Anyone Ever Referred to Mayo, Cleveland Clinic etc.?

[Rhobhan]

I was diagnosed with celiac in 2007. For eight years I did well, gaining back weight and feeling decent. 
 

I spent from spring of 2015 until December of that year suffering from perhaps a multiple gluten in that had occurred while traveling. I experienced chronic diarrhea, fatigue and my weight dropped to a point lower than when I was first diagnosed. I went to two different gastroenterologists during that time and was subjected to colonoscopy, endoscopy, two pill camera scans, and CAT scans with the barium swallow. I had multiple lab work done. The results? I was low on zinc!

 

Taking prescription zinc supplements had negligible effects, until I started taking a quality probiotic. Slowly my symptoms ebbed.

I have been blunted several times since then—always while traveling—and I faced months-long symptoms after.

Currently, I’m into the 5th week of suffering the results of glutening compounded by gastroenteritis on top of it.

My wife and friends are urging me to consult one of the last-resort clinics when your local docs are stumped. I insist I am very sensitive despite near obsessive vigilance, and it just hits me harder and harder as I age. I am now 70. There is no cure and my multiple scans , scopes and bloodwork show nothing abnormal.

I marvel at folks who mention they suffer the effects of gluten for five or six days. I would kill for that!

Have any of you had any experience or success going to Mayo, University of Chicago or similar clinics?

Thanks for reading.

[NNowak]

So sorry to hear of your challenges. Have you considered SIBO?  What you describe, particularly the long flares, seems like your GI microbiome is off. This causes malabsorption and many other issues due to deficiencies. Have you considered a functional medicine doctor?  They are very thorough and look at the whole body to find the problem rather than treating symptoms. Functional Medicine is more adept at overcoming/managing autoimmune diseases than traditional western medicine - an opinion based on my research and personal experience. 
 

Without knowing that the specialist is an autoimmune expert, I wouldn’t want to schedule an appointment elsewhere. 
 

Good luck. 

[cyclinglady]

I have not been to Mayo or the University of Chicago, but I am older and have two other autoimmune disorders in addition to celiac disease.  I have found that gluten exposures trigger not only my celiac disease, but ramps  up my other autoimmune (AI) disorders (Hashimoto’s and Autoimmune Gastritis) and Mast Cell Activation issues.  My last gluten exposure about two years ago lasted for over six months.  A month of consuming mushy stews and soups three times a day because it hurt to digest anything (not to mention vomiting and all the other pleasantries of celiac disease) while battling GERD symptoms, and daily all-over-my-body hives that erupted every afternoon for over six months starting with abdominal pain.  My GI wanted to scope me months later and my allergist blamed the hives on autoimmune or Mast cell issues.  I insisted on trialing the Fasano diet (strict gluten-free) but still had lingering GERD symptoms and a very elevated DGP IgA.  Almost a year after my gluten exposure (did I forget to mention a tooth infection, the flu and a cold all within same six week period of that initial gluten exposure?), I agreed to an endoscopy (very elevated DGP IgA still).  Results showed complete healing of my small intestine (you should see actual happy villi and the pathologist’s report supported it).  But it found a gastric polyp and gastric biopsies indicated autoimmune gastritis which ebbs and flows.  

I am almost 60.  I consider myself very sensitive to gluten.  As a result, I do not eat out except at dedicated gluten-free restaurants.  We plan our vacations around gluten-free restaurants, we travel in an RV, or we have learned to eat on the road (aka cooler and the grocery store).    I do not take risks.  It is not worth six months of misery and the possible introduction of another AI.  

If your endoscopies and colonoscopies and other tests are normal, chances are you just take a long time to recover from celiac disease flare ups.  Avoiding gluten at all costs is prudent.  It is what it is.  Back luck.  

I also know that I might be developing an autoimmune disorder.  But as I have told my doctors, what am I to do?  Just move forward.  Do not eat gluten, exercise, reduce stress and avoid other foods that  am intolerant too (like garlic and onions).  (I am also low carb and a non-processed foods gal.)

While you can find a specialist, I think you already know the answer.  You have to avoid gluten at all costs (so do not get arrested!)  It does not sound like you have SIBO or refractory celiac disease based on all your test results.  

How did you get exposed to gluten five weeks ago?  Maybe time to make your house gluten free or just order a glass of wine at dinner.  Enjoy the company and stay well.  

 

 

 

Edited January 21, 2020 by cyclinglady

[Rhobhan]

Thanks to the above who responded to my post.

 

[Fenrir]

FWIW, I think sometimes these renown medical groups aren't really any better than others in some areas. I'm from MN where Mayo HQ is, just as an FYI. I think generally Mayo is probably one of the best Cancer and Cardiology hospitals. 

When it comes to GI they are still good but I went there for my problems and they didn't figure it out. I went to Minnesota Gastroenterology(MNGI) and they had it figured out within the first visit. 

If you are in MN i'd check with MNGI, not only is everyone in the clinic a GI specialist but they have several Dr. that specialize in a specific GI condition including specialists in Celiac Diseae, Crohns...ect. 

They also have their own pathology lab too and they are all specialists in GI pathology.