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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!
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).
After all this time and so many tests I've had Celiac Disease all along. NOT IBS! Damn, flux was right!
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.
 

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I'm very happy that they found what you had and you're feeling much better. Flux helped a few others here with what seemed to be ibs but was much worse. I think his view is needed here.
 

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joe, thanks for your story, I have been down the road of gluten free since february after it was mentioned on this BB. I was IBS d-type, severe d-type and gluten free helped. my bloods came back normal and I was told to eat gluten again and only after 4 weeks I was becoming ill again. I shall print off your story and take it to my Dr on my next visit. Perhaps a biosey can be arranged with normal blood results. Thanks for taking the time out to mention this too us all. Take Care, I know being gluten free is very difficult, but to feel well again makes it all worth while.
 

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Joe,I am very happy for you. Its wonderful you found an answer. I am sort of going through that now - trying to find out if I have celiac. Would you might posting or private messaging me what the transition period was like - up and down, or just steadily better. I am confused and trying to stick with the gluten elimination since I am unsure if I will be able to get the biopsy. I have been dismissed with ibs and antidepressants so many times. Congratulations!!
 

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Hi.....i had the same thing...my blood came out poisitive for celiac disease. Everything on the symptoms list (well almost) I have...it also would explain my longgoing problems with my teeth wearing away when for 10 years ..no one still knows what it is. Then he tested me through a bbiopsy of my esoph and...NEGATIVE. I am in no way convinced that I dont have an intoleranvce to wheat..but I dont know what to do about it.
 

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Hi Joe,Long time, no see!
So glad you found the answer to your problems. Your story proves that doctors are all to quick to give an IBS diagnosis without exploring further. I am always happy to hear a story with a happy ending!
 

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Hi Joe, nice to see you back but even more nice to see you won't need to come back.
 

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Am glad you are better too? Oh my gluten free diet would sure cover lots of things you can't eat. Why don't you list come of the foods you CAN eat. For example...what would be a typical type of meal for you. Thanks.
 

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JoeSo glad you finally got a correct diagnosis. It's so important - my couin was becoming pretty anemic due to celiac but didn't know it until she was diagnosed. Now that she's changed her diet, she's fine.take careNancy
 

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Joe:Glad to hear you finally got a proper diagnosis. Sorry to hear it took so long. As you have pointed out it is important to get a thorough work up to rule out other ailments that can mimic IBS. Unfortunately this can be easier said than done. I still have not found out why I tested positve for malabsorption but at least celiac was ruled out through biopsy.Life without beer!!!!!!! Tough, but definitely doable.
 

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Discussion Starter · #16 ·
mrysgrl and ncottle,Sorry for the delay getting back to here. Thanks to everyone for your comments.As far as the transition it was just gradually getting better. No big change all of a sudden. There really haven't been any major ups and downs. If I accidentally eat something with gluten I will have "D". It's happened a couple of times. Once with a barbecue sauce that I ate on a weekend when I couldn't call the manufacturer to check on it's status and another time when the ingredient list appeared to not have any gluten. I ate it and paid the price. A lot of people with Celiac disease are intolerant of dairy also and some are also intolerant of corn and soy. Luckily I'm not in either one of those groups yet. Also people have told me that once you go gluten free that you become even more sensitive to gluten over time meaning that even a very small amount will cause a reaction. As far as I know my only reaction is "D". I never have had pain, gas or bloating or "C" which a lot of people experience. I also have Dermatitis Herpetiformis - Skin Condition Associated with Celiac Disease. I never knew what this was until after I was diagnosed with Celiac Disease. I've had the symptoms for years but never knew what caused it and never associated it with any gastrointestional problems. As for the diet itself the things I miss most are wheat bread and pasta. I make my own gluten free bread which is not too bad except that it tends to fall apart. The taste is not bad at all. There is rice and corn pasta. The only thing I've tried is Maize Elbow Macaroni and it was not too bad. Takes longer to cook but overall it was okay. I plan on trying some gluten free spaghetti and also lasagna. Of course you have to be careful of all the ingredients. It's a lot of work. Some of the things that are safe is fresh meat, fruits and vegetables. Quite a few candies but not all. Most soft drinks like Pepsi, Coke, Sprite, 7-Up, Dr. Pepper are all gluten free. Most dairy products are gluten free but you have to check. Some cheeses use wheat flour in the packaging which is not listed as an ingredient. Most cereal's are not gluten free. For instance, Kellogs Corn Pops do not contain gluten in the ingredients, but they are packaged on the same production lines as other cereals that do contain gluten therefor Kellogs will not tell you they are gluten free. Some people say they can eat them and some say they can't. I guess it depends on how sensitive a person's system is. Cakes and cookies are on the unsafe list. You can have some potato chips and some you cannot. You have to be careful with any processed meats. Oscar Meyer hotdogs are safe. Hunters are not. It gets confusing and you're constantly trying to find out what you can and cannot eat. And just becuae something is safe now doesn't mean it will be in a month from now as manufacturers are constantle changing their ingredients. There is a bill now before the Senate. I can't remember the name or number of the bill but basically it would require manufacturers to list known allergens on their ingredients like Wheat, Barley, Rye, etc. Now if a label says "Modified Food Starch" you don't know if it's made from wheat, corn, or potatoes but if this bill passes they would have to list any known allergen in it like "Modified Food Starch (Wheat)". It would be a big help to anyone with any kind of allergen or intolerance to certain foods. Most of the food manufacturers are lobbying against this bill. Two exceptions are Kraft Foods and Nabisco which have already changed their labels to comply with this new regulation if it passes.mrysgrl and ncottle, I hope this has answered some of your questions.
 

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Hi Joe!I am new here and was so glad to read your post. I have suffered from constipation and nausea a general feeling of malaise for two years now. I have always had problems with the constipation all my life though. I also get the huge tummy bloat once in a while and I too have been dismissed with IBS, Once I started taking an herbal supplement to help regulate my bowels I noticed I also had yellow fat globules floating around. This is a symptom of celiac as well as all my other symptoms I also do not have the horrible pain of IBS although I have had doctors precribe me medicine for the pain that I never complained of having. Intereting huh?? Well I saw a new doctor and told him about cleiac and he agreed it is a possibility but he wants me to give Zelnorm a try for 6 weeks and see if it makes a difference and if not then he said we would do a gluten challenge and see what the does. I have no medical insurance so it is hard to do the extensive and Expensive tests.But I wanted to say to the people on this board--+That just because you had a biopsy that came back negative for celiac does not mean you don't have it. You could have patchy damage and the biposies could have been taken from unaffected areas. Many people who have the blood tests also come back negative since sometimes if you haven't enough gluten in your system all things will look okay. There is a stool test that will show antibodies to gluten but once again you have to be on a full gluten diet for two weeks to be sure that if there is a reaction to gluten that it shows up. I have long believed that most IBS cases are just hogwash and there is an underlying reason that for some reason cannot be found. IBS I am sure exists but I don't think it is as prevalent as doctors think.Also if you are an undiagnosed Celiac you are increasing your risk to intestinal cancer. If you have or suspect you may have celiacs disease get the test if they all come out negative go on a gluten free diet and see if it changes things. From what I understand sometimes the diet is the actual diagnosis since the tests can be so dodgy.Kellie
 

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Discussion Starter · #18 ·
Hi Kellie,That is true that going on the gluten free diet is an effective test. If your symptoms clear up then you know that you have a wheat intolerance at the very least or full blown celiac disease. The clinical diagnosis is the biopsy followed by a gluten free diet and if that helps they say you need to go back on gluten for 6 months to see if you get sick again. Now who would want to do that?Anyway I found this new article about a new test for Celiac Disease that looks promising. Scientific Breakthrough: Finger-Stick Test for the Laboratory Analysis of Celiac Disease It should be a lot cheaper than a biopsy for anyone unfortunate enough to not have health insurance.
 

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Hi Joe, So glad to hear they finally got it right. My GI doc missed an infection of H. pylori for 5 years (and he even did 2 endoscopies!). A nurse practioner found it and treated me for it, and what do you know, my chronic gastritis went away! (now if only the doggone throat spasms and nausea would go away, too, I'd be normal again!). I'm glad you posted your story as I'm sure there are other severe D types here who can take your story to their own GI docs. By the way, can people with celiac sprue be predominantly C?Best wishes to you!
 
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