It’s 2021 (or the 14th month of 2020 depending how you look at it) and we still have doctors who have their head up their arse when it comes to celiac disease. How far up you ask? Here’s an email I received the other day.
I have just been diagnosed with Celiac at the Cleveland Clinic. They told me to have a local physician take care of the endoscopy and then gave me web sites and information that were very thorough and very informative.
When I got back home the doctor told me this disease was not that bad and many overrated its effect on the body.
Cleveland clinic told me there was no cure. I just had to get checked and follow the diet.
The new doctor told me steroids would fix this just fine.
I was warned by the clinic that steroids were only used if the villi was very inflamed and only for about a week and should be gluten free.
Clinic doctors told me that with my family history of cancer and heart disease I would need to be followed up on with a colonoscopy and endoscopy every one to two years.
The new doctor says five to ten.
I have asked these questions before this at different places and been told I was not being honest. First what pathetic loser would make this up. Second if I was lying what good would that do me. Twice I have been told by people who knew someone with this that it’s not that bad. They have never had it!
Who is right here? Two conflicting things that are very different and no where to go.
Wow. Just…wow. While I try to stay away from offering medical advice, I’m going to dip my toes just a little bit here to try to steer you in the right direction. Let me break down the email a bit and respond accordingly.
I have just been diagnosed with Celiac at the Cleveland Clinic. They told me to have a local physician take care of the endoscopy.
GD: A celiac diagnosis requires a blood test AND an endoscopy. Why did they diagnose you without an endoscopy and why couldn’t they do the endoscopy at the clinic to complete the diagnosis? I would ask.
“…then gave me websites and information that were very thorough and very informative.”
GD: I would LOVE to know which websites as some of them are not what you need right now. Paging celiac.com.
“When I got back home the doctor told me this disease was not that bad and many overrated its effect on the body.”
GD: Argh! No…let’s make that ARGHHHHHH!! Are these potential effects overrated? Osteoporosis, failure to thrive, blistering skin rash, malnutrition, infertility, other autoimmune diseases. Is that enough for you doctor cause there are more?
Cleveland clinic told me there was no cure.
GD: That is correct.
The new doctor told me steroids would fix this just fine. I was warned by the clinic that steriods were only used if the villi was very inflamed and only for about a week and should be gluten free.
GD: I don’t know much about steroids but saying they would “fix the issue” is assinine. I’m not even sure what that means. (Not assinine…I know what that means.)
Clinic doctors told me that with my family history of cancer and heart disease I would need to be followed up on with a colonoscopy and endoscopy every one to two years. The new doctor says five to ten.
GD: I’ll stay away from this one, but at this point I wouldn’t listen to a thing the new doctor says.
Who is right here? Two conflicting things that are very different and no where to go.
GD: I’ll tell you where you DON’T go: back to the new doctor. Ever.
Here’s the deal. Yes…get the endoscopy to confirm the diagnosis. Assuming you have it, there is only ONE solution to celiac disease. Eating a 100% gluten-free diet for the rest of your life (or longer if you live beyond that.) Is it easy? No, especially at first. Is it overwhelming? YES, especially at first. Will you eventually adapt? For the most part…yes.
You deserve to get the help you need. Find yourself a good GI in your area who GETS celiac disease. They may be few and far between, but they are out there. I wrote a 5-part “How to go Gluten-Free” series years ago (in the head, in the hear, in the home, in the restaurant, now what?). That can set you on the right path.
And one last piece of advice. Ignore anyone who says “it’s not that bad”. Everyone has their own celiac disease. Some have died. Some don’t have symptoms at all. Many of us are somewhere in between. You’ve got a serious autoimmune disease now. Give it the attention and respect it deserves.
Many GPs and even some GI docs don’t fully understand CD. My old primary physician NEVER had a Celiac patient until I walked in the door, but she educated herself on the disease with peer-reviewed research and consulting with GI docs in her practice about it before ever giving me advice on how to manage it. Her interest in learning what is best for MY health is why I kept her as my primary until she moved away. I haven’t found another primary I feel I can trust since she left.
The doctor who wants to push steroids clearly doesn’t understand the disease and/or he thinks it’s something else. Get the Endoscopy, get confirmation. Don’t quit gluten until you do that.
Assuming you do have CD, know that online research can be really helpful but there are a lot of people out there spouting harmful misinformation. The University of Chicago Celiac Center has some great information http://www.cureceliacdisease.org/ with a free ebook, current studies, and FAQ sheets that might help you wade through.
Most of all, be gentle with yourself. Getting a new diagnosis, learning to read labels, and finding your voice in a society not adapted to your needs takes time and energy. Be kind to you. Stand up for your health. You will be okay.
I agree with you CD is awful, ugly and never goes away. Finding good support is difficult.
I had to educate my primary care doctor regarding Celiac Disease, what tests should be ordered, told him he was wrong on the nutrition advice he was giving, etc. Provided him with a lot of reputable reading material and published scientific studies. At least he was open to learning. It also helped him to suspect and diagnose Celiac in some of his other patients with long term undiagnosed Celiac symptoms. Keep educating yourself and others, even those in the medical field. The misinformation abounds and isn’t helped by the misinformation on some “reputable” celiac organization websites. And find a doctor who has knowledge of celiac disease, or is at least open to learning.
When I was diagnosed with Celiacs, I was also diagnosed with a collagenous colitis, which could only be seen on the biopsy. The treatment for the colitis was 8 weeks of a mild steroid that targets the gut. The colitis was caused by Celiacs, and left untreated would have caused a lot of damage. In my case, the steroids helped a lot. But, it was always clear that it treated the colitis. The treatment tor Celiacs is living a gluten-free life. So, I can see on some level, where this mis-guided and uninformed doctor got the idea to use steroids. But, this is still an eye-rolling frustrating situation.