Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Gi Visit This Morning


Hollylou42

Recommended Posts

Hollylou42 Rookie

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-


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jmengert Enthusiast

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

Thanks jmengert for your quick and helpful reply!

ravenwoodglass Mentor

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

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

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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,189
    • Most Online (within 30 mins)
      7,748

    Eric bell
    Newest Member
    Eric bell
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...