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#16 Curious9

 
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Posted 07 October 2013 - 04:42 PM

She checked my thyroid and iron stores in March. She said my thyroid was normal and my iron stores were somewhat low. I think she will do some more blood work when I go in for the panel. But routine blood work never seems to yield much! I feel my celiac panel will come back negative, and then I won't know where to go from there!


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#17 nvsmom

 
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Posted 07 October 2013 - 05:31 PM

She checked my thyroid and iron stores in March. She said my thyroid was normal and my iron stores were somewhat low. I think she will do some more blood work when I go in for the panel. But routine blood work never seems to yield much! I feel my celiac panel will come back negative, and then I won't know where to go from there!

 

I would get copies of your old thyroid labs if possible. I was told for years and years that my thyroid was normal, and I trusted them, but once I saw the labs and did some research into ideal ranges and such, I realized that they were.... well, completely wrong.

 

Thyroid tests to get are TSH (near a 1) free T4 and free T3 (in upper 50-75% range of your lab's reference range), and TPO Ab. Request those specifically... or just check off the boxes on the lab requisition like I've done.  LOL ;) Good luck.


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#18 tommysmommy

 
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Posted 07 October 2013 - 06:46 PM

So glad you went to see your doctor. unfortunately, doctors dont always comprehend all the connections - but those of us living with it do! All say you should be eating gluten for an accurate test but you may be within the window still (why cant they just do the bloodwork today, its like a $350 test... btw - there may be a connection with celiac and eating disorders - the gut/brain connection is sttrong. Stay positive. Lots of help here and on facebook and twittet too (tons of bloggers too). You are not alone!
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#19 Curious9

 
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Posted 08 October 2013 - 05:56 AM

Thanks for the responses!

 

Trying to stay positive but it's hard. My family is telling me to go see my psychologist, they also think it's in my head.

 

My doctor said she is testing me, because if I have non celiac gluten intolerance opposed to celiac disease, I will be able to eat some gluten. Basically I won't need to be as careful, because gluten isn't actually causing me any health problems, it's just causing me GI symptoms. Is this true?

Secondly, she said there is nothing to support gluten withdrawal in western medicine. But, I have read scholarly article on how gluten breaks down into several opioids. What are other peoples opinions on this?

 

I was so nervous yesterday, I didn't ask which thyroid test she did in march, and what the level was. I found blood work from March 2012 and the normal sTSH range is indicated as 0.35-5.0. From researching online, I have found that the generally the new upper range accepted is 2.5, max 3, with optimal range being between 1 and 2. At the time of this blood work I was in severe starvation and very underweight. So this blood work is not very indicative of my present state. However, my sTSH level was 3.05. This seems a bit odd to me, because, from everything I've read, anorectics generally present with LOW TSH. Hmm.

 

My doctor said the test should be around $120, so maybe it doesn't include every test. When I go for the test, I think I shall push to have my sTSH levels retaken, and for them to test for thyroid antibodies, as well as my B12, vitamin D, and Mg levels. And then I will request a copy of my blood work. It would be so much easier if you could just go to the lab and say, please test me for this, this, and this. Cut out the middle man! If I reach a dead end, I may have to get a second opinion. Luckily, I know someone who was diagnosed with celiac disease over 10 years ago, and her doctor is a bit of an expert. I was also wondering, have people encountered less resistance with younger doctors vs older doctors?

 

Thanks so much everyone!


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#20 kareng

 
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Posted 08 October 2013 - 06:09 AM

I was just at the International Celiac Disease Symposium.  They were saying that they really don't know anything definite about NCGS.  They have a few preliminary studies.

 

One found that NCGS patients that reacted well to a gluten-free diet might actually have FODMAP issues. Basically, this is an issue with breaking down large sugar molecules.  As wheat is a higher FODMAP food, people felt better.  When they added wheat back in, but kept the total FODMAP load low, the patients still did well.

 

They also think that the NCGS patients might be reacting to a different part of the wheat, but they have no tests for that currently.

 

And of course, some NCGS might just be Celiac patients that were not diagnosed properly - early stages, tests performed or read incorrectly, etc.


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#21 Curious9

 
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Posted 08 October 2013 - 08:19 AM

If my blood test comes back negative, I guess I will just go back to gluten free anyways, as I know at least my digestive system feels a hell of a lot better without it, and see, after several months, whether my other symptoms are improving as well.

Thank you!


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