Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Children With Seizures- Gluten A Factor?

infiore

Recommended Posts

infiore Rookie
infiore
Posted

Hi! I am new here to the forum, my daughter has been diagnosed with seizures (she's 5) and a kinesiologist we took her to reccommended we take her off gluten. She has a pediatric neurologist we take her to and she is taking topamax for seizures (her seizure symptom is upward eye rolling). We had her tested for gluten intolerance through bloodwork but it didn't show her to be intolerant according to the levels. I would love to know if anyone else has had a similar experience and also I live in Waverly, IA- I wondered if anyone knew of any good doctors or support groups? I would love to take her off gluten in hopes of seizure control but even the ped neurologist says going gluten free won't help, as it only helps kids with autism.

Thanks so much!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


missy'smom Collaborator
missy'smom
Posted

My sister(she's 30) has seizures and has no answers. I'm encouraging her to check into celiac disease. More and more it's looking like she has it. Because of the seizures, I'm encouraging her to get a biopsy. I think she'll need more help than just a gluten free diet. Maybe additional testing and supplements as well as support from a Dr. with reguards to the seizure meds she's on now. She lives in Cedar Rapids(I live out of state) and as part of my search for a Dr. and support group I came across a support group contact on this site for Waverly. I contacted them and asked about Cedar Rapids. The lady responded right away and was very helpful. I posted under the doctors section and labeled it Cedar Rapids. I'll check my post and come back here with the contact info. for you.

Looks like you found my post. I posted the contact for you there.

Ursa Major Collaborator
Ursa Major
Posted

Your ped neurologist is very uninformed, if he states that a gluten-free diet only helps kids with autism. Seizures can absolutely be caused by gluten, and those seizures could possibly stop completely on a gluten-free diet, no meds needed.

The celiac disease tests are VERY unreliable in children under six, so the negative test result doesn't necessarily mean a thing. There are no false positives, but many false negatives. The villi have to be virtually destroyed for the blood test to be positive. Your daughter's intestinal damage may not be advanced enough for a positive test.

On the other hand, she may be gluten intolerant (rather than having celiac disease), and for many people who are gluten intolerant the damage is neurological, not necessarily intestinal.

In children that young the diet trial is the best and most reliable test. Why not give it a try, what have you got to lose?

CarlaB Enthusiast
CarlaB
Posted
Hi! I am new here to the forum, my daughter has been diagnosed with seizures (she's 5) and a kinesiologist we took her to reccommended we take her off gluten. She has a pediatric neurologist we take her to and she is taking topamax for seizures (her seizure symptom is upward eye rolling). We had her tested for gluten intolerance through bloodwork but it didn't show her to be intolerant according to the levels. I would love to know if anyone else has had a similar experience and also I live in Waverly, IA- I wondered if anyone knew of any good doctors or support groups? I would love to take her off gluten in hopes of seizure control but even the ped neurologist says going gluten free won't help, as it only helps kids with autism.

Thanks so much!

I have a friend whose daughter was having seizures last summer. The Children's Hospital told them there was no reason for the seizures, that it was psychosomatic. They had her tested for Lyme Disease, and it ends up the seizures were from the Lyme.

Don't pay attention to the CDC risk areas ... I got Lyme in an area that is "no risk".

You can get more info at Open Original Shared Link. Check it out and see if it's a fit. If it is, PM me and I'll tell you more.

Hopefully it's gluten, that's an easier problem to fix than Lyme. Lyme requires lots of medication, gluten requires avoiding a food ... Lucky me, I have both. :P

CarlaB Enthusiast
CarlaB
Posted
Hi! I am new here to the forum, my daughter has been diagnosed with seizures (she's 5) and a kinesiologist we took her to reccommended we take her off gluten. She has a pediatric neurologist we take her to and she is taking topamax for seizures (her seizure symptom is upward eye rolling). We had her tested for gluten intolerance through bloodwork but it didn't show her to be intolerant according to the levels. I would love to know if anyone else has had a similar experience and also I live in Waverly, IA- I wondered if anyone knew of any good doctors or support groups? I would love to take her off gluten in hopes of seizure control but even the ped neurologist says going gluten free won't help, as it only helps kids with autism.

Thanks so much!

I have a friend whose daughter was having seizures last summer. The Children's Hospital told them there was no reason for the seizures, that it was psychosomatic. They had her tested for Lyme Disease, and it ends up the seizures were from the Lyme.

Don't pay attention to the CDC risk areas ... I got Lyme in an area that is "no risk".

You can get more info at Open Original Shared Link. Check it out and see if it's a fit. If it is, PM me and I'll tell you more.

Hopefully it's gluten, that's an easier problem to fix than Lyme. Lyme requires lots of medication, gluten requires avoiding a food ... Lucky me, I have both. :P

  • 2 weeks later...
hlm34 Apprentice
hlm34
Posted

I am a diagnosed celiac and also have a seizure disorder. My first grand mal happened almost 2 years ago. About a month after that, i started dropping weight like crazy and became unable to eat anything. Soon after, i was given the blood test and an endoscopy. Both tested positive for Celiac. Before that seizure, i was healthy as could be. never had any celiac symptoms before that.

I live in Chicago and I have seen a couple world renowned brain surgeons and neurologists (one of them has a street named after him here in chicago!). I personally felt like the sudden Celiac syptoms and the seizure in such close proximity had to be related. They've had me on some pretty severe medications to control seizures. I was hoping that if Celiac was causing the seizures, then if I went on a gluten-free diet, i wouldnt need the anti-seizure drugs and suffer the side-effects of those drugs. I have had tons of EEGs and MRIs and all of these neurologists have told me that if the seizures were related to Celiac, the MRIs would reflect that. Apparently, there would be some sort of calcification or marking on the brain that would show that it was related to Celiac. I didnt believe it at first, but i visited different doctors and different hospitals and got the same answer from everyone.

I assume your daughter has had MRIs and EEGs?? Do they show abnormal brain activity?

kookaburra Rookie
kookaburra
Posted
Hi! I am new here to the forum, my daughter has been diagnosed with seizures (she's 5) and a kinesiologist we took her to reccommended we take her off gluten. She has a pediatric neurologist we take her to and she is taking topamax for seizures (her seizure symptom is upward eye rolling). We had her tested for gluten intolerance through bloodwork but it didn't show her to be intolerant according to the levels. I would love to know if anyone else has had a similar experience and also I live in Waverly, IA- I wondered if anyone knew of any good doctors or support groups? I would love to take her off gluten in hopes of seizure control but even the ped neurologist says going gluten free won't help, as it only helps kids with autism.

Thanks so much!

My son (4yo) had what were either seizures or severe migraines last spring. He has the classic symptoms of celiac, and when we took him off gluten the effect was remarkable. Beyond belief. We've tried a gluten challenge 2 more times with obvious results. Here is the kicker, though, his blood panel came up negative (he was already off gluten then so that's to be expected). But his gene test came up negative and I've been told by a few doctors that he absolutely can't have celiac. I wonder if there are any other diagnosis that could fit? Try the gluten challenge... if your experience becomes similar to ours, there is no mistaking the difference. I'd love to hear how your situation progresses as it is similar to ours...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Juliet Newbie
Juliet
Posted

The gene test only indicates a predisposition to Celiac Disease. At least 1-2% of the people who have Celiac Disease do not have the HLA-DQ2 and HLA-DQ8 genes.

CarlaB Enthusiast
CarlaB
Posted
But his gene test came up negative and I've been told by a few doctors that he absolutely can't have celiac. I wonder if there are any other diagnosis that could fit?

I bet he has DQ1 genes that can cause gluten intolerance with neurological symptoms, and these people (me included) typically test negtive for celiac.

ptkds Community Regular
ptkds
Posted

I once watched a Mystery Diagnosis on the Discovery Health Channel about a little boy who had seizures. They weren't the grand mal kind, but he would gaze off into nothing and make a clicking noise w/ his tongue. Turns out he had Celiac disease and once he was on the gluten-free diet, he became seizure-free. I have it copied on a celiac disease. If you would like a copy of it, just let me know.

ptkds

  • 2 weeks later...
kookaburra Rookie
kookaburra
Posted
I bet he has DQ1 genes that can cause gluten intolerance with neurological symptoms, and these people (me included) typically test negtive for celiac.

That's interesting that you should say so, because he is actually a double DQ1. When I happened upon celiac as a potential diagnosis, I was actually excited (I hope that doesn't sound too terrible). But there is this family history of extreme IBS, and accompanying neurological stuff. I thought I had solved so many mysteries, why those relatives became so food intolerant, had malabsorption, etc. I hope in the years to come they will do more studies about gluten intolerance. They seem pretty slim so far.

I've been following your thread about lyme a bit. Same thing there -- chronic lyme is terribly understudied. Hope you are feeling ok these days.

  • 2 weeks later...
mamaloca2 Apprentice
mamaloca2
Posted
Hi! I am new here to the forum, my daughter has been diagnosed with seizures (she's 5) and a kinesiologist we took her to reccommended we take her off gluten. She has a pediatric neurologist we take her to and she is taking topamax for seizures (her seizure symptom is upward eye rolling). We had her tested for gluten intolerance through bloodwork but it didn't show her to be intolerant according to the levels. I would love to know if anyone else has had a similar experience and also I live in Waverly, IA- I wondered if anyone knew of any good doctors or support groups? I would love to take her off gluten in hopes of seizure control but even the ped neurologist says going gluten free won't help, as it only helps kids with autism.

Thanks so much!

I say why not give it a try and see if it helps? Going gluten free won't hurt, and is safer than some of those knarly meds!

CarlaB Enthusiast
CarlaB
Posted
I've been following your thread about lyme a bit. Same thing there -- chronic lyme is terribly understudied. Hope you are feeling ok these days.

Thanks for asking. Once a month I have a bad flare-up/herx because of the life cycle of the bacteria. In the beginning I couldn't tell a difference between the flare-up and just normal, now there is a distinct difference, so I guess that means I've seen a little improvement, at least between the flare-ups. This week is my flare-up week, so I'm mostly staying in bed. Thank goodness for laptops or I'd be without entertainment!

BTW, I'm double DQ1, too.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748
    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.