Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Dietician Visit

mhansen

By mhansen
in Coping with Celiac Disease

Recommended Posts

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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:

Open Original Shared Link

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Lori Lavell
      - Lori Lavell replied to Eldene's topic in Food Intolerance & Leaky Gut
      14

      Oats gluten free?

      The body reacts to all grain proteins in all grains from my observation. Call it Gluten, Gliadin, which is what they test for commonly, however, I am Celiac and react with dermatitis herpetiformis to corn and the glutenous protein in it is called Zein. They only test for Gliadin. Testing needs to be updated in my opinion. It only take a small parts per million...
    2. Scott Adams
      - Scott Adams replied to Eldene's topic in Food Intolerance & Leaky Gut
      14

      Oats gluten free?

      Thank you for sharing your perspective. It's true that many grains contain proteins that are technically classified as "glutens" (like zein in corn and orzenin in rice), but it's important to clarify that these proteins are not the same as the gluten found in wheat, barley, and rye, which contains gliadin and glutenin. These specific proteins are the ones...
    3. trents
      - trents replied to Eldene's topic in Food Intolerance & Leaky Gut
      14

      Oats gluten free?

      I disagree, Lori. Gluten is a particular protein, not a category of proteins. It is found in wheat, barley and rye. Other cereal grains have proteins that resemble gluten to one degree or another but are not gluten. Gluten is gluten. Avenin is avenin. But yes, it is true, that informally speaking, some have used the term "gluten" to refer to the proteins...
    4. Lori Lavell
      - Lori Lavell replied to Eldene's topic in Food Intolerance & Leaky Gut
      14

      Oats gluten free?

      In fact ALL grains contain different forms of gluten that go by different names. Corn contains Zein and Rice contains Orzenin. We all need to realize that a very small amount of any of these grains can cause continued systemic inflammation which is not optimal for allowing the body to heal itself.
    5. Scott Adams
      - Scott Adams replied to Joyes's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Test results

      This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,378
    • Most Online (within 30 mins)
      7,748
    Lexus 26
    Newest Member
    Lexus 26
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Lori Lavell
      Oats gluten free?

      By Lori Lavell · Posted

      The body reacts to all grain proteins in all grains from my observation. Call it Gluten, Gliadin, which is what they test for commonly, however, I am Celiac and react with dermatitis herpetiformis to corn and the glutenous protein in it is called Zein. They only test for Gliadin. Testing needs to be updated in my opinion. It only take a small parts per million to continuously create systemic inflammation. This is not productive to healing and all grains contain some for gluten like substance. It's called Molecular Mimicry.
    • Scott Adams
      Oats gluten free?

      By Scott Adams · Posted

      Thank you for sharing your perspective. It's true that many grains contain proteins that are technically classified as "glutens" (like zein in corn and orzenin in rice), but it's important to clarify that these proteins are not the same as the gluten found in wheat, barley, and rye, which contains gliadin and glutenin. These specific proteins are the ones that trigger an autoimmune response in people with celiac disease. For individuals with celiac disease, the primary concern is avoiding gluten from wheat, barley, and rye, as these are the grains scientifically proven to cause damage to the small intestine. While some people with celiac disease or non-celiac gluten sensitivity may also react to other grains, this is not universal and varies from person to person. For most people with celiac disease, grains like corn and rice are considered safe and are widely recommended as part of a gluten-free diet. That said, you raise an important point about systemic inflammation and individual tolerance. Some people may indeed have sensitivities to other grains or find that eliminating additional grains helps them feel better. However, it’s crucial to differentiate between celiac disease, which requires strict avoidance of wheat, barley, and rye, and other conditions or sensitivities that may involve broader dietary restrictions.
    • trents
      Oats gluten free?

      By trents · Posted

      I disagree, Lori. Gluten is a particular protein, not a category of proteins. It is found in wheat, barley and rye. Other cereal grains have proteins that resemble gluten to one degree or another but are not gluten. Gluten is gluten. Avenin is avenin. But yes, it is true, that informally speaking, some have used the term "gluten" to refer to the proteins found in these other cereal grains. It's like the term "kleenex" has come to refer to all facial tissues.
    • Lori Lavell
      Oats gluten free?

      By Lori Lavell · Posted

      In fact ALL grains contain different forms of gluten that go by different names. Corn contains Zein and Rice contains Orzenin. We all need to realize that a very small amount of any of these grains can cause continued systemic inflammation which is not optimal for allowing the body to heal itself.  
    • Scott Adams
      Test results

      By Scott Adams · Posted

      This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease.     
×
×
  • Create New...