They Don’t Know, But YOU Do

Last week I heard three different instances of misdiagnosis or refusal to diagnose celiac/gluten intolerance by doctors.  As always the person(s) involved say the doctor said the tests don’t show the celiac, though the patient has felt better being off of wheat.

The majority of doctors, labs, pathologist, the medical world still does not know what they don’t know.

I posted in ‘Doctors Do Not  Know It All, the mistakes our gastro made when he biopsied Evan, after his perforated ulcer. The doctor was basing his diagnosis on the report from the pathologist, the pathologist was basing his diagnosis, on information he had been trained to find. Both were not considering not every patient is text book, and celiac is NOT textbook.  It can’t be, because it has not been studied nor diagnosed enough, correctly to become ‘textbook’

With just a few searches on the internet I, not a doctor, not a pathologist can find the information to confirm this mistake of the medical world.  I find it because I look.  I am not so arrogant to believe that I know it all.

No single test is efficient enough to distinguish unspecific increase in intraepithelial lymphocytes from early coeliac disease; clinical history, histology, serology and gluten-dependency should be taken into account in the diagnostic work-up.

And when it came to the really subtle early stages of damage that are categorized as Marsh scores, there were complete misses at the community hospitals and commercial labs, where they only began to pick up on the details when the damage became more significant

Not all doctors are oblivious to their lack of knowledge on celiac. There are a handful of doctors who realize gluten is not to be in our bodies, anyone’s bodies. They research, they study, they try to educate others, to show the medical world what it does not know, yet.

Some experts think as many as 1 in 20 Americans may have some form of it, but there is no test or defined set of symptoms. The most common are IBS-like stomach problems, headaches, fatigue, numbness and depression, but more than 100 symptoms have been loosely linked to gluten intake, which is why it has been so difficult to study. Peter Green, director of the Celiac Disease Center says that research into gluten sensitivity today is roughly where celiac disease was 30 years ago.

 That sounds like everyone is gluten intolerant in some way.  Is that true?  Everyone?  Yes.  No one can properly digest gluten.  We do not have the enzymes to break it down.  It all depends upon how well our intestinal walls close after we ingest it and how our immune system reacts to it.

It is up to we, the non doctors, to educate ourselves and others. We don’t know what we don’t know, but we are willing to find out. Argue with your doctor. Convince your friends and family members that an expensive test is as fallible as the person who takes the blood and reads the test.  The true diagnosis comes from feeling better, from being healed when wheat is gone.

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