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Newbie With Questions

RobinAnn

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RobinAnn Rookie
RobinAnn
Posted

Hey everyone, I'm new to this board so let me explain a a little about myself. I am an American living in Germany. I was Dx with thyroid disease in 2003 and am EXTREMELY intolerant of thyroid medication although I tried taking the meds for 5 years. Since jan. this year I have stopped all meds and am working on diet alone. Since stopping the meds I have become much more aware of my body's response to foods that I eat. Grains in general are a problem except for rice and I'm very reactive or sensitive to vitamin and mineral supplements.

Generally speaking, when I look at a list of celiac disease symptoms, yeah, that could easily be me. Since the local doctors have been extremely useless and incompetent in helping me to regain my health I though I would go straight to a gluten free diet without bothering with testing. Is there any reason why this would be a bad idea?

What is the difference, if any with celiac disease, gluten intolerance and wheat intolerance?

Robin

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Lisa Mentor
Lisa
Posted

Hi Robin and welcome! Glad you found this site.

Celiac Disease testing is not what we would like at the present time. The Serologic Panel can rule Celiac in, but it cannot rule it out, as the same with and endoscopy/biopsy. The only true test, and the least scientific is positive dietary responce.

A positive dietary response will not tell you if you have Celiac, a gluten intolerance, gluten sensitivity or a gluten allergy.

We have several people who were so relieved of prolonged symptoms that they gladly accept any level of gluten issues.

If you continue to eat gluten, this is the Serologic Panel to request from your doctor:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

If you have any further question, feel free to ask.

happygirl Collaborator
happygirl
Posted

In terms of day-to-day treatment - the treatment is the same. the gluten free diet.

RobinAnn Rookie
RobinAnn
Posted
  • Author

So, it sounds like testing isn't all that necessary or usefull. Which is a relief since getting testing would require too much stress in trying to get a doc to actually help me.

I've been reading some info on this site but have only just started. Where is the best place to start with the facts I need before beginning the diet.

Lisa Mentor
Lisa
Posted
So, it sounds like testing isn't all that necessary or usefull. Which is a relief since getting testing would require too much stress in trying to get a doc to actually help me.

I've been reading some info on this site but have only just started. Where is the best place to start with the facts I need before beginning the diet.

https://www.celiac.com/

Here is a good start, with various categories on our home page. (or click on the top of this page Celiac Disease Info)

RobinAnn Rookie
RobinAnn
Posted
  • Author

I'm on my second day of gluten free. I know it takes a while before I feel the complete effects from the diet. But how long is long enough before deciding if this is the answer or not? How many weeks or months?

MollyBeth Contributor
MollyBeth
Posted
I'm on my second day of gluten free. I know it takes a while before I feel the complete effects from the diet. But how long is long enough before deciding if this is the answer or not? How many weeks or months?

Hey RobinAnn,

Welcome to the site! I'm just starting my second week on the gluten free diet and I noticed results almost instantly! I'm still have some digestive trouble on and off but I'm guessing my body is still flushing gluten out. Some people on here say it was two years before they were completely back to normal...some say it takes six months. I think it depends from person to person on how quickly you get back to "normal." Hope you start feeling better soon!

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    • Mari
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      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
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