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Celiac Testing

4 posts in this topic

Hi everyone,


I am new to this forum. 


The past few years have been difficult. I am a 28 year old woman, and I've been on a medical rollar coaster.


In 2010, out of the blue, I started getting extremely intense headaches and I had nerve pain going down my right arm (neuropathy down my arm and into my pinky and ring finger). I was absolutely out of my mind. PT wasn't helpful, but acupuncture curbed the nerve pain somewhat. It still flares up from time to time, though. That ordeal lasted around 5 months.


There was a window of a few months were I felt relatively OK.


In the spring of 2011, I started getting nauseated after meals. The doctors told me it was probably reflux and told me to take prilosec. I went into a downward spiral into GI hell and I lost about 35 pounds. I was at a healthy weight before the drop, so I became very, very thin. They found out my gall bladder was sluggish, but there were no stones (biliary dyskinesia). They DID test for celiac during this time (via intestine biopsy), but lost the results. My GB was removed and I felt improvement in my digestion after a month post op. I made the connection between Celiac and GB issues with these articles...


All was still not well. Some days I felt like I was about to puke all day long, and I couldn't figure out why. Doctors shrugged and gave me more prilosec. I went on the paleo diet as an experiment in the summer of 2012, and a lot of my nausea disappeared. Not totally, but it certainly took the edge off. I started introducing non paleo things back into my diet, and wheat was what was setting me off. Over the fall of 2012 I fell of the paleo wagon and was in a perpetual state of nausea. I cut out wheat again this spring and I feel so much better. 




When I eat wheat these days, I get very bad diarrhea. My period is also heavier when I don't eat wheat - when I was eating wheat I was skipping periods, or they would be very very faint. 


I suspect with the neurological symptoms (is the type of neuropathy I experienced a symptom of Celiac?), the loss of my gall bladder and the GI symptoms I experience with wheat that I have Celiac disease. I am treating it as Celiac disease and cutting all wheat out. Is it irresponsible not to get tested for Celiac? If I could get tested for it without purposely glutening myself I would, but I hesitate to purposely make myself sick. 


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to be honest,

its completely up to you if you want the testing or not. or whether you could cope with the symptoms long enough to have the tests. there,s many on here who havent had the tests and some - like me that had the tests and they turned out negative!!! you could be gluten intolerant rather than celiac -and you,d only know if you have the tests - either way its the same diet you,d have to follow.

some people struggle without a diagnosis ( i do)- but like i said its your call - i think the diagnosis only really helps if your younger - still at school/college where accommodations would have to be made for you (im from uk so not sure where your from, think this applies in america)

good luck :)


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If you are eating gluten at all, it might be worth your while to get tested BEFORE you commit to the gluten-free diet (it sounds like you are eating gluten light at the moment). Who knows, you might be consuming enough gluten to register positive blood tests - it doesn't take much, but do the tests sooner rather than later (when the autoantibody levels drop).


The blood tests are:

ttg IgA and ttg IgG

total serum IgA



AGA IgA and AGA IgG (older tests)


You could also request nutrient levels be tested as celiacs are commonly low in iron, ferritin, B12, D, calcium and potassium. Thyroid problems are common in celiacs too so you might want yours checked.


Once you commit to the gluten-free diet, make sure you are on it 100%. Check your meds, vitamins, spices, sauces, and your baking ingredients (like baking powder or sugar) which might have become contaminated with wheat flour.  And good luck with it. I hope you continue to feel better.


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I haven't eaten gluten for about a month. Things aren't perfect, but I feel a heck of a lot better. 


It's kind of crazy how gluten makes it's way into the most ridiculous's been an eye opening experience. 


Are there any brands of spices, as a whole, that aren't gluten free? 

Edited by zombiezombie

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