The Gluten Docs & Seizures-Good News!

[googly389]

They say the best test is 30 days gluten free. BUT thats not as easy as it seems. Gluten hidden in many things like toothpaste and meds.

Ive been watching this site lately... It seems good to me. Heal the gut (can take weeks to years) and then get back, one at a time to what works for you.

http://www.breakingtheviciouscycle.info/

They say its a geat diet for autism and brain fog.

joan*

Yea I went on it sorta off and on between August and October w/o a whole lot of noticeable results. Then again, if you read my story under my first thread, you'll see mine were never too severe (complex partials that are now controlled *knock on wood*). However, I really didn't experience any less auras. But, I'm about to go on it again and stick with it this time. I now know it may take up to 2 years for me to heal since I've been consuming gluten and junk food since I was 10 and I'm now about to be 20!

[joan]

If it helps, it will be worth the time you invest now. They say once you heal your eating habits can pretty much go back to semi normal : ) No matter how mild your seizures are, would be nice to be the healthiest you can be and feel better.

I wish you luck and keep us posted. Im working on taking the plunge. But Im making the whole house gluten free and it aint easy. Slowly but surely, I think they are onto me*

joan*

[Zoe]

If it helps, it will be worth the time you invest now. They say once you heal your eating habits can pretty much go back to semi normal : ) No matter how mild your seizures are, would be nice to be the healthiest you can be and feel better.

I wish you luck and keep us posted. Im working on taking the plunge. But Im making the whole house gluten free and it aint easy. Slowly but surely, I think they are onto me*

joan*

The time to get a sense of if the diet will work is longer, as it takes time to heal a physically injured digestive track and turn back the chronic inflammation.
Check out http://www.celiac.com and Dr. Lewey's site, http://thefooddoc.com/index.html. You should find a lot of information there on starting the diet.
I recently found an excellent bread mix that is made by Bob's Red Mill. It's available in many health food stores-or you can ask yours to order it. The mix makes a humongous loaf in a nine inch pan. Too big to easily fit in the toaster. So I add a cup of gluten free flour, like sorghum or millet, an extra 2/3 cup of milk, let it rise for a full hour and am getting two very good 8" loaves of bread. This is extremely easy to make too, no kneading or other extra work. It can be tough to set up the diet, because you've no reason to be familiar with the alternative flours, recipes, etc. But it is much easier now and there are a lot more gluten free materials and resources available.
Here's a super super easy peanut butter cookie recipe.

Preheat oven to 350f.

1 cup organic peanut butter
1 large egg
1 cup sugar
1/4 tsp baking soda

Place egg in medium size mixing bowel and blend slightly on low speed. Blend in the peanut butter, baking soda and sugar. Drop by rounded tablespoonfull on large cookie sheet. Bake for 10-12 minutes or until tops are dry to touch.
After cookies are cool: place a small piece of bread (gluten free) in the storage jar with the cookies. They will absorb the moisture and it keeps them from drying out.

[RobinN]

Recipes for those with food allergies/

[Zoe]

Recipes for those with food allergies/

Thanks!
Hugs for you!

[Zoe]

We now have a group going on Diet and Seizures so am moving the discussion there so it doesn't get confusing having too many posts to track. Here's the link and am posting some new material today.
http://www.coping-with-epilepsy.com/...disorders.html

[emorar]

zoe,

i just read a post on this website this morning...the date was from 2005, but your name caught my attention. i have a 6yr old "zoe" who has had seizures since 1yr old. meds didn't work, and considering trying a gluten free diet. she has some other symptoms that make me wonder if seizures are caused by something food related. however, i'm quite overwhelmed wondering where to start. do i just go the store and buy gluten free foods? should i have her tested? how do i know if i should remove milk products too?

any starter ideas would be helpful. i read several of your posts and am encouraged by your story....plus, i love your name!

erin

[epileric]

TORONTO -- Health Canada says it's making a few changes to its proposed regulatory amendments for the labelling of food allergens, gluten sources and sulphites.

In a statement Monday, it said one of the changes is the development of Canadian criteria for the establishment of new priority food allergens.

http://www.ctv.ca/servlet/ArticleNew...922?hub=Health

[milkymum]

I was told about a gluten free diet yesterday for my 2 year old who has absence seizures. I never believed this but know wow somuch details I am going to have to really think know aboiut what diet would sort my son best, a gluton free or a ketogenic diet which is high fat adorquat protein and low carbs which has to be monitored by both a neurologist and a dietiction.

[RobinN]

My suggestion Milkymum, is go for the gluten free to begin with. Actually a reduced refined carb diet is even better. It is easy to combine these ideas. The Keto Diet, needs to be monitored by a doctor, and over time can be very hard on the body. You can get similar results from the Modified Atkins Diet.

It has certainly helped my daughter, and others on this forum.
We will support you in whatever route you choose.

[milkymum]

Thanks for that dutchs mom I was goingot send you a PM to ask for your advcie on the ketogenic diet as I was imformed by anothe rmember that you have experience with this diet. I will continue my rearch and keep and open mind on them all and when I see the neurologist-professor again in January I will have along discussion about the diets I have found and which one I feel would suit my son best. He is a very lively toddler and is a right handful so I need to make sure he gets th eright amount of energy from his food to keep him going

[gregm]

After 48 years of living with epilepsy with no cause being diagnosed I discovered that although I did not have celiac disease, when I eliminated gluten from my diet that my seizure activity stoped. I am still in the early stages of gluten free living but have had enough positive results that I want to share with others. My seizures were mainly at night. I also had frequent headaches which have gone away. I confirmed my sensitivity to gluten with a DNA test wich turned up markers that showed a strong predispoistion to gluten intolerance.
I would love to hear your story and/or share more of mine. Drop me a line if you are interested.
Greg

[RobinN]

Greg - thanks for sharing that information. Wonderful News!
I am sure it will be inspiration for others to eliminate the ingredient from their diet.
Keep up the positive results.

[gregm]

Robin,

You are welcome. Gluten is in so many products that it really takes a bit of homework to design a diet that is gluten. Fortunatly I love to cook and be creative.
Good luck to you in your process.

Greg

[RobinN]

You should find this list alarming. It’s estimated that only 6% of people with gluten sensitivity or Celiac Disease are properly diagnosed when going to a doctor. It's one of the top ten misdiagnosed diseases. When it is diagnosed, it averages 10+ years after symptoms occur.

• Weight gain
• Abdominal pain
• Fatigue
• Weakness
• Bloating
• Lactose intolerance
• Headaches
• Constipation
• Diarrhea
• Depression
• Respiratory problems
• Inflammation, swelling
• Hair loss
• Acne
• Lupus, autoimmune
• Nausea
• Vomiting
• Irregular stool
• Acid reflux
• Gas
• Muscle cramping
• Nosebleeds
• Low blood sugar
• Migraines
• Joint pain
• Anxiety
• Bruising easily
• Canker sores
• Early Osteoporosis
• Rosacea
• Eczema
• Unexplained weight loss
• Seizures
• Teeth deficiencies
• Vitamin deficiencies
• Mood disorders
• Infertility
• Iron-deficiency anemia
• Intestinal lymphoma
• Adenocaricinoma
• Miscarriage
• Allergies

[epileric]

New research suggests celiac disease can develop at any age -- even in seniors who seemed for decades to be able to eat the foods that trigger the autoimmune disease.

http://www.ctv.ca/CTVNews/Health/201...gnosis-100928/

[Chel]

I had a hot Chai tea latte. I started drinking it, and felt bad

Hi Molly97

I don't know if you've been following any of my posts (I'm new here) but one of my triggers is Chai tea... With or without milk (I drink it both ways), my trigger is an ingredient in the tea.

Cheers
Chel

[Chel]

It’s estimated that only 6% of people with gluten sensitivity or Celiac Disease are properly diagnosed when going to a doctor. It's one of the top ten misdiagnosed diseases. When it is diagnosed, it averages 10+ years after symptoms occur.

One is born with Celiac (Coeliac, in my part of the world) Disease. Most of us are into middle age when we are diagnosed, and most often by accident. In my case, I was diagnosed during a "gluten crisis", because my income had been severely cut, and my two meals a day were a sandwich, and two slices of toast - both wheaten bread, which I could buy for 99c a loaf. Not knowing I was coeliac, this made me very ill, so off to the doctor, bloods taken, etc etc. I was 36.

So I had lived with the condition for 36 years - 36 years of almost everything on your list, RobinN - and no doctor put the pieces of the puzzle together. I have reversed almost all of it, including the osteoporosis.

I've been gluten free (GF) for over 10 years, strictly GF (there's a difference, when you become 'educated' about the hidden gluten) for about 4 years. My seizures have only started in the last year. So there can be other factors - certainly in my case hormones, possibly the brain atrophy... neurologist appt tomorrow, so we'll see.

Anyway, I'm going offline for a while (I mean weeks) shortly, but when I return, will be more than happy to help members out with the gluten free stuff. It really is hidden everywhere. I'm not familiar with US labelling laws, but I know in Australia we have to know our additive numbers to interpret some of the wheat-derived colours and preservatives, for example.

I'd better stop there, or I'll start writing War and Peace! I have cases to pack!

Interesting to note this study is in Sunnyvale - I'll wave on my way past LOL

Chel

[RobinN]

I am sure you will be a tremendous help. I still struggle with the info, but I have had a great teacher in DogtorJ.

Ah I wish I could see you wave, Sunnyvale is quite a bit north of me. It should be lovely up there at this time of the year. I will be interested to hear what the study is about.

Be well.

[Chel]

I will be interested to hear what the study is about.

I realised after posting that the forum is within walking distance of where I'm staying. Not sure I can convince my brother that I need to spend one day of our only weekend together in a health forum, though! However, I've printed it out, just in case...

It would certainly be interesting.

Chel