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Advice Re Possible Celiac A?
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2 posts in this topic

Hi all,

Just seeking a bit of advice please.

I am a 33 yo woman and am wheat intolerant at the least. Over the years I've been tested for celiac (blood test) three times and all have come back negative. The first two were years ago and I was eating gluten free at the time so of course they were negative. I have just recently been tested again after having eaten wheat in my diet for two months (although not huge quantities of it) and this was also negative.

I suspect celiac for myself and possibly my 20 month old daughter although I hope it's not the case for either of us.

I know that I feel better on a wheat free diet (although it doesn't seem to need to be strictly gluten free as oats and things like soy sauce seem to be ok). For the last 8 years I've followed a largely gluten/wheat free diet for this reason and feel so much better when I'm not eating it.

A little bit is ok ( a tortilla or a biscuit for example) but if I had cake, bread or pasta I have stomach pains fairly quickly.

So the following are my symptoms which seem to worsen with eating wheat for long periods of time and disappear when I don't eat it:
- depression/anxiety
- stomach bloating
-lowered immunity and just feeling 'blah'
- Symptoms of neurocardiogenic syncope including chest pains and fainting
- ongoing nausea and on/off stomach pains.

I have tested positive for the celiac gene and although no one in my family has it, there is a strong history of associated illnesses including lupus, chrohns and rheumatoid arthritis.

My little girl has just been diagnosed with tooth enamel propoplasia which after lots of reading I have discovered that one theory as to why it is caused is from poor maternal nutrition in pregnancy including celiac. I was very careful to eat very well while pregnant and took supplements throughout, there is no reason my nutrition should have been inadequate.

I haven't yet had a gastroscopy, my dr thinks this is unnecessary as the blood tests were negative and that instead I should be re-tested every two years. I'm fine with that but she has advised me that its important to eat wheat and gluten foods unless and until I am told I have developed celiac. To me that logic makes no sense. Why eat something I know I don't tolerate well, knowing it may also cause celiac? But could I develop celiac by not eating gluten in the interim?

My little girl is growing well and a happy kid. I doubt she is celiac. But I'm not sure the best way to proceed with her. The dr said that the tooth enamel problem my daughter has is more likely caused from her being celiac rather than from me being celiac while pregnant. I do know that this tooth abnormality occurred in late pregnancy- could she possibly have been celiac in utero?? She has a pot belly and sometimes diarrhea and tummy aches but otherwise is a regular kid. The dr doesn't want to test her as its a needle but I would rather know if there is a problem now rather than continue to feed her food that may poison her, cause further problems and then have to try get her better, I'd rather she didn't get sick in the first place!!

Sorry this is so long winded. I hope some if you with more experience at this stuff than me have some advice!
I just feel like I can't really see the forest for the trees at the moment. I don't want to overreact because I know having the gene doesn't mean I'll get celiac and probably both myself and my daughter would be sicker if we were celiac. I just wonder if I should push for my daughter to be blood tested at least and for myself to have a gastroscopy. I also can't see the logic in eating wheat when I know it makes me unwell- can I really do more harm by avoiding it?

Thanks so much for your help! :)

Edited by Starry23
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We just had an article posted by Scott Adams about tooth enamel problems.  It said that one should be tested for celiac if their enamels disappears.  I am giving copies of it to the 4 dentists our family employs.

 

The final test for celiac would be to follow the diet for several months and see if the body responds to it.  The blood tests for celiac can only catch it if one has gluten in their system.  If you quit eating gluten and then take the test, you may have a false negative.

 

I hope this and the other things you find here will help.

 

D

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