, for a wide variety of things including asbergers (sp?) They can't come up with anything, so now I have him back to a therapist. His behavioral problems mimic deppression, they swing from negative lazy attitude, to sometimes ranting on and on about nothing for an hour. He's never been an angry child, he just gets upset and moody for no reason at all! Theres so much more I could go on and on...My question is how do I get our family doctor to test him? He didn't respond with great knowledge when I was sick for 2 years, so I am determined not to let him call the shots here. If I let that happen he will have my son in there 5-10 times for all different reasons as we all know. I guess I just need some suggestions on how to bring this up when I take him in....Also if he does test posative, fair warning I'm going to be on here ALOT my son loves his food... :rolleyes:
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#24 redharmony

 
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Posted 15 May 2007 - 12:18 AM

Last January (following the holiday season when I "cheated" big time), my husband (of 17 years) said to me "Ok, I can't take this anymore. We can either go to counselling for your anger and outbursts or I am going to have to divorce you". So, I said to him "Yes, I understand. Do me a favor....give me 10 days of not eating wheat (or dairy or sugar) and if at the end of this time things are still bad, we will go to counselling."

I marked it on my calendar and on the 10th day asked him if things were better. He stood there absolutely stunned and said "Oh my God, you are like a completely different person. I don't even recognize you. It's almost scary how this affects you".

I am forever patient with my children and NEVER lose my temper or become depressed or emotional when I am off wheat. I am 40 and I want to cry when I think of how horrible my childhood was and life in my home with my family growing up, all because I was living on wheat. My family is Italian so bread and pasta were a staple in our home. My parents even commented that they don't recognize me off wheat either.

I have two children and I am sure it is affecting both of them. My daughter has HUGE bowel / constipation problems and is very thin. My son is a "rager" with anger that goes beyond anything I have ever seen. I KNOW it is his food. UNFORTUNATELY, even though my husband completely acknowledges the difference in me when I am not eating wheat and sugar, he REFUSES to acknowledge that the kids could have this, or that it could be causing their particular problems, and accuses me of trying to "starve" them by trying to take the gluten out of their diets. He is constantly undermining my efforts by giving them half a loaf of bread or bowls of cereal the minute I turn around or leave the house! He insists that "Bread is the staff of life" and won't even read an article about celiac's on their behalf. He says I'm just trying to "find" things wrong. It's crazy.

I want to have them tested to prove it to him, but FRANKLY, I am terrified because of our horrible insurance/medical system here in the US. I don't want anything to be on their records that could be used against them someday, or used to exclude them from insurance for anything that they might deem "related" to this, so I want to just do the diet thing and see if it works but husband is not going to believe me until he sees a test. Making me nuts.
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#25 cyberprof

 
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Posted 22 May 2007 - 07:13 PM

Redharmony,

The answer to the above is Enterolab testing. It is cheaper than paying for tests via your doctor AND it has the added benefit of not appearing on your kids' medical records. It should also satisfy your husband because they are true medical tests.

Going gluten free as a test might show your husband, but Enterolab results can't be ignored.

I am Italian also and know the strong pull of pasta, bread and pizza.

Good luck!


I want to have them tested to prove it to him, but FRANKLY, I am terrified because of our horrible insurance/medical system here in the US. I don't want anything to be on their records that could be used against them someday, or used to exclude them from insurance for anything that they might deem "related" to this, so I want to just do the diet thing and see if it works but husband is not going to believe me until he sees a test. Making me nuts.


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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#26 jetiduncan

 
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Posted 08 March 2009 - 09:59 AM

I certainly feel for everybody with a child with behavioral outbursts relating to Gluten Exposure.

Keep in mind also that it's not just from the gluten. Many of our children with Celiac Disease have major nutritional deficiencies that we need to find and fix. My 7 year old is very aggressive when gluten is involved and he has become somewhat aggressive w/out it too. We figured out that he had elevated histamines which can also cause aggressive behavior.

When we did his IgG this past August it was OVER 100. It is now down to 7!!!!! That is awesome and we are still working through other nutritional deficiencies. It is almost impossible in our neck of the woods to find a truly experienced pediatrician in the area of celiac disease. Our last one just decided that putting our child on an ADHD drug was the answer IT was FAR from the answer. IT was terrible and we reverted back to going with natural remedies.

We have really been striving to get him back to being non-aggressive through diet and supplements and we are seeing some good results. Just wish the school could see that having a gluten free environment would be a good thing all around. Instead, our child sits in a class with gluten all around him. So, he's bound to have some issues that come up and while I want to be supportive of his educators, they sure need a lesson in support of celiac disease kids.
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#27 Ms Jan

 
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Posted 09 March 2009 - 03:01 PM

Really feel with all of you struggling with food intolerant kids. I just have a niece with behavioral symptoms, but it's heart breaking to watch. Coming from a family ripe with schizofrenia and the like - and having struggled with my own share of problems before self diagnosing - I've become convinced about the connection between celiac/food intolerances and 'brain' symptoms.

Here're some interesting links:

Giving some scientific bacground -
http://www.drkaslow....onnection_.html

For those for whom the gluten free diet isn't enough, Elaine Gottschall's 'Breaking the Vicious Cycle' on the Specific Carbohydrate Diet (SCD), developed ia, for autistic kids, might be useful -
http://www.breakingt...iouscycle.info/

And pecanbread is the site for the SCD particularly aimed at parents with autistic children (but can be helpful I believe for all 'food problem' children) -
http://www.pecanbrea...w/aboutscd.html

In any case, it seems food sensitive kids are very often highly sensitive to most if not all carb's, to sugar as well as additives, so if you haven't already done so, it might be worth checking some of those items, maybe through an elimination diet.

We have a thread on the SCD going in the 'Other Food Intolerances, Leaky Gut etc' Forum. It's more aimed for adults, but some of you might find it useful, as it seems to be helping a lot of us celiac sufferers for whom going gluten free just isn't enough.

Hope you all find a workable path.
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QUESTION EVERYTHING (also the experts).
DON'T FOLLOW ANY ADVICE BEFORE YOU KNOW IT'S SUITABLE FOR YOU.
45 yrs; A life time of health problems, incl. arthritis and psoreasis; five years of debilitating 'poisoning' symptoms of headaches/vomiting.
Diagnosed Leaky Gut 2005.
Gluten free since nov 2008.
SCD diet/excl. all sugar&dairy since jan 2009. Finally improving!

#28 ligeia

 
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Posted 10 April 2009 - 08:08 AM

Behavioral problems are one of my daughter's only symptoms. When she eats gluten she gets SO moody, irritable, and doesn't seem to be able to control her emotions/reactions very well at all. I picked up on it immediately because I feel the same way when I get glutened.
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#29 2GirlsMom

 
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Posted 16 October 2009 - 09:39 AM

Yeah, I hear ya! My daughter had BIPOLAR type of symptoms that actually went away imediately after stopping gluten. I was trying to help her behavior at daycare by providing my own snacks for her without any artificial colors, etc but I was loading her up with whole grain bars... uggg... lots of gluten. Then she's got removed from daycare due to her behavior. Going Gluten-Free changed her behavior within the first week.

I've even been able to STOP my Effexor and I was on 230 mg since getting off of gluten. I just did it because it was easier to eat what she eats.

Here's my and my daughter's story. So many people asked that I just put it on a webpage. It truly has been a complete life change (for the better).....

www.Natural-Remedies-And-Recipes.com/gluten-intolerance.html

Hopefully our story can inspire others!
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Mom of Hannah 6, no food dyes or HFCS
Mom of Emily 3, Gluten-Free- Non-Celiac, All Behavioral Issues
My Website: Http://www.natural-remedies-and-recipes.com (Emily's Gluten-Free Story Found Here)

#30 taweavmo3

 
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Posted 16 October 2009 - 02:11 PM

Don't have time to read all of the responses, so I'm probably repeating what everyone else said!

In a nutshell....my 5 year old's primary symptom is behavior. He had something a couple of weeks ago with gluten, and he was AWFUL. He became hateful, he was biting, hitting, screaming, name calling (bad names, saying terrible things). He honestly becomes like a psychotic child, which feels awful to say, but he does.

A week later, he is back to his angelic self. Saying "yes maam", being helpful, sharing, playing like normal.

It is honestly scary how mean he gets on gluten and milk, and I'm so thankful I knew to take those foods out of his diet, otherwise he probably would have ended up on some psych meds down the road. Trust your instinct......you aren't seeing things!
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Tamara, mom to 4 gluten & casein free kiddos!

Age 11 - Psoriasis
Age 8- dx'd Celiac March 2005
Age 6- gluten-free/cf, allergy related seizures
Age 4 - reflux, resolved with gluten-free/cf




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