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Help - Need Some Advise


aussiechick4jc

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aussiechick4jc Rookie

Hi everyone,

My name is Karen and at the end of this year I will turn 50. I would really appreciate any input or advise anyone can give me.

I have finally found a doctor who is taking me and my medical issues seriously. Although this has been great, all the tests that I


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mommida Enthusiast

The rule of thumb, once a Celiac, always a Celiac.

How were you tested for Celiac? You should not go gluten free until all Celiac testing is completed.

Did you ever have your thyroid checked?

Allergy testing?

Start keeping a food journal.

aussiechick4jc Rookie

My Celiac's test was bloods and so was the Sjogrens tests.

I have had thyroid checked - all good.

Had allergy testing - NOTHING. Tests where also bloods.

I have been Gluten free for neally a week now and have already noticed some improvement, which makes me very happy.

Am planning on keeping food diary as I'm sure I will get the Gluten free thing wrong in the initial stages. This may help me also if I have any other good issues.

Any additional advise would be much appreciated.

Thanks heaps

Karen

mommida Enthusiast

Why is sleeping a problem? Insomnia? Try taking some sublingual vitamin B12. Or is it painful to lie down?

If your symptoms don't start getting better, and it could take 2 years to feel perfect, you may have to get an endoscopy with biopsy. So keep looking for a doctor that listens to you.

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    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • Scott Adams
      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
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