This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Discuss with your doctor that you feel the wait for the biopsy is unacceptable, but I am the odd one out on this issue. The gold standard for diagnosis is biopsy. Period. You are so close to having one done it would be a shame to remove the gluten at this point, when it is very possible your doctor could put you on a cancellation list in order to have it done sooner, or move the appointment up because he realizes your level of anxiety.
I agree that the bloodwork for detecting the possibility of celiac disease has come a long way. However, it is far from perfect and I am living proof. I had at least four negative bloodtests and the biopsy confirmed that I am celiac. If the bloodwork was so reliable, it would have picked up my celiac. Therefore, since there is no perfect science, I would think that you would be prudent to wait for the biopsy. If it turns out negative, and you have been feeling lousy for so long, go gluten free anyways. It may well be that you are gluten intolerant. Wait until the biopsy is done, then go gluten free regardless of the results. Your aim is to feel better and removing the gluten from your diet is well worth the effort.
I was initially diagnosed with Lymphocytic Colitis and then a biopsy confirmed that I also have Celiac. When I was first diagnosed I wanted to curl up into a ball, stop eating and starve myself to death. I thought this would be far more humane than having to adjust to a gluten free life. It seemed impossible to me that in the year 2007, when almost every single prepared food includes some form of gluten, that I could have this disease and not have ever heard of it.
I went through a rollercoaster of emotions, and it took months before I could finally accept the diagnosis. Initially, I was devestated and depressed at the thought of what I would be giving up. After this faze, I was frustrated and angry, and must admit, felt quite sorry for myself. On the few occasions where I had to eat in a restaurant, or attend a luncheon, I had to fight hard to hold back the tears, and rarely was I successful.
It has been sixteen months and I am amazed at how I have not only accepted the diagnosis, I am actually fine with it. I cleaned out my cupboards and got rid of anything containing gluten, bought a new toaster, found a great bread recipe that was easier to make than yeast bread (no kneading), and learned to shop using my celiac dictionary. It turns out that you end up eating healthier. I have found a lot of great BBQ sauces that are listed as gluten free, a wonderful salad dressing line (Renee's Wellness), and other products that allow me to continue making some of my favourites like breaded eggplant, meatballs with bread crumbs, etc...
It really does take time, but you will learn to live with this disease. I recently told my husband that I would have been the first to stand in line and risk my life to try a new pill or potion in order to get rid of the celiac disease, but no longer. I have accepted this lifestyle and it is mainly due to the fact that it almost forces you to eat healthy. It keeps my weight in control because I tend to stick to full muscle meats, salads, rice, fish etc.. I make a knock-out pizza using the corn tortilla crusts. They are thin and stay crispy when baked.
Before celiac disease, we ate out quite a bit. I still find eating out to be bothersome. By the time I speak to the restaurant manager, explain cross contamination issues, etc, I still cannot be sure if there is gluten present. I sometimes have known for certain after eating out that there was indeed gluten in something and have had no reaction, other times I have had a reaction the following morning, or hours later. I think every celiac will have different reactions at different times. I now go to restaurants where they know me and where they have taken the time to make certain that my meal will be handled properly. I will order a pure beef hamburger patty with lots of fried onions, fried mushrooms and topped with mozza and a side salad, for example. Fish and steak are also great choices.
In a nutshell, give yourself time to grieve. You are grieving the loss of the only lifestyle you have ever known. You are losing a lot of the comfort foods that you have always loved. You are taking on a daunting, challenging, time-consuming task to learn how to eat for the first time as a celiac. It will be hard, but if you are as lucky as I am, you will come to realize that being forced to carefully examine what goes in your mouth, is in some ways, a blessing. I still battle severe bowel problems due to the colitis, and wonder how on earth it all came to this, but with gluten out of my diet the serious side effects of untreated celiac disease are something that I worry less and less about.
After sending you the long note, I looked at the header and chuckled because I didn't even get around to answering your question regarding the difference between being a celiac and being gluten intolerant.
It is my understanding that if you are gluten intolerant, ingesting gluten will make you ill, but will not destroy the villi in the small intestine. I would think though, that constant diarrhea from intolerance would not be good for your overall general health and you would have to look into whether there is the potential for other health complications related to gluten intolerance. I'm not sure about this, but there must be information out there on the subject.
With a celiac, the ingestion of gluten destroys the villi in the small intestine. This can lead to all sorts of other diseases such as cancer and osteoporosis, to name a few.
It is never advisable to remove gluten from your diet before being propoerly diagnosed with celiac because removing the gluten may then produce a negative result, and you wouldn't know for sure if you are indeed a celiac. If I am understanding you correctly, you are not in the position to have the testing done so have decided to remove the gluten from your diet, without testing, to see if you feel better.
Therefore, assumning you may be a celiac or gluten intolerant, for the most part, removing the gluten should bring you fairly rapid improvement in your overall condition. From the reading I have done, and from my own experience, if you are not getting even trace amounts of gluten, within days (possibly longer), the diarrhea will eventually stop and your bowel function returns to something more normal. I also believe that most celiacs do not require medication for the condition because the gluten free diet will do the trick.
If you have removed the gluten from your diet and are still experiencing symtpoms I would think that you are either not a celiac or gluten intolerant or, if you are, you are getting gluten from hidden sources. Removing gluten from the diet is initially, a daunting task. You need to find a list of gluten sources (I am sure this web site has one), and print it out. Then you would need to go through your cupboards and check the labels on everything that you are consuming. Gluten is hidden in all sort of things, especially in prepared foods, sauces, dressings, etc. You must also be aware of cross contamination issues. If others in your household are eating a regular diet, you would not be able to share the same items such as margarine, peanut butter, etc. because if they are putting their knives or spoons into these containers, the item would then be contaiminated and you would not be able to use it. Remember, all it takes is trace amounts of gluten to be toxic to a celiac. This amount is what can sit on the head of a pin, so you can appreciate how careful you have to be. I removed all foods from my cupboards that contained gluten, bought a new toaster, and I do not allow any foods containing gluten to come near my kitchen. This is not possible for most people, but I want to highlight how little it takes to still be ingesting gluten. You must also not lick envelopes, and if you are unsure of something you are going to eat, simply don't eat it. You'll find it easy if you stick to fresh vegetables, whole muscle meats, fish, ect. A lot of processed meats do contain gluten so any processed meat you do buy would have to be checked.
You were wondering about how long it takes for someone to react to ingesting gluten by mistake. I would think that every single celiac or gluten intolerant person would be different. I have had a reaction in as little as a few hours of ingesting gluten, and I have also realized I had ingested gluten (when dining out), and have had no reaction at all. A few times, when travelling, I would have dinner and the next morning I knew that gluten had been ingested. So in a nutshell, the length of time of a reaction, and the severity of the reaction, probably could not be used as an indicator as to whether your problem is indeed the gluten. If you are dealing with some other type of bowel disorder such as colitis or IBS for example, you most likely would suffer from much the same symptoms after ingesting food as a celiac would, only it wouldn't be gluten related at all.
I really wish you luck Lacy. I do think that you may indeed need to be properly assessed in order the sort out what the actual problem is. I can relate to your misery, as I was first diagnosed with lymphocytic colitis before the confirmation by biopsy of the celiac.
I think that if you are going to go gluten free, then you should be as informed as possible about the hidden sources of gluten, then see if you improve once you have re-evaluated your diet. If you are just avoiding wheat, this would not be nearly enough to remove the gluten from your diet and produce favourable results.
I hope this helps you and I wish you the best of luck on your quest for an answer. Take good care of yourself,
Thanks so much for the replies. I went back to read the article on RS written by Michelle Melin-Rogovin on this website and she mentions that when ruling out RS a colonscopy should be done to see if Lymphocytic Colitis is present. This has me a little nervous because I was first diagnosed with LC by colonoscopy and then diagnosed with Celiac by gastroscopy.
I will take the advice given, while patiently waiting for this re-assessment in July.
I am seeking information regarding refractory sprue.
I was diagnosed with celiac in January of 2007, and my follow-up biopsy this January was normal due to strict adherance to the gluten free diet.
Since the end of April I have severe diarrhea, and yet have made no changes whatsoever to my diet. I am wondering if it is possible to have a normal biopsy in January, and yet possibly have this refractory sprue?
I called the specialist who follows me for celiac and explained how severe my symptoms have been. The receptionist certainly did not seem concerned and made me an appointment for July.
Any information would be greatly appreciated. I am really worried and am unsure of what to do, if anything.