Gluten Free Diet Differences

[tennisman]

These days I read online and magazines etc about the health benefits of a gluten free diet and stories of people in articles who had so many health problems and after a day - a month on the gluten free diet are 100 % better .

Yet I have had celiac disease and have been on the Gluten Free diet for nearly 9 years and i'm having worse health problems than before I was gluten free . I don't understand how this supposedly great healthy diet has given me a ton of extra problems :S Is it because the articles I read are from people who don't have celiac disease ? Is it celiac disease that makes me ill even though I stick 110 % to the diet the disease still exists. I don't really understand.

I have done all the tests to check i'm not accidentally eating gluten , I just think it's ridiculous how everywhere says Gluten Free diet is so healthy and I get more and more unhealthy the longer i'm on the diet

[Chalula88]

The gluten free diet will only solve medical problems related to consuming gluten in the first place. It's possible you have medical conditions completely unrelated to eating gluten, but that doesn't reflect badly on the diet as you'd surely be worse off 9 years later if you kept eating gluten.

It's possible you have other food intolerances. I have been gluten free for over 2.5 years and I felt great initially and then my health started to decline again. I am currently experimenting with eliminating other foods that could be causing my symptoms. I am starting with dairy and I recommend you do the same. I believe the majority of people with Celiac disease have some sort of sensitivity to dairy.

You could also try a whole foods elimination diet, where you only eat foods in their pure form and cut out all the major allergens (gluten, dairy, soy, peanuts, tree nuts, shellfish).

I'm sorry you're not feeling better. I'm kind of there too and it really sucks.

[kareng]

The gluten free diet will only solve medical problems related to consuming gluten in the first place. It's possible you have medical conditions completely unrelated to eating gluten, but that doesn't reflect badly on the diet as you'd surely be worse off 9 years later if you kept eating gluten.

It's possible you have other food intolerances. I have been gluten free for over 2.5 years and I felt great initially and then my health started to decline again. I am currently experimenting with eliminating other foods that could be causing my symptoms. I am starting with dairy and I recommend you do the same. I believe the majority of people with Celiac disease have some sort of sensitivity to dairy.

You could also try a whole foods elimination diet, where you only eat foods in their pure form and cut out all the major allergens (gluten, dairy, soy, peanuts, tree nuts, shellfish).

I'm sorry you're not feeling better. I'm kind of there too and it really sucks.

Ditto!

People get sick and our bodies fall apart as we age & none of it has to do with gluten or no gluten.

[pricklypear1971]

I'm sorry. I understand what you're going through - though in reverse. I was dx'ed with Hashimotos about 7 years ago and meds helped for a while but then it all crashed down from 'ya know - gluten.

All those weird ubresolved Hashis symptoms - gluten.

Seven years of my body being torn apart from something else - leaving me with lots of damage.

So yes, you very well could have another issue (related or not) to Celiac (autoimmune or not).

Have you told your doctor how you feel? Have you been tested for other autoimmune conditions? Have you tried eliminating other foods, as the previous poster suggested?

[tennisman]

The gluten free diet will only solve medical problems related to consuming gluten in the first place. It's possible you have medical conditions completely unrelated to eating gluten, but that doesn't reflect badly on the diet as you'd surely be worse off 9 years later if you kept eating gluten.

It's possible you have other food intolerances. I have been gluten free for over 2.5 years and I felt great initially and then my health started to decline again. I am currently experimenting with eliminating other foods that could be causing my symptoms. I am starting with dairy and I recommend you do the same. I believe the majority of people with Celiac disease have some sort of sensitivity to dairy.

You could also try a whole foods elimination diet, where you only eat foods in their pure form and cut out all the major allergens (gluten, dairy, soy, peanuts, tree nuts, shellfish).

I'm sorry you're not feeling better. I'm kind of there too and it really sucks.

Thanks for the reply and advice . I have been working with a dietcian since 2010 he doesn't think I have any food intolrences as we have done many elimination diets . There is 1 more elimination diet I have to do because last time after doing half the diet I got a urine infection and needed tablets that contained a food I was avoiding on the elimination diet . I have cut out dairy and it's helped a little but if I try eating dairy the pain gets no worse but I have trouble sleeping so I think dairy has some negative effects on me .

Probaly I am better off on the Gluten Free diet but we miss out in a lot of nutrition from gluten so maybe not . If I have stomach pain on the Gluten Free diet I might as well just eat gluten and have exactly the same symptoms but can eat whatever I like . I know that would be bad for my villi but there is no point being Gluten Free if still makes me ill

About medical problems not connected to celiac disease I think that could be possible . But I have seen doctors about back and stomach problems and they never find anything . The only thing that was found was a vitamin D deficiency .

[pricklypear1971]

Well, Celiac is known to cause problems in odd places. I don't see why other conditions (especially autoimmune) can't do the same.

Are they testing you for autoimmune conditions or conditions related directly to the stomach and back?

I'm sorry you aren't improving. Its exhausting to work so hard at feeling better, only to have it not work.

[tennisman]

I'm sorry. I understand what you're going through - though in reverse. I was dx'ed with Hashimotos about 7 years ago and meds helped for a while but then it all crashed down from 'ya know - gluten.

All those weird ubresolved Hashis symptoms - gluten.

Seven years of my body being torn apart from something else - leaving me with lots of damage.

So yes, you very well could have another issue (related or not) to Celiac (autoimmune or not).

Have you told your doctor how you feel? Have you been tested for other autoimmune conditions? Have you tried eliminating other foods, as the previous poster suggested?

Sorry to hear about Hashimotos and the damage

I tried elimination diets and been working with a dietican. In 2006 I was tested for ankalosing spondylitis and lupus , apparently I tested positive for the gene and had something showing up in an x-ray to show I had ankalosing spondylitis but 1 week later the doctors said they had read the results wrong . I tested positive for the same tests again in 2008 again , doctors said It's possible to test positive but not have the conditions . Than last year I did the ankalosing spondylitis with my new stomach doctor it came back negative . Every test the doctors do is negative . Which is good but doesn't help me get better .

[tennisman]

Ditto!

People get sick and our bodies fall apart as we age & none of it has to do with gluten or no gluten.

I started getting other health problems a few years after being diagnosed with celiac disease my back problems started when I was 17 it's not the normal age to get chronic back problems ?

[tennisman]

Well, Celiac is known to cause problems in odd places. I don't see why other conditions (especially autoimmune) can't do the same.

Are they testing you for autoimmune conditions or conditions related directly to the stomach and back?

I'm sorry you aren't improving. Its exhausting to work so hard at feeling better, only to have it not work.

I'm wondering can celiac disease still do damage even while on the diet because the disease is still in the body . I wrote about the stomach and back tests in my other reply to your post

[pricklypear1971]

Sorry to hear about Hashimotos and the damage

I tried elimination diets and been working with a dietican. In 2006 I was tested for ankalosing spondylitis and lupus , apparently I tested positive for the gene and had something showing up in an x-ray to show I had ankalosing spondylitis but 1 week later the doctors said they had read the results wrong . I tested positive for the same tests again in 2008 again , doctors said It's possible to test positive but not have the conditions . Than last year I did the ankalosing spondylitis with my new stomach doctor it came back negative . Every test the doctors do is negative . Which is good but doesn't help me get better .

Well, it sucks that you don't have an answer. But great if they don't think it's Lupus or AS.

I'm sure if you post more about your stomach issues, or the elimination diets you've tried others here can chime in. Its amazing what people recognize around here.

[Bubba's Mom]

Many of us have other food intolerances.

I haven't improved much on the gluten-free diet and have noticed I'm reacting to soy in a big way. I was just re-scoped and was found to have a lot of damage still in my villi, even though I'm am hyper vigilant about not consuming gluten. It turns out other food intolerances can cause villi flattening too. Maybe you've developed one of these in addition to gluten?

Someone recently posted a report about lectins in foods and it was an eye opener for me.

Open Original Shared Link

[Chalula88]

How long did you do the elimination diets? My understanding is that it can take a year or more to heal your villi on a vigilant elimination diet. Not to be knit-picky, but if you've "tried dairy", which it sounds like you may have done on more than one occasion, you are essentially starting the diet over again as even the tiniest bit could be causing substantial damage. I would try a 100% elimination of dairy and probably soy for at least a year before deciding it isn't working. Results can be slow and if more than one food is bothering your intestines, results can be even slower.

Me and my sister are having similar problems with not getting better on the gluten-free diet. I am currently on a whole foods diet (minus gluten, dairy, and caffeine) and she is on an elimination diet (eating no corn, rice, gluten, dairy, fruit, or nuts). It sucks and it's hard, but I'm afraid it may be the only way to solve the problem.

I never trust what any medical people tell me about food. I had severe stomach aches and diarrhea on a near daily basis from birth. I asked about my stomach problems at my check-ups every year and me and my parents were told "it's just nervous stomach", "she'll out grow it", etc. Nervous stomach? I don't think I had a single solid BM for the first 19 years of my life! I self diagnosed at 19 and had to educate my doctor about Celiac. She still knows almost nothing about it. When my sister developed similar symptoms to mine, she tried to convince my parents it was a communicable disease and had her tested for everything under the sun. We had to demand allergy testing and a scope.

My point is, I would never trust what a medical person says about food intolerances. I would read all you can on here and describe your symptoms as best you can. The people on here really know what they're talking about. Most medical people, sadly, don't.

[tennisman]

Many of us have other food intolerances.

I haven't improved much on the gluten-free diet and have noticed I'm reacting to soy in a big way. I was just re-scoped and was found to have a lot of damage still in my villi, even though I'm am hyper vigilant about not consuming gluten. It turns out other food intolerances can cause villi flattening too. Maybe you've developed one of these in addition to gluten?

Someone recently posted a report about lectins in foods and it was an eye opener for me.

Open Original Shared Link

Thanks for the link I will take a look . Sorry to hear you still have damage in your villi . I had my 2nd endoscopy in Dec 2010 and my villi was fine my doctor did extra tests on the biopsy as he wasn't happy with the doctor who did the endoscopy's report , he said my villi showed signs of regeneration but when my doctor did some extra tests the villi was fine the endoscopy doctor just had a not very clear way of reporting results . If I had food intolrences that would have shown inflammation in the endoscopy as well ?

[tennisman]

How long did you do the elimination diets? My understanding is that it can take a year or more to heal your villi on a vigilant elimination diet. Not to be knit-picky, but if you've "tried dairy", which it sounds like you may have done on more than one occasion, you are essentially starting the diet over again as even the tiniest bit could be causing substantial damage. I would try a 100% elimination of dairy and probably soy for at least a year before deciding it isn't working. Results can be slow and if more than one food is bothering your intestines, results can be even slower.

Me and my sister are having similar problems with not getting better on the gluten-free diet. I am currently on a whole foods diet (minus gluten, dairy, and caffeine) and she is on an elimination diet (eating no corn, rice, gluten, dairy, fruit, or nuts). It sucks and it's hard, but I'm afraid it may be the only way to solve the problem.

I never trust what any medical people tell me about food. I had severe stomach aches and diarrhea on a near daily basis from birth. I asked about my stomach problems at my check-ups every year and me and my parents were told "it's just nervous stomach", "she'll out grow it", etc. Nervous stomach? I don't think I had a single solid BM for the first 19 years of my life! I self diagnosed at 19 and had to educate my doctor about Celiac. She still knows almost nothing about it. When my sister developed similar symptoms to mine, she tried to convince my parents it was a communicable disease and had her tested for everything under the sun. We had to demand allergy testing and a scope.

My point is, I would never trust what a medical person says about food intolerances. I would read all you can on here and describe your symptoms as best you can. The people on here really know what they're talking about. Most medical people, sadly, don't.

1 month off potatoes that was a wate of time lol . Dietican said 1 week off dary but I ended up doing a few months off dairy . And I have again been off dairy since october I ate some at xmas and it didn't make me any worse . I don't want to do a year off dairy unless I had too because I really need to get back on milk for the calcium . There is no damage in my villi it's all healed .

Hopefully it will solve your problems , gluten free diet is annoying enough having to take out other foods is not right I read a lot about taking out other grains etc I think it helps some people.

Sorry to hear about your doctors it's ridiculous how little they know about celiac disease . I recently got hold of this ebook called Textbook of Pediatric Gastroenterology and Nutrition it's 800 pages and costs

[Chalula88]

Yeah, it really is ridiculous that doctors don't know anything about it, especially with its prevalence. I hope that changes in the near future.

Just as a quick point, you might want to look up calcium and milk. Most new research has indicated that milk actually leeches calcium out of your bones, causing osteoporosis. The link between milk and bone health has never really been substantiated. Cultures that don't drink milk have stronger bones and almost no osteoporosis.

Here's a nutritionist talking about milk:

Open Original Shared Link

[tennisman]

Yeah, it really is ridiculous that doctors don't know anything about it, especially with its prevalence. I hope that changes in the near future.

Just as a quick point, you might want to look up calcium and milk. Most new research has indicated that milk actually leeches calcium out of your bones, causing osteoporosis. The link between milk and bone health has never really been substantiated. Cultures that don't drink milk have stronger bones and almost no osteoporosis.

Here's a nutritionist talking about milk:

Open Original Shared Link

Thanks for the video and info on dairy . Because my vitamin D was low I drank a lot of milkshake as the milkshake powder had a lot of vitamin D and calcium from the milk . So maybe I don't need the milk

[AVR1962]

I think with many of the cases where you hear of people going off gluten and making life-long improvements with days, these are people with an intolerance to gluten but not celiac. Looking back at my own situation I can see where it would have been very hard to label of earliest systems as a child as celiac but it was there and I had this and that coming up all along. Not until I got real sick and had gone on a gluten-free diet with improvement had the docs been able to connect the dots. Now I can see why dermo said my acne was something I would have all my life. I know now why endo said my kidney stones were genetic. There were no answers for anything along the way because there was something behind all of it.

I had an appt in podiatry today. Doc could not link the pain in my foot to all the usual reasons which has been the story of my life. When I asked him if the problem could be linked to celiac I had my answer. Gluten intolerance is just that, an intolerance Celiac though is not just about wheat. Celiac effects every inch of your body. How I wish I could take gluten out of my diet and the rest of my issues go away but that is not going to happen. Being gluten-free makes my life less painful but I am still going to have to deal with all the other "fun" stuff that comes along.