Oddly, no mention of gluten

Deb · Post by **Deb** » Mon Jun 04, 2018 4:43 pm

I had been encouraged that Mayo was really starting to get the gluten issue. Apparently not across the board.
http://www.postbulletin.com/life/health ... 8033b.html

Post by **tex** » Mon Jun 04, 2018 6:23 pm

I really believe that as a group, gastroenterologists actually are an incredibly hard-headed bunch.

It's becoming painfully obvious that a few of them will probably never learn how to treat MC. That's sad.

Tex

humbird753 · Post by **humbird753** » Tue Jun 05, 2018 7:23 pm

I agree that it is sad. I go to Mayo and hear it first hand from the doctor I go to that gluten/foods in general have nothing to do with MC. I was surprised when she said that foods play a big role with arthritis. I agree with her, of course, but remain stumped that they aren't connecting the foods we eat to MC.

persevere · Post by **persevere** » Wed Jun 06, 2018 7:55 am

Maybe I misread the above, but Mayo posted this to eliminate gluten and dairy.

https://www.mayoclinic.org/diseases-con ... c-20351483

Giving up dairy is the hardest to.maintain.

Does anyone see an improvement with arthritis with remission?

Post by **tex** » Wed Jun 06, 2018 8:17 am

Persevere,

You missed the point of Deb's post. Despite their website article, the Mayo's doctors still continue to disregard the website and insist that diet has nothing to do with MC. The Mayo is talking out of both sides of their mouth, as the old-timers used to say when referring to someone who s full of BS.

Yes, we all see improvement and often elimination of arthritis symptoms after changing our diet. Eighteen years ago I had severe arthritis and had to use a cane to walk. I have no arthritis symptoms now.

Tex

tommyboywalker · Post by **tommyboywalker** » Wed Jun 06, 2018 6:54 pm

I agree, we are seeing conflicting information from the Mayo.

I am being treated by a doctor in St. Cloud MN who did his residency at the Mayo in Rochester MN and it is my understanding that the guru for Microscopic Colitis there is Dr. Darrell Pardi.

We are following Dr. Pardi's protocol for my treatment and that does include eliminating both dairy and gluten.

The below link from the Mayo does make mention to eliminating both gluten and dairy, but other references from the Mayo and from other Mayo doctors do not.

Mayo Clinic: Please provide a consistent message about the relationship of gluten AND dairy to Microscopic Colitis!

https://www.mayoclinic.org/diseases-con ... c-20351483

jgivens · Post by **jgivens** » Fri Jul 06, 2018 6:48 am

I just have to share what my gastroenterologist had the audacity to suggest. I wanted to slap him. I have come out of remission after 6 years. I was able to take Pepto intially the first time around with this and did Enterolabs to find out what sensitivities I had. I went to a wonderful gastroenterologist who was very interested in Tex’s book and fascinated by the whole idea of the support group online. He believed that diet had a big part to play in healing of MC and admitted that gastroenterologists had a lot to learn about it. He has retired so I was forced to see one of the other partners in the same group. What a difference! This guy didn’t even want to entertain the idea of the Enterolab results being valid. Just smiled condescendingly and wondered if a blood test had ever been done for celiac disease. I told him that I did not have celiac disease, but that I was sensitive to gluten. “Well, the blood test is 90% accurate for gluten sensitivities. I suppose if you WANT to continue to be G-F, that is fine, but maybe you would like to go back on gluten and we could do another colonscopy in a few months to see if there is any more damage to your colon.”
I will not print what I was thinking and wanting to say in response, but suffice it to say, I will use this guy for the prescriptions I must get, but I will not trust him with much. I am soooo disappointed. Maybe Mayo would like to hire him.

Post by **tex** » Fri Jul 06, 2018 7:30 am

All I can do is shake my head in disbelief at such ignorance. Good for you for being able to keep your cool. The medical community doesn't even have an approved test for detecting non-celiac gluten sensitivity, so his statement about their test for gluten sensitivity being 90 % accurate is absolutely ludicrous.

Thanks for sharing.

Tex

SJH · Post by **SJH** » Fri Jul 06, 2018 3:17 pm

I try not to mention anything I have learned from the internet or in my "research" regarding my medical condition(s) to my medical practitioners. Their attitude seems to be that we are challenging their expertise and/or questioning their authority. Or maybe they think we are not too smart and we are trying to self diagnose and don't have a clue. Maybe they aren't aware of such excellent sites such as this one because they don't want to have to change their thinking.

I told my PCP about this website and the Enterolab tests and he basically ignored me. I was fully versed in diet changes and the sage advice I have be given here. I tried to share the knowledge with him to no avail. He also told me that gluten is not a problem with MC. It's hard to discuss something like MC when you know your professional is so utterly clueless. As has been stated so many times, all most physicians want to offer is a pill. So I go to my appointment and try to keep a straight face and behave myself.

I have my first appointment with the GI next month. I'm only going to see if he has anything to offer. I don't expect he does and I probably won't go back.

I am thankful for the very few physicians that are willing to listen and learn. Unfortunately they are few and far between and not my doctors.

DeeDee · Post by **DeeDee** » Sat Jul 07, 2018 8:21 am

I have seen 2 GI doctors at the same clinic. One will listen and suggest we “try” things and said the Mayo would provide same answers. The other just pushes pills and fiber. Laughed at the stool testing idea. I was asked to complete a survey of my last visit with the arrogant GI doctor. I did not give a very favorable review. They don’t care.

jgivens · Post by **jgivens** » Sat Jul 07, 2018 1:34 pm

Sigh. All I can think is that as there are more and more of us diagnosed and they have to deal with our chronic complaints of D, cramping, rib pain—or pain all over, fatigue, etc. etc. the gastroenterologists of the world are going to have to get better at thinking! They will be forced to think about other ways to treat us than just pushing pills and patting us on the head when we ask about the role of diet, when their pills don’t work.
I really believe that when I told him that I had been in remission from MC for 6 years by being very careful of my diet, my doctor thought I was just nuts! Well, obviously he did to suggest I try gluten again and have another colonoscopy to see what would happen to my gut. That, OR he wanted to make some money doing yet another colonoscopy.