Gastro Doctor says today food has NOTHING to do with my MC

[brendaragland]

I finally broke down and went to see my last gastro doctor. Having a pretty severe flare up that isn't responding to food eliminations. He wants to do a Flexible Sigmoidoscopy to reaffirm I have MC, for the third time in four years. If confirmed again then steroids to bring remission. I told him that I've done the steroids twice before and the WD just comes right back. His response was I'd have to be on a maintenance dose if it comes back. MC is an inflammatory disease period. End of discussion....

He had no interest in my food intolerance (self diagnosed), my rashes, my flu like symptoms, or anything else I tried to talk about. I think we'll get this "confirmation" then I'm looking for a more open minded doctor.

Thoughts please?

[grhandlan@comcast.net]

Have you tried Allegra? I am able to manage my MC with 90mg of allegra once a day. I am still grain and dairy free, but i find the allegra works great if not better than the steroid. And less side effects----

[Erica P-G]

Hi Brenda,
I would have ruffled feathers right now too...between wanting to cry and be angry all at the same time. I really think you need to go on a search and try another Dr. I asked everyone I could who would be helpful in a naturapathic way...and I probably have the most bang for my buck with the Dr. I am seeing at the moment. He may not be my super great ideal one...but at least he is listening to me and is letting me try to heal myself with in reason.

I would suggest an ELISA blood test mine was called E95 and A95 Extended as a beginning start (blood isn't 100% but it matched my Enterolab results very closely to the point it was a good choice for me, then if you can afford Enterolab I would really save up for that one and do it as soon as possible. It is rough trying to second guess ourselves when we may not be perfect getting a daily diary of foods and what we did when and on what day to remind us why we had a good or bad day.

I would forego the Flexible Sig....I do not know why Gastros think they need to 'reaffirm' something three times....the procedure will most likely just make you feel yucky once again on top of already not feeling up to par.

If you don't mind give us an idea what you are eating at the moment to the best of your ability and also your approx intake of VitD3 and Magnsium (internal or external). Perhaps there is something in that info someone may be able to help pin point on while you are in limbo finding a Dr. that will listen to you.

Hugs
Erica

[brandy]

I just started Allegra again (after 3 weeks on Zyrtec and getting worse). I seem to be responding better to Allegra.

[hollyweb]

Dear Brenda,

So sorry this is continuing for you! Agree with everything that's been said here. My GI doctor is the same, and told me the same things. If he were to tell me to go through another procedure, I'd simply say no. My understanding is that an MC diagnosis is very definitive; I actually have photos of the slides the pathologist used from the biopsy done during my colonoscopy. If you've already been diagnosed, unless he's looking for something different (another type of IBD, new polyps, diverticulitis, etc.), what's the point in putting your poor self through that again?

I agree about the antihistamines, it sounds like you may have histamine issues (so do I) and those have helped me greatly, too. During my last visit to my GI doctor, he wrote me a year's prescription for Budesonide (I can't afford it; it didn't work for me, and I don't want to take it the rest of my life!) and he said "goodbye". I actually have an appointment next month to see a different GI doctor (I've been waiting to get in to see him for 6 months, so at this point, feel it wouldn't hurt to meet with him and see how he looks at MC, my EnteroLab results, my progress, etc.) He was also recommended to me by my celiac sprue contact, and he specializes more in the area of the pancreas, so knowledgeable about food intolerances (whether or not he sees this as a part of MC is yet to be discovered!).

Plus, going to the local celiac support group meeting will allow talking further with people with food allergies (and non-celiacs with multiple ones too) about their experiences with local doctors. Is that an option for you? Or even contacting your closest celiac sprue group by phone and asking to talk with someone about that?

Definitely encourage you to try to find a different doctor. Many of us have gone to naturopathic doctors and gotten help with supplements, etc., plus even if they aren't up to speed with MC, they'll often be able to recommend a doctor who is, with a more open-minded approach to healing.

Keep us posted, and wishing you all the best! This is such a huge problem! Reminds me of the old movie with William Hurt playing "The Doctor"; a very egotistical physician who developed cancer, became a patient in the hospital where he practiced, and suddenly realized how his patients actually felt, and finally understood with true compassion the extent of their suffering, loss of dignity, etc.

~ Holly

[Marcia K]

Hi, Brenda. Most GI's won't acknowledge the relationship between this disease and what we eat. I was fortunate to figure it out with the help of this group & Tex's book. He said he would put me on medication for Crohn's Disease if the D came back. I knew then he had no idea how to help me. I don't have any advice for you but I wanted to let you that you're not alone with the GI frustration.

[hollyweb]

It seems most doctors in America go straight to drugs for treatment. No surprise, due to all the advertising for drugs, and all the pharmaceutical reps that continuously visit them and probably supply them most often with "new" information. I would hope that most doctors DO want to offer effective treatments to their patients; with something like MC, as Tex has said over and over, they simply don't know the answers (and may not realize how many IBS, psychiatric and other patients actually have MC, pre-MC, magnesium deficiency) so they don't take the condition seriously).

The fact that there also seems to be a new increase (not enough, not fast enough, IMO) in the numbers of NDs, ODs, and alternative / functional medicine doctors indicates that not all medical professionals agree with this protocol.

Just wondering ... is chronic magnesium deficiency proven to be a potential cause for triggering MC? It might be one, perhaps in combination with something else ...

~ Holly

[brendaragland]

I thank everyone for their guidance and sharing your experiences. I cancelled the procedure and told the nurse that it would be out of my pocket and since I've already been diagnosed twice I think I'll put my hard earned money to use getting food tolerance testing done. She was pretty much speechless Oh well.
Going to buy Wayne's book tonight, started taking allegra today and I do believe it helped. Drinking bone broth and eating bland safe foods. Low on vitamin D so I'll be working on finding a good supplement.

Thanks again. And everyone take care

[tex]

Just wondering ... is chronic magnesium deficiency proven to be a potential cause for triggering MC? It might be one, perhaps in combination with something else ...

There's no published research implicating magnesium deficiency, nor is it listed as a cause for MC or any other IBD in any medical articles that I'm aware of, but it almost certainly contributes to the development of the disease because published research demonstrates that magnesium treats/resolves inflammation. It doesn't take a rocket scientist to recognize that this implies that magnesium deficiency almost surely causes inflammation, and as we are all aware, inflammation is the root cause of MC.

Tex

[tex]

Holly,

Edition II will describe in detail how a magnesium deficiency can cause or exacerbate inflammation. It's not easy to explain in a short paragraph or 2, so I won't attempt to do that here, but the bottom line is that magnesium deficiency can definitely cause inflammation and inflammation causes and perpetuates IBDs.

Tex

[hollyweb]

Thank you, Tex! Glad you took the actions you did, Brenda, and that you had a better day, too!

~ Holly