What A Year It's Been So Far

[tfrost]

2011 came in like a lion with major case of celiac disease for me

First, I'm so glad to find support via forums like this because I don't know what I would do trying to forge my way through a newly gluten free existence without it. I wanted to post what I've been through recently in case it could help someone out there not have to go through the same things I went through just to find out I have celiac. Here goes...the day before Christmas Eve my internist checked me into the hospital because I came in to see her that day complaining of a GI bleed (translation - blood in stool). I had a horrible tummy ache the night before and I honestly thought I had just eaten something bad earlier in the day. It was a doozy of a tummy ache though as I ended up curled up in the fetal position on my bathroom floor sweating profusely, but I really just thought it might be food poisoning. The next morning (and I apologize in advance for the grossness of my story) I started seeing blood in my stools. This happened about 5 or 6 times throughout the morning until my husband convinced me to go to the doctor.

She told me the bleeding wasn't something to dismiss and that I needed to be admitted to the hospital to run a lot of tests to figure out what was going on. They ran blood tests, fecal tests, CT scans of my belly and the one thing I never wanted to get before I turned 40 (especially on Christmas Eve), a colonoscopy. The colonoscopy showed that I had ischemic colitis. The GI doc in the hospital explained it as if my colon had a heart attack. He wasn't sure of the cause, but in younger patients it was usually a fluke thing that wouldn't happen again and sometimes happens out of nowhere. So I went home that day and lived life as normal.

Being the holidays I gorged myself on yeast rolls, cornbread dressing, cupcakes, pies and all the holiday goodness I could eat for the rest of the week. I never thought twice about what I was eating because the GI doc said I was good to go without any changes. The bottom fell out both figuratively and literally on the day before New Year's Eve. Bad timing too because earlier in the day my husband had to have his gall bladder removed and I was trying to take care of him fresh from the hospital along with our two young, very active kids. I was eating dinner when I felt the need to go (and I'm sure you folks with celiac know what I mean) so I rushed to the bathroom. No stomach cramps this time, just needing to get to the bathroom as quickly as possible. I won't go into too much detail and again, I apologize for what I'm about to say, but to sum it all up, the bathroom looked like a crime scene. This kept happening for 2 hours until I told my husband that I needed to go the ER as I was feeling like I was going to faint any minute. Thankfully my parents like close by and one of them was able to help take care of my husband and kids while the other rushed me to the ER.

I had lost a good bit of blood by the time I got to the hospital that I needed a blood transfusion (never ever have needed this before in my life), and I was pretty scared. The GI docs were stumped and at one point during my 6 day hospital stay one of them called me 'an enigma' and 'baffling'. Those are things you want to hear from a doctor, right? They did more CT scans, more blood tests, and endoscopy and a GI barium xray. I was getting nowhere until I heard the GI tech tell me that the barium shot through me in 20 minutes flat. She said she never really sees that and that it could indicate things like celiac. I did some research via my iPhone in the hospital that night about celiac and the next day I mentioned celiac to the GI doc. I told him that the barium shot through me in 20 minutes and that I had been experienced a lot of the symptoms of celiac - numb hands, intermittent digestive problems, mouth ulcers, missed periods etc. He looked at me like I was crazy and said that it was probably Crohn's or irritable bowel syndrome. I was scheduled for the endoscopy the next morning and I asked him that even though he didn't think it was celiac, could he please just biopsy for it anyway. He nodded, but I was skeptical that he would even consider celiac.

The endoscopy came and went and the GI doc said that he didn't really see anything that pointed to celiac and that I probably just had another ischemic colitis bout. He said he would send me home and told me not to eat too much roughage for the next few days. Needless to say I thought everything he just told me was complete bull. I took it upon myself to try a gluten free diet the minute I got home. The endoscopy biopsy results were going to take a while to come back, so in the meantime I maintained the gluten free diet. Within a few days my mouth ulcers were gone, my hands stopped being numb and I started to feel better in general. I couldn't get a follow up appointment with this GI doc until almost a month from the time I went into the hospital the second time around. He had changed his tune a bit when I met with him this time around. He said the biopsy results did show some villous atrophy consistent with celiac. I told him that I had been on a gluten free diet for over 3 weeks by that time and that a lot of my weird seemingly unrelated symptoms had started to go away or were completely gone now. He told me that he wanted to get the blood test done for celiac to confirm. A week later the test came back positive, and the GI doc that one month ago thought I was crazy for thinking it was celiac was now trying to help me find support groups, a dietician, and seems to be on my side now.

Anyone out there with a weird mixed bag of symptoms that include things like mouth ulcers, numb hands or feet, on and off digestive problems that include stomach cramps for no real reason, feeling like you're starving after you've just eaten, feeling hungry all the time, weird weight loss or gain or both for no real reason, missed periods, thyroid problems, and tons of other seemingly unrelated things, please, please, please ask your doctor about celiac. I would never in a million years had guessed this was causing so many weird things to happen. And I don't want anyone to ever go through what I had to go through to find this out. Thanks to all for reading my very long and at times, gross story. I am glad to finally be on the road to recovery, happy to have an answer, and happy to have found a place where folks like me can go for advice, support and just to rant sometimes

[Dixiebell]

Welcome to the forum tfrost.

Thank you for your story.

I am so glad you were able to find out what was causing your problems.

Parts of your story remind me of my young adult daughter. She was having GI bleeding and stomach pain, vomiting, dehydration and several ER visits. Her testing is supposedly normal. She is pregnant on top of all this. I mentioned to her about trying gluten-free, she did and started feeling better. She is a stubborn one, so she has 'tested' herself a couple of times since and gotten sick each time. I think she is seeing a pattern.

I am very thankful for this forum and everyone here. Thank goodness there are people that know about celiac and gluten intolerance because if some of us had to rely solely on our doc we would still be suffering needlessly.