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Hollylou42

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Hollylou42 Rookie
Hollylou42
Posted

Good news, and of course more tests!

So after seeing two different family practitioners, I finally saw a specialist. I am in Tallahassee FL, and I went to the Digestive Disease Clinic. Not the most friendliest person ever, I definitely felt like the guy knew what he was talking about. He was just a nurse practitioner but he brought in one of the certified doctors to verify his thoughts. So it has only been one visit but as of now, I would recommend them to anyone in Tally.

I told him all my symptoms and he asked about celiac (since my mom has it) and also commented that my symptoms sound an awful lot like Chron's disease too. So, he ordered more bloodwork (last time I had it done for celiac, I had been gluten-free, and he knew enough to tell me to wait another week or so to get the bloodwork to be sure that I have been eating gluten long enough to get a more accurate result). And ordered some stools samples just to rule out infection and check for some other conditions that way (great, playing around in my poo, won't that be fun?!), and he ordered an Upper GI series to check for blockage from possible Chron's. Then he is having me back in two weeks to check the blood work and stool tests and barium test.

So thats my question, I know a lot of people here have had the Upper Gi barium test thing done, can anyone tell me what it is like? How long does it take? What does that stuff really taste like (I doubt it tastes like the milkshake he described it as) What if I can't drink the stuff? How fast do I have to drink it in (I hate chugging beverages even water) Are there any effects after the procedure?

I will say to put it out there, that I am not a fan of tests (especially the more invasive ones that I may have to have) but I didn't see enough improvement being gluten-free for the time I tried it (that could be due to all my mess-ups and cheating) but ultimetly I do feel like I need a firm diagnoses of some sort (even though I am pretty positive it is celiac) but I want to be sure it isn't some other problem.

So anywho, good news, I found a good competent specialist who seems willing to help (hope has been renewed, they are out there!) and bad news, more tests!

Thanks for letting me share, and if anyone can fill me in on the upper gi series questions I would LOVE that!

-Laura-

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jmengert Enthusiast
jmengert
Posted

I had the upper GI series seven years ago, and it wasn't bad. The worst part for me was that I was super nauseous at the time, so the barium made me feel even worse. However, the stuff itself is fine to get down. It's not the greatest tasting stuff in the world, but it's doable. After you drink the stuff (it somewhat reminded me of pop rocks since it inflates your tummy a bit....), you lie down on a table that rotates to check everything out. The barium coats your stomach and they take X-Rays. Then, you're a bit burpy for awhile, and that's it. I had no ill after effects from the barium, and I was super sensitive to everything when I had it done.

Good luck--if I had to do this test again, I wouldn't be worried about it (as long as the barium stuff they give you is gluten-free (which I'm assuming it is)--I had this done prior to my celiac diagnosis).

Hollylou42 Rookie
Hollylou42
Posted
  • Author

Thanks jmengert for your quick and helpful reply!

ravenwoodglass Mentor
ravenwoodglass
Posted

One thing is crucial and that is that the barium they give you is gluten free. Many are not so you really need to stress this. The stuff is get downable but if you have a problem with gluten and it is not gluten-free it will make you sick. This test will not be useful at all for celiac diagnosis an endo and if you are already gluten-free at least 2 or 3 months of gluten will give you the best chance of a positive biopsy. And even that is hit and miss. You will not have a false positive but false negatives in testing abound. If you were cheating on the gluten free diet that was useless as a diagnostic tool, however if you do the diet strictly for a while and see improvement and then do a SHORT gluten challenge (only until you react) that is considered diagnostic by some doctors.

  • 2 weeks later...
Hollylou42 Rookie
Hollylou42
Posted
  • Author

Well I just finished my Upper GI test, it wasn't horrible, but that barium crap is gross. It was orange flavor and I don't think I will be able to touch anything orange flavored for awhile.

Good news, again, the radiologist said my small bowel looked fine. And since we are trying to rule out Chrons disease (and my GI didn't think I had colitis of the large bowel) I am one step closer to a diagnosis.

Here is my new concern: I have been eating gluten again for about three weeks. And remarkably, I am not doing too bad. I still have the gas and bloating and stomachaches but my main problems before were fatigue and diarrhea (well, they are not really watery, just soft and loose, but I go about 5 times a day with that so I consider it D) anywho, I still have D but it has only been like everyother day and then the 'off' days I don't go at all. Wierd huh? Before I tried gluten-free for a month i had D everyday. And now it isn't as bad. It worries me that maybe this all is Chron's or someother disease and not Celiac (at this point I am kinda hoping it is Celiac, to be done with all this)

Has anyone experienced that? That their symptoms aren't as bad after eating Gluten for extended periods? Like you body adjusts to dealing with it or something? Or maybe I don't have celiac at all. Anywho, I have to go to my GI on Friday where he will review the results of my stool and blood tests (they finally did the FULL celiac panel) and give the complete report on my upper gi today.

Anywho, as always thanks to everyone just for being there and posting on this message board. Since we are still suspecting Chron's I checked out the message board for that and I couldn't find a helpful Chrons board where people are nice and actually post. So if its okay, until I get an official diagnosis, I am gonna keep posting here even though I may not have celiac. You all are great!

-Laura-

darkangel Rookie
darkangel
Posted

I hope you'll get some definitive answers soon. I'm in the same boat. What's the run down of your symptoms?

If you're just sensitive to gluten as opposed to having celiac disease, it's possible to react as you describe. When you repeatedly eat a food you're sensitive to or have delayed reactions to, the immune system gets fatigued and you enter this period where you don't react as strongly. If you cut out the offending food for a few weeks, then reintroduce it, you may experience a really strong reaction.

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