Evan had a endoscopy and biopsy, a month ago, following the giant ulcer. The doctor came out from the endoscopy with pictures of the still present but healing ulcer and visual confirmation of the celiac. Recently we had the report from the pathologist read to us, and it seems the doctor has changed his mind on the ‘confirmation’ of the celiac and also is disagreeing with results of the lab work on confirming Celiac, Evan had when he was 4. The doctor has decided that it must be something else. I say BS. Not IBS, just BS.
Here is the conversation or the giving of the information, not a lot of conversing.
Patel basically reads the lab report, not verbatim but hits the points: The biopsies show there is eosinophilic esophagitis, that means he has an allergy to some kind of food, like I said.
ME: Or the gluten has caused some damage and it still needs to heal?
Patel: No, this is an allergy. Also this says the duodenum changes are not classic for celiac sprue. The villous blunting is there but the intraepithelial lymphocytes are not increased (it actually says ‘except focally) Did he have a blood test for celiac, because this does not say he has Celiac?
ME: Yes he had the blood celiac test testing for iga’s and such and it was positive.
Patel: when was this?
Me: He was 4, about twenty years ago.
Patel: So a long time ago. I think we need to do another test for Celiac. So he will have to eat wheat again, so the test will be accurate…. He then starts to explain why the test wont work without eating wheat.
I interrupt: NO, he will not eat wheat. He has celiac.
Patel He has to do wheat to get an accurate test.
I then get side tracked: How about the DNA test?
Patel: Yes but it is more expensive.
I get back on track: Why do you need a Celiac test? What are you trying to find? He has had a positive Celiac and you confirmed a celiac look with the endoscopy.
Patel: Need to find out if he has Celiac or Crohns disease. His ulcer should be better now. His stomach should have been healed because he was off of gluten
ME: And if he has Crohns disease how is that different, or how do you treat that different?
Patel: We will need to give him RX, like steroids, so he will get better.
Me: I think Celiac and Crohns is the same thing, it is the doctors that treat it different. I want him to be off of wheat longer before we look for something else. He has only been off of wheat for about 8 weeks now.
Patel: The test says he does not have Celiac. He was on a strict GF diet, he should be better now. (Actually it says not classic for celiac sprue)
Me: No, it has only been a few weeks, it was 6 months before the second biopsy for Brian and over a year later he was still having symptoms. AND Evan not only has to heal his stomach lining but also a big ulcer.
Patel: Do you want to do the Crohns test also?
Me: Also? If you are looking for Crohns why not just do the Crohns test?
Patel: The Chrons test is just the suggested test, we will not do that. We will just do the DNA Celiac. (This makes NO SENSE to me)
Me: I do not think we need it. So if you find out he ‘really’ has Celiac, what will you do then?
Patel: Give him time to heal.
Me: Ok…. I think Isn’t this the first thing we should do?
The doctor then ushers us out to wait for the nurse to set up labs for Evan. This gives me time to rewind the conversation. Pray for some clarity. Text Keith with a quick ‘What You Think?’.
The nurse tells us to go downstairs to the lab not sure if they do this test. Keith calls on the way down. I explain our conversation and all the problems with it. Keith says don’t do it, we don’t need to prove to the doctor Evan has celiac. Makes sense. I am now at the lab, I ask her if they do this test. She is not sure. She comes back and says there are 9 tests and does not know which one the doctor wants and which one they do. I have my answer. No need for the test.
I spoke up. I gave educated answers to the doctor. I did not accept everything (much of anything) the doctor said as gospel, just because he has MD behind his name.
I knew more than the doctor did about Celiac and I was not afraid to tell him. He did not listen. That does not change the facts though.
I respected his position as the doctor, yet still dubious of his conclusions.
The doctors theory does not work. A + B does not equal 3.
- The ulcer was HUGE, bleeding and ‘partially’ penetrating. It not being healed within 6 weeks does not mean it is Crohns. Crohns is an inflammatory bowel disease Basically a symptom. Celiac is an IBD. Celiac could feasibly cause Crohns. inflammatory bowel is a good place to grow an ulcer.
- The length of time since the blood work for Celiac is not an issue, positive 20 years ago is still positive
- The pathology report is fallible, it is pathologist opinion and also dependent on the quality of the lab
- Doctors want 6 months gluten free before endoscopy’s are reordered . It takes years to recover from gluten damage in the gut. 6 weeks is not enough time to heal the stomach lining, AND the ulcer.
- Yes you must eat wheat to have an accurate antibody test– BUT eating wheat is dangerous for a Celiac- And Evan does have Celiac-
- The Eosinophilic Esophagitis does not only mean ‘allergy’.
The ignorance of Celiac/Gluten intolerance is still very prominent in our doctors. Not just the GP’s but also those trained specifically for gastrointerology. Always question the doctor, they are fallible. Study, research, listen to those who have experienced and researched (ME) If the doctors try to intimidate you or become angry with your questions, you do not need to be going to them anyway, YOU PAY THEM. If I had not questioned this doctor, Evan would be eating wheat so we could do a test to prove to the doctor that Evan really does have Celiac. We would be damaging Evans stomach further, causing that ulcer to bleed. We would be going backwards. We would be killing Evan, just to prove something we already know