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Celiac.com: Celiac Disease Screening An Uncertainty


Scott Adams

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Scott Adams Grand Master

People diagnosed with celiac disease are often told to go for a gluten-free diet to prevent symptoms such as bloating, gas, diarrhea, abdominal pain, ...

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squirmingitch Veteran

"Krist noted that one concern with celiac screening is that biopsies still have risks, and may confirm the presence of celiac that does not necessarily require treatment."

WHAT??????? The presence of celiac disease does not necessarily require treatment????? Am I reading this wrong or is he crazy????

Celiac disease ALWAYS requires treatment by adhering to a strict gluten free diet.



 

GFinDC Veteran

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This is a link to the USPSTF page on celiac screening.  It says the recommendation is still in draft until 30- May-16.

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" Draft Recommendation Statement

Importance

Celiac disease is a multisystem autoimmune disorder in genetically predisposed adults and children that is triggered by dietary gluten. Ingestion of gluten by persons with celiac disease can cause immune-mediated inflammatory damage to the small intestine, which can cause gastrointestinal and nongastrointestinal illness. The clinical presentation, severity of symptoms, and natural history of the disease varies, and includes asymptomatic (or “silent”) celiac disease.

In studies of U.S. populations, the estimated prevalence of celiac disease among adults ranges from 0.40% to 0.95%.Open Original Shared Link Prevalence is higher than average among non-Hispanic whites, persons with a family history of celiac disease, and those with other autoimmune conditions.

Detection

The USPSTF found inadequate evidence regarding the accuracy of screening tests for celiac disease in asymptomatic populations.

Benefits of Early Detection and Intervention or Treatment

The USPSTF found inadequate evidence on the effectiveness of screening for celiac disease in asymptomatic adults, adolescents, and children with regard to morbidity, mortality, or quality of life. The USPSTF also found inadequate evidence on the effectiveness of targeted screening in persons who are at increased risk for celiac disease (e.g., persons with family history or other risk factors).

The USPSTF found inadequate evidence on the effectiveness of treatment of screen-detected, asymptomatic celiac disease to improve morbidity, mortality, or quality of life compared to no treatment or treatment initiated after clinical diagnosis.

Harms of Early Detection and Intervention or Treatment

The USPSTF found inadequate evidence on the harms of screening for or treatment of celiac disease.

USPSTF Assessment

The USPSTF concludes that the current evidence is insufficient to assess the balance of benefits and harms of screening for celiac disease in asymptomatic persons. Evidence is lacking, and the balance of benefits and harms cannot be determined.

....

Potential Harms of Screening or Treatment

The USPSTF found no trials or controlled observational studies on the harms of screening for celiac disease in asymptomatic populations. Potential harms of screening in asymptomatic populations include false-positive, inconclusive, or unnecessary serologic tests and biopsies, with possible anxiety or complications from testing. However, the USPSTF found no studies on these harms. *** Some persons with biopsy-confirmed celiac disease may never develop symptoms; therefore, overdiagnosis is also a potential concern. ***                                             

One small fair-quality trial of treatment with a gluten-free dietOpen Original Shared Link reported no withdrawals due to major symptoms or complications. The USPSTF found no other studies on the harms of treatment with a gluten-free versus nongluten-free diet in persons with screen-detected celiac disease.  "

Send Us Your Comments

In an effort to maintain a high level of transparency in our methods, we open our draft Recommendation Statements to a public comment period before we publish the final version.

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... article continues...

this is  a link to the comment form:

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I don't agree with the italicized quote myself.  It seems they think if you have silent celiac with no symptoms it's ok to keep damaging your body by eating gluten.  that just doesn't make sense to me.

The comment period seems to be open still, and they have a comment option on that page a the bottom.  Since it seems the people doing the research aren't totally aware of the issues related to celiac disease and it's effects, maybe we should leave them some comments.  Right now they are saying they are not making any recommendation regarding celiac disease screening due to not having enough evidence of a benefit.  That's not an issue I don't think, except in the case of first degree relatives.  First degree relatives should be screened as they have a much higher chance of having celiac or developing it.  The current draft leaves testing relatives up to the individual doctor.  I  know my doctor won't test my 2 brothers even though I have celiac disease.   That isn't right IMHO.

It seems like they should seek input from experts in the field, like Dr Fassano and the U of Chicago celiac center etc.

It's a draft recommendation right now though, so they are seeking public comments.

 

 

 

GFinDC Veteran

Dang it, left some comments on the draft and the server hosed up and wouldn't take them.  They were really great comments too.  Rats!

squirmingitch Veteran

Thanks for the links Gee eff! I was able to leave comments. Yay!

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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