Hello to all...it's been a long time since I've been here. This is going to be a long one. Some background for those who weren't around in the beginning of this BB. I started having diarrhea problems around 1992 and lived with it until 1997 before seeking medical attention. Then I went for the barium enema followed by the colonoscopy. They found nothing, advised me to eat more fiber and live with it. Take immodium as needed. It's IBS. Even though my symptoms were just diarrhea...no pain, bloating, gas or alternating C & D. Well I've argued with flux about whether it's IBS or not if you don't have pain and I don't want to go through that again. The doctors said it was IBS. Last November my "IBS" was worse. Watery "D" everyday no matter what I tried. I had been taking Questran Light with good results but even that stopped working. During a blood test it showed I had high liver enzymes. Don't ask which ones. They told me several different readings were high but the one that concerned them the most was a reading of 158. A normal reading was 107. At this point after reading the imodium label (it says not to take it if you have liver problems and I had been taking it daily for almost 3 years) I stopped taking imodium and lomotil (same thing about the liver). The "D" became unbelievablly worse. Nothing but water about 8 to 10 times a day and I was getting desperate. I was sent for a sonogram of the liver and it came back normal. Followed that with a cat scan of the liver. It came back normal too. Followed that with small bowel series. Normal. Complete run of stool tests. Normal. But the liver enzymes had dropped to 142 since I stopped taking immodium/lomotil daily. I was however taking lomotil on the worst times when I had to go somewhere. Doctor said it was IBS and he did not know what else to try and he wanted to refer me to a Gastroenterologist in St. Louis, Missouri. Took a month to get in to see him but finally on May 3rd I had my first apppintment with him. He was very understanding and listened to my whole story and went over all of the results of previous tests. He said it is uncommon to diagnose someone with IBS if they don't have pain (thought of you flux) but he was working off of a diagnosis of IBS for now. He asked if I had ever been tested for Celiac Sprue and if I had tried antidepressants for the "D" and I told him I had tried Paxil but it made it worse and no I didin't think I had been tested for Celiac Sprue. He sent me to the lab for some blood tests (checking for Celiac Sprue) and gave me an Rx for Nortriptyline (antidepressant) and to let him know in two weeks how it was going. He told me to take the Nortriptyline before bed as it makes you sleepy. And he was right. I had never slept better in my life but it was only marginally helping the "D" as I was still having to take imodium/lomotil every now and then. I called and told the nurse I wasn't much better and asked about the bllod test results. She said the blood test results were normal. The doctor was at a GI conference in California and would not be back until the following week and she called in a refill for the Nortriptyline. I had started at 25 mg the first week and then went up to 50 mg a day after that. Still not much help but boy was I sleeping good. Could not get out of bed unless I slept for at least 10 hours and 12 felt even better. So I called the next week when the doc got back. Still wasn't doing any better so he said he wanted to do an endoscopy of the stomach and small intestine so he could completely rule out Celiac Sprue Disease. He was 95% sure I didn't have it but he wanted to be sure. The morning of the endoscopy (this is late June now) he asked if the Nortriptyline was helping and I told him not much so he said to start taking 75 mg a day and see how that went (People taking it for depression are usually at 100 mg a day). He also gave me an Rx for Codeine cough syrup to take too. Then they put me out for the endoscopy. When I woke up in recovery the doc came in and said he observed some redness in my stomach and small intestine but he said he didn't think it was Celiac Sprue Disease. The Nortriptyline/Codeine combo really helped with the diarrhea but how long can someone stay on that? I was sleeping really good though!Then the pathology report came back!Now the point of this post...yes I do have a point to make. The symptoms of Celiac Sprue Disease are at least, if not more, as varied as IBS. I urge all that are interested to read this page of symptoms for Celiac Sprue: Celiac Sprue Disease Symptoms I have joined a mailing list for Celiac Sprue and a LOT of the people there were originally diagnosed with IBS just like myself. If your doctor has not checked for Celiac Sprue I urge you to get it checked out. A blood test might suggest that you have celiac disease but the blue-chip means of diagnosing celiac sprue remains to be the small intestine [jejunal] biopsy. Celiac Disease: The Diagnosis I started the gluten free diet, which is the only form of treatment for Celiac Sprue Disease, on July 8, 2002. Within the first two weeks the diarrhea was gone and I've felt better and better every week. Let me tell you folks something...I never realized how sick I was until I got to feeling so much better. It has just been amazing. Maybe the majority of people here don't have Celiac Disease but if this post helps just one person than I'm glad for that one person. I urge you all to at least talk to your doctor about this if you haven't been checked out for Celiac Sprue Disease. My gastroenterologist in an assistant professor of medicine at the Washington University School of medicne and even HE was surprised by the outcome of this. I did not have the "classic symptoms" of IBS or Celiac Sprue Disease but there is no denying the pathology report or the success of the gluten free diet. And if anyone is interested as to what a gluten free diet is, it is a diet free of any wheat, barly, rye, and sometimes oats. Some people can eat oats...some cannot. It is not an easy one to follow. No bread, pasta, or beer! There are gluten free substitutes available...except for the beer. And you have to constantly read labels and call the food manufacturers to check on the ingredients for gluten. Food manufacturers change the ingredients often so it is a never ending quest for info. As I said it is not easy but it is worth it. Good health to all. If anyone has questions feel free to email.Oh, one more thing...I am now gradually getting off of the Nortriptyline and I've been off of the codeine since the middle of July. In another 10 days the only medicine I will be taking will be Calcium + Vitamin D supplements. Celiac people are prone to calcium deficiency. CVS brand is gluten free.Yes, medicines can have gluten also. Anyway I hope this info can help someone.
After all this time and so many tests I've had Celiac Disease all along. NOT IBS! Damn, flux was right!quote:Histologic sections of the duodenal biopsy show marked flattening of the villi with associated chronic inflammation. Lymphocytes are identified in the epithelium, while the lamina propria is filled with plasma cells. These finding are suggestive of celiac disease (gluten sensitive enteropathy).