Any Long Term Studies On Gluten/cc & Risks?

[2wheels4eyes]

Despite my care, I've glutened myself for the second time this week--not even sure on what at this point. I think just CC, either in my house or the pre-made/packaged foods (which are gluten-free--ha ha--but "made in facilities that...")

So tonight I'm sitting for a dinner I had no interest in eating at Outback's, waiting for my latest symptoms to pass (fortunately I don't think it was a lot of gluten--and I hasten to add this wasn't Outback--I glutened myself at home.) Everyone at the table is talking about, y'know, life and stuff and in the back of my head I'm thinking about my gut. And how stupid I am that this happened again. And about the relatives I learned about last week (all my grandmother's generation or before) that were diagnosed with celiac disease too late in life and died of rare intestinal cancers in their 50s or early 60s.

I have no intention of dying in my 50s or 60s of some stupid celiac disease-related thing (I'm 29; dx'd 8 mos. ago.) I'm beginning to think my greater risk with celiac disease isn't cancer & osteo but paranoia.

Does anyone know of any *good* long term studies of morbidity in those following the gluten-free diet? I know they've got some ballpark figures and that lab tests show even minute amounts can damage the villi. But c'mon. Just because they can detect the effects of gluten doesn't mean (necessarily) that my risks for various things has gone up until that damage is severe enough.

I'm guessing that a really good, longitudinal, double-blind trial hasn't been done, first because who would spend the $ on something like that and second because you'd have to put celiacs on gluten diets and then conduct repeated biopsies. But maybe something could be done using non-compliant (non-gluten-free) celiacs and those sticking to the gluten-free diet? Anyone heard of such things? I want hard numbers on risks as correlated to frequency and severity of gluten exposures.

[happygirl]

To my knowledge, there are no studies that link exposure/glutenings to morbidity. That would be near impossible to do, as we don't always know when we are glutened (i.e., esp for asymptomatic Celiacs), so the validity/reliability of a study such as this would be highly questionable.

In general, it appears that the higher risk of morbidity and most other serious problems (cancer, etc) increases for those who are not on a gluten free diet but are Celiacs. Going gluten free and maintaining (with, some accidents, of course, but in general, gluten free) the diet lowers this risk (same with fertility numbers/Celiac).

here are some references to some of the studies of morbidity.

https://www.celiac.com/st_prod.html?p_prodi...-25107204802.c9

https://www.celiac.com/st_prod.html?p_prodi...-25107204802.c9

[2wheels4eyes]

To my knowledge, there are no studies that link exposure/glutenings to morbidity. That would be near impossible to do, as we don't always know when we are glutened (i.e., esp for asymptomatic Celiacs), so the validity/reliability of a study such as this would be highly questionable.

Right--unless you purposely glutened people occasionally in a lab environment and then marked the effects over a period of years. Which no one would get IRB approval for anyway--hence relying on subjects' self reports, food diaries, etc. as a proxy for lab glutenings. Like for the two above studies you linked, what does it mean to be "gluten-free" exactly? How strictly (or not) are the diets being followed?

Not that I'm a cheater--I just find it maddening not to know what the correlation is between exposure and risk.

Thanks for the links!!!

[Celiac Sufferer]

Right--unless you purposely glutened people occasionally in a lab environment and then marked the effects over a period of years. Which no one would get IRB approval for anyway--hence relying on subjects' self reports, food diaries, etc. as a proxy for lab glutenings. Like for the two above studies you linked, what does it mean to be "gluten-free" exactly? How strictly (or not) are the diets being followed?

Not that I'm a cheater--I just find it maddening not to know what the correlation is between exposure and risk.

Thanks for the links!!!

Celiac Disease even following the diet can cause problems. I have been on a gluten-free diet for 4 years and have had 6 surgeries and were all related to Celiac disease. I even have heart problems due to Celiac. The reason for that is because I was diagnosed too late. I am 21 years old and all though my life had horrid symptoms and even bone deformaties and I had a hard time gaining weight because throughout my younger life the doctors told me I had IBS. They didn't do any test. Until I was in High School they noticed that I was weighin in at 88 pounds. The doctor rushed me into a Endo and colonoscopy and found out I had a severe case of Celiac Disease. For 4 years being on the Diet I still run into lots of problems. They come one right after the other. That is because I am Nonresponsive Celiac Disease. That means I not getting the tummy symptoms, but the Celiac is damaging other parts of my body. You know that Celiac Disease is not an allergy it is an Auto Immune Disease. So I will have a lifetime of complications from cancer to getting other auto immune diseases. It is very important to stay on the Gluten-Free diet and try not to contaminate or run into gluten because yes a little tiny bit can trigger the celiac to become more active. My Celiac will be always active due to the fact of having such a severe case and being diagnosed to late.

[2wheels4eyes]

Celiac Sufferer... my heart goes out to you... thanks for sharing with me your hard-earned knowledge about celiac disease.

I'm symptomatic after CC but usually not to a debilitating degree (i.e., don't usually have to take time off work or anything.) It's more frustrating when I know I'm in control of what I eat (ha ha) and still end up making mistakes that could jeopardize my health.

However, I think my post was motivated in equal parts by a desire for better research and a desire to simply whine!

[Generic]

From personal experience, I believe it can cause more problems. I have been gluten free for 19 years and have been accidentally glutened more times than I care to remember. I have since developed over the years hypoglycemia, fibromyalgia and something else that they aren't sure of yet. Possibly MS, rheumatoid arthritis or myositis.

Yippee! I just wonder what other auto-immune disease I will develop as I get older. I try to stay positive but it is hard sometimes. I often wonder if it is going to shorten my life. But so far my grandparents lived into their 80's and I'm pretty sure they were undiagnosed celiac.

Oh and not to mention I have put more money into my mouth than what my jeep is worth.