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Hello all! I am planning on having a celiac panel done within the next week so I will have my doctor's opinion on this soon but wanted to share health issues and symptoms I have been having recently and see what y'all think.

So, late February I was traveling in Europe (Paris and London) and a few days after getting there I came down with some bad gastrointestinal symptoms. I had diarrhea for about a week and a half and terrible nausea and loss of appetite that has lasted on and off ever since. When I came home early March I visited my GP who said I likely had a stomach virus or bacterial infection and that my symptoms should go away within a few days to a week. Well, it has been more than two months now and my symptoms have not gone away but instead have gotten worse. About two weeks after my first visit I went back and my doctor then ordered routine blood tests and an abdominal ultrasound for me which both came back normal. Along with the nausea and loss of appetite that began while on my trip I have developed severe chest and back pain. I have had acid reflux before in the past so when I visited my doctor again we thought this was probably what it was. In the past my acid reflux has cleared up with simple OTC meds so I tried that first to no success. I then got prescribed a PPI, pantoprazole, and sucralfate because I was having pain so bad I couldn't sleep at night and severe nausea. My pain did not go away after taking those medications so my doctor thought my chest pain might be coming from another source. I then had a chest X-ray done which came back normal. Still no improvement so I am scheduled to see a cardiologist and have an echo done at the end of the week to see if it could have anything to do with my heart. I am a 22 yo female, so heart problems at my age are unlikely though not impossible, but doctor and I both think it is wise to get it checked out. Along with all this I have lost weight (about 6-8 lbs, not a lot but I have never had weight fluctuations before) likely due to the nausea and loss of appetite. While I have not had diarrhea since my trip, I have frequently had loose, fatty stools that can float. Some other random symptoms I have noticed are extreme fatigue/tiredness yet I am unable to sleep soundly (or at all) most nights. I also have frequent urination- I feel like I'm having to pee way more than I am drinking, especially at night (I also got a urine culture done and I don't have a UTI or kidney infection). Lastly, I have strange neurological symptoms that I have never experienced before- numbness and pins and needles in my hands, arms, and feet.

I'm really having a hard time explaining all of these symptoms. It's very strange to me how this all began on my trip. I have had minor stomach issues before (occasional gas, bloating, constipation, and acid reflux) but nothing like this ever in my life. I have read that sometimes Celiac is triggered by a viral infection so I am wondering if I had a virus while I was traveling that set this all off. I have a few family members that have a gluten intolerance so it is present in my family. These past few months have just been incredibly painful and difficult for me because I feel like I can't figure out the source of my pain and problems. I also struggle with depression and anxiety and having unexplained pain in the middle of a global pandemic has made that no better! Anyways, if anyone has any helpful thoughts I would greatly appreciate it. Hopefully I can get some answers soon! 

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Your story sounds remarkably similar to mine. The first time I recall getting gastro symptoms was after a backpacking trip to Europe with several friends. I got very sick from what I believe was food poisoning, but it's possible it was some sort of virus. I was violently ill for a few days, then never really fully recovered. This started me on a quest to regain my health that took many years (after I got back I started going to doctors and getting tests done...it took ~9 years for me to get diagnosed with celiac disease).

There is some research that links certain rotaviruses to celiac disease. Since about 20% of people have the genetic makeup to get celiac disease, most don't get it. Environmental triggers are now being researched, but it looks like there are various things that can set it off if you have the genetic markers.

Hopefully you were eating gluten daily when you got your blood test, because if not then you may end up with false negative results. Keep eating gluten until all testing is completed.

Please share your results when you get them.


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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