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How Happy Are You on a Gluten-free Diet? 07/18/2011 - People with celiac disease are relatively lucky; a simple change in diet, without any drugs, can completely reverse all symptoms in most patients and causes no side effects. But maintaining a gluten free diet is, of course, far from simple. A number of treatment options are in varying stages of development, but no one has asked celiac patients what kind of treatment they would prefer to a gluten free diet, or if they would even prefer one at all. A recent study in the UK did just that. It found that over 40% of celiac patients are dissatisfied with the gluten free diet.

Aziz et al. gave a questionnaire to 310 celiac patients and 477 controls. The first section measured their satisfaction with the gluten free diet; the second measured their use of complementary or alternative medicine by asking if they took popular oral supplements (multivitamins, kava, Echinacea, etc.); and the third assessed their views of novel therapies being developed to treat celiac disease. These include a vaccine that would be injected and would allow the consumption of unlimited gluten; peptidases or zonulin antagonists that would enzymatically degrade gluten or inhibit intestinal permeability, respectively, and would be taken orally in case of accidental or periodic ingestion of gluten; and genetic modification of wheat to reduce its toxicity.

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Although more than 40% of celiac patients were unhappy with the gluten free diet, they did not use complementary or alternative medicines with more frequently than controls. This suggests that they do not view these as viable alternative treatments to a gluten free diet. Most celiac patients - 42% - said that they would be interested in a vaccine that would allow them to eat unlimited gluten, while 35% said they would prefer anti-zonulin and 23% said they would like peptidases. Both of these latter therapies would not necessarily allow for healing of the small bowel mucosa like a gluten free diet does, but either could be taken as an adjuvant or to protect against minor or occasional ingestion of gluten. Of the potential novel treatments, all patients ranked genetic modification of wheat as their lowest preference.

Adherence to dietary advice is among the lowest of all kinds of guidance given by doctors. Among celiac, strict adherence to a gluten free diet varies from 96% all the way down to 36% among different populations. As these British researchers demonstrated and noted in their conclusions, "patients with coeliac [sic] disease are keen to consider novel therapies."

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17 Responses:

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said this on
18 Jul 2011 6:52:06 AM PDT
I am very happy with my GF lifestyle. There are no adverse side effects from a GF diet. I have no desire to change my immune system by a vaccine or interfere with Zonulin in order to eat wheat. I believe that gluten damages much more than the intestinal lining and I think that gluten is not the only toxic thing about wheat - check out wheat agglutinin for one example. As far as an enzyme to break down gluten, I would consider that for eating out so my fear of cross contamination would be reduced. Currently I eat a grain free/sugar free diet and find this has further improved my health. Check out paleo or primal diet.

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said this on
25 Jul 2011 6:18:41 AM PDT
I too am very happy with my gluten-free lifestyle. I am a much healthier eater and have no interest in putting toxic vaccines in my body. I completely agree with Anne when she states that gluten damages much more than the intestinal lining. I do take whole plant herbal supplements which has improved my state of health even further. I will never eat wheat/gluten again and I'm perfectly happy with that and better off for it.

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said this on
25 Jul 2011 11:06:12 AM PDT
I agree with Anne. I am extremely happy, and feeling 100% better on a GF diet. No adverse effects from taking medication, just following a diet. I would not even consider taking meds...the diet works perfectly and in no way do I feel deprived in my diet.

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said this on
22 Jul 2011 8:26:31 AM PDT
Good article overall, but "coeliac" is not a misspelling, and so does not deserve "[sic]". It's an alternate spelling used in Britain.

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said this on
24 Jul 2011 7:01:12 PM PDT
I was very strictly gluten-free for 3 years. Not because of celiac disease - I didn't have it. But I do have the DQ8 gene, and I went gluten-free hoping it would help mitigate symptoms of my other autoimmune diseases (scleroderma, thyroditis, Sjogrens).

I found the diet, expensive, and I craved wheat the entire time. I tried baking and buying all sorts of gluten free breads, and none were satisfying. All were unpalatable unless toasted. The huge majority of readymade mixes, kits and frozen foods have gluten in them, so the diet required much more time expended in from-scratch food preparation. Our local stores did not have many of the gluten-free foods, so I had to go many miles out of my way to get them. More expense and time consumed!

The diet did not seem to help my autoimmune disease at all. So finally a few months ago, I gave it up. I am so much happier now.

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said this on
25 Jul 2011 9:19:27 AM PDT
Good report Diana! I am happy with my gluten-free diet, and have been following it strictly for about 20 years. Happiness can often be a product of attitude: sure I regret passing up on the bosses birthday cake or whatever, but I do it because I value my health more. Another aspect to satisfaction with gluten-free diet is making sure to eat a HEALTHY GF diet. Replacing gluten products with gluten-free ones is a first step, then it's important to also look at food in general, and choose wisely. There are many gluten-free products that are loaded with refined grains, sugar & fat that fail to nurture good health. Being healthy makes being happy much easier. Whole fruits and vegetables are the most potent healthy choices around and they are also fortunately GF.

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said this on
25 Jul 2011 9:57:27 AM PDT
Out of necessity I have been following the gluten free lifestyle for fifteen years. It really limits my social life. I do ok at home but I would like to be able to eat more freely when I eat out whether at restaurants or other gatherings. I would be thrilled with any improvements in the quality of my life.

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said this on
25 Jul 2011 12:57:31 PM PDT
I agree with the comment above. I would hesitate to take a vaccine as I don’t always trust the side effects of vaccinations and I also believe that gluten does more damage than we are aware of. I believe we are already genetically modifying our wheat seed and other seeds too much and that’s already making us sick enough. Leave the seeds alone, or better still, go back to the original and natural wheat seed before you modified it. I do think that an enzyme to break down gluten, in the event you eat gluten by accident, would be beneficial for the celiac population, although I currently use a natural supplement on the market for such occasions. I am also on a sugar, dairy and total grain free diet and find that it is very helpful, in addition to the gluten free diet. Am I happy to do all this? I would prefer not to, however the alternatives described in the article scare me because it would require messing with systems that are very delicate (wheat seed, human endocrine) and in my opinion should not be messed with, hence my adherence to a gluten free lifestyle.

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said this on
25 Jul 2011 8:36:15 PM PDT
"Although more than 40% of celiac patients were unhappy with the gluten free diet, they did not use complementary or alternative medicines with more frequently than controls. This suggests that they do not view these as viable alternative treatments to a gluten free diet."

I am wondering how the researchers/author came to this conclusion.

Complementary/alternative medicines are not considered viable alternative treatments to a gluten-free diet for celiac disease, not even by complementary/alternative medical providers. In fact, those providers tend to encourage gluten-free diets even in the absence of positive standard celiac tests.

Why would any intelligent patient already diagnosed with celiac use oral supplements more than a non-celiac, BECAUSE of being unhappy with a gf diet, as this article suggests? Being unhappy with expensive prepared gf foods that taste like styrofoam and lack of convenience of a GF diet has nothing to do with believing that oral supplements such as vitamins can reverse celiac!

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said this on
26 Jul 2011 7:37:24 PM PDT
I don't know if I have celiac disease - I gave up gluten (specifically wheat) as part of the endo diet. And it changed my life. After 20+ years of debilitating digestive problems, skin problems, anemia, constant fatigue, and near constant pain, I am finally healthy. Wouldn't go back to eating wheat for the world. Yes, it can be challenging. Yes, I miss a crusty loaf of fresh baked bread now and then. But the benefits so far outweigh the drawbacks, that there's point in griping. Sure it's not easy, but come on a simple (yes, simple - they even make gluten-free beer!) lifestyle change can give you your health back. Sounds like a great deal to me.

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said this on
27 Jul 2011 7:17:39 AM PDT
Although maintaining a GF diet at home has been fairly easy and even fun since it forces me to explore other options, I travel a lot for my job and would definitely welcome any treatment that would make it easier to eat at foreign restaurants, or not be the killjoy when my colleagues want to eat at a pizza joint.

Cat B
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said this on
01 Aug 2011 2:58:27 PM PDT
My unhappiness arises from the facts that our food supplies are so overwrought with unhealthy ingredients and preparations, making research and choices more necessary and more time-consuming. The better my adherence to my dietary standards, the happier and healthier I feel. I wouldn't trust a vaccine and I would lobby heavily for a return to heritage grains and practices that gave humans nutritious food sources. Subsidize smaller firms that provide nutritious alternatives to Big Food; CEASE subsidizing multinationals that are proliferating the GMO villains and chemical poisons that have brought us to this brink!

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said this on
01 Aug 2011 3:25:23 PM PDT
I agree, every invasive antidote has side effects, and the wheat and flours that are used in food production is no longer a grain or fiber. I also have a stand against hormone driven dairy products and refined sugar.
Eating in restaurants is so risky, aside from cross contamination the staff does not want to be asked details of how food is prepared. Most of my clients choose to eat gluten and dairy free because they feel so much better doing so.

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said this on
05 Aug 2011 12:13:22 PM PDT
I have been gluten-free for only one week and it has basically turned my entire life around. All my pain and suffering...mostly gastro issues are gone like the wind. It actually only took 3 days. My life is back and I would not risk ever eating that crap again. Maybe I will miss it in the future, but for now the pleasure is not worth the pain.

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said this on
08 Aug 2011 5:33:26 PM PDT
I agree with so many of the comments made above in that I am not only perfectly happy with my gluten free diet, I am nothing but thankful that I now know how to keep myself healthy. I was horribly sick, and now I'm well--what's not to love? While I would happily keep a stash of the pills to prevent the occasional "glutening" (which has happened almost exclusively in restaurants during the 6 months in which I've been GF), I'm not about to let the medical powers that be do anything else to my immune system, nor do I think further genetic modification of our food supply is a good idea.

I suspect the long and winding path to my diagnosis may lead to my outlook. I was symptomatic for 12 years with debilitating symptoms and told repeatedly it was all in my head and/or I was making it up for attention and then told antidepressants might help for my mental ... er I mean, GI issues (since when is diarrhea a mental illness ... but I digress). The fact is, I just don't trust the doctors enough to allow them to benefit from my illness anymore.

I wonder if the researchers looked at severity of symptoms prior to diagnosis and/or length of illness prior to diagnosis and how that affected perception of the GF diet?

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said this on
01 Nov 2011 12:57:55 PM PDT
The strongest sentiment in these replies seems to be that actually the apparent 'sacrifice' of living without gluten is far outweighed by the almost instant improvement in health experienced once gluten is eliminated from the diet. I have been gluten free for 3 years now and would not dream of putting myself in the hands of the medical profession to deal with this condition (it's not a disease).

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said this on
07 Apr 2012 8:29:15 PM PDT
To characterize the need to adhere to a GF diet as a 'simple' change is to demonstrate a lack of appreciation for the degree of disruption of a life including of busness and social relationships having to adhere to the diet causes. It's manageable at home; it's even quasi-manageable at a job to which one commutes daily and to which office I can bring food from home and/or can stock a fridge with safe foods. To spend a few days a week living in a hotel and working in lower Manhattan is torture. Same salad from the same one, quasi-safe take-out every day for lunch. At the end of a long day of work it's back to the hotel then onto the subway to head uptown to one of a small number of restaurants offering GF menus. Snack on Amtrak? Not a chance unless a package of peanuts floats your boat. I stick with it religiously however it's a miserable business.

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