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Do Celiacs Have To Avoid All Grains?


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28 replies to this topic

#1 quincy

 
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Posted 05 April 2012 - 09:10 AM

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...
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#2 kwylee

 
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Posted 05 April 2012 - 09:24 AM

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!!!!!
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K Wylee

Gluten Intolerant, Positive test, June 2010
Casein sensitivity, Positive test, June 2010
Reactive to soy, most processed foods & preservatives, June 2010

#3 yolo

 
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Posted 05 April 2012 - 09:41 AM

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...
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Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#4 alex11602

 
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Posted 05 April 2012 - 09:55 AM

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.
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#5 BabsV

 
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Posted 05 April 2012 - 10:17 AM

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.
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#6 quincy

 
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Posted 05 April 2012 - 10:24 AM

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?
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#7 SGRhapsodos

 
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Posted 05 April 2012 - 03:26 PM

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.
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#8 quincy

 
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Posted 05 April 2012 - 07:55 PM

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?
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#9 Takala

 
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Posted 05 April 2012 - 08:27 PM

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. :rolleyes:

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.
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#10 Skylark

 
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Posted 05 April 2012 - 09:51 PM

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.
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#11 SGRhapsodos

 
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Posted 06 April 2012 - 04:05 AM

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?
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#12 IrishHeart

 
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Posted 06 April 2012 - 05:35 AM

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? :rolleyes: 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 :lol: )

Best wishes to you!
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

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"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#13 quincy

 
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Posted 06 April 2012 - 05:38 AM

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....
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#14 IrishHeart

 
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Posted 06 April 2012 - 05:46 AM

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???
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#15 quincy

 
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Posted 06 April 2012 - 07:08 AM

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...
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