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Dietician Visit

mhansen

By mhansen
in Coping with Celiac Disease

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mhansen Rookie
mhansen
Posted

Hello everyone - This is my first post but I have been reading and being informed/supported by this site for 6 months now. I have had very similar experiences with Doctor visits but I had a really positive experience with a local dietician here in Portland Oregon. Her name is Niki Strealy, RD LD and she works for Providence Portland Medical center. She has been studying GI disorders related to diet for 11 years. She had SO much information and she had many cool websites to check out. For example the website www.triumphdining.com has dining cards that state in different languages that I need to be gluten free and then it lists all the common foods thatmight be in their food (mexican, japanese ETC. ....)

Also a short vent.. Has anyone else had this experience? 6 months ago my PA guesses that I was intolerant to gluten so I get off gluten and feel great after only 2 days. The blood test comes back negative for Celiacs disease but if I eat gluten at all I get violently ill and my severe itchy rash comes back. So I got to a new primary MD and ask if he knows anything about Celiacs disease. He says oh yeah and that if the blood test is negative that its not gluten that is bothering me. So he wants me to start taking meds for IBS. I say no thanks I'll stick with my route. my dad died young of carcinoid symdrome intestinal cancer- his sister now has intestinal cancer and his dad also now has intestinal cancer all carcinoid syndrome. I am very worried not only for me but for my 2 year old that may have this problem too.

THanks mhansen

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Lisa Mentor
Lisa
Posted
Hello everyone - This is my first post but I have been reading and being informed/supported by this site for 6 months now. I have had very similar experiences with Doctor visits but I had a really positive experience with a local dietician here in Portland Oregon. Her name is Niki Strealy, RD LD and she works for Providence Portland Medical center. She has been studying GI disorders related to diet for 11 years. She had SO much information and she had many cool websites to check out. For example the website www.triumphdining.com has dining cards that state in different languages that I need to be gluten free and then it lists all the common foods thatmight be in their food (mexican, japanese ETC. ....)

Also a short vent.. Has anyone else had this experience? 6 months ago my PA guesses that I was intolerant to gluten so I get off gluten and feel great after only 2 days. The blood test comes back negative for Celiacs disease but if I eat gluten at all I get violently ill and my severe itchy rash comes back. So I got to a new primary MD and ask if he knows anything about Celiacs disease. He says oh yeah and that if the blood test is negative that its not gluten that is bothering me. So he wants me to start taking meds for IBS. I say no thanks I'll stick with my route. my dad died young of carcinoid symdrome intestinal cancer- his sister now has intestinal cancer and his dad also now has intestinal cancer all carcinoid syndrome. I am very worried not only for me but for my 2 year old that may have this problem too.

THanks mhansen

mhansen welcome and glad you posted.

So many members here are self diagnosed due to frustrations with the medical community. With your family history I would strongly suggest that you continue with your diet. Your body is telling you something and I feel it's important to listen to that. With a possitive dietary response and strong family history, perhaps you have come to a diagnosis on your own.

I don't have young children and I will defer to those that do. I have heard that a 2 year old is young to test as they are not very reliable.

Good luck to you and glad that you have joined us.

  • 3 months later...
Megan from Salem Newbie
Megan from Salem
Posted

There is a more sensitive test available from enterolab.com located in Texas. It's a stool test and detects antibodies associated with gluten sensitivity. They also do gene testing. You can do it without a doctor's order. My insurance covered it as well.

Centa Newbie
Centa
Posted
I say no thanks I'll stick with my route. my dad died young of carcinoid symdrome intestinal cancer- his sister now has intestinal cancer and his dad also now has intestinal cancer all carcinoid syndrome. I am very worried not only for me but for my 2 year old that may have this problem too.

THanks mhansen

I'm so glad you're tracking on this part of your family history. And that you believe your own symptoms, despite the doctor's simplistic approach to blood tests. All best, mhansen

Here's an ongoing thread that may be of help:

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