Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Seizure/sugar Connection With Celiac Disease


Debbi

Recommended Posts

Debbi Newbie

Hello! My son has had petit mal seizures since he was 5 and he is almost 12. Seizures were never really controlled by medicines.. I am praying that my sons out grows the seizures, but his case is not a normal one.

He has a sugar problem and I believe gluten problem (which I think celiac disease) but he has not been diagnosed. I have tried to have him on a natural diet...with no preservatives. This has helped...but still searching for more answers. (Doctors always said that diet didn't matter....and I have proven them wrong!) I have been doing further research and have found that celiac disease...could have caused the seizures...and sugar problems. I would like to correspond with anyone that has info on this.

Thanks Debbi

dsprang@dbscorp.net


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



Celiac.com Sponsor (A8-M):



missy'smom Collaborator

What kind of sugar problems does he have? Diabetes is often associated with Celiac. Has he been tested for diabetes? If so, what kind of testing? There is a slow progressing form of type 1 called LADA that is autoimmune, celiac disease is also autoimmune. To test for LADA they do a blood test that checks for certain antibodies(GAD). The A in LADA stands for adult but from the stories I've read of people who have it it seems that they had issues since they were relatively young and by the time they were adults they had progressed to type 1. Many having been undiagnosed for a long time. My sister had seizures and is now seizure free but still on meds. I think she's afraid to try to get off because of bad experiences but at the least, the healing of the villi that takes place on a gluten-free diet, has helped her absorb the meds now(previously they weren't being absorbed due to damaged villi) and now they are working and keeping her seizure free.

Good luck in finding the answers you are looking for.

chatycady Explorer
Hello! My son has had petit mal seizures since he was 5 and he is almost 12. Seizures were never really controlled by medicines.. I am praying that my sons out grows the seizures, but his case is not a normal one.

He has a sugar problem and I believe gluten problem (which I think celiac disease) but he has not been diagnosed. I have tried to have him on a natural diet...with no preservatives. This has helped...but still searching for more answers. (Doctors always said that diet didn't matter....and I have proven them wrong!) I have been doing further research and have found that celiac disease...could have caused the seizures...and sugar problems. I would like to correspond with anyone that has info on this.

Thanks Debbi

dsprang@dbscorp.net

My sister has had seizures before going gluten free. We both struggle with hypoglycemia too.

I have read a number of articles about this issue. You may want to read the book Breaking the Vicious Cycle. The author believes toxins are released into the blood stream and pass through the blood brain barrier causing all sorts of brain disorders. Her diet elimintes sugar, all starch, dairy, grains and focuses on monosaccharides. You can get the book at Amazon or check it out at the library. She states thatmost people are cured within one year, if one strictly follows the diet.

I have been on the diet for 6 months and the hypoglcemia has improved greatly. I'm getting better!

And I love the homemade yogurt which is full of good bacteria - healing me.

Has your son been on a lot of antibiotics? This may be the trigger.

Debbi Newbie
What kind of sugar problems does he have? Diabetes is often associated with Celiac. Has he been tested for diabetes? If so, what kind of testing? There is a slow progressing form of type 1 called LADA that is autoimmune, celiac disease is also autoimmune. To test for LADA they do a blood test that checks for certain antibodies(GAD). The A in LADA stands for adult but from the stories I've read of people who have it it seems that they had issues since they were relatively young and by the time they were adults they had progressed to type 1. Many having been undiagnosed for a long time. My sister had seizures and is now seizure free but still on meds. I think she's afraid to try to get off because of bad experiences but at the least, the healing of the villi that takes place on a gluten-free diet, has helped her absorb the meds now(previously they weren't being absorbed due to damaged villi) and now they are working and keeping her seizure free.

Good luck in finding the answers you are looking for.

Hello! The doctor called it pre-diabetes. Years ago I would see him eat something that would cause the blood sugar to rise and he would go into a seizure. We started on artificical sweetners and seizures were horrible so stopped that immediately. I found a group (Weston Price) that taught me how to make yogurt, keifer, and how to soak my bread (sourdough,etc) I also found a wonderful supplement (glyconutrients) that has helped him. He hasn't been to a family doctor in 4 years (which is amazing...he was always, always sick) (seizure doctor once a year)....so everything is working...probodics and the supplements really help the body.

Last year going to Cleveland Clinic..they repeated his EEG...it is better..only on one part of the brain...last time it was everywhere. So we are going to the right way. It bothers me so much as he gets older...that I want him to out grow the seizures. His seizures are still at night.....and first thing in the morning.... the eye will twitch and seizures usually last 40 seconds are so. You ususally don't see the seizures during the day unless he gets upset. (which years ago they were all the time) He is on just one seizure med (which the doctors are trying to change) But more meds doesnt make it better....it almost killed his liver and him (he was on 1000 mg depakote and another med...he was only 65 pds.) I will only do one med for now on.

I really think celiac or a gluten problem started this all. I remember when he was 2 we went to a Waffle House..he had a waffle and chocolate milk and he was sick within a short time vomiting. His seizures started at 5 after a battle of flu...(it was horrible he vomited in his sleep)....and he was never the same. I believe my side of the family has celiac or gluten problems, I also had seizures but only had one big seizure and was on meds and never seen another seizure. So his case is a different one. What you eat does make a difference. I had a doctor tell me years ago....that it didnt....boy I know he is wrong.

I just want to keep getting him better...

thanks Debbi

missy'smom Collaborator

I too am a firm believer in the healing power of dietary measures. Keep an eye on that blood sugar. If the doc. is using just a fasting BG to diagnose and check his progress, I would be testing after meals over time to see how he is doing. Keep a good balance with plenty of protein and control on the carbs. I hope you'll find the following to be a good resource. Open Original Shared Link

chatycady Explorer
Hello! The doctor called it pre-diabetes. Years ago I would see him eat something that would cause the blood sugar to rise and he would go into a seizure. We started on artificical sweetners and seizures were horrible so stopped that immediately. I found a group (Weston Price) that taught me how to make yogurt, keifer, and how to soak my bread (sourdough,etc) I also found a wonderful supplement (glyconutrients) that has helped him. He hasn't been to a family doctor in 4 years (which is amazing...he was always, always sick) (seizure doctor once a year)....so everything is working...probodics and the supplements really help the body.

Last year going to Cleveland Clinic..they repeated his EEG...it is better..only on one part of the brain...last time it was everywhere. So we are going to the right way. It bothers me so much as he gets older...that I want him to out grow the seizures. His seizures are still at night.....and first thing in the morning.... the eye will twitch and seizures usually last 40 seconds are so. You ususally don't see the seizures during the day unless he gets upset. (which years ago they were all the time) He is on just one seizure med (which the doctors are trying to change) But more meds doesnt make it better....it almost killed his liver and him (he was on 1000 mg depakote and another med...he was only 65 pds.) I will only do one med for now on.

I really think celiac or a gluten problem started this all. I remember when he was 2 we went to a Waffle House..he had a waffle and chocolate milk and he was sick within a short time vomiting. His seizures started at 5 after a battle of flu...(it was horrible he vomited in his sleep)....and he was never the same. I believe my side of the family has celiac or gluten problems, I also had seizures but only had one big seizure and was on meds and never seen another seizure. So his case is a different one. What you eat does make a difference. I had a doctor tell me years ago....that it didnt....boy I know he is wrong.

I just want to keep getting him better...

thanks Debbi

You mentioned you make yogurt. Are you letting it ferment 24 hours so there is no lactose remaining? I'm not real familiar with kefir but doesn't it have a lot of alcohol in it? That wouldn't be good for someone with blood sugar problems. That is why I stay away from it. I too was told I have pre-diabetes.

You appear to have a really good handle on this and are doing a great job for your son. I vote with you. Diet is a big deal!

have you read much about the toxic by-products a damaged gut produces that pass into the blood stream and affect the brain?

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,832
    • Most Online (within 30 mins)
      7,748

    Cindessa
    Newest Member
    Cindessa
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cameo674
      Does it taste like black licorice?  It said it was chewable.  I do not like that flavor.     Since the burn at the back of my throat is there everyday, I usually only take something when it is unbearable and keeping me from ADL especially sleep.  
    • Scott Adams
      Your concerns about Nando's cross-contamination practices are valid and important for the celiac community. It's disappointing that Nando's does not have stricter protocols for children's portions, especially given the risk of cross-contact with gluten-containing items like garlic bread. Cooking gluten-free items on shared surfaces, even if cleaned, is not safe for individuals with celiac disease, as even trace amounts of gluten can cause harm. While the adult butterfly chicken may be a safer option, the inconsistency in practices for children's meals is concerning. It's frustrating that Nando's headquarters did not take responsibility, but sharing your experience raises awareness and may encourage them to improve their protocols. Consider reaching out to celiac advocacy organizations to amplify your concerns and push for better standards. Always double-check with staff and emphasize the importance of avoiding cross-contamination when dining out.
    • Scott Adams
      I had this symptom when I was diagnosed. Are you sure that your diet is 100% gluten-free?  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 has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):      
    • Scott Adams
      Based on your results, it seems unlikely that you have celiac disease. A negative endoscopy and the absence of HLA-DQ2/DQ8 genes (the primary genetic markers for celiac) strongly suggest you do not have the condition. However, the elevated TTG-IgA (22) could indicate a temporary immune response or another issue, such as a different autoimmune disorder, intestinal infection, or even a lab anomaly. The presence of DQA1*05 alone is not diagnostic for celiac. Meeting with an allergist and GI specialist is a good next step to explore other potential causes for the high antibodies, such as non-celiac gluten sensitivity or other immune-related conditions. Keep a detailed food and symptom diary to help guide further testing and discussions with your doctors. Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Captain173
      I had celiac panel done back in October, only ttg iga came back high  (22 with positive being over 3). Endoscopy done in January, it was  negative. Genetic test done after endoscopy, negative for both hla dq2 & dq8. Did show positive for dqa1*05.  Scheduled to meet with an allergist next week. Not scheduled to meet with GI specialist till after allergist. Confused if I have celiac or what caused high the antibodies originally if I do not.
×
×
  • Create New...