Podcast Transcription
Welcome to Episode 2 of Dear Gluten Dude where I answer emails sent to me from the gluten-free community regarding a whole range of topics. Today we’re talking about getting conflicting information from various doctors and who to trust and who to listen to when you are newly diagnosed with celiac disease.
This episode is brought to you by Udi’s…the swiss cheese of gluten free bread. Udi’s: Cause you can’t have quality if you don’t have quality control. Ok that was just a joke. No sponsors here but I do have a really cool mobile created specifically for the celiac community. Check it out at GlutenDude.app. Ok…let’s go to the inbox.
“Hey Gluten Dude. I have just been diagnosed with Celiac disease 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; they were very thorough and very informative.
When I got back home, the local 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. Who is right here. Two conflicting things that are very different and no where to go. Thanks.”
Thank you! This stuff frustrates the ever living heck out of me. Can you imagine if this was a boxing match between these two?
– [bell] In this corner, with 6 million patient visits per year and over 200 locations, the No. 2 ranked hospital in the nation ….the Cleveland Clinic [crowd noise]
– AND in this corner, with 37 brain cells, his head up his butt and a medical degree from the Acme school of medicine…the local physician [boos]
– Ok, first things first, your local doctor has no friggin idea what he or she is talking about and should have their medical license taken away.
– I am a bit confused how the Cleveland Clinic diagnosed you with celiac disease without an endoscopy since the gold standard is still the blood test plus the endoscopy. But given their experience, I’d trust their diagnosis
– Ok…let’s take each item one by one.
– Item 1: How serious is celiac disease? Cleveland clinic explains the seriousness of celiac disease, but the local doc says celiac disease is not so bad and “many say” its effect on the body is overrated. Who are the “many” that are saying this? Late night comedians? The media? Marketing companies that use gluten-free as a punchline? Untreated celiac disease can lead to the development of other autoimmune disorders like Type I diabetes and multiple sclerosis (MS), and many other conditions, including dermatitis herpetiformis, anemia, osteoporosis, infertility and miscarriage, neurological conditions like epilepsy and migraines, short stature, heart disease and intestinal cancers.
– Item 2: Is there a cure for celiac disease? Cleveland clinic says there is no cure; you just have to get checked and follow the diet. The new doctor says Steroids would fix this just fine. Ugh…what a bonehead. According to the Mayo Clinic, if your small intestine is severely damaged or you have refractory celiac disease (where the intestine won’t heal), your doctor MIGHT recommend steroids to control inflammation. But it does not FIX celiac disease. The only FIX is a 100% gluten-free diet. For life.
– Item 3: How often do you need to follow up with your doctor? The Cleveland Clinic doctors say that with his family history of cancer and heart disease he would need to be followed up on with a colonoscopy and endoscopy every one to two years. The new doctor says five to ten.
– Ok…at this point, who do you think you would listen to? A family history of cancer and heart disease, and your local doc wants to wait up to 10 years for the next procedure. I. Don’t. Think So.
– Sadly enough, this is not a unique situation. I have a page on my website dedicated to Doctor Horror Stories. The medical community is still so far behind when it comes to celiac disease. This is one of the reasons 80% of people with celiac disease are undiagnosed. 80%! Think about that. That means millions of people are walking around sick and miserable where a simple diagnosis would help them. It’s so frustrating and so sad. A cynic would say since there is no pill to treat celiac, there is less motivation to diagnose it. Thank goodness I’m not a cynic.
– In my opinion, when a patient has a range of symptoms, celiac disease should be one of the first things checked.
– So my final advice to my fellow celiac who wrote me, don’t listen to you local doc. Don’t even go to your local doc. Do some research and try to find yourself a qualified GI doctor who will give you the care and the information not only that you need but that you deserve as well. Celiac disease ain’t easy. Don’t let a doctor make it any more difficult than it needs to be.
And that’s a wrap of Episode two of Dear Gluten Dude. Thanks for listening. If you’ve got questions about living with celiac disease, send me an email and I’m more than happy to help. Just mosey on over to glutendude.com and send me a message and who knows it may even become its own podcast episode. And please do not forget to check out my mobile app over at glutendude.app. If you’ve got celiac disease, this app will help you live a better gluten-free life.
Til next time my friends.
It’s so sad that today they still say eat gluten free and send you on your way. Also, that there are still GI Docs that take Celiac patients when they have no clear idea about how horrific this disease can be. Focus on healing your body. De-stressing and creating health.
Oh My, Dude! I would love to see this published everywhere- it is so “en pointe!” I hear horror stories too and it really bothers me. Like you, I recommend seeking out a Board Certified gastro doc at a medical school or medical society listing. Even gastro docs are not always familiar with CD. Unfortunately, medical schools spend only 15 min on it and all (300) the other autoimmune diseases. My gastro doc told me he is no longer requiring patients to eat gluten before the endoscopy as too many were ending up in hospitals. Instead, he orders a genetic test to see if the genes are present. If not, and the symptoms are present, then that’s a diagnosis of NCGS. If the genes are present, then he can do the endoscopy and get the biopsies if necessary without making them sicker. He told me other Board Certified doctors are also doing it that way. He checks Vit D and Vit B levels too- another way CD shows up. As far as a family with an extensive history of cancer- especially digestive cancers, I cannot imagine any doc telling a patient to wait 5 or 10 years – that’s just crazy. Oh, I like to remind people half the doctors practicing graduated in the bottom half of their class (and invariably become the dermatologists and allergists). do the research first! It’s no wonder doctors say celiac disease is the most difficult to diagnose as it masks as so many others. Keep on truckin’– you are doing a good thing.
As a person with arthritis and other issues, I can confirm that the SYMPTOMS of being glutened will go away with a 7 day dose pack of steroids. But that’s all. It doesn’t solve the problem. Next time you eat gluten, whammo, your villi are damaged again. So if Celiac is possible or likely, get that checked. Not a cure.
Imagine if diabetics were told to eat less carbs and sent home. Then when their feet were turning blue, it wasn’t a recognized manifestation of diabetes. That’s exactly what happens with Celiac. There is a range of extra-intestinal manifestations of Celiac which is documented pretty well in Pubmed, and it stays there, never leaving the research arena and entering the clinic. Due to…. apathy? I don’t know.
I am having this issue with my 3yo daughter. Her GI specialist is great but won’t see her for general health issues. Her pediatrician is not well versed in Celiac Disease. So what do I do when she’s showing reaction symptoms for 30+ days, (with ZERO gluten) combined with an ear infection and croup cough. Who helps me? Pediatrician prescribed oral antibiotics which can not be confirmed as gluten free. So to eliminate the ear infection I need to give her a mystery liquid mixed with a mystery powder for ten days.
I go to one of the best GI docs there is – but the advice is one line. Eat Gluten Free. That’s it.
As a mother, there is no medical support when it comes to raising a small child. We feel very alone.