Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Any Long Term Studies On Gluten/cc & Risks?


2wheels4eyes

Recommended Posts

2wheels4eyes Explorer

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



happygirl Collaborator

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 Explorer
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 Newbie
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 Explorer

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 Apprentice

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! :angry: 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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,885
    • Most Online (within 30 mins)
      7,748

    susieq312
    Newest Member
    susieq312
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      @Mynx, how long have you been gluten-free? I ask because many newly diagnosed celiacs react to many things, and often think their reactions are caused by gluten, when in fact, they are really caused by a combination of a sensitive gut due to damage, as well as additional food intolerance/leaky gut issues to other foods which may be temporary until their villi heal.
    • Scott Adams
      Many major brands of distilled vinegar in the USA, including Heinz white vinegar, are typically made from corn. In the United States, corn is a common and cost-effective raw material used in the production of distilled white vinegar. The process involves fermenting the sugars derived from corn into alcohol, which is then further fermented into acetic acid to produce vinegar. Distillation follows, which purifies the liquid and removes impurities, including any residual proteins or allergens. While the source of the vinegar (e.g., corn) is not always explicitly stated on the label, corn-derived vinegar is widely used in the food industry due to its neutral flavor and affordability. For individuals with gluten intolerance or celiac disease, distilled vinegar made from corn is generally considered safe, as the distillation process effectively removes gluten proteins. However, if you have concerns about cross-contamination or specific sensitivities, it’s always a good idea to contact the manufacturer directly to confirm the sourcing and production practices. Heinz, for example, has stated that their distilled white vinegar is gluten-free and safe for those with celiac disease, but verifying this information can provide additional peace of mind. The belief that distilled vinegar is gluten-free is rooted in the scientific understanding that gluten proteins, which are large and complex molecules, are generally too big to pass through the distillation process. Distillation involves heating a liquid to create vapor, which is then condensed back into a liquid form, leaving behind larger molecules like gluten proteins. However, the concern about cross-contamination arises from the possibility that gluten-containing ingredients may have been present in the liquid prior to distillation. While the distillation process itself is highly effective at removing gluten, the equipment used in production could potentially introduce trace amounts of gluten if not thoroughly cleaned between batches. For most individuals with gluten sensitivity or celiac disease, distilled vinegar is considered safe because the gluten content, if any, is typically below the threshold that would trigger a reaction. However, for those with extreme gluten intolerance or celiac disease, even trace amounts can cause adverse effects. This is why some individuals, like yourself, may choose to avoid commercially produced distilled vinegar and opt for alternatives like apple cider vinegar, which can be verified as gluten-free. The meticulous process of researching ingredients and preparing homemade products, such as ketchup, is indeed challenging but crucial for maintaining health and avoiding gluten exposure. It’s important to note that regulatory standards for gluten-free labeling vary by region, and in many places, products labeled "gluten-free" must contain less than 20 parts per million (ppm) of gluten, which is considered safe for the vast majority of people with celiac disease. Nonetheless, individual sensitivity levels can vary, and your approach highlights the importance of personalized dietary management for those with severe gluten intolerance.
    • Bebee
      I have been diagnosed with Microscopic Colitis (LC) for quite a few years, so I have been gluten-free and DF.  I would like to get tested for Celiac Disease because of the possibility of cross contamination and colon cancer.  And if you were hospitalized and didn't have a celiac diagnosis you could not get gluten-free food, I don't know if that is true or not.  Also because there is chance of colon cancer so I want to know if I have Celiac Disease and need to be on very restrictive diet.  The only testing I did was a sigmoid scope and Enter Lab but no gene testing.  I know I can go back to eating gluten for a few months, but I would worry you would have to stay home for the few months while getting gluten.  What other options do I have?  Should I do the gene testing?  Maybe through Entero Lab?  Any other tests?  How important is it to have Celiac diagnosed? Thank you! Barb
    • trents
      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
    • Mynx
      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
×
×
  • Create New...