QUESTION for TEX or ANYONE REALLY

A lot of work ahead of me · Mon Mar 25, 2019 5:11 pm

So I had my appointment last week and the doctor ran all these blood tests including for Celiac Disease but since I have eliminated gluten for five weeks now she left me a voicemail today that she wants me to eat gluten for TWO MONTHS and they are going to re-run the blood test since they didn't "get an accurate test."

I really don't want to do this. I am on my healing path and I already know if I pile in some cake, cookies, gravy, bread, etc. that it's going to be a disaster.

What is YOUR opinion on this? I think it's nuts. That would be going backwards.

Jeanine

Marcia K · Post by **Marcia K** » Mon Mar 25, 2019 5:51 pm

Hi, Jeanine. I wouldn't do it. If you're on the path to healing you already know what works.

tommyboywalker · Post by **tommyboywalker** » Mon Mar 25, 2019 6:22 pm

I have seen this before with GI doctors. They are somewhat unsure about Microscopic Colitis, but they know more about Celiac disease but in order for that test to be accurate, you have to be eating gluten for some time (I've heard from 3 weeks and longer).

But to what end is this Celiac testing? If you already have a diagnosis of Microscopic Colitis, is it really important that you know if you are a true Celiac or not? With Microscopic Colitis, you know now that you will almost assuredly have problems with handling gluten and as fragile of a recovery as you are in at this time, I wouldn't want to see you with a setback which I think the gluten could do.

I know you said that you would like to stick with this doctor, but I would think about reconsidering as she is obviously of the mindset of many GI doctors that don't have much experience with Microscopic Colitis.

I am in Minnesota as well. Where do you live? I know somewhere within this forum are recommended doctors. You may want to check into that list and get another opinion from a recommended doctor. My doctor is Dr. James Wise from CentraCare GI clinic in St. Cloud. He is a great listener. Just a thought.

But back to eating gluten just so the doctor can attempt to get another diagnosis; I just don't see the point. You already know the answer to this one!

Please feel free to PM me with any questions. We Minnesotans with MC gotta stick together! I'm not nearly as experienced as many of the others here, but I'm a good researcher and things have gone about as good as they can for me at this point (thanks to Dr. Wise, Tex and others on this forum) and I want the same for you!

JFR · Post by **JFR** » Mon Mar 25, 2019 7:10 pm

Eating gluten just to redo the blood test is a very bad idea. It will only make you sicker. Whether or not you have celiac disease is really irrelevant. Most of us here are gluten sensitive and the treatment is the same as for celiac disease, strict avoidance of gluten. So why do the test? Add to that the fact that the celiac blood tests are extremely insensitive and apt to give false negatives. A negative result therefore really tells you nothing. In other words avoiding all gluten is the best course of action whatever the result of the blood test.

Jean

TXBrenda · Post by **TXBrenda** » Mon Mar 25, 2019 7:39 pm

Ask your doctor if she would take magnesium citrate or some other laxative to induce diarrhea for two months as a show of solidarity. When she asks why she should make herself sick, you can answer, "Good question."

I wouldn't do it either, but my blood test for celiac was negative. I received a diagnosis of microscopic colitis from my colonoscopy.

carolm · Post by **carolm** » Mon Mar 25, 2019 8:13 pm

Hi Jeanine,
I’m with Jean on this. What is the point? Your MC will dictate that you go gluten free in order to heal. And what is the treatment for celiac? Being gluten free. What would be gained? Not to mention how sick you’ll be because it will surely set off a flare, even with Budesonide.

I personally think this is an irresponsible request for your doctor to make, but that aside, there just isn’t anything of value to be gained by eating gluten again just for a celiac test. If it’s negative you will go back to gf. If it’s positive you’ll go back to being gf.

Best wishes-
Carol

Post by **tex** » Mon Mar 25, 2019 8:14 pm

Hi Jeanine,

I agree with all the other responses — that "request" is nuts. Brenda's response sounds like something I would ask any doctor who expected me to eat gluten so that he or she could get an accurate celiac test result.

Jean's right — if you're going to avoid gluten in order to control MC, then whether or not you have celiac disease is a moot point. You've already got all the bases covered.

Shame on ignorant doctors who ask their patients to do such things.

Tex

Post by **tex** » Mon Mar 25, 2019 8:19 pm

Another point — nearly all doctors hate it when someone who doesn't have celiac disease follows the GF diet. That apparently irritates them worse than fingernails scratching on a chalkboard.

Tex

A lot of work ahead of me · Mon Mar 25, 2019 8:25 pm

Thank you to everyone!

I am so glad it was unanimous vote and I AGREE 100 PERCENT and am going to say no way. What is she thinking??? Even Mayo Clinic says to stop gluten when you look this up!!

YES, I am going to fire her for sure but I want to make sure I get my next month filled and my taper month then she is going bye bye for the next round (hopefully I won't have a next round after a taper but I think statistics point the other way).

Love y'all and I feel so much better WITHOUT all that crap in my body. Just thinking about eating that stuff for two months makes my colon "twinge."

Tommyboywalker: I live in Brooklyn Center and this doctor is Cynthia Sherman with MN Gastro out of Plymouth. They have numerous other doctors in their group - I might suggest a different one within? Not sure if that will go but I am going to wait until June when I taper.

Hey - the purple faced doctor might just ditch ME when I tell her no way on shoving gluten in my mouth at this stage. '

Night all,

Jeanine

A lot of work ahead of me · Mon Mar 25, 2019 8:28 pm

oh one that thing I will ad to all this and this is her basis for acting this way. She has ONE, I am not kidding you, just one patient of all her patients who has this disease and the gal quit eating altogether because she was so miserable from the D. She ate rice porridge until she almost died and is now on a feeding tube. She is going off of that one person and it's so unprofessional to base all further patient's treatments from that.

A lot of work ahead of me · Mon Mar 25, 2019 8:31 pm

Brenda:

OMG LOVE IT!

I will sleep with a grin on my face tonight!

Jeanine

CathyMe. · Post by **CathyMe.** » Wed Mar 27, 2019 4:55 am

TXBrenda wrote:Ask your doctor if she would take magnesium citrate or some other laxative to induce diarrhea for two months as a show of solidarity. When she asks why she should make herself sick, you can answer, "Good question."

I wouldn't do it either, but my blood test for celiac was negative. I received a diagnosis of microscopic colitis from my colonoscopy.

I LOVE this response. I too had a GI who told me to, "Just try some gluten", ummm......no thanks..

brandy · Post by **brandy** » Wed Mar 27, 2019 8:32 pm

We have to stop eating gluten to get into remission anyways regardless of our celiac test score. Believe me,
you don't want to go backwards with this disease.