This makes me angry #celiac diagnosis

By | August 31, 2015

I received this email from my primary care team:

“Do please remain on a regular diet for now. Usually for a final diagnosis of celiac disease an endoscopy with biopsy is recommended.
The biopsy relays on the fact that the gluten disease causes inflammation in the intestinal wall which can be detected with the biopsy. If the diet is gluten free already often times this inflammation resolves and the biopsy comes back negative thus not providing a final diagnosis.”

This would all be fine and dandy if they got me in to see the GI specialist tomorrow and we planned to have the biopsy within a week. But that isn’t the case. To be fair, I don’t know yet when I will get an appointment through my primary care system. You see, I get my cancer care through a different system. In the cancer system (Stanford hospitals and clinics), where I went through the first two sets of screening (and was positive on both), can’t get me in until October 15. This is just the first consult. Who knows how long it will take to book the biopsy (actually, I should phone and ask that). I’ve also asked for an appointment through my primary care system (Palo Alto Medical Foundation or PAMF). If I can get in sooner, I will.

The reason this makes me angry, is that everything is pointing to a positive result. I have a family history. I have had two positive tests. There has been no worry of a false negative, because everything has been positive! So, instead of getting me into and through the system quickly, I end up having to wait an indeterminate amount of time. But to rub salt into the wound, I’m expected to eat the food that is making me sick while I wait. This protocol makes me angry. It pisses me off. If gluten is like poison in my body, why on earth would I knowingly continue to poison myself until the healthcare system danes to give appointment so that I can be formally diagnosed? – at which time all they will do is to tell me to stop poisoning myself and after a year validate that I’m complying!

The protocol could use a little less of the objectivist world view and remind itself that patients are human. This protocol is both archaic and example of how not to be patient centered. Perhaps, once patients have had positive blood tests, that clearly indicate that the next step is proceed to biopsy (there is a clear protocol here – http://www.mayomedicallaboratories.com/media/articles/algorithms/1242-celiac.pdf) , that they could prioritize getting said patients in for evaluation and biopsy quickly, while they are still sick, without asking them to intentionally make themselves sicker? I cannot even imagine how horrible this would be for parents of young children – knowing what is making their kids sick, but being told to keep feeding it to them for the sake of an official diagnosis.

Now, according to the latest from the folks at the University of Chicago, I would only need to go back on a small amount of gluten for two weeks before an endoscopy biopsy (see http://www.cureceliacdisease.org/archives/faq/what-is-a-gluten-challenge). So if my next appointment isn’t for 6-weeks, and it could be another 2-3 or more months before the biopsy is scheduled, then why would I continue to eat gluten while waiting for doctors appointments? I have already had a positive blood test, so that doesn’t need to be repeated.

And so, with that, I shall be non-compliant. That is, I’m going to go on a gluten free diet now. I’m going to stop poisoning myself now. I will give my body some time to heal while I wait for doctors appointments. I will cross my fingers that some of my aches and pains improve once the gluten has time to leave my system and my body has had a little time to heal itself. Once I actually see the doctor, we can then talk about next steps for a formal diagnosis.

4 thoughts on “This makes me angry #celiac diagnosis

  1. Sharon

    Our niece, Casey, was advised to do the same. And, like you, has decided to be non-compliant.

    Casey’s self diagnosis was related to extreme eczema and she found by eliminating gluten her symptoms disappeared. Initially, she tried eliminating dairy, fat and gluten.

    She told her mother that she would never eat gluten again and considers herself having celiac disease without the official diagnosis.

    Reply
  2. JF

    I second your non-compliance – you are your own best advocate. Always. As I finish my first month of Tamoxifen feeling….no-so-great, I am debating taking my own non-compliance stand. Thank you for sharing your story.

    Reply
  3. Kathleen.Hogue

    Stay on the gluten free diet. Look at your dad who would not stay on the diet and now has a rare side effect involving cerebellum and balance problems. We knew nothing that gluten could cause these side effects.
    As far as the medical system, join the crowd. It’s all hurry up and wait. After my CAT scan results came back indicating that an MRI should be done, my appointment for the MRI is scheduled for the middle of Dec. Hurry up and wait.

    Reply
  4. mrsloomis

    Good for you on non compliance. My daughter self diagnosed at 16. When the doctors checked her symptoms (long term) against the diagnosis and the bloodwork, they concurred. They told her she should have the biopsy, but by then she was off gluten and feeling human again. She asked what the difference in treatment would be with an “official ” diagnosis. No difference. Since the doctors were already certain and she had already made the dietary alterations, she passed. The thought of adding gluten back into her system was terrifying. Her case is severe and mimics fibromyalgia, lupus, and arthritis along with the digestive issues. She is so sentiment she cannot even touch the stuff. Cross contamination is a real fear. And then she figured out she is also allergic to corn and corn products. That’s even more challenging than gluten!

    Hang in there.

    Reply

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