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Not Diagnosed Yet


strum

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strum Rookie

So, here's my story. For about the last year, I have been experiencing increasing GI issues. Bloating, gas and diarrhea mainly. To the point that it is beginning to interfere with work, and I do not want to go out or travel. I have had gastric bypass so I had been blaming that. I noticed when I cut back on carbs the symptoms improved. For the last 2-3 months I have been eating a low carb diet. I finally had an endoscopy and colonoscopy last week and it came back as "may represent an early manifestation of Celiac's disease". Other symptoms I have included migraines, really low ferritin levels for at least six months (been either 4 or 6), been losing teeth to cracking. I also have two other autoimmune diseases - hashimotos thyroiditis and Addison's disease.

Sorry that was so long. Any way, the doctor reading the test results recommended further blood testing. So I am trying to increase my gluten intake. Does that sounds reasonable? I just started yesterday and I am so sick already, can't hardly get out of the bathroom and my belly is aching like crazy. Just wanted to see what you all thought. And to vent a bit. Thanks.


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notme Experienced

sorry you are sick :(  but if you want the test to be accurate, you need to keep eating the gluten - i think a few slices of bread per day should do it, though.  celiac walks hand in hand with thyroid, but thyroid problems also benefit from gluten free diet.  get tested - hang in there!  did they do biopsies when they did your endoscopy?  

strum Rookie

Yes. The biopsy came back positive for increase in intraepithelial lymphocytes.

quote name="notme!" post="922124" timestamp="1404179706"]sorry you are sick :(  but if you want the test to be accurate, you need to keep eating the gluten - i think a few slices of bread per day should do it, though.  celiac walks hand in hand with thyroid, but thyroid problems also benefit from gluten free diet.  get tested - hang in there!  did they do biopsies when they did your endoscopy?

beebs Enthusiast

Yes. The biopsy came back positive for increase in intraepithelial lymphocytes.

quote name="notme!" post="922124" timestamp="1404179706"]sorry you are sick :(  but if you want the test to be accurate, you need to keep eating the gluten - i think a few slices of bread per day should do it, though.  celiac walks hand in hand with thyroid, but thyroid problems also benefit from gluten free diet.  get tested - hang in there!  did they do biopsies when they did your endoscopy?

strum Rookie

The report from the pathologist went on to say "may represent an early manifestation of celiac disease" and recommends further serological testing.

NatureChick Rookie

The two figures I've seen to ensure test accuracy (two different sources) are the equivalent of two pieces of bread a day for 6-8 weeks, or the equivalent of one piece of bread a day for 12 weeks.

In either case, it seems as if you've already realized that you have a problem with gluten. Congratulations on discovering a possible culprit for many of your woes. And best of luck getting through the next several weeks.

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    • Mettedkny
      Thank you so much for your validation. I completely agree with you that the crackers COULD be the culprit even with very small trace amounts (less than 20ppm) and accumulating over time - I am at the point where I am about to request that my son gets retested to make sure that my "control subject" is still testing perfectly lol. I have a meeting with my celiac disease doc tomorrow and will run the crackers by him to see if he is willing to retest in a few weeks. I have not had any of them for the past 3 weeks so far, so fingers crossed, we can retest and hopefully find out if it is them. And no - I have been scouring EVERYTHING to make sure nothing else has changed. Only use gluten-free lip products and toothpaste so not there either (but very good suggestion). Thank you for validating me. I feel like many are just saying "you are not being gluten-free enough - but I do have a perfect 16 year track record that proves otherwise - so has to be something sneaky.
    • Mettedkny
      OMG thank you so much for validating me in my "craziness" of being on the hunt for the culprit in my case. "Unfortunately" I do not eat any of the foods you mention, but have stopped eating the crackers that are labeled certified gluten-free to see if they might be the problem. I did NOT know about chicken being injected with gluten liquid - that is horrible!  Hoping my doc will agree to retest after I have been off the crackers for a while. My biggest mystery is - why do I not have ANY symptoms of being cross contaminated or glutened? There is no damage (thank godness) to my villi, and normally I will get canker sores the moment something is even the slightest bit cross contaminated... the hunt continues and I will follow up once I find the answer. Glad you found yours! 
    • Winnie-Ther-Pooh
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    • maryannlove
      I recently had same problem and posted on here.  My bloodwork also unexpectedly skyrocketed.  When doc sent online comment saying something like "you need to be eating gluten-free food" I was almost in tears because had been very careful.  Like you, went on a mission.  Narrowed mine down to Yasso yogurt mint chocolate chip bars (formerly had Certified Gluten Free label on package but learned now only on small boxes but not large boxes) or BJ's only mixed nuts without "may be processed on equipment that also processes ....wheat" allergy warning and said in big letters "A GLUTEN FREE FOOD."  I went off both and bloodwork drastically improved.  Still don't know if culprit one or both (will add one back in and test again).  Throwing out in case you're eating either of these.  I live in Pittsburgh and during appointment my gastro told me some U. of Pittsburgh students were having same problem.  They finally narrowed it down to liquid injected into chicken they were eating.  (Apparently to make it moist and/or plump.)  Understand how frustratitng it is when you're making all the sacrifices to be careful.  
    • gerbilgirl
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