About our diagnosis...

I thought I would address the process we went through to finally get his diagnosis...I am sure it was a process for each of you, and our journey took over 12 years!  He started out just having periods of not feeling well.  He would be fine for several months and then wind up in the hospital overnight because he was so sick.  It would be anything from severe fatigue, severe acid reflux, severe allergic reactions with rashes, itching, coughing, sneezing, and sometimes severe nausea, and other various, often vague symptoms that each alone would not cause major problems, but put several of them all together and they are overwhelming to say the least.  It seemed like any stress would make things worse and the holidays seemed to always bring a trip to the hospital.  There were multitudes of tests done...Ultrasounds, Cat Scans, MRI's, Upper GI w/small bowel follow through, colonoscopy, Barium Swallow, Biopsies, and more that I have forgotten.  All came with awful concoctions to be drank, and then the nastiness of passing the same concoctions later.  Of course massive amounts of blood was drawn and wouldn't you know it that EVERY SINGLE TEST ALWAYS came back NEGATIVE or NORMAL! We even went to UPMC and they couldn't figure out anything, but they didn't really order any testing either, just more or less reviewed everything we brought with us Finally we went to a doctor that listened to us and said he would NOT give up until we knew what was wrong, and what to do about it.  So we had more blood work and a SERUM TISSUE ANTI-TRANSGLUTIMINASE test.  That finally came back POSITIVE or ABNORMAL.  So then the next biopsies were ordered, and they came back positive for celiac sprue.  So we went GF.  Then the doctor we started with had very little experience with celiac, so we changed over to one that had a few patients with it.  We also switched gastroenterologists. He told us from the beginning that we probably had a false positive on the biopsies because the samples had been taken from the wrong part of the stomach/intestines.  He said that if we chose to go with him as our specialist, that he would repeat all of the biopsies.  He took his samples from the right place - the duodenum, or bulb below the stomach.  The results were that the cilia were damaged, but were not completely flattened, but about 50%.  That meant that the celiac diagnosis was inconclusive.  I fully believe that by following the diet so closely that the cilia were in the process of repairing themselves and had made a good comeback.  Picture the cilia as fat little fluid-filled hairs, that are in charge of absorbing the nutrients from our food.  When the are damaged, they deflate and lose all their fluid and lie down flat, then they cannot get to the food to get the nutrients we need out of it.  That is what leads to malabsorption and malnutrition, and sometimes incredible weight loss.  Recovery does not happen overnight, but it does happen.  We are about 18 months out, and are just now experiencing an extended period of time where things are just about as normal as they can be.  There have been several set-backs and a day or two of feeling well followed by a week or two of feeling rather sick.  But we treasure the days when all is better, and we learn something new all the time about the disease, and about how we can live our lives around it and not have it completely consume us.  Try not to let it get you down!  And if you want, please share your story in the comments!!