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skydivejon

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skydivejon Newbie
skydivejon
Posted

New Member here, conveying my background and how I came to learn I have Celiac Disease. First off, THANKS, I have learned so much from this site; answers to just one bite, dealing with people who have no clue, eating out, travel, shopping and more.

For nearly a month I suffered with what I though was a bad case of the Flu; Wife and both kids were also under the weather but they recovered in short order, I however seemed to be unable to shake it.

I trudged on for a few weeks until I hauled myself to the ER, where the referred me to Infectious Diseases. While waiting for my appointment with ID, I went to my General Practitioner who was stumped.

After visiting the Infectious Diseases Doctor, I was (after a dozen blood tests, 4 CT Scans, an MRI and several trips) diagnosed with CMV ( Cytomegalovirus ) and told to ride it out.

Well another few weeks and I am back at the ER, dehydrated and feeling like someone stuck a knife in my side. The ER holds me and after six days, more blood work, more CT scans, more MRI

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ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the boards. You were lucky they were able to diagnose you so quickly. Imagine if you felt like that for years. :o Read as much as you can here and ask any questions you need to. I hope you feel better quickly.

MELINE Enthusiast
MELINE
Posted

welcome :rolleyes:

missy'smom Collaborator
missy'smom
Posted

Welcome! Good for you for having such a postive outlook.

ang1e0251 Contributor
ang1e0251
Posted

Welcome, you have a great attitude and I know you will have a happy life without gluten!

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    • par18
      Is it gluten?

      By par18 · Posted

      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      IBS-D vs Celiac

      By par18 · Posted

      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      IBS-D vs Celiac

      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

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      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
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