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Any Celiacs Who Decided To Be Completely Grain-Free?


Evangeline

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mushroom Proficient

shroom- you're not in america??? how funny- i never even thought that you were overseas... or r u in canada?? hhmm..

:lol: :lol:

Sometimes things that look like ducks, walk like ducks and talk like ducks are not actually .......American!... but wait!!! I have a passport that says I am :D I also have a passport that says I am a Kiwi :D and when I cross the equator I put away my New Zealand pocket book and take out my U.S. pocket book with my U.S. driver's license and library card and credit card(s) and all the rest of the jolly masses of cards one has to carry :D I am a double agent :ph34r:


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cassP Contributor

:lol: :lol:

Sometimes things that look like ducks, walk like ducks and talk like ducks are not actually .......American!... but wait!!! I have a passport that says I am :D I also have a passport that says I am a Kiwi :D and when I cross the equator I put away my New Zealand pocket book and take out my U.S. pocket book with my U.S. driver's license and library card and credit card(s) and all the rest of the jolly masses of cards one has to carry :D I am a double agent :ph34r:

u have dual citizenship?? usa & new zealand??? how exotic and exciting!!!! very very interesting. i always wanted to have dual citizenship... and i always thought NZ would be great to visit- plus there's no snakes, right? so cool.. B)

mushroom Proficient

there's no snakes, right? so cool.. B)

Only the ones that hitch a ride in cargo from Australia. But we try to intercept all those :unsure:

Evangeline Explorer

For those of you trying to be grain-free, I did notice that the Gluten Society (they are grain free) has a link for purchasing grass-fed bison.

Open Original Shared Link

karenjv Newbie

I have been grain free (and LOTS of other "frees") for 8 months now, gluten free for 14 months... if anything my sensitivities have gotten WORSE. I was so hopeful that things would improve for me but they just haven't. If I stick to my 7 safe unprocessed foods I feel pretty awesome. But if I make [grain free] cookies with my kids, what I inhale makes me sick. If I walk through a bakery I get sick. If I trial a new food (in the past 3 months, I've only had the guts (ha!) to trial strawberries and asparagus), I get sick. I pray that maybe I just need more time to heal. We'll see!

Do you mind telling me what those "7 safe unprocessed foods" are?

julandjo Explorer

Do you mind telling me what those "7 safe unprocessed foods" are?

No prob! I can safely eat: chicken, beef, sweet potatoes, carrots, apples, blueberries, and olives/olive oil. For spices I can handle sea salt, black pepper, garlic and sage.

  • 2 weeks later...
Debbie B in MD Explorer

No prob! I can safely eat: chicken, beef, sweet potatoes, carrots, apples, blueberries, and olives/olive oil. For spices I can handle sea salt, black pepper, garlic and sage.

You may be onto your own publishable diet with those foods. :D I can do all those as long as I make sure I don't have any skin from the chicken. I would be much better off if I followed this list. I have said often in the last few months that I don't mind that I can't eat a long list of foods, just please someone give me the list, no matter how short, of the things I can eat." I am still working on developing this list.


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jstwnttbhealthy Newbie

i don't think i could go grain free since i'm mostley vegetarian and eggs don't agree with me. not doing dairy either. no white potatoes either.

the grains i do eat - buckwheat, quinoa, millet and rice - i soak/ferment for 24 hours before cooking. i mostly eat them for breakfast.

i also have those ridges and no moons on my fingernails. i was hoping since being almost one year gluten free that those would be getting normal again. i do take b 12 and vitamin d.

cassP Contributor

i don't think i could go grain free since i'm mostley vegetarian and eggs don't agree with me. not doing dairy either. no white potatoes either.

the grains i do eat - buckwheat, quinoa, millet and rice - i soak/ferment for 24 hours before cooking. i mostly eat them for breakfast.

i also have those ridges and no moons on my fingernails. i was hoping since being almost one year gluten free that those would be getting normal again. i do take b 12 and vitamin d.

what kind of ridges?? i had Beau's lines on my thumbnails since i was 8 ( deep horizontal lines)- they had improved before when eating fairly paleo- so i assumed they were celiac related just like other nail, teeth, and skin problems. mine did not improve last year when i went gluten free.

then i was diagnosed with thyroid disease- got on meds- and within ONE MONTH the ridges had COMPLETELY dissappeared!!!!!!! my B12 was fine.. and at this time i was still D deficient and didnt know. i didnt find out about the D deficiency and start supplements for another 4 months.

jstwnttbhealthy Newbie

i googled beau lines and that's what it looks like i have. the ridges start at the nail bed and go all the way to the end of nail. all of my fingers have them. i did have my thyroid checked a year ago and the doc said it was ok. just a few days ago i had a thryroid ultra sound done because i still suspect something is wrong with my thyroid as i'm always cold. i'm still hoping being gluten free will correct this. i'm at 11 month - waiting and watching!

cassP Contributor

i googled beau lines and that's what it looks like i have. the ridges start at the nail bed and go all the way to the end of nail. all of my fingers have them. i did have my thyroid checked a year ago and the doc said it was ok. just a few days ago i had a thryroid ultra sound done because i still suspect something is wrong with my thyroid as i'm always cold. i'm still hoping being gluten free will correct this. i'm at 11 month - waiting and watching!

it is possible to have thyroid problems while still having normal numbers.. i think it's called "Euthyroid" maybe??? but it's not "textbook".. and it can be a battle to get your doctor to work with you. my best friend is dealing with this right now- horrible Hypo symptoms, but normal numbers. well not normal... her TSH is normal but her T3 & T4 are like .1 points away from below range... but her docs wont do anything.

i asked my Endocrinologist what she would do with a patient who had all the symptoms but normal TSH, and she said she would then test the antibodies- and if they were elevated- she would consider meds.

as far as your thyroid condition normalizing after going gluten free (IF u had a problem)- from what i read on these threads- it can take up to 5 years to lower those antibodies. ??? i hope it's true- as the meds only help so much.

did u have your B12 & D levels tested too??

good luck!!

jstwnttbhealthy Newbie

hi cass, i am an optimist and believe in the body fixing itself. that might be ignorant on my part, but anything to avoid meds.

yes i did have them tested in march 2010 (b 12 = 198 and vitamin d = 21) have been taking supplements for it and got retestet just a few days ago. still waiting for results. will keep you posted to see if the supplementation has helped.

Korwyn Explorer

i don't think i could go grain free since i'm mostley vegetarian and eggs don't agree with me. not doing dairy either. no white potatoes either.

the grains i do eat - buckwheat, quinoa, millet and rice - i soak/ferment for 24 hours before cooking. i mostly eat them for breakfast.

i also have those ridges and no moons on my fingernails. i was hoping since being almost one year gluten free that those would be getting normal again. i do take b 12 and vitamin d.

If you don't mind my asking, are you vegetarian for ethical/moral reasons or are you doing it primarly/only for health reasons? If you prefer not to answer that's fine and I won't read anything into it. :)

jstwnttbhealthy Newbie

hi korwyn,

for health reasons really. i did add grass fed calf liver for that reason. growing up i used to eat all kinds of organ meats. i would not mind eating game either. don't want to turn into a carnivore and eat it every day. not sure if that would be healthy - would it?

Dr. B Newbie

It has been proven that people with celiac have an increased level of zonulin, which is said to be responsible for the opening of the junctions between the cells of the intestine. I believe that Candida roots (rhizoids), are responsible for the increased permeability because they grow through the intestinal walls, then die off, and that causes increased intestinal permeability from the holes the roots left behind.

Experiments show that insulin dependent diabetes occurs in lab rats about three to four weeks after increased

intestinal permeability. This discovery suggests that candida overgrowth, which also increases zonulin levels, could be the main contributing factor (or entirely responsible) to development of celiac disease and other autoimmune disorders such as insulin dependent diabetes, multiple sclerosis, and rheumatoid arthritis.

The paleolithic diet (an almost no grain type diet that man lived on for millions of years) works well for me. Grains have adverse proteins that travel through the intestinal walls which can cause our autoimmune system to produce antigens that attack those proteins, but also attack the protein of our healthy cells.

One might conclude that Candida is the main cause of all autoimmune disorders.

Jestgar Rising Star

It has been proven that people with celiac have an increased level of zonulin,

Experiments show that insulin dependent diabetes occurs in lab rats about......

Can you provide sources for these statements?

Korwyn Explorer

hi korwyn,

for health reasons really. i did add grass fed calf liver for that reason. growing up i used to eat all kinds of organ meats. i would not mind eating game either. don't want to turn into a carnivore and eat it every day. not sure if that would be healthy - would it?

I'm just speaking for myself here, though there is plenty of research to back this up. I get 100% of all my nutritional requirements from meat. If I cut out all non-animal products (and I have done this for up to four months at a time) I well exceed all nutritional requirements. The key is eating organic free-range meat and not stripping out the fat. Organic free-range meat is leaner. So nutritionally there is no 'need' to eat vegetables. Gary Taubes research books, FreeTheAnimal, Gnolls, are all some good resources. Your body can survive on fat or glucose. You need a certain amount of glucose, but our bodies have a mechanism (gluconeogenesis) which converts protein to glucose which is necessary for our brains and central nervous system. So if you have adequate natural fats and protein, it seems to me you can probably get away without requiring vegetables. All of that said, I do eat vegetables (salads especially) but they comprise probably less that 10% of my caloric intake.

Liver is the single most nutritionally dense food there is, especially organic. Open Original Shared Link. Take a look at what is in 4 ounces of beef liver. Not to mention that I've lost a lot of weight eliminating all grains, carbs, and processed foods. My weight loss started to slow down but I continued losing size.

Dr. B Newbie

Can you provide sources for these statements?

Here are a few references:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Are there other references you were also looking for?

Jestgar Rising Star

Thanks for posting those. The Fasono papers talk about Zonulin, but I didn't see which reference talked about the link between intestinal permeability and diabetes. Could you point that one out to me? (the first link didn't open for me at all)

Dr. B Newbie

Thanks for posting those. The Fasono papers talk about Zonulin, but I didn't see which reference talked about the link between intestinal permeability and diabetes. Could you point that one out to me? (the first link didn't open for me at all)

Open Original Shared Link

"Dr. Fasano adds that more research is needed. He is currently conducting experiments with diabetic rats. Preliminary results from his experiments show that insulin dependent diabetes occurs in lab rats about three to four weeks after increased intestinal permeability. The researchers believe the increased intestinal permeability is associated with increased levels of zonulin."

I personally believe the increased intestinal permeability is caused by candida and not caused by increased levels of zonulin. Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Probiotics and a low carb diet starves candida and prevents regrowth, so permeability will decrease after the holes from the dead roots close back up.

Woolygimp Contributor

Open Original Shared Link

"Dr. Fasano adds that more research is needed. He is currently conducting experiments with diabetic rats. Preliminary results from his experiments show that insulin dependent diabetes occurs in lab rats about three to four weeks after increased intestinal permeability. The researchers believe the increased intestinal permeability is associated with increased levels of zonulin."

I personally believe the increased intestinal permeability is caused by candida and not caused by increased levels of zonulin. Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Probiotics and a low carb diet starves candida and prevents regrowth, so permeability will decrease after the holes from the dead roots close back up.

If autoimmunity is caused by increased permeability, which I'm almost positive it is, then have you seen people with RA/Sjogren's/autoimmunity improve w/ this restrictive diet?

Both me and my sister developed autoimmunity and massive allergic problems to food I've NEVER had problems with in succession to Celiac disease. Our intestines were wrecked and it didn't take long for me to develop Sjogren's and her to develop Rheumatoid Arthritis. Almost positive both were caused by undiagnosed celiac disease.

Dr. B Newbie

If autoimmunity is caused by increased permeability, which I'm almost positive it is, then have you seen people with RA/Sjogren's/autoimmunity improve w/ this restrictive diet?

Both me and my sister developed autoimmunity and massive allergic problems to food I've NEVER had problems with in succession to Celiac disease. Our intestines were wrecked and it didn't take long for me to develop Sjogren's and her to develop Rheumatoid Arthritis. Almost positive both were caused by undiagnosed celiac disease.

I know people who no longer are insulin dependant after going on the paleolithic diet. I personally had RA and it is almost all gone. I have regained all of my flexibility. I think I personally had Sjogren's, because I couldn't really even spit, without it sticking to my lips. Now my saliva is much more liquid and I can actually drool again, like normal people can drool. Also, my nose runs like normal again, where before it never ran.

Woolygimp Contributor

I know people who no longer are insulin dependant after going on the paleolithic diet. I personally had RA and it is almost all gone. I have regained all of my flexibility. I think I personally had Sjogren's, because I couldn't really even spit, without it sticking to my lips. Now my saliva is much more liquid and I can actually drool again, like normal people can drool. Also, my nose runs like normal again, where before it never ran.

When I first started the diet, after a few days of eating nothing but beef... I had felt better than I ever had. I felt like I could run 10 miles, my awareness was through the roof, and for the time in seven years I felt amazing. I didn't have any muscle pains, exactly the opposite, and I don't ever recall having THAT much energy. It felt great.

Then things have gone down hill. First I ate some nuts and that was the last day I felt good. Then I ate some dairy a few days later, a few pieces of cheese etc. and blah.

I haven't felt that good in 24 years so something did it. I only hope it's a lasting change once I get things sorted.

jenngolightly Contributor

I think I personally had Sjogren's, because I couldn't really even spit, without it sticking to my lips. Now my saliva is much more liquid and I can actually drool again, like normal people can drool. Also, my nose runs like normal again, where before it never ran.

Me too!

celigurl Newbie

I am wondering why many Celiacs are not healing on a STRICT gluten-free diet. I read medical studies that shows many biopsies show the intestines still remained inflamed 15 years later. Obviously, something is wrong with this gluten-free diet if many people aren't healing.

I just read a blog of someone with Crone's Disease who has basically completely healed Crone's Disease by eliminating all grains completely and making a few other minor changes to his diet.

I am wondering if there are any Celiacs who have eliminated all grain completely? Are you out there? Did you find your other food allergies disappeared? I have become "allergic" to almost all foods - you name it, I can't eat it. Something is causing the intestinal permeability.

Is there anyone out there who does not eat grains and how improved their leaky gut syndrome?

My naturopath says I should go on a candida cleansing diet because candida causes intestinal permeability.

I guess I'll try it.... :(

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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