Have you all been checked for Celiac disease? My story.....
#348008 - 07/13/09 03:12 AM
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cdc6800
Reged: 02/27/08
Posts: 50
Loc: biloxi,ms
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I started becoming very sick about 7 yrs ago, I didn't even try to figure out what was wrong with me till 2 in half yrs ago, I just suffered and dealt with it. But it got to the point where the pain was everyday! So finally I went to see a doctor, who pretty much right off the bat diagnosed me with the word I hate to hear even till this day "IBS", which later found out was just BS! Anyway, I seen 3 different doctors all in my opinion too lazy to try to figure out what was wrong or just didnt know. Finally, I went to see another doc, my 4th one by now. For some reason I didnt seem content with IBS as an answer, I didnt want it to be any more serious of course, I just didnt feel like this was an answer, I stumbled across this website a few months after my diagnosis of IBS and strictly followed the diet for several months, with no luck at all! Later finding out that this diet was actually the worst for me. I think Heather is doing a great thing here and the diet has helped some people. But, there are countless times when I have read posts on here that say they are eating exactly what they are suppose to and still have no relief. I think these people should truly consider being checked for Celiac disease. I later was diagnosed with gluten-intolerence or celiac disease after seeing my fourth doctor. It didnt show up on the celiac blood test or the autotopsy they did on a sample of my intestines, where normally the celiac diagnoses would come from. But, in my blood test did reveal that I was at a HIGH RISK for celiace which mean it was found in my genes. It took a great doctor to find out that even though I was below the borderline to be diagnosed with celiac that I was considered gluten intolerent. It has been 4 months now and I feel awesome! I never thought I could feel like this. The gluten free diet is extremely difficult but the results and the way it makes you feel is so worth it! I think its an easier diet because you know exactly what to stay away from, with the IBS diets out there it almost seems like a guessing game, how much damage did I do trying to figure out what I could eat and couldnt! Statistics show 1 in every 133 Americans have celiac. 97% or undiagnosed or mis diagnosed saying they have.... can you guess......yep, IBS! I shared alot of the same symtoms you guys do , I would really encourage you to get it checked out, a non diagnosis of celiac or gluten intoloerence leads to intestinal cancer, diabetes, osteoporosis, and a whole batch of other possible issues. If the IBS diet works for you then great ,but if not strongly consider this!
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Very interesting post. I am so glad you are feeling great! So, there are degrees of this? In other words, you are not full-blown celiac disease, but on a lesser level of gluten intolerant? I was reading about a stool sample for celiac with Enterolab. How accurate do you think the stool sample is, or is it a matter of checking for the gene? I assume the gene test predicts the likelyhood of celiac either now or in the future.
I guess the most important thing is finding the right doctor. So many don't listen, treat you like a moron, or only give you the 6 minutes the insurance companies allow per patient, so how can you be treated correctly?
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I have another question for you. When you had to take gluten out of your life, were you able to do it all at once? I know gluten is in everything, so it must be difficult to get it out all at once, and still know what to eat. Was it a gradual process for you? Thanks!
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Thank you so much for your post! This is exactly why we do not recommend self diagnosis. Even doctors do not complete the full diagnostic tests for IBS. You are unfortunately a classic example of what many doctors do; Assume that it's IBS without even testing for simple disorders and diseases that share common symptoms. Our website is extremely comprehensive. We always encourage people to find other doctors if they aren't getting the care they need. Some folks need to hear stories like your to follow through with our advice. Here's the Rome Criteria for an IBS diagnosis. It's hardly followed through! http://www.helpforibs.com/footer/ibs.asp#diseases.
I am so happy that you took your health into your own hands!
All my best to you,
Erin
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Erin Dudley, MS, CN
Certified Nutritionist
Heather's Tummy Care / Heather & Company for IBS, LLC
IBS Education, Support, & Products
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LEGAL DISCLAIMER - This email is not intended to replace the services of a physician, nor does it constitute a doctor-patient relationship. Any application of the recommendations in this email is at the reader's discretion. Heather Van Vorous and Heather & Company for IBS, LLC are not liable for any direct or indirect claim, loss or damage resulting from use of this email and/or any web site(s) linked to/from it. Readers should consult their own physicians concerning the recommendations in this email
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Unfortunely, taking gluten out cannot be a gradual process for proper healing. I had to just stop eating gluten all together all at once, at first after I found out that there was gluten in just about everything, esp. things I loved the most, which is bread,pasta,pies,cakes,and cookies I thought what am I going to eat! So the first month was hard only because I didnt realize there was soooo much out there that I could eat and so many substitutes out there I have not yet tried. Like Walmart sells gluten free pasta, there is all kind of pasta made from corn flour or potato flour. Online they sell tons of gluten free products. So, now 4 months later, I am not missing out on anything! These substitute items in most cases dont taste any different from the ones made with wheatt flour. After I was on the diet for just 2 weeks, I was feeling great, so by then I didnt care what I had to give up because it was so worth being free of the pain, I never thought I would feel this way again. My husband is in the military and we just moved to Italy a month after I was diagnosed and I was terrified because here I am about to go into a country full of bread and pasta but, they are even more aware of celiac disease and gluten intolerence here than they are in the states. So its been great! Once you see all your gluten-free choices out there and start feeling good again, you wont even think about going back to your old diet...I promise! 
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There are degrees of this intestinal disorder. I did a stool sample and had an upper GI done and it came back as nothing. By this point I am like, am I just crazy, is this all in my head? I seen several doctors like I said, I finally found one that told me, "I promise I will find out what the problem is" he probably could tell that I had just about givin up hope. He did a CeliacPlus blood test, it also showed no celiac, my intestines were not damaged to point that it would show up celiac disease. So after trying the diet for 2 weeks and it helping then seeing that I was at a high risk for celiac which he seen in my blood test was when he diagnosed me as gluten intolerant. Which not taken care of
eventually would have become celiac disease then later to even worse disorders. For instance, I have a friend that has full blown celiac and she wont even touch bread or remove her own croutons from her salad. Being gluten intolerant, I don't have to worry so much about that stuff. Yes, finding the right doctor was crucial but also doing your own research and maybe bringing things to your doctors attention. Let me know if you have any more questions. I feel selfish sometimes, to know that so many other people out there have this disease and are not treating it and I finally found out what the problem was, I just wish everyone would at least get tested!
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Thank you for all the info. I figured it would be very hard to go from one day eating gluten to the next day totally revamping your diet. I guess the hardest part is eating on the run. So, if I am to understand you correctly, it does not always show up, until maybe it has done it's damage? So, you are not quite as strict as your friend who picks out the croutons. By not being as strict, will that still stop the progression of the disease?
May I ask your age? Thanks
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Well as far as eating on the run, kinda like Heathers diet here....just planning ahead and being prepared. I have found that the gluten free diet has been alot easier to follow though. It doesn't always show up as celiac disease, but the doctor should be able to tell you if it is found in your genes or if you are at a high risk for it, then you would be considered as gluten intolerant, like myself. For example when I called my doctors office to get my test results the nurse just simply said, "No, you dont have celiac disease." So I thought ok just another negative test, I will just go back to my followup and see what he has for me next...(this doctor was determined, thank goodness!) Well when I went in for my followup appt, he says, "So what do we know?" And I say well I know I don't have celiac, I called up here at the office and got my CeliacPlus results and the nurse told me that I don't have it. This actually upset him, he called in all 3 of his nurses in his office at the time, and read my chart to them. We didn't know which nurse told me that exactly so thats why he called all them in. He said, " On this chart it shows that this patient does not have celiac, yes but is at a high risk for it. She is at a high risk for it because it is found in her genes, her mother or father has celiac. This makes her gluten-intolerent. It may not be to the point of celiac but keeping on eating gluten would have brought her to this point." So they all agreed that this was the correct diagnosis. He was quite funny, hearing all the nurses agree with him knowing that one of them told me wrong! I just burst out in tears and gave my new doctor the biggest hug, I was so happy and he seemed genuinely happy for me. As far as my friend, she has celiac and with some celiacs you can develop a skin rash with coming into contact with wheat so they don't even touch it. Me I can just pick them off and it wont bother me. You do have to be careful with cross-contamination though, so I still do watch this very carefully. But once you are off the gluten this will stop the progression of the disease, and he really matters how much damage it has done all ready. But for the most part after going on the diet all my symptoms subsided, within a 2 week period.
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Can it heal any damage that has already been done, by going guten free?
I know I am asking alot of questions, but I like to ask people who have first-hand experience, instead of the so-called experts with all their data, but don't have a clue, because they don't have that first hand experience.
I am just wondering if you are gluten intolerant, but are not to the point of celiac, wouldn't cutting out all forms of gluten be necessary, even cross-contamination, to prevent further progression? I have read of people who need separate cooking facilities in their home, because even a crumb of bread will set off symptoms. I just wonder how far you have to take it, if you are sensitive? I have a concern for myself, so I am curious about this.
Thanks for letting me be a pest!
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You are not being a pest, I am happy to answer any questions I can for you!
I would say if you are gluten intolerant or celiac it is always better to play if safe, like there are a lot of items on the market that may not contain wheat but on the label it reads..... this products was produced at the same facilities as wheat. (something to that effect) other words they are trying to tell you that it could be cross-contaminated. I wont buy those products either. Like I said about the crouton thing, I have done this and had no reaction. But, such a small about should not be a problem for some people that may just be sensitive. But, doctors will tell you to stay away from gluten all together, and this is probably best. Too many "small" amounts can equal a large amount, which is more than someone that is sensitive should eat. I really think that if you think you may be sensitive to gluten, you should give it a try for even just a week or two if possible. you can have all meats (careful with marinade) fruits, and veggies. In some cases dairy. You have tons of choices! Maybe do this for a week and if you are feeling a little better present this to your doctor and ask him to test you because of your suspicions. Of course, you always want to get a diagnosis from a doctor. My husband is not sensitive and I have not felt the need to cook with different utensils or cookware. If you have at some point given up gluten and still are having some symptoms then you may want to check into you possibly being cross contaminated, then that is when I would become a little more picky about things like that. It can heal damage that is already done, if it hasn't gotten to a point thats not reversible such as intestinal cancer. But I suffered with it for about 7 years, and I am healing up good with no long term affects. Of course you must continue with this gluten free diet forever, to stay completely healed. I dont know how long you have dealt with it, but if you don't think that it has caused any serious damage yet, then I would wait on going to the doc for a couple of weeks and try the diet, because most likely if you are just "sensitive" then part of their diagnosis process will be putting you on this diet anyway. So you can be a step ahead of them. Also, I am not sure if you are following Heathers diet or not but I followed it for several months and it did not help me at all, the things that I could eat on Heathers diet was the things that were doing the most damage to me. I don't want to talk bad about Heather or her website and what she is doing because I think it is great for people who really do have IBS, but for those who have these gluten sensitivities and are following this diet, they are really doing their body a lot of harm. I hope I answered your questions! Let me know if I can further help!
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