Epilepsy and Celiac Disease

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ln1

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Hello all,

Has anyone on here been diagnosed with E and Celiac Disease? I ask because I am interested to see if you notice an increase in seizures or other neurological symptoms if you eat gluten.
 
I have both conditions, but I can't say if eating gluten increases my seizures because when you have celiac disease you cannot consume gluten. Consuming gluten when you have celiac not only cause GI issues like pain, bloating, etc. it can also damage the liver and pancreas, and increases the risk for developing other auto-immune diseases. But back to your original question: there are some people on other forums who say consuming gluten causes an increase in seizures, but most of these people have abnormal MRIs such as white matter abnormalities and calcifications in certain areas of the brain.
 
masterjen said:
I have both conditions, but I can't say if eating gluten increases my seizures because when you have celiac disease you cannot consume gluten. Consuming gluten when you have celiac not only cause GI issues like pain, bloating, etc. it can also damage the liver and pancreas, and increases the risk for developing other auto-immune diseases. But back to your original question: there are some people on other forums who say consuming gluten causes an increase in seizures, but most of these people have abnormal MRIs such as white matter abnormalities and calcifications in certain areas of the brain.
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Thanks for your input, masterjen. Celiac runs in my family. I had a variety of issues for years that no specialist could figure out. I decided to cut out gluten and dairy because they seemed to be big issues for me. Within a short period of time of doing so, my symptoms "magically" disappeared.

Eventually, my gastroenterologist decided he wanted to do an upper GI and biopsy, which meant I had to re-introduce gluten in order for them to get a more accurate reading. About a week after doing so, I was in bed, felt like I had the flu, joint pain, neuropathy, etc. I had to eat gluten for a few more weeks before the procedure, but decided it wasn't worth me being so sick, so I never had it done or got an official diagnosis.

I did decide to test myself a few more times with the on / off gluten thing, and had the same symptoms. I came to the conclusion that at the least, I have a gluten sensitivity.

I've been very careful with avoiding gluten, but ingested some for a couple of days without knowing it. I started getting those weird feelings like maybe a simple partial was near, but a day or so after realizing I was getting gluten in my system, I stopped it, and was fine.
 
 
ln1 said:
Thanks for your input, masterjen. Celiac runs in my family. I had a variety of issues for years that no specialist could figure out. I decided to cut out gluten and dairy because they seemed to be big issues for me. Within a short period of time of doing so, my symptoms "magically" disappeared.

Eventually, my gastroenterologist decided he wanted to do an upper GI and biopsy, which meant I had to re-introduce gluten in order for them to get a more accurate reading. About a week after doing so, I was in bed, felt like I had the flu, joint pain, neuropathy, etc. I had to eat gluten for a few more weeks before the procedure, but decided it wasn't worth me being so sick, so I never had it done or got an official diagnosis.

I did decide to test myself a few more times with the on / off gluten thing, and had the same symptoms. I came to the conclusion that at the least, I have a gluten sensitivity.

I've been very careful with avoiding gluten, but ingested some for a couple of days without knowing it. I started getting those weird feelings like maybe a simple partial was near, but a day or so after realizing I was getting gluten in my system, I stopped it, and was fine.
Click to expand...

The one advantage of the endoscopic exam is that it will show definitively if you have celiac or not, and if it turned out you did not then you may not have to worry about issues like cross-contamination of gluten free foods with foods that contain gluten. Having said that, though, I don't blame you for not not wanting to go back to gluten if it made you that sick when you did. There is a blood test that can be done to measure levels of certain antibodies, and if the results are "positive" an endoscopy is the next step. Have you had the blood test? I don't know if this is influenced by having gluten in your system or not, by your GI doc would know.

If you are planning on avoiding gluten, be vigilant and avoid all gluten. As you have learned going gluten free cannot be a hit and miss affair :) To take things one step further if you want to go on the assumption you do have celiac disease, you will need to make sure to avoid cross contamination as well. Just a very small number of examples: get your own toaster for GF bread, make sure cutting boards and utensils are thoroughly cleaned, make sure you buy only those products that are labeled GF or look them up on the internet or call the manufacturer if the label suggests there are no gluten products in them because the item could have been processed on a manufacturing line that also manufactures gluten containing products. Manufacturers are very good when you call them.

Sorry for the long blabber. I had to learn all this by trial and error 6 years ago, and I'd like to save you some of the error part lol!
 
masterjen said:
The one advantage of the endoscopic exam is that it will show definitively if you have celiac or not, and if it turned out you did not then you may not have to worry about issues like cross-contamination of gluten free foods with foods that contain gluten. Having said that, though, I don't blame you for not not wanting to go back to gluten if it made you that sick when you did. There is a blood test that can be done to measure levels of certain antibodies, and if the results are "positive" an endoscopy is the next step. Have you had the blood test? I don't know if this is influenced by having gluten in your system or not, by your GI doc would know.

If you are planning on avoiding gluten, be vigilant and avoid all gluten. As you have learned going gluten free cannot be a hit and miss affair :) To take things one step further if you want to go on the assumption you do have celiac disease, you will need to make sure to avoid cross contamination as well. Just a very small number of examples: get your own toaster for GF bread, make sure cutting boards and utensils are thoroughly cleaned, make sure you buy only those products that are labeled GF or look them up on the internet or call the manufacturer if the label suggests there are no gluten products in them because the item could have been processed on a manufacturing line that also manufactures gluten containing products. Manufacturers are very good when you call them.

Sorry for the long blabber. I had to learn all this by trial and error 6 years ago, and I'd like to save you some of the error part lol!
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My primary physician did the blood test first (before I went GF) and it came back negative. However, because of my symptoms and the fact that my sister has Celiac, she recommended I see the gastroenterologist.

You are so right about being vigilant when it comes to avoiding gluten. Since I started a year ago, I've only been out to eat twice. One was at a GF only place and the other was at a place where the owner has celiac and I had the opportunity to have a lengthy conversation with him before ordering. :)

I determined the surprise glutening I got was from something I was drinking. I can't remember the brand, but some of their drinks are GF and others are not. Let's just say I will never assume again.

Thanks again for all of the information. I sincerely appreciate you taking out the time!
 
ln1 said:
Hello all,

Has anyone on here been diagnosed with E and Celiac Disease? I ask because I am interested to see if you notice an increase in seizures or other neurological symptoms if you eat gluten.
Click to expand...


Although I do not have Celiac Disease, as far as I know. I do suffer from (IBS) irritable bowel syndrome & (UC) ulcerative colitis. Which was brought on by the numerous AEDs I've taken over the years. That also lead me to have kidney stones & gallstones. Several years back I needed to have my gallbladder removed. In a few weeks I am seeing a new gastroenterologist for updated testing. Hopefully I can get a better plan for treating my IBS & UC. If that means going Gluten Free, then fine.

As for my CPS they have been under control since my RTLS.
 
If going gluten free is a recommendation for you by GI doc BIGMAN, I hope it brings you relief. As a single case report only: I have a friend with severe Crohn's (different from yours, I realize) that has lessened a moderate amount by him eating gluten free.
 
New to forums was just reading about gluten and seizures. Picked up Wheat Belly by William Davis, MD am on day 2 of no wheat lifestyle change (just cause - unrelated to my epilepsy). Was reading a section of the book where he discussed the brain and how damaging wheat can be. and he began by introducing these crazy scary disorders gluten encephalopathy, dementia, cerebeller ataxia.

Then he talks seizures (sparsely)

“Gluten sensitivity can also show itself as seizures. The seizures that arise in response to wheat tend to occur in young people, often teenagers. The seizures are typically of the temporal lobe (just beneath the ears) . . . People with temporal lobe seizures experience hallucinations of smell and taste, odd and inappropriate emotional feelings such as overwhelming fear for no cause, and repetitive behaviors such as smacking the lips or hand movements. A peculiar syndrome of temporal lobe seizures unresponsive to seizure medications and triggered by calcium deposition in a part of the temporal lobe called the hippocampus (responsible for forming new memories) has been associated with both celiac disease and gluten sensitivity. Of Celiac suffers, from 1 to 5.5 percent can be expected to be diagnosed with seizures. Temporal lobe seizures triggered by wheat gluten are improved after gluten elimination. One study demonstrated that epileptics who experience the much more serious generalized (grand mal) seizures were twice as likely (19.6 percent compared to 10.6 percent) to have gluten sensitivity in the form of increased levels of antigliadin antibodies . . . It’s a sobering thought that wheat has the capacity to reach into the human brain and cause changes in thought, behavior, and structure, occasionally to the point of provoking seizures.”

I have a love-hate relationship with this passage. Some of it seems legit, some seems as though he is using seizures to hammer home the wheat is bad-which it is but study seizure disorders a little. Wheat doesn’t cause seizures spikes in the brain do-wheat effects the brain-break it down. He makes it sound like toast causes a seizure when really it’s so complex the effect of cd and epilepsy. Seems uncommon too.

But my reading of this, my interpretation is if someone young and healthy are suddenly having temporal lobe seizures it could be caused by gluten.
 
I thought 1% of the general population had epilepsy, so finding 1%-5.5% of celiacs having seizure disorders is not surprising considering CD is an autoimmune disorder and leads to malabsorption/ malnutrition/ nutrient deficiencies and all of these can lead to seizures.

CD has a genetic component and more and more genetic research is finding co-morbidity with autoimmune disorders and the epilepsies such as diabetes and epilepsy, not hard to imagine some genetic overlap between CD and seizures.

I will say a LOT of what is written today about gluten, gluten sensitivity and celiac disease is total hyperbole, with the exception of the true celiacs and possibly a few gluten sensitive people, for the majority, a low gluten diet is just the latest fad diet with wheat as the boogieman instead of fat or sugar or all carbs, or saturated fats or sodium or - or - or.
 
There are definitely a lot of theories by "experts" that can cause confusion to the common person. I've come to the conclusion that sometimes you may only get the right answer for you if you listen to your body. Don't get me wrong, there are many excellent doctors out there, but it's impossible for them to be 100% accurate, so we have to advocate for ourselves and do our due diligence to ensure we do what's within our power to be healthy.
 
1%-5.5% of celiacs having seizure disorders is not surprising considering CD is an autoimmune disorder and leads to malabsorption/ malnutrition/ nutrient deficiencies and all of these can lead to seizures.
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Recent studies suggest that "people with autoimmune disease are almost four times likelier to have epilepsy than are people without autoimmune disorders." So there may be a subset of epilepsy, perhaps with a genetic component, that features co-occurring autoimmune disorders such as celiac disease or lupus. For more about "automimmune epilepsy" see http://www.mayoclinic.org/medical-p...osciences/new-approach-to-autoimmune-epilepsy
 
If you able to read daily mail online yesterday paper double spread about this very thing.i going try gluten free diet
 
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