I’m angry – RE: The USPSTF’s draft on Celiac screening

I am so angry.

I don’t normally post two blog posts in the same day (sorry to crowd your inbox), but I am mad.

I am all about universal screening for Celiac Disease. It is a tricky disease to diagnose. Your only symptoms may be joint pain, depression, or weak nails, which people will try to cure with medication or a good manicure. With roughly 80% of the Celiac population remaining undiagnosed, universal screening could save thousands of lives.

This article popped up in my twitter feed regarding US physicians who are unsure whether universal screening would provide “health benefits” for those who exhibit no symptoms (http://www.reuters.com/article/us-health-celiac-screening-idUSKCN0XU2G6?utm_content=buffer3ed50&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer)

First of all, no symptom is a symptom! There is something called “Silent Celiac Disease”, and I personally know several people who have it. They experience no outward symptoms caused by gluten consumption, but their insides are being torn apart. If they eat gluten, they may not feel it, but they are highly at risk for long term complications such as cancer, miscarriages, and osteoporosis, just to name a few.

Also, let’s consider the non-GI related symptoms of Celiac. Doctors, how many times does someone walk into your office and say, “Gee, Doc, could you test me for Celiac Disease? I have (insert one of the following)”:

  • asthma
  • bladder infections
  • dental problems
  • dandruff
  • high blood pressure
  • headaches
  • blurred vision
  • leg cramps
  • back pain
  • pale skin
  • brittle nails
  • acne
  • bad bread
  • mood swings
  • ADD
  • Anxiety
  • Depression
  • a short temper
  • night terrors
  • panic attacks
  • irrational anger
  • sinus pressure

Those are just a few of the symptoms that people don’t think to associate with Celiac Disease, and I’m sure that you, Mr. Doctor, will not test someone with Celiac Disease if they have dandruff. This is why so many people are undiagnosed! People do not recognize the symptoms and doctors won’t think to give them a blood test.

This is why I always say – You cannot know that you do not have Celiac Disease until you get tested.

“One concern with widespread screening is that biopsies aren’t risk-free and may confirm cases of celiac disease that weren’t causing problems for patients and didn’t necessarily require treatment, Krist noted.”

WHAT?????? First of all, most Celiac screening starts with a gene test or a blood test. That aside, ALL confirmed cases of Celiac Disease require treatment!! Untreated Celiac Disease can cause many problems in the future.

“Guidelines for gastroenterologists recommend celiac screening for people with a close relative with celiac and for diabetics who are at increased risk for the disease, Murray said by email.”

I was the first person in my family to be diagnosed. 80% of Celiacs don’t know they have it. I would have never been diagnosed if my gastroenterologist said, “Well you don’t have diabetes and no one in your family has it….” No one in my family had heard about Celiac Disease, let alone had been tested for it. And we have all of the tradition GI symptoms.

This is not a rare disease. About 1% of the population has Celiac Disease. Take a look at your facebook friends list – have 500 friends? Odds are that you know four or five friends with Celiac. MAYBE one of them will be diagnosed. Maybe. The others will be suffering in silence.

“The USPSTF, a government-backed independent organization that reviews medical evidence, issues recommendations that are closely watched by doctors and insurers. This is the first time the USPSTF has weighed in on screening for celiac disease, and the task force will accept public comments until May 30 before releasing final guidelines.”

This brought me to the USPSTF website.

In their draft, here is what is listed as “Potential Harms” of screening in asymptomatic populations. I’ve included my response:

False positive – there are rarely false positives

Unnecessary serologic tests and biopsies – umm…only do a biopsy if you have a positive blood test. And what’s so bad about a blood test?

Anxiety of complications from testing – I had much more anxiety in my pre-Celiac days, not knowing if I would poop my pants at work.

“Some patients with positive serology who do not undergo histologic confirmation may embark on efforts to avoid dietary gluten, which can increase costs and burdens and may result in decreased quality of life” – I’m glad that you think my life is so terrible.

“Limited evidence from long-term followup studies have shown that some persons with biopsy-confirmed celiac disease may never develop symptoms or complications – I’m not going to risk getting cancer, are you???

The USPSTF is taking public responses to their draft, all of which must be submitted by May 30th. I highly urge you to write in and explain why universal screening is important. My Celiac diagnosis saved my life. If universal screening can do the same for a huge portion of the population – I am all for it.

Read the draft and write to the USPSTF here.

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2 thoughts on “I’m angry – RE: The USPSTF’s draft on Celiac screening

  1. Color me angry, too. I will definitely comment to the USPSTF. Why? A celiac diagnosis at 50+, two additional autoimmune conditions, migraines, and oh, yeah: osteoporosis. Not to mention a child diagnosed at 13, who has low bone density, and who would have been properly cared-for had I been diagnosed earlier. And, since when is villous atrophy (what a positive biopsy confirms) NOT a symptom??? The report shows a stunning lack of knowledge.

    Liked by 1 person

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