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frecOregon

Member Since 14 Mar 2009
Offline Last Active Jul 02 2010 04:15 PM
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Posts I've Made

In Topic: 504 Plan

21 May 2009 - 09:34 PM

I'm an elementary teacher and I have celiac. I've only had a few kids on 504 plans (eg for diabetes) but I think it might help. 504 plans just mean getting your child on an IEP for a health reason--it's called other health impaired. It would at least give all the people involved with your son time (since you're a teacher you know how rare that is) to sit down together with you and think out all the implications of his disease. They'd have to write it all out for your approval. At least you could plan out routine food problems like birthdays and tell everybody, all at once, how serious the consequences would be if he ate any gluten. And everyone who works with him would get copies. I'm not sure it would solve everything; people are always behind and in a rush and incredibly ignorant about food ingredients. IF they even thought about him and the school council party they probably thought oh surely there's lots to eat there. I have so many people say they didn't realize pizza, or cookies, or crackers have wheat in them. Hello?

A 504 might be especially good for taweavmo--your daughter is still pretty young and can't read ingredient labels well enough yet. I read labels for two little second grade celiacs at my school, but the fifth grade one knows as much as I do.

In Topic: Internal Med Dtr Recommendation For Portland / Hillsboro Or Area?

05 April 2009 - 05:31 PM

I love Dr. Ben Pataroque. He is in Tualatin across from Meridian Park Hospital and just off of I-5. He is not the world's authority on weird diseases (I have celiac and fibromyalgia) so I've been bringing him articles for several years; I think he actually reads them. He is kind, patient, and a very good listener. He spends a lot of time with you and does not give up. He is good about coordinating with my naturopath and gastro. He'll even refer me for tests that my naturopath recommends so the insurance will cover it. His office staff is very helpful too. If you go see him tell him Susan says hi. 503 692 3647

I also see Dr. Kaynard and he is wonderful too.

In Topic: Recommend A Doctor In You State

05 April 2009 - 05:21 PM

gastroenterologist Dr. Alan Kaynard 503 297 8081 near St. Vincent's in Beaverton, Oregon

I sure wish I'd known him when I was diagnosed 7 years ago! He is patient, listens well, and answers odd questions very respectfully. He did all the followup blood/nutritional type tests that my former gastroenterologist (who sent a letter telling me I had celiac) SHOULD have done.

In Topic: Age Of Diagnosis?

05 April 2009 - 05:06 PM

I was 46, but I'd had dangerously unpredictable digestion since college. One doctor told me I had irritable bowel--I said, "Isn't that just a medical term for we don't know what's wrong with you?" I gave up milk and that helped. I started eating bananas, rice, and eggs before any major event as they were the only foods that I knew didn't make me sick. A new young doctor referred me for a test when my reflux got so bad that I lost my voice for several months.

In Topic: Strange Newbie Question

21 March 2009 - 12:41 PM

I have two thoughts. Are you improving? A lot of celiacs don't tolerate dairy because of the intestinal damage--that is where the enzyme for digesting dairy is secreted. Some celiacs regain the ability to digest dairy after they heal and some don't. Some--hopefully you--never have a problem.

My other thought is that most celiacs are very low on calcium. You haven't been absorbing nutrients very well for a while. It is pretty standard for newly diagnosed celiacs of any age to be referred for a bone density test, just to see how things are. We are at higher risk for osteoporosis. The DEXA scans are easy and not scary at all. You should ask your doctor. Perhaps your body "knows" this and is trying to compensate by drinking a lot of milk? (I crave nuts and beans all the time--still not sure why.)

Hopefully when you were diagnosed your doctor gave you a lot of blood tests to check on your nutrition. You might think about taking some sort of calcium/magnesium supplement (gluten-free, and there is lots of info about choices on this forum--just google it on the forum) and it is a very good idea to take vitamin D3. It helps absorb calcium and many people, especially in northern latitudes and most celiacs, are low on it. It helps your immune system too.

Welcome to the forum!