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Should I Go To A New Doctor Specializing In Celiac?

NYCCeliacMom

By NYCCeliacMom
in Doctors

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NYCCeliacMom Apprentice
NYCCeliacMom
Posted

My daughter was diagnosed in November by a pediatric GI. I saw a GI three years ago b/c I was anemic and had various digestive problems referred t as IBS by my internist. The GI did a conoscopy and an endoscopy. I had very positive bloodwork for celiac done a few weeks ago. At the consultation before the most recent endoscopy was sceduled, the doctor told me he didn't consider celiac for me three years ago because celiacs are "pale and thin". I am 30 lbs overweight and have rosecea. This saturday I had the endoscopy. He came in as I was waking up and said he had compared the pictures from 3 years ago to today's and there is much more blunting of the vilii. I was not able to respond much at the time but am very clear that he said that, which means to me he should have disgnosed celiac or at least done the bloodwork three years ago. This would have spared my daughter a lot of pain. Do most people find GIs that specialize in celiac?

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ShayFL Enthusiast
ShayFL
Posted

Please "fire" that idiot!!

Pos Blood and Pos endoscopy. You have CELIAC disease and should go on a gluten-free diet immediately. And it is for life!! Save yourself other autoimmune diseases, lymphoma, cancers, etc. gluten-free so you can live a normal healthy life.

And your daughter too. If she had Pos tests and with you being 100% Celiac, she should be gluten-free immediately and for life as well.

If you can find a BETTER doctor then switch, but you do not need one now for Dx. You have a diagnosis whether that GI says so or not.

happygirl Collaborator
happygirl
Posted

Get copies of your medical records for yourself and daughter, and take them with you to a doctor that is recommended for Celiac patients. Do a search on this board, post a question looking for a doctor, and/or contact the local Celiac support group and ask for a referral to a doctor that their members are satisfied with. While you do have a diagnosis, there is follow up care that is necessary for those with Celiac.

Columbia's Celiac Center: www.celiacdiseasecenter.columbia.edu

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

I would not only fire the idiot doctor, I would write a formal complaint to the insurance company that paid for both endoscopies, bloodwork, etc. He cost them thousands of dollars, AND CAUSED YOU CERTAIN RISK TO YOUR HEALTH AND YOUR DAUGHTER'S, by not diagnosing you celiac based on positive tests (in every way!) THREE years ago. :ph34r:

Normally, I am against the whole idea of malpractice lawsuits, but in this case, I'd seriously consider it.

mef Newbie
mef
Posted

I was overweight too!

I think you should switch doctors because you no longer trust him--and he dismissed your concerns.

While a GI doctor did my endoscopy, my PCP and my rheumatologist handle my case now. My GI doctor hadn't seen a celiac who presented with non GI symptoms before. He, therefore, suggested I stay with the doctor I felt comfortable with. I think the method has worked. While someone may have celiac specialist on his/her title, consider the person who will be there for you. I don't have a celiac specialist on board, but my doctors work to stay up to date with research.

I hope you have success in finding a new care provider! good luck!

NYCCeliacMom Apprentice
NYCCeliacMom
Posted
  • Author

Thanks for all the replies. We are on a gluten-free (despite mishaps) now at home, and I have an appointment for my daughter with the Columbia Center nutritionist at the end of January. I am going to get my records from the ignorant GI and take them to another doctor. I am not sure about pursuing it further (a bit overwhelmned right now) but will make sure my internist does not refer to him.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Welcome aboard!

It IS daunting at first. I was diagnosed nearly 3 years ago, and I remember crying for 2 days, as I thought I would never get to taste anything good ever again.

I was SO wrong!

There are brilliant people out there, who come up with flour blends and recipes for EVERYTHING--and it all tastes wonderful, just as good as the gluteny originals. About the only things I haven't yet been able to duplicate are puff pastry and Pepperidge Farm Milano Cookies--and I actually have gluten-free recipes for them, I've just not been brave enough to attempt them (yet).

I used to mix up my own gluten-free flour blends, but for the most part, I order gluten-free flour in bulk from www.betterbatter.org. It's a little bit more expensive than mixing up my own, but not as much as I thought it would be, and it's delivered right to my door--no special trips to Whole Paycheck I mean Whole Foods, and no messy kitchen, not to mention time saved.

They have great recipes at www.betterbatter.org, too. I use their challah mix in the bread machine, and my family demolishes it within 24 hours.

Please post any questions you may have on this site, or any other celiac site you find. There are always people out there who have been dealing with this for decades, and they are full of great advice.

Even in the past 3 years, I've noticed a HUGE increase in the number of gluten-free products and even gluten-free BAKERIES out there. I think it will continue to get easier, as more and more people get diagnosed.

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mushroom Proficient
mushroom
Posted
I've noticed a HUGE increase in the number of gluten-free products and even gluten-free BAKERIES out there.

I don't know how I would manage without my gluten-free bakery; not just wonderful breads, rolls, cookies, but things llike quiches, pizza, sausage rolls and bacon and egg pies (New Zealand specialties), pastry. doughnuts, muffins, bread crumbs, gluten-free sauces, the list goes on and on, even sponge cakes. They are wonderful!

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Oooh, can you tell us what a New Zealand egg pie is and how to make it????

mushroom Proficient
mushroom
Posted
Oooh, can you tell us what a New Zealand egg pie is and how to make it????

I have not tried to make this gluten free but I am planning to try it with the GFB pastry:

BACON AND EGG PIE

2 sheets pre-rolled flaky pastry

1 onion, chopped

1 cup chopped bacon

1/2 cup mixed vegetables

2 tablespoons spicy chutney

6 eggs

milk

Use 1 sheet pastry to line a 20 cm square shallow pan. Sprinkle onion, bacon and mixed vegetables (whatever you have left over) evenly over pastry. Dot the chutney on top. Break eggs evenly over, piercing the yolks so they run slightly. Carefully lift second sheet of pastry over filling and seal edges. Brush top with milk. Bake at 200 degrees centigrade (approx 400F) for 40 minutes or until well risen and golden. To serve cut into squares. Serve hot or cold. Serves 6.

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