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JodiC

Migraines

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I have Celiac (diagnosed finally in 2005 after years of illness) and am wondering how to tell if your child has it? I can't remember back when I was his age what kind of symptoms I was having. My twin boys seem to be plagued lately with headaches and vomiting. In one of the boys, the headache comes on very fast, causes him to vomit uncontrollably and then he falls into a very deep sleep. I was also plagues with migraines in my pre diagnosis days but was in my early 20's. They are only 6. The last time they were tested for Celiac was when they were 3 going on 4 and the tests came back negative. They also get pretty irritable at times and seem to not be able to control themselves without alot of nagging from me and my husband :). I should mention he also see "fireworks" before they hit. I'm assuming this is the aura. I don't know if I should have them retested. I thought Celiac went dormant until puberty for some reason, but I suppose that is not the case for all children. Any help would be appreciated.

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Celiac does not go "dormant"...you can develop celiac at any age and once it starts - its there for life.

My daughter had migraines so bad - she would stagger down the hallway grabbing the walls. She would cover her head and ask for the lights to be turned out - but they were already off.

Once we discovered she was celiac - and went gluten free...the migraines stopped. Its one of the symptoms we see if she gets glutened.

Try going gluten free and see if they stop. Tests can be false negative in children.

Sandy


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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If I knew then, what I know now, I would have tested my kids with gluten free just to see if it helped. My kids all suffer headaches, I too have one everyday of my life. My son Nick was on beta-blockers at the age of 6 for migraines and he still has them, not as bad as when he was young. His son and daughter, 8 and 7, both have migraines and Colin is on beta-blockers now. My son Joe had headaches that came on instantly and he would scream, tell everyone to be quiet, shut off the lights, he would cry and if I could get him to calm down and rest, he would be asleep in minutes and when he woke, he would be fine. My daughter has migraines and my 2 older sons have headaches, not migraines really. I have to wonder if it isnt gluten related. My moms family all had headaches like that, but she doesn't think gluten is a problem for her. My dad is the celiac, yet my mom has gone pretty much gluten free with him and her headaches have lessened. My sister accuses me of thinking everything is caused by celiac disease and she is celiac too. Am I wrong? There seems to be a connection to me!


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Yes, yes, yes!!!! I have had headaches my whole life. I remember being in public school going to the nurses station. I would lay in a completely dark room, the pain was excruciating. Eventually I would vomit fall asleep and feel a little better when I woke up. This all happened while I was 6+ years old. The headaches were a major symptom of my celiac.

Natalie


Endoscopy May 23,2007 - positive

Entrolab Dec 2006:

Fecal Antigliadin IgA 209 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 35 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 371 Units (Normal Range <300 Units)

Fecal anti-casein (cow

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My 8yo DD has a lot of headaches and belly aches. My 6yo is Celiac. I'm gluten intolerant (no intestinal damage but definite mood-related symptoms and gastro stuff when I eat it).

Back to my 8yo. She had headaches every day for about a month. I thought maybe her glasses, school, whatever. But then we went gluten-free for a week and the headaches went away. (We're gluten-free at home completely - she was eating gluten in her lunches at school) then she ate it and they came back. She most recently went almost 2 months gluten-free and ate (regular) pizza last night. We're waiting to see if any of her symptoms come back.

That's the problem with a gluten-free trial I guess. Waiting and watching for symptoms that may or may not appear.

I'll let you know if the headaches come back.

mamatide

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You may already know this but artificial sweetners (especialy aspartame, Nutrasweet) and MSG are two of the leading causes of migraines. I have Celiac but gluten doesn't give me a migraine (fortunately! brain fog and D are enough).

Aspartame is my migraine trigger. What amazes me is how many people think nothing of it and act like you're nuts for not wanting it. Kinda like gluten, actually. And the only thing that helps is going to sleep. From what I've seen here in this forum, Celiac makes it's own rules sometimes. Given the family history, I'd consider it even if tests come back negative. They don't have to have full-blown Celiac to simply react to gluten.


Karen B.

diagnosed with Celiac Nov. 2003

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Hi All,

My Son who is 5yrs old has Crohns Disease and since we have put him on a Gluten Free diet, he has improved dramatically. The Symptons are very simalar to Coeliacs so we thought we would give it a go. Anyone else in a simalar situation??

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Thank you for your replies. It completely breaks my heart to see them suffering so much. I didn't want to take them gluten free in case it could actually trigger the disease. I don't know if this is true but as a mother I worry. I know what to do for myself but am unsure when it comes to my kids. Maybe it's more of wishful thinking that they don't have to deal with the disease. :(

Another question is would the endoscopy show damage at their age? The reason I ask is that they have to get their tonsils removed due to the fact they are chronically enlarged and I thought maybe they could do it all at once.

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If it's already few years ago that they were tested you could ask to have them tested again. As they have a celiac relative (you), they should be tested at least every five years or so anyway, since celiac can be triggered at any age. In other words, the fact that they have tested negative once is not a guarantee that they won't test positive later in life.

Pauliina

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Celiac does not go "dormant"...you can develop celiac at any age and once it starts - its there for life.

Sandy

My celiac went "dormant"!!

Had much trouble as a toddler - so says Mom, then no problem until ~age 35, I believe triggered by my little brother's sudden tragic death.

And as for my 2 cents, I'd put the kids on a gluten-free diet.

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