sandymbme Posted February 21, 2011 Report Share Posted February 21, 2011 So, some of you may know I have had a very eventful couple of months. I came down to my parents house because I was getting to a point where I was having difficulty caring for myself, both physically and financially. Really hard decision, as it takes me 500 miles away from my specialists, my friends, my church, and my boyfriend. But I was having frequent syncope episodes, losing a lot of weight, and having all kinds of terrible GI issues that were making it harder and harder for me to even get out of bed. And sadly my boyfriend is not independently wealthy, so could not arrange round the clock care for me or quit his job!About a month after getting here I ended up spending 8 days in the hospital. I was having horrific abdominal pain. While I tend to always have pain for a few hours after bowel movements, this was in a whole new stratosphere. So I got admitted, and it turned out that my Essure implant in my right ovary had managed to migrate out of place and back into my uterus. They did an emergency hysterectomy, and sent me home. But I also had C Diff, and other GI issues. While in the hospital, the gastroenterologist noticed that I had a low total IgA, which can cause a false negative for Celiac testing. Which I had. So she ordered a genetic blood test, to see if I had the genetic marker. I explained that I had just had an EGD and biopsy that came back negative as well, and she said that did not mean I didn't have it. They could have not sampled the right place, or looked closely enough in the right spots.Sure enough, the results come back and I do have the genetic marker. I am having my normal GI doc send the info from the EGD and biopsy I had back home, but she says she may repeat the test anyway. And she is confident that despite the fact that the gene is in one out of three people, that I do in fact have Celiac Disease. So she said I need to adhere to a strict gluten free diet, starting immediately. I know a lot of people have gone gluten free and experienced improvement. But part of me is devastated to be looking at ANOTHER incurable chronic illness! After doing some research, I am quickly realizing that Celiac Disease is a much more serious problem than I thought. I really thought it was just a food allergy, like lactose intolerance or nuts. That I could occasionally "cheat" and have some of the foods I love. But that is not at all the case. You really can't have ANY. EVER. And I feel like I have already lost so much to POTS. I am also really scared, I keep getting sicker and sicker.I have applied to the 2 week program at Vanderbilt. Has anyone done that? I am hoping that a team of specialists looking at me from head to toe could help me at least stabilize a little bit. And I am really not sure how to manage my POTS with Celiac. Celiac can interfere with the absorption of salts, and we all know how important salt is for POTSy people! So the fact that I (probably) have both, is going to make things even more complicated. Sigh.Sandy Quote Link to comment Share on other sites More sharing options...
rapid_reader Posted February 21, 2011 Report Share Posted February 21, 2011 There is nothing like GI complications to make a bad situation worse. I have had IBD since the age of 7 they narrowed it down to left sided colitis ten years later. I won't even try to sum up everything. My stomach issues just recently got a lot better during my last year of high school. Also I can totally sympathize with the C Diff. If I have one fear it contracting either C Diff A or C Diff be. I was also one of those lucky individuals to contract both A and B at the same time. I am a really tough person but the C Diff automatically makes me lose my cool, probably because I'm antibiotic resistant to it. The three top GI docs at my hospital came up with a 'cocktail" to specifically to keep me C Diff free.I have had so much trouble with absorption of nutrients and get really bad empty stomach syndrome. So I went and asked my doctor about the possibility of getting a G tube. He looked at me really funny because he he hadn't brought that up and I was practically begging him to do it. In the end I ended up doing this and it helped so much. You really never know how much eating right for yourself affects you until you have the full experience. So think about this. You and your doctor can come up with formula to help you get all your nutrients without feeling absolutely awful. I swear by the G tube.This brings me to Ceiliac. Both my GI doctor and cousin have this. Cheating on the glutin free diet is worse than having icecream even if you are lactose intolerent. My cousin always shudders when I ask about what would happen without her diet, so I presume it is very unpleasent. I'm looking into this myself somewhat as I seem to be more sensative to glutin depending on how well I am doing.Most places have a glutin free section in the market currently. Half the stuff isn't that bad either you just need to get too know what your preferences are within this diet.I totally get where you are coming from! Granted your options are much more limited to mine. I remeber having to give up red sauce during my stomach flares. During my period I get severe cravings for sauce and don't pysically feel better until I eat some. So yeah I get it to a degree.Hope this helped. Still I feel like I went off on a few tangents... Quote Link to comment Share on other sites More sharing options...
sandymbme Posted February 24, 2011 Author Report Share Posted February 24, 2011 Thanks for the reply, any support always helps, tangents or no! It is why I appreciate the forums here so much!I see an infectious disease specialist in the morning, we'll see if she can shed any light on what the heck is happening to me. Fingers crossed!Sandy Quote Link to comment Share on other sites More sharing options...
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