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sarah ruth

Jekyl And Hyde Kids On Gluten? Or Am I Imagining Things..

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I cannot tolerate gluten foods, haven't been tested celiac but have 'tested' myself enough times that I know it's poison for me. In that intuitive way we feed our families I notice my kids are much calmer, hungerier, happier, and healthier when they only eat with me (gluten-free), and too many trips or parties really set them off into being whiney and irritable little grubbers. It is hard to totally restrict what goes into your kids mouths unless you have some convincing reasoning. 90% healthy doesn't cut it with gluten problems, I am finding out, so I have begun talking with our doctor about celiac.

I have been feeding them breads and gluten foods for the past three weeks as my doctor recommended to take them in for blood tests soon and :o my son (5) especially is a MONSTER, my daughter (3) seems to be fading away into a thin tired no appetite creature. These are convincing enough for me, but I'm curious if it's happened to others. Were all your kids' celiac symptoms diarrhea and bloating, or where some behavioural too? My son is obsessively scribbling pretend lists then shouting at me about what he wants to do and collapsing into tears at the end, it's a bit heartbreaking and a practise to remember that he's not usually like this. And my daughter just seems too *light* and feeble.

I would love some suggestions for talking with my doctor about non-traditional symptoms, if anyone has experience with them. Tomorrow is the last day we'll be doing this trial - enough already, take the blood.

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My son definitely had a behavioral reaction. He got much harder to control when he last was exposed that we know of. Personally I would guess its related to the "brain fog" symptoms that adults complain about.


- Vincent -

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I would imagine, children can suffer from mental/behavioral problems just as we do. Adults have brain fogs, and I know I get very moody, cranky, teary when glutened. Children probably have the same reaction but since they do not understand what is happening or how to control themselves they act out. I hope you get your results soon and your kids can start enjoying themselves again.


~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!

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My son was a nightmare from when he was tiny! He used to cry and whine all the time and the "episodes" as we used to call them, were morning, noon and night.... these episodes were kicking, screaming, bursting into tears over absolutely nothing... really loud, really cheeky, really cross all of the time. We were pulling our hair out in frustration by the time we finally figured out celiac disease. He is five now and is finally a calm and happy little boy. As long as he is completely gluten free, the crying is practically non-existant and the lashing out, kicking and screaming (like a child possessed) has disappeared. He is socially more interactive and making lots of friends now and doing normal boy stuff. His weight has put back on (he hadnt gained a pound weight in two and a half years - his two year old sister was beginning to pass him out) All round, we firmly believe that his behaviour was controlled completely by the celiac disease. I have since read that the chemical reactions caused in the gut when it is in distress are called neuro toxins and they cause little ones to go 'mad' cross etc.... For adults it prob results in the depression and anxiety we hear so much about (I dont have celiac disease myself so not sure first hand)

Anyway, for what its worth, if you have celiac disease and your kids are displaying such clear and obvious symptoms, I would take it as a given that they are celiac children and just put them on the diet. But perhaps its good to have them tested in case there are any other issues needing dealt with.

Good luck with it all.

Liz (ireland)

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My youngest was diagnosed for failure to thrive. After learning about the disease and reading more symptoms, we put our older 2 the diet as well. Neither had ever had stomach trouble, but we have had behavioral issues for years. A child psychologist was no help-he found nothing "wrong" with her and said they are just high-energy kids so put them in lots of sports. Gee, that was helpful.

They are completely different kids off gluten. I feel bad saying this, but I enjoy my kids so much more now than ever before! The anger management issues are mostly gone, the attitude problems have faded (we still have normal age-related things, of course) and their dispositions are just so much better.


Mom to 3 girls

DD1-diagnosed by allergist 10/2006

DD4 & DD9-diagnosed by Mom 01/2007

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Well, thank you all. This really really validates what I was suspecting. Seriously, aside from the freaking out and obsessing about everything, my five year old has dug out all of our old punk rock indie records and is listening to them really loud (was that phase of my life really about celiac!!?? :lol: ) and keeps chosing BLACK for all his watercolours and markers!!! I swear, he was singing "the muffin man" with Ella Jenkins and painting in pink and green a month ago - it is so helpful to see these behaviours in context. Getting glutened for me is like having a huge bloating black cloud descend on my life, so I suppose it's quite similar.

We are going in for the blood test this morning, and I am questioning whether anything will show up. My doctor seems to be doing this only to humour me, and our average diet before these past weeks has been so predominately gluten-free. Do any of you strictly control you children's diet with regards to gluten outside of the home when you haven't had conclusive lab results? I ask because it will be a campaign of faith and education with the inlaws and older generations if I don't have a doctor's decree.

thanks!

ps - feedindy, I love my kids all the time, but I'm SO with you on preferring my kids gluten-free!

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Sarah, you described our youngest to a tee. Except that she was overweight, constantly eating because nothing was being absorbed.

I am happy to say that for the most part, Claire is a happy little girl now, and I can always tell when she gets a little gluten in her ;)

Boy, can we tell the difference!


My mom was dx'd Celiac in her 80's after a life time of stomach troubles. I am fine however.

2nd daughter born in 2000

An agitated kid since birth, non-compliant attitude, dx'd with PDDNOS in 2003, ADHD in 2006

Had ongoing facial rash since 2004 -- tested for Lupus -- negative, discovered a high antibody count.

Never complained of stomach ache

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Sarah, three weeks on gluten is not likely going to result in positive blood work, it would have to be more like four to six months. I doubt you'd want to do that!

In children that young the tests are extremely unreliable anyway, the best test is the gluten trial. Obviously, you know the answer already. I have read about lots of kids who are the sweetest kids off gluten, but turn into absolute monsters when eating gluten.

In fact, the kids I am babysitting are like that. It's a nightmare, but the parents refuse to believe that food intolerances are a problem (sigh). I love those boys (1, 3 and 4), but sometimes I wonder how much longer I can handle looking after them (and of course, since they aren't mine, I do have a choice).

Many doctors are willing to officially diagnose children as gluten intolerant (not celiac disease, since they didn't show positive on tests) based on just the evidence from an elimination diet. I hope your doctor will be reasonable and do that. It will make it easier to stand your ground with relatives.


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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Behavioral issues were not a problem when my son was first getting sick from Celiac Disease. Now that he's been gluten free for so long, if he does get a little gluten from cross contamination (as I witnessed first hand last weekend) his behavior is ATROCIOUS, then he gets diarrhea.

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Hmmm... another interesting thread!! Gosh do I wish I'd found this place years ago!!

They just tested my youngest son (22months) for celiac last week and we are still waiting for the results. But reading this thread I IMMEDIATELY tought of my older son who's 4. We seriously call him Jekyl and Hyde on a regular basis and have for years! He can be a perfect angel and he can be the DEVIL and we've never been able to figure it out... its enough to make you want to pull your hair out its that awful!! :blink: He was diagnosed with PDD-NOS at 2.5 by a private psych but then that diagnosis was taken away at 3.5 by Children's Autism Clinic. I do see some ADD tendencies and he's definitely gifted.

He's never had any noticable bowel issues other than a little bit of mild constipation. He goes pretty regularly and it doesn't stink inordinately or float or anything. Sometimes it does stick to the sides now that I think about it :unsure: but its normal in color and everything. BUT the child eats like a horse and is the size of a normal 2.5 year old!! Seriously I've never seen a child who can eat like he can... anything and everything... and he only weighs 34lbs and is 38 inches tall!! He is the smallest kid in his class by far :(

Hmmmmmmmmmmm... I will definitley ask for the Dr to test him if my youngest comes back positive!!

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My 2 daughters' behaviour is much better on the gluten free diet. They have never been diagnosed by anyone except Enterolab but I insist that they are very strict. Luckily, my parents and in-laws and their school respect my decision. My kids are older than yours so they can see the difference, too, and that helps.

One of them did have stomach issues and that is why we tested with Enterolab after the regular blood tests were negative. My other daughter's only symptoms from gluten intolerance were mood and behaviour.


Karen

gluten free 4/06

casein free 7/06

DQ1, DQ8

Daughter (11) gluten free 5/06, casein free 6/06

Daughter (9) gluten free 3/06, casein free 7/06, soy free, trying peanut free

vegetarian

gluten lite on and off since 1999

All dx'ed by Enterolab

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None of us have an official diagnosis through bloodwork and I refused biopsies, but it hasn't been an issue. It was at first, but the improvements were hard to deny. When their doc (and mine) said the gluten free diet was a good idea even without official test results, I simply told family and DD's school that they were recently diagnosed with celiac-end of story. My parents had trouble at first, but the results are hard to deny. I also told my mom one day when she wanted to take DD for the week (before my official declaration of diagnosis) that if she wasn't willing to stick to the diet, I couldn't trust her to care for my children. She's been diligent ever since even though she still doesn't quite "get it" and would love to believe I'm wrong.


Mom to 3 girls

DD1-diagnosed by allergist 10/2006

DD4 & DD9-diagnosed by Mom 01/2007

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well, thank you for sharing with me - seems I don't have the only nutty kids around!! Our doctor told us a week would be enough to have results on the IgA bloodtest she ordered, but from what I've been reading and what you say it likely won't be. NO WAY will I be doing this for 3-6 months!!! On the positive side, our doctor doesn't seem too heavily invested in her ego, and will likely go along with anything I convincingly present to her. She is very positive about other choices we make like acupuncture and herbalism and no-vaccinations, etc.

I have noticed a number of people talking about genetic markers - is this a comon test? We reside in Canada if that makes a difference.

It is most heartening to read that many of the things I intuitively feel to be indicators of something being out of balance are shared by other parents. Every small situation could be casually dismissed by someone observing, but it sure adds up into a pattern.

Last night my husband offered to take his sandwich bread down into the garage and go along with the diet with our children (he would often buy bread treats for them), and I think the grandparents will do their best. I still would like some objective diagnosis to validate my observations, maybe if the bloodwork is negative I will look into enterolab or gluten-intolerance ( and you feed him gluten - you keep him!! :P ). We'll see where this goes.

Thank you all!

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I am so glad you are on this site and know the test results will probably come back negative. Hopefully you will trust your instincts and the first hand experience of the posters (my experience is the same gluten + kids wigging out, then my son gets a rash and my daughter gets D). Did the doctor order the total IGa? Some Celiacs can be IGa deficient and the test for Celiac can only show a negative result. Make sure you get a copy of the test results. The doctor probably didn't do the full Celiac panel of tests.

L.


Michigan

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I definitely used to describe my daughter as "Jekyl and Hyde" and once I figured out that gluten was the problem for both of us, the behavioral issues went away. She had terrible violent outbursts, her Celiac testing was negative, but mine was glaringly positive. She dramatically improved on the gluten free diet, and everyone around her was so amazed by it that they were all convinced. If she gets glutened, the first thing that happens is attutude problems... grumpy, fussy... downright mean...

I had to laugh at the punk rock reference! I too wonder if that part of my youth was all about the gluten!

My daughter is almost 7 and has been gluten-free almost 4 years now. Her official diagnosis is only gluten intolerance. I know that I've prevented her from having full blown Celiac by recognizing that her symptoms were also gluten related and she's an extremely happy well adjusted kiddo.

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Our daughter went through everything described above. She was about 2 1/2 at the time and have several symptoms that no doctor could identify....most obvious was her large round belly and her skinny arms and legs. I got as far as 3T clothes and then started working backwards and by the time she was 3 years old, she was back in her 18 month clothing. She lost 6 pounds in total and never grew an inch in about a year and a hlaf. After months and months of tests and months of v & d, she became very sick and was diagnosed with Kawasaki Disease. She was in the hospital for 5 days for this and a wonderful doctor in the hospital asked about her tummy and if it has always been this protruding. YES, we answered, finally someone who noticed. It took a few more months after that for the official diagnosis because she is IgA deficient and therefore the blood test were negatvie. Once she had the biopsy they confirmed severe celiac disease and we began on the gluten-free diet the next day. She gained weight quickly, started growing and stopped her awful temper tantrums. We never knew if she was throwing herself against the wall because of us or something else. She was a very angry little girl with no energy to play, run , skip, jump or hop. She didn't even want to walk up the stairs. She has always been academically gifted so we didn't know what the problem was. It was Gluten. She is such a different little girl today and she has been gluten-free for almost 2 years. Our 18 month old boy was just tested two weeks ago via biopsy and he was diagnosed with celiac disease as well. It is a different world and we are all better for it and becasue of it! Good luck to all of you!!!

Shannon

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I dont know.. My daughter was never symptomatic. Her biggest problem was to gain and maintain her weight. She never had the stomach aches, the diareah etc. Her other biggest problem was/is cronic constipation. She never had bloating. Now since the beginning of the diet, either its' a puggy belly or bloating. Peds said it was gas, will see what happens when I see the GI.. Ideas anybody?

Lynn


Eat Well To Stay Well

Daughter Dx'd Celiac Jan 2007

Dx'd Aspergers June 2009

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I dont know.. My daughter was never symptomatic. Her biggest problem was to gain and maintain her weight. She never had the stomach aches, the diareah etc. Her other biggest problem was/is cronic constipation. She never had bloating. Now since the beginning of the diet, either its' a puggy belly or bloating. Peds said it was gas, will see what happens when I see the GI.. Ideas anybody?

Lynn

Lynn - my oldest's primary symptom wasw chronic constipation, too. He suffered terribly for years, until he went gluten-free. We put him on a gluten-free diet because of behaviour and learning concerns (and because my father and I are celiac). Even we were shocked at the change in his behaviour, his learning gains, the elimination of the constipation problem, and the fact that his "alligator skin" cleared up after 3 months. He was also extremely skinny - we had to search high and low for slim fit pants. Now, he's a healthy, hefty 5'9" at age 12. He gets a typical gluten rash when he gets into any gluten.

We just put our youngest on a gluten-free diet a few months ago, out of desperation. Despite my own research, I hadn't realized that migraine headaches and gluten had a connection. Our 8yo had daily migraines, sometimes for 3 weeks at a time. His school was getting very concerned. Two weeks into the gluten-free diet, and his migraines all but disappeared.

I have to admit that I allow my kids more leeway than I allow myself, and occasionally let them eat things that I susect might have gluten (such as asian food with a bit of soy sauce). I know I shouldn't.

Our family doctor was little help in all of this. When I told him I suspected the oldest DS was celiac, he said, "oh it's so hard for kids to grow up gluten-free. Don't worry about it - you grew up fine." I was astonished and angry, but later realized that he just didn't know what he was talking about.

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Lynn - my oldest's primary symptom wasw chronic constipation, too. He suffered terribly for years, until he went gluten-free. We put him on a gluten-free diet because of behaviour and learning concerns (and because my father and I are celiac). Even we were shocked at the change in his behaviour, his learning gains, the elimination of the constipation problem, and the fact that his "alligator skin" cleared up after 3 months. He was also extremely skinny - we had to search high and low for slim fit pants. Now, he's a healthy, hefty 5'9" at age 12. He gets a typical gluten rash when he gets into any gluten.

We just put our youngest on a gluten-free diet a few months ago, out of desperation. Despite my own research, I hadn't realized that migraine headaches and gluten had a connection. Our 8yo had daily migraines, sometimes for 3 weeks at a time. His school was getting very concerned. Two weeks into the gluten-free diet, and his migraines all but disappeared.

I have to admit that I allow my kids more leeway than I allow myself, and occasionally let them eat things that I susect might have gluten (such as asian food with a bit of soy sauce). I know I shouldn't.

Our family doctor was little help in all of this. When I told him I suspected the oldest DS was celiac, he said, "oh it's so hard for kids to grow up gluten-free. Don't worry about it - you grew up fine." I was astonished and angry, but later realized that he just didn't know what he was talking about.

lynnejanet,

you are lucky. My daughter was on a big growth & weight spurt when we got the positive results, and since we started her diet, that has actually slowed. Also her acne has gotten worse, luckily no DH, or rashes, her behavior has not changed at all, but then we have only been on the diet since the end of January. As for her grades, I have nothing to worry about there. Couldn't get much better..

Again as to the weight, last spring she was in a 7 slim, by August in 8 slim/regular, by Christmas she was in a 10. Now she is still wearing the same. But have to get new summer stuff anyway, there is no way last summers stuff is fitting...LOL.. My daughter cheats outside of the house sometimes. She admits to it.. But what is she to do in school when they are having parties? The teachers were made aware of this, and are supposed to call me before party, so I can say yes or no to foods or supply something my self, but they never do, and I never find out until after the fact. At least I am supposed to get a copy of what/where they will be eating before the 2 day school trip, to see if what they have will be okay for her...

thanks.

Lynn


Eat Well To Stay Well

Daughter Dx'd Celiac Jan 2007

Dx'd Aspergers June 2009

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