to many if and buts

[whosoutthere]

Hello, I was just diagnosed with Celiac. I was told by the Cleveland clinic that this is not a good disease and because of my family history my cancer and heart disease chance will raise significantly by about 50 %- you would have to know the history. The doctors where i live say this disease is way overrated and many people get diagnosed and never really have many problems with it. They suggested that steroids would basically fix the problem and follow the diet but not go over board with it. Cleveland said I needed to have a colonoscopy every 2 years and that a lot of people never completely heal and many even on the diet continue to have symptoms. Cleveland told me steroids would help with the inflammation and they could be taken for about a week and nothing long term as there is no cure for this and taking medications especially antibiotics and steroid packs could cause other problems. As for the colonoscopy I was told here that I only need it once every 5 years or so because there is no real evidence that this cause any other problems. Cleveland gave me web sites and studies I am about to look. What is your take on what I have been told and what kind of doctors do you use.
Thanks

[Scott Adams]

Welcome to the forum!

The one thing you haven't really made clear with the directions they gave to you is what they told you about the necessity of you going on a 100% gluten-free diet for life...did they mention this? This is the only proper medical treatment for celiac disease, and not steroids or antibiotics. 

The only reason I can think of that they might recommend steroids to you is due to the current state of your villi, and the inflammation levels they may have seen during your endoscope (an endoscope is done to diagnose and for follow up care with celiac disease, rather than a colonoscopy). It's possible that your doctors want you to take steroids to aid your recovery, but in most cases just a gluten-free diet will begin your healing process. Likewise, if you have an infection you may need antibiotics, but neither would treat celiac disease, only side issues caused by celiac disease.

As for heart disease, celiac disease has been linked to certain heart issues, but in general if you are on a healthy gluten-free diet for life, one that is high in fiber, those risks are also mitigated.

This article may be helpful:

 

[trents]

Assuming you are accurately representing what was told you by the doctors then you were given a significant amount of misinformation. Not uncommon, as many doctors are still fairly uninformed about celiac disease. Most importantly: 1. It is not true that many diagnosed with Celiac don't take the gluten free diet too seriously and don't have a problem. That only addresses classic, overt GI symptoms and not other kinds of damage that is going on behind the scenes. 2. Steroids is a very short term solution to a life long medical condition. 3. Recent studies have shown that most people who believe and claim they are eating gluten free really aren't. They are actually eating less of it. Particularly those who still dine out and are getting regular cross contamination. Therefore, most people who aren't experiencing healing when they attempt to eat gluten free are just not doing a very good job of eliminating gluten from their diet. It can be very challenging to eliminate all gluten from your diet and there is a learning curve. But it is also an imperative unless you don't mind trashing your body.

[RMJ]

Something doesn’t make sense here - perhaps because of your family history?  Steroids are not typically given for newly diagnosed celiac disease.  Colonoscopies are not performed as a followup for celiac disease either - wrong end of the gastrointestinal tract.