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I Am Confused....


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4 replies to this topic

#1 Justsoconfused

 
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Posted 22 May 2013 - 03:27 PM

Hi,

In the last two years I have been diagnosed with Hashimotos and B12 deficiancy... started b12 shots (every two weeks) and thyroid meds. In the last 6 months or so things for me went back down hill. Wieght gain horrible fatigue horrible peripheral neuropathy If I ate even a small meal it felt like I had swallowed a watermellon for days. Forget a normal bathroom rotuine. Horrible headaches some for a week at a time HUGE hair loss and what I thought was razor rash ALWAYS on my legs from ankle to hip. ETC...

I had blood tests about 6 months ago for crohns and celiac they were negative (although my crohns titer was up in the positive range). I also had a "negative" endo and colonoscopy. I say "negative" because it said I had long term small intestinal swelling....

Because of these results I was diagnosed with IBS and put on dicyclomine.... (it quit working)

The PA I was seeing recently left the office I visit and I had to reestablish myself....

Almost immediatly she asked if I have ever heard of celiac or gluten free....

another blood test for celiac ordered....,

I have been (I am trying really hard crosscontamination is a pain!) gluten free for about 5 days

The new test is back negative

however I feel SO much better after only 5 days can this all be psychosomatic?

 

I hope I wasnt too confusing I just didnt want to go over the last 5 years of doctors visits.... questions and answers welcome.

Thanks

Justsoconfused


Edited by Justsoconfused, 22 May 2013 - 04:04 PM.

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#2 GFinDC

 
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Posted 22 May 2013 - 04:18 PM

Hi Justso,

 

Welcome to the forum! :)

 

Not having celiac disease doesn't mean you don't have a problem with gluten.  NCGI can cause similar symptoms, and won't show up on celiac disease tests.

 

Non-celiac wheat sensitivity article
http://www.celiac.co...ists/Page1.html

Innate immune response in AI diseases
http://www.celiac.co...uals/Page1.html
 

 


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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#3 nvsmom

 
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Posted 22 May 2013 - 05:34 PM

Paul is right, Non-celiac gluten intolerance is much more common than celiac disease and it has basically the same symptoms as celiac, just minus the villi destruction. It could be NCGI, i have seen stats that state it is resent in 6-30% of the population (I've seen 6% sited the most). Because you have Hashimoto's and low B12 , I would say there is a chance you have celiac disease that is not serologic ally positive or seen in biopsy, but it is a slim chance.

Either way, treatment is a gluten-free diet. Best wishes. I hope you continue to feel better.
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#4 Lisa

 
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Posted 22 May 2013 - 06:06 PM

I concur with the above peeps. :)  Good advise.


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Lisa

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#5 SasaMinks

 
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Posted 23 May 2013 - 11:41 AM

I am in exactly the same boat! negative tests but anemic and with all the celiac symptoms - gluten-free for 6 days and I feel like a different person already - I don't know what to think either!


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