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    Scott Adams

    Should Doctors Recommend a Gluten-Free Diet for All Elderly Celiac Patients?

    Reviewed and edited by a celiac disease expert.

    A new UK study documents sharply rising celiac disease rates in the elderly, but stops short of recommending a gluten-free diet. Why? 

    Should Doctors Recommend a Gluten-Free Diet for All Elderly Celiac Patients? - Image: CC BY 2.0--Nicolas Alejandro Street Photography
    Caption: Image: CC BY 2.0--Nicolas Alejandro Street Photography

    Celiac.com 04/05/2021 - Celiac disease is highly under diagnosed in the elderly population, partly because it can vary so widely in its presentations, and partly because doctors lack awareness of the potential for celiac disease in older patients. 

    A team of researchers recently set out to assess the outcomes for an elderly population with celiac disease, and to compare the results with younger adults with celiac disease.

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    The research team included Mohamed G Shiha, Lauren J Marks, and David S. Sanders. They are variously affiliated with the Academic Unit of Gastroenterology, Royal Hallamshire Hospital, Sheffield, United Kingdom. 

    For their study, the team prospectively recruited newly diagnosed celiac patients from the Coeliac Specialist Clinic at the Royal Hallamshire Hospital, Sheffield, between 2008 and 2017. All patients showed villous atrophy on biopsy after positive celiac serology. The team also recruited the patients retrospectively from 1990 to 2008 to determine the trend in elderly celiac diagnostic frequency over time.

    Six-hundred forty-four celiac patients were recruited prospectively, and 961 retrospectively, for a total of 1,605 patients. Of these, 208 patients (13.0%) were over the age of 65 years, when diagnosed between 1990 and 2017. 

    The percentage of elderly celiac diagnoses rose from zero percent in 1990-1991 to nearly twenty percent in 2016-2017. Younger patients more often presented with fatigue and gastrointestinal symptoms including diarrhea, abdominal pain, and IBS-type symptoms, while older patients more frequently showed B12 deficiency.

    Celiac disease rates in the elderly have risen sharply over the last twenty years, but elderly patients tend to present with fewer symptoms, which would seem to be a good argument for treating these patients with a standard gluten-free diet.

    However, the researchers contend that "the benefits of diagnosing celiac disease in the elderly may be contentious," and that more research is needed to determine whether a strict gluten-free diet in these patients is helpful or burdensome. 

    Really? So, maybe we shouldn't put these folks on a gluten-free diet because it might be "burdensome?" It's hard to imagine a research team making a similar statement about virtually any other auto-immune condition. Can you imagine a reputable doctor saying that maybe we should not use insulin to treat diabetes in elderly patients because it might be burdensome? Especially with zero data to back the idea? But that's what the team says, which comes across as a personal bias not based on science.

    With all of the known associated conditions and potential damage of untreated celiac disease, even asymptomatic celiac disease, it is frankly perplexing that any researcher would say this.

    Gluten-free food is more diverse and widely available than ever before. The idea that eating gluten-free is some sort of unnecessary burden, and that celiac disease should be left untreated seems dubious, and not based on any scientific research or data.

    What benefits can be claimed in allowed celiac disease to go untreated, even if it's asymptomatic. The odds of long-term damage are just too great. 

    The proper conclusion to a study that shows such a dramatic rise in celiac disease rates should probably be to call for proper treatment and follow-up of these individuals. What do you think?

    Read more at Gastroenterol Hepatol Bed Bench. 2020 Winter; 13(1): 37–43.


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    Oldturdle

    As an "old celiac," diagnosed at age 69, and basically asymptomatic, I can not imagine not being given the option of education about, and treatment with, the gluten free diet.  My grandmother died in 1949 of "wasting."  She was younger than I am now, and in hindsight, she probably had celiacs.

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    Anne Chopping

    I total agree with Scott Adams. Thank you for speaking out. 

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    trents

    I think it should be recommended but there will be those newly diagnosed elderly celiac patients who will choose to ignore the recommendations for various reasons. Among them is the learning curve involved, strain on limited budgets, and social isolation. Social isolation is going to be a big one. And I'm not sure we have any firm data at this point to say that untreated celiac disease shortens life spans. So you take someone has already attained to the 80+ age and they think, "It's not worth the hassle, expense and the changes to my social life. I'm just going to keep doing what I've been doing for the time I have left." This will be especially true for those whose symptoms are less dramatic. I have an uncle who is about 90 yr. old who was dx'd with celiac disease maybe 10-12 years ago and this was his perspective. And I get that.

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    Scott Adams

    I think a doctor's job is to diagnose, explain the best treatment, and then explain what could happen if the patient doesn't follow that treatment. It's up to the patient to decide what treatment to follow, but all of the above must occur first before the patient can make an informed decision. To me this sounds almost like doctors might make the decision not to tell older people that they have celiac disease, which is just wrong.

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    trents

    Agreed.

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    M Susan

    When I was diagnosed at 49, my father was 74.  His dr did not test him because "he had no symptoms".  When Dad developed recurring diarrhea, the dr said he was lactose intolerant, without testing for celiac.  It would have been easy to switch to a gluten-free diet because all he would have to do would be to eat my gluten-free cereal, bread, etc.  His dinners were already gluten-free because he ate what I ate.  (Easier than giving up milk, cheese and ice cream.)  I got the strong impression from the dr and the PA in that small medical group that they just didn't take celiac seriously.  

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    mary14889

    I've often wondered how many elderly in nursing homes are there because of undiagnosed celiac disease.  Does anyone know of such a study?  

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    Scott Adams

    I've never seen such a study, but your question is certainly worthy of a study.

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    Aligreen

    I have genetic celiac disease and diabetes. I was horrified that gluten-free products have no nutritional value. In my situation is that empty nutritional value and high carbohydrate content is almost impossible to deal with. I have an Gastrologist and Endocrinologist who seem useless. I was diagnosed at 67 years old. I understand why this is happening?

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    Scott Adams

    Just so you know, there are many great gluten-free products that are highly nutritious. Of course there are also many that are not, and are full of empty carbs and refined flours that don't include much else except starches. Whole foods prepared at home are best, and finding high quality products high in fiber, nutrients, etc., is important.

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    CMCM
    On 4/6/2021 at 10:58 AM, Oldturdle said:

    As an "old celiac," diagnosed at age 69, and basically asymptomatic, I can not imagine not being given the option of education about, and treatment with, the gluten free diet.  My grandmother died in 1949 of "wasting."  She was younger than I am now, and in hindsight, she probably had celiacs.

    My grandmother died at 99.  I don't know if she ever had active celiac disease, but I do know she had a celiac gene because my mother ended up with two copies, and therefore, one had to have come from her mother.  My grandmother had very bad arthritis by the time she was in her 80's.  I will never know if that was connected to celiac disease, and I don't know if she had other symptoms she wouldn't have talked about, and obviously, the connections to all these other conditions were totally unknown in the 1980's and 90's.   (She died in 1994).  I can only speculate, but I'll bet she had other things going on as well.  My mother, on the other hand, having two celiac genes, got suddenly very sick from celiac when she was about 46.  She had the classically known symptoms (at that time) of the whole digestive/villous atrophy/highly sensitive type symptoms.  Even with cross contamination she would be violently ill.  Her active celiac disease was apparently triggered (since she had the gene/s) after surgery.

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    Ricky B

    I was just diagnosed less than a year ago at age 71. It all began with blood clots that traveled to my lungs. My doctor at the time did not know why the blood clots happened and I was insistent on trying to find out why. My other symptoms were abdominal swelling, fatigue, body aches and headaches. Among many other tests, I had the Celiac Panel test and was a weak positive (6) on the (tTG) Iga. Everything else was negative. I could not have the biopsy because I am on blood thinners for the clots. I do not have the results back on the genetic test yet. As to the article, I started on the gluten free diet immediately because I wanted to feel better. After 3 months I was still having symptoms although somewhat better, so I began the AIP diet and I could really tell the difference in my energy and digestion. I am completely off the acid reflux medication after 7 years. Although the diet is “burdensome”, I would rather live the rest of my life, however long that may be, productive and healthy. It definitely is a choice people should be given. 

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  • About Me

    Scott Adams

    Scott Adams was diagnosed with celiac disease in 1994, and, due to the nearly total lack of information available at that time, was forced to become an expert on the disease in order to recover. In 1995 he launched the site that later became Celiac.com to help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives.  He is co-author of the book Cereal Killers, and founder and publisher of the (formerly paper) newsletter Journal of Gluten Sensitivity. In 1998 he founded The Gluten-Free Mall which he sold in 2014. Celiac.com does not sell any products, and is 100% advertiser supported.


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