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Kids With Headaches?


Ruth

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Ruth Enthusiast

Have your children ever had headaches associated with celiac? My 6yo son has been having headaches for almost a year now. In addition to the pediatrician, we have seen allergists (he has many allergies), opthomologists, dentists, and neurologists. All his CT Scans and MRIs have come back fine (thank God) and everyone says he will outgrow the headaches. I have had a gut feeling that he, like me and my daughter, has celiac. His blood work was negative a year ago.

He also is small for his age, always has been, although he has grown consistently.

His headaches seem like sharp pains that come-and-go all day. I don't see any association with stress, reading, light, need for attention, or time of day.

Any similar experiences out there?

Thanks.

Ruth


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dana-g Newbie

I'm a grown woman with celiac disease who had a headache almost every day until I stopped eating gluten. I, too, saw allergists, neurologists, had CAT scans, MRIs, the whole nine yards. I almost never get headaches now, and it's been almost six months. I've read a lot of books about celiac disease and a lot on the internet, and there is definately a connection between headaches and celiac disease...exactly what that connection is??? All I know for sure is for me, no gluten, no headaches. Hope that helped.

lovegrov Collaborator

I remember having many headaches as a child and although I was normal size and didn't have diarrhea, I can look back now and see I had celiac disease then. I also had headaches every day as an adult until I went gluten-free.

richard

kaylee Rookie

My little guy clearly had headaches although he was too young to say so (went gluten free at 16 months). He used to rub his hands across the top of his head and forward and make long blinks that were not normal. This hasn't happened once since he has been gluten free!

Best,

Kaylee

KAthyB Newbie

My daughter had all the neuro tests - normal- but was diagnosed with migraine disorder not linked to stress or diet. The gluten-free diet did not change the headaches and after trying many meds - she is still on a few for the headaches - we tried accupuncture and it worked. After 3 years of headaches almost daily, she went one month without. I do believe the celiac disease, her ehlers danlos syndrome, and vaso deperessor syncope all tie in with the headaches but gluten does not seem to have any effect. I highly recommend the acupuncture by a doctor of Chinese medicine. We were referred by our pediatrician. Good Luck!

KathyB

Connie R-E Apprentice

I've been gluten-free for 6 years, and I've found that other foods can cause headaches. For me it is honey. It causes a small swelling at the top of my spine and as long as it is swollen I have a hummdinger of a headache! It starts 24 hours after I've eaten the honey, so it was kinda difficult to figure this one out.

Maybe your little guy has an additional food allergy...

If you can keep a food/symptom diary, you may be able to figure it out faster!

Good luck!

Connie

  • 2 weeks later...
Ruth Enthusiast

Thank you all for your responses!

My son just had his 6-year check-up... we are going to have his blood tested for celiac again, and then, regardless of the results, I'm going to try the gluten free diet for 3-4 months and see if it helps his headaches. Based on your replies, it seems like there could be a connection. Also, I like the food diary idea... I will start one immediately to see if any other foods seem to be connected to his headaches.

Thanks again, I'll post an update in a couple of months!


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  • 2 weeks later...
coldkelly Newbie

Headaches were the only symptom my daughter had. She was just diagnosed a few weeks ago and has hardly had a headache since then.

hsd1203 Newbie

Gluten daoen't give me headaches, but casein and soy especially sure do! THe second one is a little tough b/c soy is in EVERYTHING, but not feeling like my head is in a vice is worth the extra label reading. :)

Just my experience.

Ruth Enthusiast

Hi.

ColdKelly, just wondering.... how/why was your daughter diagnosed? Was she tested because you or another family member has celiac, or did a doctor conclude that her headaches may have been a sign of celiac disease and therefore tested her?

Thanks for the responses!

Ruth

  • 2 weeks later...
DawnI Rookie

Ruth

did you get The results back yet from The bloodd test? my DD tested neg. last year on blood and biopsy.....this year tested way higher on blood....we are doing a biopsy tomorrow am.....

what a difference a year makes...

Dawn

  • 4 weeks later...
Ruth Enthusiast

Hi,

We never ended up having my son's blood tested for celiac again. He caught the chicken pox right after his 6-year check up and then we left on vacation.

So... we just put him on the gluten-free diet to see if it would help his headaches.

He started the gluten-free diet on June 27th. His complaints about headaches have been drastically reduced. Previously, he would tell me all-day-long (no kidding) every day that his head hurt. This week I have only had him mention that his "head hurts" twice. Quite a change! I have not checked his height or weight yet.... based on the way his clothes are fitting and his appearance I don't think there has been much of a change. We will continue the diet and hope for continued improvement.

Thanks for all your responses! I'll continue to update his progress, just in case any one else finds themselves in a similar situation.

Take Care,

Ruth

flagbabyds Collaborator

Good he's feeling beter.

  • 1 year later...
Ruth Enthusiast

I just wanted to post an update...

My son has been gluten-free for almost 2 years now. Headaches are gone! In addition, his excema, asthma and nut allergies are gone too!

I have no idea if this is related to going gluten-free or not. This was a child that was on all sorts of allergy/asthma medications and using a nebulizer with albuteral/pulmucort for four consecutive days a month (like clockwork!) and missing school b/c of it.

Now, he olny uses his albuterol inhaler if he comes in contact with a dog or cat, and has only used his nebulizer once a year ... when he has had a bad chest cold.

I just wanted to share his success story...

He was never "formally" diagnosed with celiac and never had classic (gastro) symptoms.

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    • trents
      Welcome to the forum, @Nikki03! What was the other result from the other physician's lab work? The test result you report in your post is not a celiac disease diagnostic test. It is a test for IGA deficiency. It is also known as "total IGA". There are other IGA antibody tests that are used to diagnose celiac disease but if you are IGA deficient, their scores will be artificially low. Obviously, you are not IGA deficient so if there were other IGA antibody tests run they should be trusted as accurate unless you had been on a gluten free or reduced gluten diet before the blood sample was taken. So, if you have other test results, please post them along with (this is important) their reference ranges. Raw test scores without reference ranges are not necessarily helpful as different labs used different reference ranges. Here is an article that describes the various antibody tests that can be ordered when checking for celiac disease: As you can see, there are IGA tests and there are IGG tests. What are your symptoms? There is another gluten disorder known as Non Celiac Gluten Sensitivity (NCGS) that shares many GI symptoms with celiac disease and is 10x more common than celiac disease. There are no tests for NCGS so celiac disease must first be ruled out by formal testing.
    • Nikki03
      I had celiac labs done and got two different result from two physicians. I have tons of celiac symptoms and suspected it for a while now but this has me so confused can you help?    my labs results read as follows  immunoglobulin A QN =419 which was off the chart high but everything but that was in normal range.               Thanks sincerely confused!   
    • trents
      As I mentioned above, NCGS stands for Non Celiac Gluten Sensitivity. Celiac disease and NCGS share many of the same GI distress symptoms but NCGS does not damage the lining of the small bowel as does celiac disease and is not an autoimmune condition, as is celiac disease. NCGS is 10x more common than celiac disease but there are no tests for it. Celiac disease must first be ruled out. We actually know much more about celiac disease than we do about NCGS. Some experts believe NCGS can be a precursor to celiac disease. The only known antidote for either is total abstinence from gluten. Joint pain is a well-established symptom of celiac disease, one of the more than 200 symptoms on a growing list. And many of them present as non-GI related.
    • fritz2
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    • Pat B
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