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"gluten Free Is All The Rage Now"


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30 replies to this topic

#16 lucia

 
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Posted 16 August 2010 - 11:31 PM

The guy who diagnosed me treats his RA with gluten free diet. He isn't celiac. He is off RA meds entirely and totally pain free on a gluten free diet.


I would put him in the category of gluten intolerant. His body is clearly reacting to gluten.

I guess, then, the question is if Gwyneth Paltrow and others who inconsistently follow a gluten-free diet have a medical benefit from it. I would never discourage someone from abstaining from gluten, but I wouldn't encourage it as a health priority either unless there was a good reason for it.
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#17 ravenwoodglass

 
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Posted 17 August 2010 - 04:19 AM

I went through pretty thorough testing and do not have the genes commonly associated with celiac, so I feel pretty confident that I'm 'just' non-celiac gluten intolerant. I think most of the symptoms that I've had resolve - the bloating, the headaches/brain fog, fatigue etc, are symptoms that I think a lot of people who don't think they have a problem with gluten find resolve when they follow a fad diet like this. Whether it's wheat or gluten, a lot of people feel better when they cut down.

But the symptom most people just doing this as a fad diet wouldn't consider but the one that interests me most is my balance problems. I have consistently failed the Romberg test (where you put your feet together, close your eyes and if you're me, promptly tip over) for years. My GP did a bunch of other neurological tests and didn't seen anything that concerned her so it didn't go any further. But in all my research I kept finding examples of people who tested negative to celiac but showed an improvement to their balance problems when they went strictly gluten free. Since eliminating gluten I get D, stomach cramps and overwhelming fatigue if I get glutened so I've been very careful and I'm confident I'm as 100% as I can be. And it's made a startling difference to my balance. A month ago I re-tried the test and I was better - and I did it again last night and was amazed, it was nearly normal.

So if 1 in 133 people have celiac, and many more know from symptoms that they are gluten intolerant and there are all those autistic kids seeing marked improvement on Gluten-free Casein-free diets and people with MS and then people like me with the balance problems... I really wonder just how many people truly are completely unaffected by gluten*?? Sure a lot of the gluten free products are a lot more refined and sugary than the originals so everyone swapping them isn't idea, but I don't think either they or the originals are vital in our diets. Bread sure is tasty but there are other more nutritious foods. It's popular because it's tasty, pretty cheap, easy to use and filling - it's not vital to anyone's diet, not like vegetables are.


What you are describing so well is gluten ataxia. Gluten can attack many organs other than the gut for years before gut symptoms show up, if they do. Doctors unfortunately don't realize this. You can be celiac with no gut symptoms and it sounds like you are someone who fits in this catagory. I think the blood test and biopsy are likely more accurate for folks that have gut symptoms rather than stuff like joint or brain impact so alot of folks that could be helped aren't.
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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)

#18 Skylark

 
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Posted 17 August 2010 - 09:28 AM

I went through pretty thorough testing and do not have the genes commonly associated with celiac, so I feel pretty confident that I'm 'just' non-celiac gluten intolerant. I think most of the symptoms that I've had resolve - the bloating, the headaches/brain fog, fatigue etc, are symptoms that I think a lot of people who don't think they have a problem with gluten find resolve when they follow a fad diet like this. Whether it's wheat or gluten, a lot of people feel better when they cut down.

But the symptom most people just doing this as a fad diet wouldn't consider but the one that interests me most is my balance problems. I have consistently failed the Romberg test (where you put your feet together, close your eyes and if you're me, promptly tip over) for years. My GP did a bunch of other neurological tests and didn't seen anything that concerned her so it didn't go any further. But in all my research I kept finding examples of people who tested negative to celiac but showed an improvement to their balance problems when they went strictly gluten free. Since eliminating gluten I get D, stomach cramps and overwhelming fatigue if I get glutened so I've been very careful and I'm confident I'm as 100% as I can be. And it's made a startling difference to my balance. A month ago I re-tried the test and I was better - and I did it again last night and was amazed, it was nearly normal.

So if 1 in 133 people have celiac, and many more know from symptoms that they are gluten intolerant and there are all those autistic kids seeing marked improvement on Gluten-free Casein-free diets and people with MS and then people like me with the balance problems... I really wonder just how many people truly are completely unaffected by gluten*?? Sure a lot of the gluten free products are a lot more refined and sugary than the originals so everyone swapping them isn't idea, but I don't think either they or the originals are vital in our diets. Bread sure is tasty but there are other more nutritious foods. It's popular because it's tasty, pretty cheap, easy to use and filling - it's not vital to anyone's diet, not like vegetables are.

(*Or maybe it's wheat that's the culprit, I might be picking on rye and barley unnecessarily but since I don't at all miss them - never drank beer, can live without malt, all the rye stuff seems to have wheat in it anyway - I don't care to trial them again).

As Ravenwoodglass said, you very likely have gluten ataxia. Here's a couple articles you might find interesting about neurologic diseases related to gluten in the absence of GI involvement. I'm happy to hear you figured it out!

http://www.ncbi.nlm....pubmed/19406584
http://www.ncbi.nlm....pubmed/19018335

Researchers like Maki think that a lot more people than just folks with a formal celiac diagnisis tend to feel better off gluten. Nobody has a firm number, but I bet it's as high as 1 in 10 among people of Northern European descent who have the genetic tendencies for celiac.
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#19 Aphreal

 
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Posted 17 August 2010 - 04:21 PM

This is my POV and this may have been said but I didn't read all the responses. I think people are confusing gluten-free with Low or no carb because of the correlation between breads in general and carbs. I am rather irked that they think this is some fun new toy to play with to loose weight when people like you or me struggle to not eat gluten because we have very painful and embarassing consequences.

HMPH!
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Started exhibiting symptoms 1979
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Self Dx Gluten sensitive via elimination diet July 2010
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experimenting with being Grain light

#20 chante

 
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Posted 17 August 2010 - 06:14 PM

My issue with the fad diet of gluten-free is restaurants assuming when you ask for gluten-free that you are doing it as a fad and not a medical requirement. I have had 50% of the restaurants (that do not offer gluten-free menu) ask me if I really needed gluten-free or if I was just opting to be gluten-free. And this may seem like are looking at out for me, but the tone and body language isn't that, it's pure annoyance on their end.
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#21 anabananakins

 
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Posted 18 August 2010 - 03:49 PM

As Ravenwoodglass said, you very likely have gluten ataxia. Here's a couple articles you might find interesting about neurologic diseases related to gluten in the absence of GI involvement. I'm happy to hear you figured it out!

http://www.ncbi.nlm....pubmed/19406584
http://www.ncbi.nlm....pubmed/19018335

Researchers like Maki think that a lot more people than just folks with a formal celiac diagnisis tend to feel better off gluten. Nobody has a firm number, but I bet it's as high as 1 in 10 among people of Northern European descent who have the genetic tendencies for celiac.


Thank you both, and for the links too! Very interesting reading. There are so many pieces to this puzzle.

I fit very solidly in to the Northern European category... I'm of english and irish background. Given my symptoms, I was quite surprised I didn't share the gene. Maybe it'll be clearer after a few more decades of research. I'm only 33 - who knows what we'll know when I'm twice this age.
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#22 lucia

 
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Posted 18 August 2010 - 03:59 PM

Researchers like Maki think that a lot more people than just folks with a formal celiac diagnisis tend to feel better off gluten. Nobody has a firm number, but I bet it's as high as 1 in 10 among people of Northern European descent who have the genetic tendencies for celiac.


That's a really high number. Thanks, Skylark.
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#23 tater218

 
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Posted 18 August 2010 - 06:37 PM

I know that before I was diagnosed with celiac, I thought about doing gluten-free for my autistic son, but couldn't bring myself to change so much for something that there was no guarantee would help. Now i have no choice, and its not as hard as I thought, but I think for someone to do this diet just for it being all the "rage", seems like so much work lol. My whole life has been altered, everything has been shifted to another planet and I'm learning how to do things all over again. I probally would have got the gluten-free stuff from the cabinet next to the regular stuff and been proud that I found gluten-free muffins, only to have an unexplained tummy ache and nausea for days after. I do agree that I hope foods become more readily available and cheaper. I have 5 kids, so its cook gluten-free for all or cook 2 meals, I'd rather only have to cook once. We live on chicken, rice and veggies lol :)
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#24 Skylark

 
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Posted 18 August 2010 - 11:07 PM

That's a really high number. Thanks, Skylark.

That's just my own guess from observing friends and family. So far, I have four gluten-free folks among my close friends and three more friends of friends I know of. Counting myself, that's eight and only one is diagnosed celiac. I know three have negative celiac bloodwork.

One of these people might be "fadliac" and he is eating grain-free. The rest have noticeable health problems from gluten. and range anywhere from avoidance to strict gluten-free.
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#25 precious831

 
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Posted 19 August 2010 - 06:37 AM

I have mixed feelings about this. Oh and it really irritates me when people think it's just a fad diet. I explain to people this is not a "fad diet"(because they say I'm skinny) for me. I do this to survive.
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Grain-free,dairy-free, soy-free (celiac, possible colitis now as well).
Extremely allergic to shellfish, Aspirin & Ibuprofen

#26 mushroom

 
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Posted 19 August 2010 - 06:53 AM

Dr. Rodney Ford estimates that between 30 and 40% of the population react negatively to wheat :unsure:
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

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Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
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Citric acid free June 2009
Potato starch free July 2009
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#27 ksymonds84

 
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Posted 19 August 2010 - 08:21 AM

Its that time of year when I have tons of tourists in my restaurants. I worked very hard on creating an easy to follow gluten free menu for celiac/gluten intolerant guests. My college kids work for me during the summer and they go nuts with guests saying Oh give me the french fries instead of chips and my daughter will say, its not a dedicated frier and they will say that's okay, I'm not that sensitive. It really confuses them and my other servers as well that I have trained about cc, but I try to explain that there are many on the diet for other reasons besides Celiac. I find that those of us that will get sick will absolutely follow the menu as directed. So that is my only fear with movie stars ect is that restaurant people (in other restaurants of course) will get confused and not treat cc as strict as they should.
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Kathy

Gluten free 3/08
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#28 BethJ

 
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Posted 19 August 2010 - 11:09 AM

I can't believe anybody would stay on this diet unless they had to. The first time I read about celiac I was shocked at how restrictive the diet would be. I hoped it was something I'd never have to face, but here I am, not officially diagnosed, but definitely gluten intolerant. I also fit the northern European category.

I prefer to tell restaurant staff I'm allergic to wheat. They all seem to understand what allergic means. The few times I've said "gluten" I get "You can't eat WHAT?" :rolleyes:
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Beth in Florida

Gluten-free since 7/19/08
Alcohol free since 6/28/10

#29 K-Dawg

 
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Posted 04 September 2010 - 02:13 PM

Hey Georgie -- sorry to hear you spent three days on the couch. That is so very frustrating - i hate missing my life because I've been gluttened. I fear that the fad quality of this diet may lead to grave consequences for celiacs if businesses want to capitalize on the fad diet without understanding the disease. It may be that there will need to be some legislative intervention at some point with regard to using the term "gluten free"... perhaps there already are regulations on this issue...I haven't looked it up.

That is my worry too. That all these people doing gluten-free on a casual basis because it is 'trendy' are making it look bad for those of us that have Coeliac and need to be zero Gluten.

I have just had 3 days on the couch as a shop sold my hubbie some 'gluten-free' biscuits. ( that were not 100% gluten-free). When he rang back to ask and eventually complain the store owner was like - oh they are not 100% gluten-free but most people do not react to them.... like it was no big deal to eat a gluten-free food that was only 99% gluten-free ..... and had not bothered to train her staff to explain the difference between 99% gluten-free and 100% gluten-free....

If I had bought that biscuit and eaten it immediately before driving the car I could have killed myself by driving off the road. ( I would not eat a new food now before driving but I used to in my early days). As it was I spent 3 days on the couch and been in a lot of pain. Hubbie had to ring back 4x before the store even issued an apology/we will train the staff / store credit....

GRRRRRRRRR...... :angry:


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Many autoimmune disorders: Graves Disease in 1998, Psoriasis on or about 2000, Hashimoto's in 2008.

Severely anemic in 2007 (undetectable iron levels)

Elevated liver enzymes (ALT and AST) as of October 2008.

Negative blood test for celiac disease in February 2009, followed by diagnosis of celiac disease in April 2009 after positive biopsy.

#30 Skylark

 
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Posted 04 September 2010 - 03:42 PM

I prefer to tell restaurant staff I'm allergic to wheat. They all seem to understand what allergic means. The few times I've said "gluten" I get "You can't eat WHAT?" :rolleyes:

Yeah. I go with "allergic to wheat and grains". At this point I seem to be allergic to wheat as well as autoimmune so sadly I'm no longer fibbing.
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