Do Celiacs Have To Avoid All Grains?

[quincy]

There is a guy on the internet who claims that ALL grains are problematic not just for people with celiac. I find this confusing because the major celiac docs do not suggest this. On top of it, this guy is charging ALOT of money to join his "society".

what gives with this. I get his free stuff and now I am afraid to eat rice or corn products which I do not have any problems with food allergy-wise.

anyone find that going completely grain free has helped them? He is claiming that people that do not go completely grain free will not heal completely...

[kwylee]

Well, I personally wouldn't pay money to join a society when it will really come down to how YOU feel when you ingest grains. I think I have read that particular individual's information out there and as I recall, he says something like the gluten in rice and corn which may not adversely affect some, may affect others.

I do have problems with rice and corn if I overindulge, but I do have a tolerance. I think the bottom line is that you have to listen to your own body because that's free!!!!!

[YoloGx]

I agree. I went on a grain free diet for instance for 10 months but it did not help me. Instead what is helping is staying off milk, salicylates and now amines as well as the gluten. Fresh brown rice as it turns out is very good for me. Well you see that is me. To say due to my experience everyone needs to do the same thing would be laughable. We are all individual. The thing is is to figure out what your body needs. The only thing I would add to the no gluten here for everyone with a problem with gluten is probably no or way reduced sugar....and eat plenty of veggies of the sort that agree with you of course! And sufficient protein and a little good healthy oil...

[alex11602]

For me a having a little bit of rice is key, because of my blood sugar issues I cannot go completely grain free so I serve a little bit of white rice with dinner, just found Namaste waffle mix for my girls which is primarily rice and will occasionally give my girls rice cakes. I definitely agree with Yolo about figuring out what your body needs though.

[BabsV]

There is a guy on the internet

Is it the doctor from Texas who's a CHIROPRACTOR but making a name for himself with treating Celiac disease? The one who wants oodles of $$ for you to sign up to "get more info" from his website? *sputter*

I'd say trust your body and its responses over what this guy says...if you don't have a problem tolerating gluten-free grains then don't worry about it.

[quincy]

Is it the doctor from Texas who's a CHIROPRACTOR but making a name for himself with treating Celiac disease? The one who wants oodles of $ for you to sign up to "get more info" from his website? *sputter*

I'd say trust your body and its responses over what this guy says...if you don't have a problem tolerating gluten-free grains then don't worry about it.

yes there is a guy in Texas who charges 69.00 to join his web site plus 12.99 a month. Celiac has put a hole in my wallet as it is, so it kinda sticks in my craw that he would charge people who have suffered from celiac to gain access to his info. I am sure he is a nice guy and he seems sincere but to make a living off of people with a disease is beyond me.

I have been looking into the FODMAP diet which restricts carbs that ferment quickly in your gut. I haven't quite figured out what to eat yet as I gained alot of weight after going gluten free...

I am down now about 15 pounds trying to get back to a good weight for me.

did anyone else go from being really skinny before dx to gaining alot of weight?

[SGRhapsodos]

I didn't gain weight but became extremely sugar addicted. I would experience hypoglycemic like symptoms and wasn't able to function. I had a lot of GI problems from pseudo grains and rice. I think it all comes down to how your body feels. I lost a lot of weight following the paleo diet (didn't need to) but was able to control it by tweaking the diet a bit. There's a lot of bogus advice and scams out there, but I recommend for you to see what feels best. If you want to, look up mark's daily apple or paleohacks or just google paleo and primal diet. Some of these websites have a lot of info and it's FREE! I'll warn you though, be aware of the forums. There's lots of people there either who are extremely overweight and are trying to lose a lot of weight or they're fitness obsessed or they take the diet to the extreme and will advise you to do things like eat 1 lb of

ox tail at dinner or something like that. A lot of people will try to give you advise that don't know whack about celiac. Take it with a grain of salt and listen to your body.

[quincy]

I didn't gain weight but became extremely sugar addicted. I would experience hypoglycemic like symptoms and wasn't able to function. I had a lot of GI problems from pseudo grains and rice. I think it all comes down to how your body feels. I lost a lot of weight following the paleo diet (didn't need to) but was able to control it by tweaking the diet a bit. There's a lot of bogus advice and scams out there, but I recommend for you to see what feels best. If you want to, look up mark's daily apple or paleohacks or just google paleo and primal diet. Some of these websites have a lot of info and it's FREE! I'll warn you though, be aware of the forums. There's lots of people there either who are extremely overweight and are trying to lose a lot of weight or they're fitness obsessed or they take the diet to the extreme and will advise you to do things like eat 1 lb of

ox tail at dinner or something like that. A lot of people will try to give you advise that don't know whack about celiac. Take it with a grain of salt and listen to your body.

yes I have been on the Daily apple forum and it was interesting. My nutritionist was talking about avoiding foods that ferment quickly in the gut and that are not absorbable and wind up going past the small intestine into the large colon and causing alot of havoc. It seems to make sense. it is called FODMAP, though I really cant pronounce what it stands for. if you google the low fodmap diet you will see the list of foods that are recommended. I guess it depends on each person and what works for them. I go through intense carb cravings as well, it is hard to break the carb cycle.

but I wonder if anyone has any info about what the guy on glutenfree society is saying that ALL grains have gluten, it seems like he is mis-using the term gluten and twisting it for his own benefit?

[Takala]

The "Texas Chiropractor" guy with his strange notions that corn and rice have gluten similar to wheat proteins has been debunked before. Gluten is just the word for grain proteins, the part that is not the outer bran layer, nor the wheat germ center, but for us, from a medical terminology standpoint, "GLUTEN" refers to the proteins in wheat, rye, barley, and spelt, which have a very unique genetic code, and which do provoke an auto immune reaction.

You may be not doing well with grain products for various reasons, but.... it is not the same thing as the celiac reaction. Your gut lining is not destroyed by your body's tissues being attacked by your own defenses, because they have been sensitized by exposure to corn or rice proteins.

Twisting it for his own benefit.... yeah.

I'm low- grain compared to most normal people, but, I'm carbohydrate intolerant as I age. If I have a problem with corn, it is usually because it was in dried flour milled grain form and probably cross contaminated with wheat or oats. This isn't the same as actually reacting to the c o r n, itself.

[Skylark]

The gluten-free society guy is just trying to scare people into giving him money.

Simple common sense applies here. If you feel better off grains, avoid 'em. If you feel fine eating grains don't worry about them because you're not doing celiac damage.

[SGRhapsodos]

yes I have been on the Daily apple forum and it was interesting. My nutritionist was talking about avoiding foods that ferment quickly in the gut and that are not absorbable and wind up going past the small intestine into the large colon and causing alot of havoc. It seems to make sense. it is called FODMAP, though I really cant pronounce what it stands for. if you google the low fodmap diet you will see

the list of foods that are recommended. I guess it depends on each person and what works for them. I go through intense carb cravings as well, it is hard to break the carb cycle.

Before I used to be grain free I had to have something sugary after every meal and then like every 2 hours after that. It was insane! I bloat a lot but my weight has remained stable, but I have this really bad pot belly and it looks weird. The key to not having the cravings is to add enough protein and fat to meals.

I checked out the fodmap diet but, I have a lot of problems with some of those foods. Citrusy fruits give me a very hard time. I guess everyone is different. I arrived at this grain free diet because I was having a lot of problems with rice and horrendous constipation. All grains constipate me (even legumes) and stay in my gut for days (I know tmi). They're delish but the thought of the pain I was going through everytime I ate them made the cravings stop. Also, sugary items like gummy bears ( my life's #1 addiction) were giving me such problems that the thought of the pain is enough to stop me from indulging. I'm pretty amazed that I can get all my carbs from fruit and it's enough for my brain and body to function. You'll be amazed how much sugar we ate that we didn't need.

I'm surprised at the amount of veggies that were on the list. I do get gassy after eating certain veggies but never made a connection. I'm going to start studying my reactions to them.

but I wonder if anyone has any info about what the guy on glutenfree society is saying that ALL grains have gluten, it seems like he is mis-using the term gluten and twisting it for his own benefit?

[IrishHeart]

did anyone else go from being really skinny before dx to gaining alot of weight?

Yes, I gained back some weight because my gut is absorbing again--as yours will. I plummeted 90 lbs. when I was deathly ill from Celiac and was emaciated and weak. Total loss of muscle tone and mass.

Since DX, I have put back about 25 lbs.--- gradually. My muscles are slowly rebounding. I feel much better! I now have to watch it so I do not get too chubby!

I am just happy to be able to enjoy food again--and keep it IN!

RE: various internet claims and "cures"--by chirpractors? FORGET it!

If someone wants $$$ from you to "cure" your celiac or give you the "secret to recovery"--it's BS.

We will tell you --the only treatment for Celiac--is a gluten-free diet. (there you go--no charge! )

Listen to your body. As far as I know, alternative grains are NOT detrimental to a celiac's gut recovery.

If you have trouble still digesting some of them because your gut it still healing, that is a different story. Avoid anything that does not agree with you. Perhaps you may wish to eat more proteins and veggies instead of carbs? (I need to take my own advice )

Best wishes to you!

[quincy]

yes I have the pot belly too. people on the IC network say the pot belly is typical of the IC condition. Do you have bladder

problems as well? urgency, frequency, collicky feeling above the pubic bone?

I am avoiding all citrus fruits because the IC diet says to, so I follow the foods listed on FODMAP and the IC diet. it is getting ridiculous because I recently had a IGG4 antigens test and I scored "severe" for milk, dairy and peanuts, and moderate for eggs. nothing left to eat! lol I have not been dx'd with IC but I dont know what else could be causing all these genito-urinary problems in me. the urologists haven't cured me yet thats for sure....

[IrishHeart]

yes I have the pot belly too. people on the IC network say the pot belly is typical of the IC condition. Do you have bladder

problems as well? urgency, frequency, collicky feeling above the pubic bone?

I am avoiding all citrus fruits because the IC diet says to, so I follow the foods listed on FODMAP and the IC diet. it is getting ridiculous because I recently had a IGG4 antigens test and I scored "severe" for milk, dairy and peanuts, and moderate for eggs. nothing left to eat! lol I have not been dx'd with IC but I dont know what else could be causing all these genito-urinary problems in me. the urologists haven't cured me yet thats for sure....

Any problems I had before DX---that are similar to those you listed? All gone.

Avoiding dairy is easy enough, even though I did not like it. I did it for 10 months after DX.

Use coconut milk. I could not eat eggs either. And I had to avoid citrus, coffee, chocolate, sugar, and soy. That was tricky.

I had a burning GI tract, so it was difficult to eat most things.

But it all subsided and I am okay now.

One question--How long have you been gluten-free???

[quincy]

Any problems I had before DX---that are similar to those you listed? All gone.

Avoiding dairy is easy enough, even though I did not like it. I did it for 10 months after DX.

Use coconut milk. I could not eat eggs either. And I had to avoid citrus, coffee, chocolate, sugar, and soy. That was tricky.

I had a burning GI tract, so it was difficult to eat most things.

But it all subsided and I am okay now.

One question--How long have you been gluten-free???

I have been gluten free since my diagnosis in April 2010. But I have had alot of problems because I had several bad sinus infections, then it was other things that they put me on antibiotics for and that has really caused me alot more trouble...

[IrishHeart]

I have been gluten free since my diagnosis in April 2010. But I have had alot of problems because I had several bad sinus infections, then it was other things that they put me on antibiotics for and that has really caused me alot more trouble...

I see. Sorry, hon. The road to healing is a bumpy ride, isn't it? I always say "Celiac---it ain't for sissies". I am still in some major bone/muscle pain and have a few other issues myself to clear up.

Hopefully, you took PRObiotics after those rounds of ANTibiotics?

Your gut flora is probably very unbalanced. We need those "good guys".

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[SGRhapsodos]

I wonder if the over using antobiotics creates other problems on it's own that aren't related to celiac. I used antibiotics for years to manage acne and I'm very sure they did some damage too. Our intestines are sensitive to begin with, then add all that chemical crap and they get even worse. I hope they're not ruined for life.

On another note, I know a lot of people that thrive on grains, but they don't have celiac. So many people who do have celiac don't feel much better after switching to gluten-free

products and many have gone grain free with good results. I'm not going to say that I'm healed or that I don't have bad days, but at least I'm not sick 5 days out of the week.

[quincy]

I wonder if the over using antobiotics creates other problems on it's own that aren't related to celiac. I used antibiotics for years to manage acne and I'm very sure they did some damage too. Our intestines are sensitive to begin with, then add all that chemical crap and they get even worse. I hope they're not ruined for life.

On another note, I know a lot of people that thrive on grains, but they don't have celiac. So many people who do have celiac don't feel much better after switching to gluten-free

products and many have gone grain free with good results. I'm not going to say that I'm healed or that I don't have bad days, but at least I'm not sick 5 days out of the week.

I take probiotics for sure. and yes I think antibiotics mess us up and can perhaps start the celiac damage process. I was taking cipro actually a few months before I began getting abdominal pains to the point where I had to get an endoscopy and thats when they discovered the damage.

[SGRhapsodos]

Wow! Let me ask you, what probiotics do you take? My dietician recommended acidophilus (liquid form) but I'm afraid to try it b/c every single probiotic I've taken constipates me horribly. I do not want to get more constipated since it's been an ongoing issue since going gluten free.

[IrishHeart]

Wow! Let me ask you, what probiotics do you take? My dietician recommended acidophilus (liquid form) but I'm afraid to try it b/c every single probiotic I've taken constipates me horribly. I do not want to get more constipated since it's been an ongoing issue since going gluten free.

Acidophilus is only ONE form of probiotics. The human gut has many different strains, so a multi-strain one may be more beneficial to you.

Probiotics should ALLEVIATE constipation and diarrhea by balancing the gut flora, so this perplexes me.

hmm...do you drink enough water throughout the day? often constipation results because of too little hydration. (people assume it is not enough fiber)

Two good ones are made by Custom Probiotics and an OTC one called Culturelle (get the Dairy Free one). My GI doc recommended the last one and it is backed by research.

Try a low dose first, then work your way up and drink a LOT of water.

Just a thought! IH

[Nadia2009]

The Internet guy from Texas isn't the only one to say all grains are bad for your health. Even Loren Cordain the paleo Dr says that grains even things like quinoa are not so healthy. I think I read rice is the least bad.

I skimmed that book quickly and maybe missed certain things but in the paleo diet from Cordain, even white potatoes and sweet potatoes aren't friendly food (for anyone not just for celiacs). Is there another paleo diet custom made for celiacs?

Right now, I have different intolerances on the top of gluten and I eat potatoes regularly. I was disappointed when reading Cordain's book...there is no ideal diet for gluten intolerant people.

[quincy]

Acidophilus is only ONE form of probiotics. The human gut has many different strains, so a multi-strain one may be more beneficial to you.

Probiotics should ALLEVIATE constipation and diarrhea by balancing the gut flora, so this perplexes me.

hmm...do you drink enough water throughout the day? often constipation results because of too little hydration. (people assume it is not enough fiber)

Two good ones are made by Custom Probiotics and an OTC one called Culturelle (get the Dairy Free one). My GI doc recommended the last one and it is backed by research.

Try a low dose first, then work your way up and drink a LOT of water.

Just a thought! IH

I take Ultra Flora DF (dairy free) by MetaGenics. It has bifido, lactobacillus and acidophilus. Its a good one. when you first take a probiotic you can feel a little loose bowel but your body will adapt pretty well. If you have constipation this will help alot.

[quincy]

The Internet guy from Texas isn't the only one to say all grains are bad for your health. Even Loren Cordain the paleo Dr says that grains even things like quinoa are not so healthy. I think I read rice is the least bad.

I skimmed that book quickly and maybe missed certain things but in the paleo diet from Cordain, even white potatoes and sweet potatoes aren't friendly food (for anyone not just for celiacs). Is there another paleo diet custom made for celiacs?

Right now, I have different intolerances on the top of gluten and I eat potatoes regularly. I was disappointed when reading Cordain's book...there is no ideal diet for gluten intolerant people.

Yes, I have heard of him as well. I was not aware of the potato being on the bad list though. Millions of asian people eat rice every day and I don't think they have these problems so it makes me question the entire premise. I think it has more to do with the processed foods that we eat that cause inflammation rather than the actual grain (other than gluten for us of course).

[mushroom]

When all is said and done, the tolerance of grains is different for all of us. You know, the old saying, "One man's meat is another man's poison." In addition to the gluten grains, I do not eat corn, oats, amaranth, millet or quinoa. Not because of choice but because of what they do to me. I do eat rice, sorghum, teff and buckwheat perfectly well. Now we can get into semantics about what are grains and what are seeds or grasses, but I am talking about the commonly accepted gluten substitutes that are not nuts or coconut or potatoes (white or sweet) And I don't know where tapioca and arrowroot belong.

[Skylark]

The Internet guy from Texas isn't the only one to say all grains are bad for your health. Even Loren Cordain the paleo Dr says that grains even things like quinoa are not so healthy. I think I read rice is the least bad.

I skimmed that book quickly and maybe missed certain things but in the paleo diet from Cordain, even white potatoes and sweet potatoes aren't friendly food (for anyone not just for celiacs). Is there another paleo diet custom made for celiacs?

Right now, I have different intolerances on the top of gluten and I eat potatoes regularly. I was disappointed when reading Cordain's book...there is no ideal diet for gluten intolerant people.

There is no ideal diet for ANY person. You have to take ideas from the various experts and cobble together a diet on which you feel healthy.