Since I'm new to this MC diagnosis and still learning my way around it, I would love some input on how to get the most out of my upcoming doctor appointment. It will be the first appointment since my diagnosis. When he diagnosed me (with colonoscopy biopsie) he basically said I have microscopic colitis,,he gave me questran,,and sent me on my way. I took it upon myself to research and learned about the gluten connection as well as the graves disease connection (I have graves disease, diagnosed 5 years ago.) The doctor didn't say anything about gluten causing the problem.
The questran has cut my bathroom time in half, but I still have D daily, a few times per day. The doctor said the questran may constipate, well, that definately hasn't happened.
My biggest questions are...
1. Is there a test the doctor can do that can determine wether or not I do have a gluten intolerance? I have been gluten free for 2 weeks and there has been no improvement in the D. The doctor did run a celiac test which was negative, the test was called "antiendomyseal antibody test." I am aware of the enterolab, but I was hoping the doctors may have something I could request, maybe someone here might know?
2. Should I request a different medicine besides the questran? Or is questran and staying gluten free a good plan of attack?
If there is anything else...any other testing, or medications, or anything you can think of that I should discuss with my doctor, please let me know. Gosh, I just want to feel better!!
What should I ask my doctor? I need some input and opinions
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
-
IDreamInColor
- Adélie Penguin
- Posts: 167
- Joined: Tue Sep 14, 2010 5:20 pm
- Location: Ohio
Hi "Dreamer"!
In answer to your questions:
1. Most of us have negative celiac blood tests despite significant gluten intolerance. I can't think of anything better than the Enterolab stool test at this point for you. Some docs will refer for Dr. Fine's tests so that insurance covers them. There is an article about gluten sensitivity without fullblown celiac disease on Dr. F.'s website. If you think your doc is open-minded, you might print it out and show it to him. Check it out at www.finerhealth.com/Essay/
2. The usual initial medications used are asacol or Entocort. I'd guess that most here have found Entocort to be the more effective of the two.
Finally, here is something I wrote recently about what we wish our docs knew about MC. This represents the collective wisom of hundreds of MC sufferers on the website. I don't know if your doc is open to it, but if you share it, you might mention that I am a physician with MC who has been in complete remission with diet alone and who now has a normal biopsy (after 10 years). Here goes:
WHAT WE WISH OUR GI DOCS KNEW ABOUT MC
1. Suffering from diarrhea 24/7 is a life-altering experience. It is NOT a “minor inconvenience”, nor is it something anyone would wish to “live with”.
2. Every colonoscopy MUST include multiple biopsies from various areas of the colon.
3. A diagnosis of Irritable Bowel Syndrome (IBS) cannot be made without multiple biopsies of the colon that rule out MC.
4. MC can affect anyone…..from toddlers to pregnant women to seniors. Even dogs have been diagnosed with MC and prescribed Entocort!
5. Fiber does not help MC.
6. MC does not “go away” or resolve after several years. However, its symptoms can be managed successfully over the long-term with ongoing diet or medication or both.
7. Almost ALL with MC also have food intolerances, primarily gluten, but often other intolerances like dairy, soy, yeast, etc.
8. The gluten sensitivity that goes along with MC is NOT picked up by the classic tests for celiac disease (endoscopy, blood tests for IgA antibody or tissue transglutaminase). These tests will be negative. However, it is just as severe a sensitivity as it is in full-blown celiac disease.
9. Entocort must often be used longer-term than the literature would indicate………up to a year and even longer if an elimination diet is not being followed. Also, it must be maintained for longer periods before it is tapered.
10. The research, lab tests, and recommendations that have been most helpful to date to those with MC (after initial diagnosis) are from Dr. Kenneth Fine (www.finerhealth.com). Dr. Fine performs STOOL antibody tests for gluten, soy, yeast, dairy, eggs, etc. to determine food intolerances which must be eliminated. He also performs genetic testing and has found specific genes (other than the classic DQ2 and DQ8 for celiac disease) that predispose to gluten sensitivity.
Good luck, and keep us posted.
Love,
Polly
In answer to your questions:
1. Most of us have negative celiac blood tests despite significant gluten intolerance. I can't think of anything better than the Enterolab stool test at this point for you. Some docs will refer for Dr. Fine's tests so that insurance covers them. There is an article about gluten sensitivity without fullblown celiac disease on Dr. F.'s website. If you think your doc is open-minded, you might print it out and show it to him. Check it out at www.finerhealth.com/Essay/
2. The usual initial medications used are asacol or Entocort. I'd guess that most here have found Entocort to be the more effective of the two.
Finally, here is something I wrote recently about what we wish our docs knew about MC. This represents the collective wisom of hundreds of MC sufferers on the website. I don't know if your doc is open to it, but if you share it, you might mention that I am a physician with MC who has been in complete remission with diet alone and who now has a normal biopsy (after 10 years). Here goes:
WHAT WE WISH OUR GI DOCS KNEW ABOUT MC
1. Suffering from diarrhea 24/7 is a life-altering experience. It is NOT a “minor inconvenience”, nor is it something anyone would wish to “live with”.
2. Every colonoscopy MUST include multiple biopsies from various areas of the colon.
3. A diagnosis of Irritable Bowel Syndrome (IBS) cannot be made without multiple biopsies of the colon that rule out MC.
4. MC can affect anyone…..from toddlers to pregnant women to seniors. Even dogs have been diagnosed with MC and prescribed Entocort!
5. Fiber does not help MC.
6. MC does not “go away” or resolve after several years. However, its symptoms can be managed successfully over the long-term with ongoing diet or medication or both.
7. Almost ALL with MC also have food intolerances, primarily gluten, but often other intolerances like dairy, soy, yeast, etc.
8. The gluten sensitivity that goes along with MC is NOT picked up by the classic tests for celiac disease (endoscopy, blood tests for IgA antibody or tissue transglutaminase). These tests will be negative. However, it is just as severe a sensitivity as it is in full-blown celiac disease.
9. Entocort must often be used longer-term than the literature would indicate………up to a year and even longer if an elimination diet is not being followed. Also, it must be maintained for longer periods before it is tapered.
10. The research, lab tests, and recommendations that have been most helpful to date to those with MC (after initial diagnosis) are from Dr. Kenneth Fine (www.finerhealth.com). Dr. Fine performs STOOL antibody tests for gluten, soy, yeast, dairy, eggs, etc. to determine food intolerances which must be eliminated. He also performs genetic testing and has found specific genes (other than the classic DQ2 and DQ8 for celiac disease) that predispose to gluten sensitivity.
Good luck, and keep us posted.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.