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Kathleen Curet <[log in to unmask]>
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Kathleen Curet <[log in to unmask]>
Date:
Sat, 3 Jan 2004 10:59:33 -0800
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<<Disclaimer: Verify this information before applying it to your situation.>>

Hello Listmates,
 I am at long last posting a summary on responses to my question about CD and seizures.  Just to give a brief reminder:  our daughter was tested when she was four for CD through EnteroLab (all pos.) and UofM Center for Celiac Research (neg EMA, neg TtG, norm IgA, high IgG, low total serum IgA).  Our other children and their father tested positive for either high IgA or IgG antibodies only, positive for DQ 2or 8, but the genetics were contradictory.  My family has diagnosed CD, my husband's has suspected CD due to overt, classic symptoms including major gastro problems, thyroid cancer, esophogeal cancer, fibromyalgia, seizures, etc.
  Our daughter had 2 gran mal seizures w/in a month and a half; we've been gf for over a year and at the time of her seizures we were not aware of any gluten exposure.  (She never had any symptoms except anemia and sudden falling off in weight gain as a 10mo.old baby) but we've been gf based on amazing improvement in the kids overall health.  OK, that said, here's what I found in the 60+ responses I received.

Several people said that I'm totally off, there's no connection btwn CD and seizures.  I would refer them to these abstracts regarding seizures and celiac:
<http://neuro-mancer.mgh.harvard.edu/ubb/Forum262/HTML/000017.html>

The Neurological Manifestations Of Gluten Sensitivity/Celiac Disease
http://neuro-mancer.mgh.harvard.edu/ubb/Forum262/HTML/000019.html
Here is a post from a very helpful, experienced listmate:
-----"In general, celiac related seizures can be attributable to two things...either nutritional deficiency, or a more direct reaction /immunological response from gluten exposure. I have met a couple of people who have told me that they don't have any seizures anymore except for after a gluten error."

-----Is it possible some gluten could be sneaking into your daughters diet? Especially if she is losing weight again, too? At school? It might be worth having antibody tests run to be sure that hidden gluten isn't sneaking in. If she has been off gluten for over a year...the antigliadin antibodies most likely should have dropped off, or be very very low by now. If they are elevated..you might have to start scouring for possible hidden gluten sources. Is she in a school or daycare environment where she could be getting gluten?       No, she is homeschooled and our friends are very aware of her condition, call me if they have any questions on what they feed her before they feed her, she asks "is this ok?" about everything she eats away from home.

-----Secondly, if she is not taking any vitamins, I would suggest at least a multivitamin. I believe my daughters seizures were related to nutritional deficiency...particularly folic acid, B6, and magnesium. Deficiencies in all of these, and a couple other things, are associated with causing seizures. You could ask to have his various vitamin levels tested, but it is often difficult to get cooperation with the doctors unless you have a really good one :), as our doctors are not very well trained in nutrition. Nutritional deficiencies can cause severe neurological problems ( I know because I had a b12 deficiency, although thankfully it was caught just as I was crossing over into serious problems). Also, blood levels do not always tell the whole story.      We did start her on a good children's multi-vitamin again - we'd fallen off our vitamin taking(SeaBuddies from Enzymatic Therapy).

-----The last thing to consider are other food intolerances. If your daughter is still on dairy, you might consider trying to eliminate that. Casein is definitely another trigger for neurological problems, including seizures. Aspartame and MSG are also common triggers for seizures, and should be avoided as best possible.  Many people wrote telling me that their seizures have specific triggers, if not gluten exposure as mentioned above as well as environmental "pollutants" such as formaldehydes used in paper and new clothing/cloth.

-----I could share information for hours here. I hope you will consider joining us at the mgh forums at www.braintalk.org <http://www.braintalk.org>. It is a patient driven neurology forum supported by Massachusetts General Hospital Neurology Department.. They even have an Epilepsy forum there, which may help you if you ever need to move to meds, or have questions about MRI's, EEG's, etc. I have been trying to educate people there about celiac disease and seizures..but they are very slow to be interested. I think most people just find it hard to fathom that something like a food intolerance could cause neurological problems as severe as seizures.

My daughter did not have GM seizures, but they were very frightening indeed with some stroke like episodes, bizzare behaviour, and many tics and other symptoms. By far, it was the worst (and most frightening) six months of my life. For a while, she appeared to be mentally deteriorating as well..but that was very temporary..thank goodness. We didn't realize the possible connection until about four years later during investigation of her younger sisters chronic diarrhea. Because our GI insisted my older daughter did not need to remove gluten because her intestinal biopsy was negative, and because my daughter is a teen (17) she is currently refusing the diet. She's had many other symptoms throughout her life.

My seven year old is on the diet and her neurological problems all vanished within the first two months...unless she has a gluten error. She had symptoms more related to ataxia, as well as the chronic diarrhea. We skipped the biopsy on her as well because we didn't want to put her through it, and I had read one could have gluten related neurological problems without biopsy evidence of celiac. Of course, our GI did not buy this...but our proof was in our daughters rapid response to the gluten free diet (she is mostly dairy and corn free too).

The good news I want to share, is that even though my daughter with seizure history (who does still eat gluten although not at home where we are 100% gf)...her seizures seem to have resolved. I do believe hers were likely related to nutritional deficiency, and vitamins played a role in taming the seizures..but I will never know for sure. But..after almost three years on Depakote the doctor decided to try a wean, despite a still abnormal EEG (but not seizures in 2 + years). She has been off meds for two years, and she is still seizure free. We should repeat the EEG, but have not. I hate to mess with a good thing.

The suggestion to see a pediatric epileptologist was made by several people - we found that seeing even a peds neurologist is a must as compared to one that sees mainly adults.

Other suggestions made:

-----Low levels of folate as many gf products are not enriched.

----Vitamin levels could be deficient:  have Vitamin panel done - malabsorption, check for trace elements: chromium, manganese, zinc, selenium, copper, D 25-OH, pyrodoxyl 5 (B6 levels/ deficiency).

-----Do ELIZA testing for food allergies

-----see Colgan Institute (www.colganinstitute.com) for vitamins and minerals.

-----for good vitamin panel call Dr. Robert Cade - 904-392-8952 for free urine test.   Malcom Privette Uof F, Gainsville or Specialty Laboratories 1-310-828-6543

-----Dr. Neppe - Seattle - and  www.brainvoyage.com

---some suggested we look into the Ketogenic diet which has been used successfully to control epilepsy

  That was pretty much the extent of the responses.  Valerie Wells gave me a wealth of info on neurological effects/symptoms of Celiac Disease and can be accessed in the archives...tons of information that would be too lengthy to list here.

We are on a holding pattern for now as far as meds go.  The neurologist (2nd opinion) said that we should wait and see how she does, most often children grwo out of these types of seizures by adolescence; but if the seizures continue at a rate of one per month he would prescribe Zonagran (sp?) for her as continued seizures can cause "kindling" or "hot spots" in the brain that may increase the risk of adult seizures.

I took her to a chiropractor at the recommendation of friends who have had seizures and found relief and also some reading on chiro work and seizures.  The chiro adjusted her (and my 8 yr old son for headaches which haven't recurred) and felt that her cervical spine and jaw were misaligned enough to cause some significant pressure build-up.  She was dizzy about an hour afterward and then said in the car on the way home that "I sound normal to myself but you and Joe (brother) sound far away."  She's always complained about "loud" noises...really physically painful to hear buzzers, etc.  Well, she hasn't complained since and so far we're two months out since the last seizure.  My neice and nephew continue to have seizures, not gf, nor diagnosed cd.

My conclusions:  I guess I wonder if being Celiac predisposed her to seizures, going gf may have lowered the risk, but maybe the 1st 4 years of her life on gluten increased her risk and the inevitable occured due to "perfect conditions": lack of vitamins, sleep deprivation (just a wild life), physical exhaustion, lots of loud noises at basketball games we'd been to.  Who knows.  We make sure her schedule is as consistent as possible, limit long bursts of wild play...takes breaks to rest, decompress, drinks H20 more regularly, eats well.  So, we'll see how things go.

Thanks to all the people who responded so positively and helpfully.  I pray for those in situations that are so much more serious than ours...life can sure hand out a bundle!!!  Peace in the New Year to all.

Kate, Salmon, ID



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