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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.

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happygirl Collaborator
happygirl
Posted

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

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RobinAnn Rookie
RobinAnn
  • Author
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.

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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)

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RobinAnn Rookie
RobinAnn
  • Author
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?

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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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    • cristiana
      Finding out I’m coeliac whilst pregnant

      By cristiana · Posted

      I am not a medically qualified person, but I think in your shoes I would do the same.     If you are in the UK, there are some really good gluten-free aisles now.  The largest range near where I live, currently, appears to be in Tesco's.
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      Finding out I’m coeliac whilst pregnant

      By Katiec123 · Posted

      @cristiana I’ve got an appointment with the midwife next week so will speak to her then. Waiting for gp to get back to me. I’ve made the decision today to cut gluten out regardless due to the risks I’ve read about 
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      Finding out I’m coeliac whilst pregnant

      By cristiana · Posted

      Hi Katie I am so sorry you had two miscarriages in the past.  Try not to worry, though, because it could be that they were unrelated, perhaps? Well done for contacting your GP.  Is it possible that you can speak to your midwife in the meantime for a chat?    Cristiana  
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      By Katiec123 · Posted

      @cristiana hi!  the things I’ve read online about having untreated coeliac disease whilst pregnant has really scared me and made me very hesitant to continue eating it. I feel like the best option might be to eliminate gluten from my diet now and then continue with testing after I’ve given birth. I’ve got in touch with my gp and am due to get a phone call back on Monday. Really worried now as I’ve had 2 miscarriages in the past 
    • cristiana
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      By cristiana · Posted

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