Universal screening for celiac disease is a topic of hot debate among celiac researchers. Several studies have been done looking at universal screening, primarily focused on children. Universal screening seems to catch a percentage of celiac patients between 1% and 3% of the population. In Sweden, the general population has a rate of celiac disease closer to 3%, while in the US it is estimated we have a rate of about 1.5%.
I don’t deny universal screening is important. Nobody with celiac should suffer unnecessarily or be put off by doctors. But I’m wondering why the push now? Now, as we are on the cusp of new drug therapies for those with celiac disease. Or is it that there is truly a concern for celiac disease being so widespread in the population?
For a long time, the medical community didn’t care about celiac disease. Heck, the medical community thought celiac was exceptionally rare in the US until the early 2000’s. The explosion of gluten free foods, more cost effective screening tests for celiac, and a the cusp of a breakthrough drug (Larazotide Acetate) to help with celiac inadvertent gluten exposure makes me think there is a reason that the scientific community is pushing for universal screening.
In January 2017, the US Preventative Services Task Force recommended against universal screening for celiac disease. Larazotide Acetate went into Phase 3 clinical trials in mid-2018. There were some suggestions about universal screening about specific populations, like those with Type 1 Diabetes or Downs Syndrome, prior to 2020. But there wasn’t really a push for universal screening. No Sweden nor Italy do universal screening, but they are more adept at picking up celiac disease in their communities. Significant research regarding universal screening for celiac disease started coming out in 2020. Yesterday, a major celiac advocacy group funded researchers reported research supporting the need for universal screening and happen to be the recruiting partner for the Phase 3 clinical trials for Larazotide Acetate.
What is my point? I’m not sure, but this all seems a bit sketchy. Does the push for universal screening seem a little fishy at this time when the first potential drug for celiac patients is on the cusp of being complete? Yes. Am I bothered by it? Yes. Am I bothered that on average it takes 10 years for a proper celiac diagnosis? Yes. Would universal screening help? Yes. Am I bothered that a celiac advocacy group is helping recruit patients for a clinical trial? Nope. Am I bothered that this same advocacy group is pushing for universal screening and believe they may be in cahoots in some way with the drug company? Yes.
So, I’m not sure where I fall on this issue. What do you guys think? Is universal screening for celiac a good idea? Are you concerned about an advocacy group potentially being partners with a drug company? Are you concerned about this advocacy group suggesting universal screening is important while potentially benefitting from a new drug?
#glutensensitivity #glutenfreerecipes #glutenfree #celiacdisease #celiac
Is universal screening for celiac a good idea?
Yes, CD is an under recognized autoimmune disease that impacts the whole body. It takes way too long for patients to get diagnosed right now. The impact of untreated CD is terrible and the American health care system has little awareness or understanding of the condition.
Are you concerned about an advocacy group potentially being partners with a drug company? No I am not concerned about this, how else would drug development and awareness happen otherwise for this condition? I don’t see nefarious motivation and other diseases have had the same situation to stimulate further treatment and research that otherwise would not have happened (Cystic Fibrous to name one).
Are you concerned about this advocacy group suggesting universal screening is important while potentially benefitting from a new drug? No, any gains from more awareness and diagnoses from screening will be reinvested to finding a cure one day.
As long as the advocacy group is transparent and the appropriate amount to funds are being dispersed to support ongoing research it is acceptable.
Also we’re making an assumption the group will benefit at this time and I would need more info to know that for sure.
Until someone has the lived experience of living with undiagnosed CD it is a difficult disease to understand.
I am concerned that the advocacy for diagnosis is a direct result of undue influence by drug manufacturers. While I believe we need a cure for celiac disease, I am uncertain who this advocacy group is advocating for – celiac patients or drug companies?