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TinkerbellSwt

Nutritionist From Hospital

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Hi All,

I finally signed on after reading this message board for over a week.

My husband was diagnosed with Cronh's Disease after spending 5 days in the hospital last month.

We went back for the follow-up and was told he also has Celiac Disease.

This message board has helped soooo much.

I decided to post today because we are going Thursday to see a Dietitian. I thought it would really help us but after reading the comments today, I am not sure. His G. I. office made the appointment and no, we have not researched the Dietitian.

We are a little overwhelmed with all of this. I had never heard of it until last month but he had researched his symptoms and was not surprised.

This may should be under another topic but my big question is...What do you do when you have an attack?

He has meds for D (also on Entocort and Nexium) but is there anything that stops the pain?

Thanks.

Hi Frogster, and welcome. Please post this as a new thread (if you haven't done so already)...you will get more/better response to your questions.

Michelle :)

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Hi, All--Yes, there is a lot of misinformation out there. I met with my hosp. dietician just 2 weeks after I was diagnosed, and I'd already read enough on celiac to know more about the diet than she did. And don't even get me started on how huge my understanding of celiac is compared to my gastroenterologist's. I talked to a dear friend about this--she happens to be a gynecologist, and she says that her experience as a doctor has been that anytime she has a patient with a little-known disease, the patient ALWAYS knows way more about managing it than the doctor, so she's not surprised that I know more about celiac than any doctor I've ever been to. Seems like many of our posts echo this finding.

So. Here's the conclusion I came to: It's up to US (not our doctors or dieticians) to manage this disease. Luckily, there's the Internet, and great books like Dr. Peter Green's for us to use as our difinitive resources, because we sure ain't finding experts in our doctors and dieticians. Our managing it ourselves makes sense to me, because healthcare people help you when you're sick--but once we figure out the gluten-free diet (usually on our OWN), we get well, or at least some better, and the treatment is about food--not medicine. Maybe grocers should be the gluten-free experts and not doctors! (j/k).

Activism: What I think we can do to help fix the misinformation issue is this: Get. The. Word. Out. When we see wrong info, we write the company or talk to the person who supplied it. We address it gently and politely, but assertively. We recommend trusted resources. We speak at the local college's nutrition class. We meet with the health food manager at our grocery store. We teach (doctors, dieticians, restaurant workers, cafeteria people at our kids' school, our friends and family, etc.)

I'm tired already. But. My little local celiac support group is meeting with 3 grocery store managers to request certain gluten-free items be stocked, so there's my little contribution.

Susanna


Diagnosed in March 2006 by blood test and biopsy. Eleven year old son diagnosed in May 2006. Both gluten-free since diagnosis.

The Susanna (Flagstaff, AZ)

"I GOTTA have more cowbell!."

--The legendary Bruce Dickenson

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hi

i've tried the Jasmine rice also and it seems to agree with me.

kind of different taste and texture I think

anyone else try it?

Judy

My huband, kids and I all LOVE the Jasmine rice!! It smells like popcorn

when it is in the rice cooker! One thing we can still eat!!!

-Sandy

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I must have the most fantastic nutritionist in the country, I think. Katherine Musgrave. After a slew of "regular" doctors, specialists and alternative physicians, yes, physicians, she was the only one who actually set me on the right track.

It's all about finding the right person, no matter their field.

Keep hunting! :)

(and you know you're your primary health-care provider, right, yeah)

Margaret

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