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healthygirl

Celiac And Attention Deficit Disorder

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Hi all,

I am in the process of being formally diagnosed for celiac (one weak positive blood test, one negative blood test) and am awaiting an appointment with a gastroenterologist. My son, who is now 12, was diagnosed with ADHD 3 years ago (shows more inattentiveness than hyperactivity). He is unable to stay on task at school and is very forgetful.

I am wondering if anyone has noticed ADHD symptoms improve on a gluten free diet. He does not show the common symptoms for celiac or gluten intolerance (ie: diarrhea, etc.) but for many years was way behind in growth charts (he is now in the 50th percentile for height, but that has only come in the last 2 years....for the first 5 years or so of his life he was at about the 10th percentile.) He is a very picky eater and lives on gluten based products (he loves his bread, pasta, cereal) and I am considering putting him on a gluten free diet for 2 - 4 weeks just to see what happens with his ADHD symptoms. My other option is to have his blood test done right away and see, but with so many false negatives (and from what I hear higher chance of false negatives in kids) I'm tempted to just trial the gluten free diet with him.

Anyone with a similiar situation??


HLA-DQ 1,1 (5,6)

Gluten free - March 08

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He is a very picky eater and lives on gluten based products (he loves his bread, pasta, cereal) and I am considering putting him on a gluten free diet for 2 - 4 weeks just to see what happens with his ADHD symptoms.

I have been told the foods you desire/crave the most are the ones most likely to be causing your problems. Your body craves the "bad" food like a body will crave a "bad" drug.

What I have seen with ADHD or AS kids it that they hit a "detox" mode around 2-4 weeks so they are actually worse for a period of time. Some inattentive kids also react strongly to smells such as scented Tide, downey, plug ins and like items. There are days when it feels like my oldest AS boy can pick up on these a mile away.


Shellfish free since 1980

Milk free (all forms) since 1991

Feingold in 2003

First gluten-free round 2007

Now entering full time Gluten free, egg free, almond/peanut free

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I would try the diet but give it a good 3 months before you give up. The neuro symptoms do seem to take a bit of time to resolve. It may help a bit to give him a good gluten free B12 sublingual, that will help the nerve function in the brain repair a bit sooner. I have a feeling you will find yourself dealing with a totally different kid after a month or two. You have nothing to lose so give the diet a shot.

In my family gluten had some severe effects even though both my children are well above 'average' intelligence. My DD remarked a few months into the diet how much easier it was for her to read and absorb what she had read. I myself lost the ability to retain information a few years before I was finally diagnosed. I couldn't concentrate on anything long enough to even make it through one page of a novel, I found myself reading and rereading sentences and still not able to remember characters or names. I had been a life long reader and not even being able to read a short story was very hard. I also had been a published writer and my children have a hard time understanding why I don't write any longer. When celiac hit me at about age 7 I went from being a straight A student to getting C's and D's. No one understood and it made life very difficult for me as they thought I had gotten 'lazy', they couldn't understand why the grades and my IQ tests showed such a discrepency. We didn't find out why for almost 40 years. Because I went so long and had so much damage I still have some issues with memory and words. With my children this turned around completely really quickly.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I myself lost the ability to retain information a few years before I was finally diagnosed. I couldn't concentrate on anything long enough to even make it through one page of a novel, I found myself reading and rereading sentences and still not able to remember characters or names. I had been a life long reader and not even being able to read a short story was very hard.

This describes me as well.


Me: GLUTEN-FREE 7/06, multiple food allergies, T2 DIABETES DX 8/08, LADA-Latent Autoimmune Diabetes in Adults, Who knew food allergies could trigger an autoimmune attack on the pancreas?! 1/11 Re-DX T1 DM, pos. DQ2 Celiac gene test 9/11

Son: ADHD '06,

neg. CELIAC PANEL 5/07

ALLERGY: "positive" blood and skin tests to wheat, which triggers his eczema '08

ENTEROLAB testing: elevated Fecal Anti-tissue Transglutaminase IgA Dec. '08

Gluten-free-Feb. '09

other food allergies

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Raven, i found your response fascinating . . .i'm so hoping that my blood tests come up positive! I always tested high and performed poorly, had poor concentration and terrible memory. I think i've posted about all my family's problems, but I'm esp hoping to be able to help my middle child, who's 11 and has been on antidepressants and antipsychotics for 2 years, w dx's of adhd, senosry integration, aspergers and bipolar - if he could come back down off some of those meds and lose some of that weight (1-2 lb per month . . ), or perhaps even get out of specail ed and back in to gifted classes where he belongs . .. if only he could handle them . . . sigh.


Cara - 42, mom to dd 15, ds 12, ds 4

Off gluten and dairy (and tapioca ;-( ) since 11/07

A.L.C.A.T. test showed over 50 sensitive foods

Celiac panel came back negative.

Regular allergy testing reacted to every inhalant and all but 6 foods.

Slowly adding in foods, started w 19 and now have 25

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I have two kids with ADHD diagnoses (the inattentive type), and these 2 are also gluten intolerant. My son only gets neurological symptoms from gluten, and his ADHD symptoms have definitely improved, though they are still there to a lesser extent. His handwriting improved amazingly. He also has diagnoses of dyspraxia (uncoordination), sensory integration problems, and executive function disorder (disorganized). He went gluten-free right around the time of all the testing, and when I signed him up for therapy for the dyspraxia, by the time he started therapy, they said to me, "why are you here? He is okay!" He improved that much on the diet! His teacher has also raved about the changes, though she refuses to think it's dietary. She thinks it's just her super-awesome teaching ability! Whatever!

The one thing that has not improved at all is his organizational skills. They are still very poor. His sister has the ADHD-I diagnosis too, and has not improved on the diet as far as that is concerned. Her stomach pains and rashes are better, but not her attention span. So it doesn't help every kid with ADD.

I discussed all this with their doctor, and he says it's not unusual for ADHD kids to have trouble with wheat and dairy products. He says they can really exacerbate the symptoms, though they don't all go away with the diet. There's more to it than that. But the diet can help minimize the symptoms.

I think anyone with an ADHD diagnosis should definitely try the diet. If it doesn't help, you can always go back. You might be pleasantly surprised! It can't hurt to just try it! I'm glad we did.

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Raven, i found your response fascinating . . .i'm so hoping that my blood tests come up positive! I always tested high and performed poorly, had poor concentration and terrible memory. I think i've posted about all my family's problems, but I'm esp hoping to be able to help my middle child, who's 11 and has been on antidepressants and antipsychotics for 2 years, w dx's of adhd, senosry integration, aspergers and bipolar - if he could come back down off some of those meds and lose some of that weight (1-2 lb per month . . ), or perhaps even get out of specail ed and back in to gifted classes where he belongs . .. if only he could handle them . . . sigh.

Do NOT trust those blood tests. Do a gluten free trial for all of you for at least 3 months. If you read my signature you will see why I think this is so important.

I have two children who are gifted. They both struggled a great deal but my DS the most. He has a lot of Aspergers features and his IQ when tested by a child psychologist at about 9 was basically off the charts. I only wish we had known when he was 11, his life would have been quite different. Both of my kids did the antidepressant routine and the results were almost fatal. Watch your young person very carefully. Your 11 year old sounds a great deal like mine. The diet may very well change his life, and yours. Please give it a try no matter what the test results are.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Thanks, everyone, for all the input! I am going to try him on the diet and see what happens. It certainly cannot hurt and if it improves the symptoms then great. This is a great forum, I'm new to all of this, so it is nice to have the experience of others to draw on and to share with.

Again, thanks!

Mary :rolleyes:


HLA-DQ 1,1 (5,6)

Gluten free - March 08

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If the diet doesn't seem to be working or only partially working, don't give up. It could just mean that there is/are additional triggers perhaps such as dairy, corn, onions, oranges, even things like perfume, make-up and toothpaste (chemicals). People who are coeliac or suffer with gluten intolerances will very often be affected by other foods or factors. We even knew of someone who developed an allergic reaction to tap water (Ok with bottled)!

Stick with the gluten-free but perhaps work through other things noting reactions. Introduce a different food every 2 or 3 days and note the reactions. If clear, keep the food, if not you can ditch it. Although not definitive as reactions can sometimes be delayed or overlap, at least it enables you to narrow down the possibilities.


Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

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First day back at school and his teacher has already noticed a difference. (Mind you, this is only a couple of days in). He does have other allergies (severe allergy to nuts, carries epi-pen, as well as dust, grass, birch trees). He was breastfed until about 6 months, but would spit up constantly...must have been something I was eating...and when he came off breast milk, he certainly didn't get any worse with spitting up. It was probably once he started eating more solids that things settled down on that end.

Anyways, I'll see how things go. He is a very picky eater, but so far seems to be eating all the new stuff I am putting in front of him with no complaints!

Thanks again, everyone!

Mary


HLA-DQ 1,1 (5,6)

Gluten free - March 08

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He does have other allergies (severe allergy to nuts, carries epi-pen, as well as dust, grass, birch trees).

Keep an eye open for cross reactors -- I see you mention birch. Birch is cross reactive with Apple, Plum, Carrot, Fennel, Cherries, Walnut, Pear, Potato, Peach, and Wheat. That means that these foods are similar enough to birch that at varying times of the year (esp when birch pollen is high) these foods could cause a mild oral or behavioral/inattention reaction.


Shellfish free since 1980

Milk free (all forms) since 1991

Feingold in 2003

First gluten-free round 2007

Now entering full time Gluten free, egg free, almond/peanut free

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Keep an eye open for cross reactors -- I see you mention birch. Birch is cross reactive with Apple, Plum, Carrot, Fennel, Cherries, Walnut, Pear, Potato, Peach, and Wheat. That means that these foods are similar enough to birch that at varying times of the year (esp when birch pollen is high) these foods could cause a mild oral or behavioral/inattention reaction.

I knew about the cross-reactive component to apples and most pitted fruits (plums, peaches, cherries, etc.) but did not know that potatos, carrots and wheat were also involved...that is interesting. It is funny, as a baby when he moved on to solids I could never get him to eat the fruit which most babies seem to prefer. He will eat vegetables before fruit anytime, even to this day. I will certainly check into the others you mentioned watch for as well.

Thanks!

Mary


HLA-DQ 1,1 (5,6)

Gluten free - March 08

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Great information in this post - thanks. I have celiac disease and my 8 yo daughter was just diagnosed. My other daughter (6 yo) was just dx with ADHD (more inattentive than hyperactive) and her bloodwork was negative for celiac disease.

After reading these posts, I am going gluten-free for her as well. Hopefully we'll see some improvement. I can't say it enough - Where would I be without this forum????? Thanks everyone.


Type 1 diabetes - 7/96

celiac disease (positive biopsy and bloodwork) - 11/05

but not gluten-free unit 1/08 (denial)

Daughter celiac disease (positive bloodwork) - 1/08

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Keep an eye open for cross reactors -- I see you mention birch. Birch is cross reactive with Apple, Plum, Carrot, Fennel, Cherries, Walnut, Pear, Potato, Peach, and Wheat. That means that these foods are similar enough to birch that at varying times of the year (esp when birch pollen is high) these foods could cause a mild oral or behavioral/inattention reaction.

Yikes, I didn't know this information! I have tested allergic to birch, and now I understand why in the spring I can't seem to tolerate carrots and pears (I am intolerant to potato and the other fruits no matter what), when other times of the year I seem fine with them.

Pears are the only fruits I can normally eat without a problem, but last spring I developed an oral allergy to them! Now I know why.

My youngest daughter also can't retain anything and these past two years has failed nearly all of her courses in high school. Everybody claims that she is just lazy and doesn't care. I know better, but nobody believes me!

She has been gluten-free for about two months now, and I believe I see a difference. I have just moved her to live with her older sister (ten years her senior) and her family, who's older daughter (18 months) is also gluten intolerant. I wanted to give her a fresh start in a school far from here (a 4 1/2 hour drive). I took her out of her old school in December, because the vice-principal had treated her so badly and was so self-righteous and not understanding, that she was making things impossible for my daughter there.

The teachers won't even know of her problems (the guidance counsellor, who is also the pastor's wife, and vice-principal know of course) unless she messes up. That gives her a totally fresh start. I am very hopeful for her (even though I will miss her, she wasn't supposed to move out until she goes to college).


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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My youngest daughter also can't retain anything and these past two years has failed nearly all of her courses in high school. Everybody claims that she is just lazy and doesn't care. I know better, but nobody believes me!

It's hard on the kids when people think they are just being lazy. With ADHD it isn't their fault...telling them to concentrate and focus is like telling someone who needs glasses to just look harder and they'll see. I have had teachers say to me they think my son is just being lazy and I am appalled to hear that coming from the individuals that are supposed to be helping him learn. I do think that ADHD is a symptom of some other problem and it does make sense that if nutrients are being properly absorbed, the brain and it's function will be affected. I agree, it doesn't hurt to try the gluten free approach and see what happens.

Ursa Major, I wish your daughter the best and hope she realizes she is a valuable, unique individual!!

Mary


HLA-DQ 1,1 (5,6)

Gluten free - March 08

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