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What Do You All Think About Idea That All Grains Must Go For Many To Heal?


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#1 slee11211

 
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Posted 13 June 2012 - 09:03 AM

Hi all,

Interested to hear how others are feeling about eliminating ALL grains from diet to truly heal and stay healthy as a Celiac - I'm 9 months into diagnosis and am beginning to run across lots of information pointing in this direction. Began reading this in articles when I was researching the SCD diet (which isn't right for me, I don't have the classic GI symptoms), and then the resulting run down the Paleo/Primal path (which I am now doing).....began to run across articles and sites that are touting ALL grains being potential culprit, and that to just eliminate wheat isn't going to always be effective. (forget source, sorry, but one article talked about only 8% of adult celiacs showing healing to gut tissues after 2 yrs gluten free, even though daily symptoms were improved).

My head is sort of swimming from all this (especially after finding videos from Dr Peter Osborne), and I'm wondering what other Celiacs might think about all this. I'm sure many of you here have been researching FAR longer than I, so you might have a different take on this level of info?

Thanks for weighing in....
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#2 ravenwoodglass

 
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Posted 13 June 2012 - 10:20 AM

While there are some folks here that are totally grain free I didn't have to go that route. I just dropped the gluten grains and healed well although it did take some time and eliminating soy before I fully healed, well as fully as I will heal anyway.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 slee11211

 
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Posted 13 June 2012 - 10:42 AM

While there are some folks here that are totally grain free I didn't have to go that route. I just dropped the gluten grains and healed well although it did take some time and eliminating soy before I fully healed, well as fully as I will heal anyway.



So did you re-do your biopsy? This is what's throwing me....they are saying that people's "symptoms" are lessening (so they think they are healing), but when they re-biopsy, they find that the inflammation is not healing on just gluten-free. So basically, most of us are either not going to re-biopsy, or didn't in first place (didn't need to, my numbers were through the roof), so we just watch symptoms to judge healing. But it's the systemic inflammation that is a really big problem! Like I said, this has my head swimming....maybe it's time to stop reading, huh?

(but I wasn't feeling much better and a trip to a trusted acupuncturist showed a strong sensitivity to all grains, even tho allergy panel didn't show that, so I went full on paleo and am feeling a huge improvement - that's why this vein of research is kind of freaking me out, it appears to be working in my case, and makes me wonder if the gluten-free diet is the true prescription? And if all this research is so amazing and ground breaking, why aren't all docs tapping into it??)
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#4 1desperateladysaved

 
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Posted 13 June 2012 - 10:44 AM

I did classic gluten free for two months. I was still having alot of dizzy/fatigue symptoms. I went grain free. I am still pulling out of withdrawl after two months. But I feel better. I have energy and am not tired without a good reason to be.

Now, I am seeing some things that I am reacting to. The smell of rice cooking caused my neck glands to swell. Crumbs of gluten bread caused a rash.

I needed to be grain free, for my body to heal-and maybe forever.
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#5 Jestgar

 
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Posted 13 June 2012 - 12:03 PM

(but I wasn't feeling much better and a trip to a trusted acupuncturist showed a strong sensitivity to all grains,

I'm curious how this was tested.
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#6 Gemini

 
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Posted 13 June 2012 - 12:04 PM

So did you re-do your biopsy? This is what's throwing me....they are saying that people's "symptoms" are lessening (so they think they are healing), but when they re-biopsy, they find that the inflammation is not healing on just gluten-free. So basically, most of us are either not going to re-biopsy, or didn't in first place (didn't need to, my numbers were through the roof), so we just watch symptoms to judge healing. But it's the systemic inflammation that is a really big problem! Like I said, this has my head swimming....maybe it's time to stop reading, huh?

(but I wasn't feeling much better and a trip to a trusted acupuncturist showed a strong sensitivity to all grains, even tho allergy panel didn't show that, so I went full on paleo and am feeling a huge improvement - that's why this vein of research is kind of freaking me out, it appears to be working in my case, and makes me wonder if the gluten-free diet is the true prescription? And if all this research is so amazing and ground breaking, why aren't all docs tapping into it??)


I think this whole idea that you have to give up all grains to heal is pure horse-pucky, for most Celiacs. I was the same as you....my numbers were off the charts and I refused the biopsy as I was so very, very ill at the time of diagnosis. Actually, I have as little to do with doctors as humanly possible and I have healed fine. How do I know this? I have 3 other autoimmune conditions from long term, undiagnosed Celiac and they are doing a lot better also since diagnosis and my following a strict gluten-free diet. All of my inflammatory markers are coming down also, with each blood work I have done so if that isn't enough to convince me, I should hang it up. Unless I'm bleeding from somewhere, no one is scoping me. The doctors already made enough mistakes with me and I don't trust them.

Not all Celiacs are alike and each person has to figure out which is the best route to follow when trying to heal. I am happy you feel better but you might be able to add some grains back in at a later date....if you want to. Just make sure your diet is as balanced as possible because you can develop nutritional deficiencies from cutting out all grains.
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#7 benXX

 
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Posted 13 June 2012 - 12:32 PM

Trying to find a solution for my problems, I started on SCD. But being dairy intolerant, it wasn't the right diet for me. From there I went onto anti-Candida Diet and ended up on Paleo. I must say, I have never felt so good as on the Paleo diet. It was absolutely great.

However, after 4 months, I had to stop the Paleo diet, to go on an horrible 2 month gluten-challenge for my endo.

I truly believe the Paleo diet is the best way to allow your intestines to heal.
No starch/dairy/sugar/legumes/alcohol, no ready made stuff full of chemicals, just plain whole food.

Only problem I had with the Paleo diet was the weight loss. I'm waiting to gain some weight, in order to be able to go on Paleo again.
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Ben (58)

Diagnosed Celiac 12-Apr-2012
Dairy intolerant, B12 malabsorption, Bile acid malabsorption.
Osteopania
Lifetime of misdiagnoses.

2008-2011 Lived in Thailand, almost symptom free.
Now only eat Thai food.
Easy to cook - gluten/dairy free - delicious

#8 ravenwoodglass

 
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Posted 13 June 2012 - 01:25 PM

So did you re-do your biopsy? This is what's throwing me....they are saying that people's "symptoms" are lessening (so they think they are healing), but when they re-biopsy, they find that the inflammation is not healing on just gluten-free. So basically, most of us are either not going to re-biopsy, or didn't in first place (didn't need to, my numbers were through the roof), so we just watch symptoms to judge healing. But it's the systemic inflammation that is a really big problem! Like I said, this has my head swimming....maybe it's time to stop reading, huh?

(but I wasn't feeling much better and a trip to a trusted acupuncturist showed a strong sensitivity to all grains, even tho allergy panel didn't show that, so I went full on paleo and am feeling a huge improvement - that's why this vein of research is kind of freaking me out, it appears to be working in my case, and makes me wonder if the gluten-free diet is the true prescription? And if all this research is so amazing and ground breaking, why aren't all docs tapping into it??)


I didn't have a biopsy until five years after diagnosis and I had healed well by then. My doctor diagnosed me without a biopsy because he demanded a gluten challenge which came close to killing me. Literally. The day of the biopsy I was laying on the bathroom floor bleeding.

If grain free is working well for you then keep it up. You can always try adding some of the gluten-free grains in after you have been doing well for a few months if you miss them.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#9 IrishHeart

 
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Posted 13 June 2012 - 01:42 PM

I'm curious how this was tested.


I am, too. You said "a trip to a trusted acupuncturist showed a strong sensitivity to all grains, even tho allergy panel didn't show that"

What test was performed?
  • 0

"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


#10 deb445

 
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Posted 13 June 2012 - 03:44 PM

Hi all,

Interested to hear how others are feeling about eliminating ALL grains from diet to truly heal and stay healthy as a Celiac...
My head is sort of swimming from all this (especially after finding videos from Dr Peter Osborne), and I'm wondering what other Celiacs might think about all this.

Thanks for weighing in....


I'm curious too. It concerns me that it is taking a long ttime for some people to heal. This makes me wonder if there isn't something in addition to the usual "wheat, barley, rye and sometimes oats" elimination that has to take place.
As a trial, I have eliminated corn - this pains me more than eliminating wheat, to be honest. I miss a bowl of popcorn more than bread! And yet, I feel even better! More clear minded. Less panic when dealing with the daily grind. Far more patient, when I didn't think it was even necessary. Can it get even better? I'm willing to try cutting out more. One thing at a time - the skeptic in me is open minded. :D

Did your acupuncturist use muscle testing for other grains? Our energy system is quite complex, isn't it.
  • 0

Gluten free for 5 years. Dairy free for years, but now OK with grassfed dairy.

Grain free for 2 years and now pain free.

A dedicated kitchen, a new passion for whole foods, Paleo inspiration

BLACK SEED and MSM has made a world of difference.

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#11 GFinDC

 
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Posted 13 June 2012 - 05:34 PM

I went grain-free for a while. It didn't seem to make any real difference for me except for rice. White rice did a number on me, but that is probably a sugar related problem not due to the grain aspect so much, but the fast acting carbs. Grains are often used in baked goods and can have blood sugar affects due to the glycemic index being high. So you may get relief form going grain free but it may be a blood sugar thing instead of a grain thing. Just mentioning it so you keep an open mind about it.

I don't do well with flax seeds though, or any unground seed shell like pumpkin seeds. Tears me up it does.

The other thing with brown rice is they say it has some arsenic in it. Mostly in the hull. So that is another possible impact from a grain. There was a story about that not long ago basically warning people (including celiacs) to beware of eating too much brown rice, due to the arsenic levels.

The other bad thing about grain is it can get stuck in between your teeth, and that is very unsightly. And if it is out in a field it does attract crows. But you can make those seed grains paintings with it, so it's not all bad.
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#12 woodnewt

 
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Posted 15 June 2012 - 11:55 AM

Hi all,

Interested to hear how others are feeling about eliminating ALL grains from diet to truly heal and stay healthy as a Celiac - I'm 9 months into diagnosis and am beginning to run across lots of information pointing in this direction. Began reading this in articles when I was researching the SCD diet (which isn't right for me, I don't have the classic GI symptoms), and then the resulting run down the Paleo/Primal path (which I am now doing).....began to run across articles and sites that are touting ALL grains being potential culprit, and that to just eliminate wheat isn't going to always be effective. (forget source, sorry, but one article talked about only 8% of adult celiacs showing healing to gut tissues after 2 yrs gluten free, even though daily symptoms were improved).

My head is sort of swimming from all this (especially after finding videos from Dr Peter Osborne), and I'm wondering what other Celiacs might think about all this. I'm sure many of you here have been researching FAR longer than I, so you might have a different take on this level of info?

Thanks for weighing in....

Currently the research says celiac gluten intolerance is related specifically to certain grains including wheat, rye, barley, spelt (and a few others), but not to other grains such as corn, rice, or millet. As far as I know, there is no scientific research pinpointing other grains as culprit in celiac disease gluten intolerance.

However, I think recovery and tolerance of non-gluten grains likely depends on a person's overall state of health. There can be a lot more than just the issue of gluten intolerance when someone has celiac disease - there can be concomitant issues of microbial dysbiosis or other inflammatory or allergic conditions causing additional digestive problems that may interfere with healing. Any chronic inflammation will interfere with healing. Period. It is a very complex issue involving food biochemistry, immunology and microbiology and will certainly not be clarified until much more research is done, especially in the field of bioinformatics.
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#13 T.H.

 
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Posted 17 June 2012 - 03:30 AM

I've come to think that we each have our own, individual optimal diets. Whatever strengths and weaknesses our genetics gifted us with, whatever injuries we've sustained in life, whatever we're exposed to in our environments - it's all going to have an effect on what diet does best with us, IMO.

The gluten free diet is a clear one for all us Celiacs, but the grain free one, not as much.

However, we're all competent adults, and usually ones who pay attention to our health because we've had to do so. It seems to me that some people do just fine with grains, some people are knocked flat by 'em, and they are typically aware enough of their own bodies to tell the difference, you know?

Whether it's the grains themselves, or GMO issues, or pesticides, or whatever, if it works for some people to avoid it, more power to 'em. God knows I've struggled enough to figure out my ridiculous body that I'm always happy to support anyone who's found the answer to their own health issues. :D

As for myself, if I eat grains, I'm sick. My kids' health issues are much better when they have a low-to-no grain diet. Previously, when eating grains, I had vitamin deficiencies and other medical problems that wouldn't resolve until I made some major dietary changes, including going grain free.
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#14 IrishHeart

 
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Posted 17 June 2012 - 05:07 AM

T H and WOODNEWT

Your thoughts certainly sum up the "wild adventures of being a celiac". :)

Individuals have different recovery times and different "guts" and
health situations and we need to choose what works best for our own bodies.
  • 0

"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 a1956chill

 
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Posted 17 June 2012 - 05:27 AM

I am basically grain free ,except rice and occasionally corn.
I was considering switching to brown rice until I read this :P

The other bad thing about grain is it can get stuck in between your teeth, and that is very unsightly. And if it is out in a field it does attract crows. But you can make those seed grains paintings with it, so it's not all bad.

Honestly I dont know anymore , some times I feel like food is trying to kill me :ph34r:

My PCP wants me to limit my carbs (possible insulin resistance ) for the next 3 months . So depending on my labs I may go totally grain free.
  • 0

Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing





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