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Waiting for test results

leighannh2

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leighannh2 Rookie
leighannh2
Posted

I've lurked on this board for a long time, figured I should say hello.  I was tested for celiac and other things 7 or so years ago (just the blood test) and it was negative back then.  This board is where I found out about Bile Acid Malapsorption so I got the meds for that and went on from there.  Then, in 2016, I just started feeling terrible, joint pain, foot pain, overweight, GERD, ibs-d with cramps and urgency, and I set out to figure out if the food (Standard American Diet) was causing problems.  By spring of 2017 I had pretty much started eating Paleo most of the time, losing weight, feeling good, losing weight, all the above symptoms getting better for the most part.  But I noticed on vacations and times when I went back to my old diet I would start having issues again.  This past weekend, I visited family and ate everything they were eating (chick fil a, cracker barrel, etc) and the heartburn started right away, then two days later, watery D and cramping, malapsorbtion, and it lasted for 4 days.  So I went back to my doctor and she's running the same tests again.  I hope I've eaten enough gluten for the test to be accurate.

I've dealt with this so long, I know what to expect however the test turns out, I'll just be glad to have an answer.  If it's negative, it's going to take more work from me to see what exactly is causing my issues.  I'm thankful for this board for all I've learned and I'm sure regardless of the results, I'll be back here often because I've learned so much here.  

My son's best friend has celiac, and I was able to cook for her when she visited us a few times, with only one small mishap at a restaurant.  So, thank you all.  I'll post back my results

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cyclinglady Grand Master
cyclinglady
Posted

I am sorry that you are still ill.  

Unfortunately, after being gluten free, celiac experts recommend 8 to 12 weeks of consuming gluten daily prior to the blood tests.  Why?  It can take that long for antibodies to get into the bloodstream.  Of course, it can be much shorter for some, but experts rule on the side of caution.  They want to catch as many celiacs as they can.  Now, a challenge is much shorter for an endoscopy (2 to 4 weeks).  That is because they are going into the small intestine where antibodies are building and attacking the small intestinal wall, but even then it takes time.  We are talking Autoimmune and not an allergic reaction.  

So, a weekend of gluten will most likely yield a negative on the blood panel.  The odds are not in your favor and your doctor should know that (he has access to Dr. Google and probably subscribes to some daiky email newsletter).   Your health insurance might even balk at an endoscopy, but that can be overcome.

So please take the time to research celiac disease.  Know what you are up against.  Read not just the page, but the entire website.  The University of Chicago’s celiac website is well written.  Better than other centers and often better than the celiac non-profit organizations.  

Keep advocating for your health. 

Open Original Shared Link

Oh, if you can, insist on the complete panel as not all celiacs are positive on the TTG (like me).  Or better yet, if the TTG is negative and then consider the gluten challenge and re-test using the complete panel.  

leighannh2 Rookie
leighannh2
Posted
  • Author

I questioned the doctor several times about my diet and how I don't eat that much gluten.  She felt like what I described was enough.  I have a GI in mind if this doesn't give me the answers I need.  I will check out the page you mentioned, thanks so much!

squirmingitch Veteran
squirmingitch
Posted

It wasn't enough! The doctor is wrong. Seen it a million times on here. 

cyclinglady Grand Master
cyclinglady
Posted
2 hours ago, leighannh2 said:

I questioned the doctor several times about my diet and how I don't eat that much gluten.  She felt like what I described was enough.  I have a GI in mind if this doesn't give me the answers I need.  I will check out the page you mentioned, thanks so much!

Maybe it was enough to get a positive.  It not, consider a challenge.  ?

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