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

Seizures

eeyore

Recommended Posts

eeyore Collaborator
eeyore
Posted

Is it common for celiacs or at least gluten-intolerant people to have seizures?

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

Celiac.com Sponsor (A8-M):


missy'smom Collaborator
missy'smom
Posted

I don't know about common or not but my sister had seizures and after she went gluten-free, no more. At the least, she is healed enough for her meds to be absorbed properly by intestines and they are working. She hasn't stopped the meds yet. Probably afraid to. She went through alot.

happygirl Collaborator
happygirl
Posted
Open Original Shared Link
sugarsue Enthusiast
sugarsue
Posted

Hi. My 6 yr old daughter has epilepsy. Before we finally found medication that works in supressing them, she was having hundreds of seizures a day, most you could not even see but I was seeing at least 10 a day where she was staring off into space, unresponsive. She never did convulse but she might walk off for no reason or continue to try to do something that she was doing before the seizure started. It took us a long time to find medication that would supress the seizures. In the mean time, our neurologist said, at my request, that he would do a celiac panel if I wanted him to, but the change of her being celiac was slim.

I finally had the panel done. My dd came back highly gluten intolerant but negative celiac. Our neurologist's response was "she's fine'. We switched neurologist and our new (and wonderful, I love him) neuro believes that there is a high probability that her seizures are caused by gluten, especially seeing as how sensitive she is to it. We go back at the end of March to find out what our next steps are. She has been seizure free since April 2008 and is still on medication. She also has low biotin which can also cause seizures. Our old neuro wanted to find the right medication to stop the seizures. Our new neurologist wants to find out why she's having seizures so we can stop them. Have I mentioned how much I love him?

I read somewhere that if you go through many medications looking for the right one for your seizures and that none work or side effects are too bad, this can be an idication that the issue is gluten related. Man I wish I could find that reference again since this was our story for almost a year!

GOOD LUCK!

Archived

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

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


  • Member Statistics

    • Total Members
      131,082
    • Most Online (within 30 mins)
      7,748
    Jane5858
    Newest Member
    Jane5858
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Recurring flu like symptoms after being precribed immune system stimulating drug

      By Wheatwacked · Posted

      With all the bloodwork, have they checked your vitamin D?  What is it?  Celiac Disease causes malabsorption, so vitamin deficiencies are common.  Doctors rarely mention this. B1 Gastrointestinal beriberi, a severe thiamine deficiency, is characterized by symptoms including anorexia (loss of appetite), abdominal discomfort and pain, nausea, and vomiting. Other potential symptoms like abdominal fullness, indigestion, and constipation can also occur. These gastrointestinal issues may resist standard treatments, signaling a need to consider thiamine deficiency.  It is commonly believed that thiamine deficiency is not an issue in the western cultures, so rarely address by doctors. Doses of thiamine above 100 mg several times a day will quickly show improvement.  Borderline deficiency will come and go depending on what your eat.  Carbs use it up faster, so for example if you eat a lot of carbs today, tomorrow you may have symptoms.  Thiamine (Benfothiamine is a synthetic fat soluable thiamine) is water soluable, we only store maybe a weeks worth, and there is no upper limit on how much you consume.  Excess is stored or peed away.   For them it isn't a oroblem.  LOL.  They just say some people are like that and see the next patient.  
    • sillyac58
      Recurring flu like symptoms after being precribed immune system stimulating drug

      By sillyac58 · Posted

      I used the cream for 4 days as prescribed 3 years ago. While I cannot be sure it triggered these problems, the timing is very suspicious. Yes, the oats are gluten free, and while I knew some celiacs have a problem with oats, I only just thought to eliminate them.  I just read about corn on this website, which I do eat plenty of. I do eat dairy, and would be so terrible sad to give it up, but..... Thank you for the diary suggestions. I'll start one today. Thanks for responding!
    • trents
      Recurring flu like symptoms after being precribed immune system stimulating drug

      By trents · Posted

      Welcome to the forum, @sillyac58! Are you still using this topical medication for this precancerous spot on your lip? If not, are you saying you used it for a limited time and believe it triggered additional ongoing immune system reactions with unpleasant symptoms? I'm not clear on this. Are the oats you use certified gluten free? You may know this already, but even if they are certified gluten free, the oat protein avenin is similar enough to gluten to cause reactions in some celiacs. The development of other food intolerances is also common in the celiac community. Common offenders in addition to oats are dairy, eggs corn and soy. Dairy and oats are the most common, however. You might do well to keep a food diary and check for patterns.
    • sillyac58
      Recurring flu like symptoms after being precribed immune system stimulating drug

      By sillyac58 · Posted

      I was diagnosed about 10 yrs ago with Celiac by presenting with dermatitis herpetiformis rash. I had no stomach or intestinal discomfort, but of course showed intestinal damage. The dermatitis herpetiformis eventually went away and I've been religiously gluten free ever since. About 3 years ago I was given a topical drug by a dermatologist for pre cancerous spot on my lip. The drug is called Imiquimod/Aldara, and works by stimulating your immune system. ? The package insert and many releable online sources warn to use caution using this drug if one has an auto immune disease, I hace since found out. One of the side effects is flu like symtoms, which I had at the 10 day mark as warned. But these symptoms have been recurring regularly ever since. Low grade nausea (no vomiting), extreme fatique (sleeping in daytime) and often a migraine headache on day one or two. The bouts last around 5 days or more, usually the nausea being the persistent symptom. My dermatologist, and another I went to for second opinion say this isn't a problem. I have been ill about a third of my life ever since. I have had extensive bloodwork, been to numerous specialists, but cannot figure out what is making me sick. I have become neurotic about gluten at home, using separate cutting boards, pans, sponges, dish towels, etc. I rarely eat out, and usually only because I am traveling. I have begun taking my own food to peoples homes for dinners etc. The only thing I haven't done, until now, is to eliminated oats, which I eat fairly regularly, and are known to sometimes be a trigger. And I have to say, in my defense, that it took me a very long time to suspect gluten because my only original symtom was rash/dermatitis herpetiformis. So I didn't associate the nausea/headache/fatique with gluten for a long time. Nor did any one of the many doctors I saw suspect it. I finally had a couple of dermatitis herpetiformis spots (and severe migraine) when traveling and probably eating cross contaminated food. I've never been on one of these sights but I am desperate. I'm praying it's as simple as eliminating oats. But I am angry that I was given this drug that I truly believe set this off to begin with. Anyone?
    • Wheatwacked
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Wheatwacked · Posted

      Just switching to gluten free diet will answer your question without involving anyone else.  Your sister was diagnosed, that puts you at 40% risk of having it also as a first degree relative.  If you improve on a trial gluten free diet, you either have Celiac Disease (autoimmune) or Non Celiac Gluten Sensitivity (not autoimmune).  In any case it is important to address nutritional deficiencies like vitamin D.  Gluten free processed foods are not required to fortify.  The reason gluten foods are fortified is our western diet is deficient in them to the point where the government had to step in and require fortification.   Once you start GFD you'll realize it was the gluten you were afraid of all along, but nobody told you.
×
×
  • Create New...