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Going For A Second Oppinion

tiredeyes

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tiredeyes Newbie
tiredeyes
Posted
:huh: Hi, Im semi new in here. One of my daughters who is around 4 and a half, was diagnosed by biopsy about April last year with coeliac disease. All is going good for her, but now I have my own health problems. I was tested for coeliac disease near the end of 2007, blood test showed a possability but biopsy "appeared" normal. I have been having abdominal bloating and pains for many years and have had 4 laperoscapies (? on spelling ) key hole surgary for suspected endometriosus. That was over a aprox. 12 year period of time.They only found small amounts of endo. and pains always returned.( My mum started to call me a hypocandiact) Recently I was back to another gynocologist because the pains were starting to get to me, she looked outside the square so to speak. She sent me to a physiotheropist to work on my stomach muscles and pelvic floor to ease the pains. This helped a bit, but the more I read about other peoples symptoms of coeliac disease the more my husband and I believe that is what the problem has been all along. Not only do I have the pains & bloating but I suffer extream tiredness, rash on forehead, itchy scalp, moodiness, intergestion/heartburn, weight loss........ I tried my daughters gluten free diet for 3 weeks & both myself and my husband noticed a extream difference in all of the above problems. I had so much more energy and felt sooo much better, but I knew it could not last and so I am back off it so I can be retestered & feeling I my old tired, painfull self. Does anyone feel like they are reading their own story there? Do you think I have it to? Im seeing another gastroenterologist next week wish me luck.
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tom Contributor
tom
Posted

Good luck w/ the gastro, and I gotta say, if I were you I think I'd go gluten-free no matter what the doc said.

You said you were feeling a lot better in just 3 wks!!

Not sure if I understand the part about "it wouldn't last".

lizard00 Enthusiast
lizard00
Posted

If you are back on gluten, pursue testing. But, if you feel better, then stick with it. With the celiac screening through blood, it's common to have false negatives, not false positives. We have 22 ft of small intestine, so biopsies can be hit or miss.

There is also a link to wheat being problematic for sufferers of endometriosis. Which may be why some think there is a link between celiac and endo. The body systems are soo much more intertwined that we realize.

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The other interesting thing that I found is that there has to be some mechanism with wheat with endometriosis. Wheat has been genetically modified and there are two hormones out of two, the genome. There is also problems with gluten sensitivity, and more people are becoming gluten sensitive and I find that when I

tiredeyes Newbie
tiredeyes
Posted
  • Author
Good luck w/ the gastro, and I gotta say, if I were you I think I'd go gluten-free no matter what the doc said.

You said you were feeling a lot better in just 3 wks!!

Not sure if I understand the part about "it wouldn't last".

Hi, what I ment by "It couldent last" is that even though I was feeling much better, I would have to be eating foods with gluten in it to be retested and investigated. So I know that that good feeling would have to be put on hold for a while to get more acurate results. Unfortunatly here in Australian it seems like you are not beleived you have a condition unless you are medicaly diagnosed, especially when filling out medical paperwork of any conditions you may have.

Hope this helps you understand a bit better.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Is the diagnosis and paperwork absolutely necessary?

Here in the US, as long as I am healthy, nobody cares what I can or can't eat. Nobody asks me what conditions I have, either.

I have had no trouble finding things I can eat. I make whatever non-nutritious-but-yummy things I want from scratch (like cookies, pancakes, bread, pizza, etc), but could exist quite happily on rice, veggies, fresh fruit, meat, fish, and chicken. And chocolate! (You can take away wheat, but don't take away my chocolate!)

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