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      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About par18

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  1. This has been my position exactly since I was diagnosed over 3 years ago. If a person does the gluten-free diet correctly only a couple of things will happen and none will be bad. One it will work, two it will not (and then it is on to your plan B without money spent on testing ) or three it will help to the extent that if something else is wrong it may allow this to become more apparent. The worst thing someone can do is to go about the diet in a less than 100% fashion (lack of knowledge or willpower) and then it will can make diagnosing anything almost impossible. Take it one step at a time. If gluten is only one of multiple issues then control that portion and move on the the next step. If it appears after being on the diet that it "is" the culprit then decide whether or not to go back to eating it and trying to get a diagnosis. Like I have said before then you know you are traveling in the right direction. This way "you" will control the process without putting it into the hands of the health care profession whose track record on diagnosing this condition (about 3%) leaves something to be desired. Tom
  2. I could not agree more. Why get a full panel with negative blood work? The only test that really matters is your response to gluten or anything else for that matter. If you are sure that you have a problem whenever you consume something then what other proof do you need. On the other hand if you cannot handle family members, friends etc. questioning your lifestyle change based on "your" findings then you might consider another approach. Personally I could care less what anyone else thinks about what I may eat or drink as long as it makes me feel fine. Insurance, school needs for children etc. are factors others consider when facing this decision (further testing). If you are sure that gluten is a factor in your health I would try to find a doctor who might give me a diagnosis based on diet response which would help in being able to request gluten-free for you and your family in the future. I hope this helps. Tom
  3. I read an article last week when I did a search on Celiac and golf. It concerned a young woman from Australia named Sarah Jane Kenyon. She is gluten intolerant and explained how she must prepare in advance things to eat while competing abroad. She mentioned how many more gluten-free choices were available back home as opposed to the US. Has anyone there heard of her and do you feel as though there are adequate selections of gluten free products in your country. Tom
  4. I was in the same position when I started the diet. We had a pretty expensive toaster and I decided to try to clean mine. I used an air compressor and completely blew out all four slots with the bottom removed. Only gluten-free bread was used after that and in the 3 plus years since I have had no symptoms. I guess it would depend on the individual and how sensitive he or she may be. For the most part we bring very little gluten in the home and if it does happen it is "isolated" until consumed. We also did not replace all the wooden or non-stick items but rather clean and not expose them to gluten again. I was a biopsy confirmed Celiac with the classic symptoms so I know I will react to exposure to gluten. So far so good. Tom
  5. I think something like this varies with the individual. I for one have not had so much as a cold in the past three years since going gluten free. A couple of times I thought I was beginning to feel the effects of a "bug" but nothing has lasted more than about 24 hours. I feel as though my immune system is stronger than the average person since it is no longer reacting to "gluten exposure". Tom
  6. Unfortunately I still believe the majority of the doctors out there don't understand the cause/effect of gluten intolerance enough to make a diagnosis based on diet response. That said I for one would like to have known that a diet change was a possibility for my years of symptoms. Even if I might not have gone or stayed on the diet at least I would have known the doctor was thinking it (Celiac) was a possibility. The only way I think real progress will be made as far as early diagnosis and treatment is if more people like yourself prove through diet response that your problem is related to something yhou are eating. I for one applaud anyone who has the knowledge and willpower to give the diet a chance and if successful be satisfied with the results and get on with their life. Whether you spend a lot of money on testing or "figure" it out for yourself the treatment is still the same. Good luck. Tom
  7. Not quite sure what you mean when you say "if you only have one or two of them". Basically there are two genes (DQ2 or DQ8) in which the majority of those with Celiac possess either one or perhaps both. I have only one (DQ2) and I was diagnosed via biopsy. According to the statement on my blood test "greater than 95% of all persons with Celiac have either or both of these genes. By not being 100% I assume this means one may develop this condition with neither. Someone please correct me if this is wrong. Tom
  8. You have pretty much summed up my feelings on the subject. The tests that are available now are effective if the right ones are done and the person is sick enough to show positive. I did not have blood tests prior to postive biopsy but after being on the diet for over a year my levels (blood) were perfectly normal as one might expect after having been 100% gluten free in that time. To me the only reliable test is the diet response. If a person does not respond after a reasonable amount of time I would start to look in another direction. I have yet to read a post where a person had a false positve on "diet response". I would expect the majority of the people who really do have undiagnosed Celiac disease to see improvement in a matter of days. The biggest obstacle I have seen is a person's reluctance to give the diet an honest effort. Most want to rule out everthing else and then as a last resort go gluten-free. So much for my 2 cents.
  9. Note quite sure what it is you are looking for in terms of support. If in fact you do have undiagnosed Celiac/gluten intolerance then the only way your symptoms will subside is that you start and "stay" gluten free from now on. That said if it is mainly a question of willpower and the only way you feel you would be compliant (and your husband supportive) is with a doctor's diagnosis then I guess you should continue to eat gluten and maybe you will be able to obtain one. The one thing I would not advise is to repeatedly start and stop eating gluten while you are trying to get diagnosed. This will only confuse anyone trying to determine what is wrong. If the only way you get relief is when you eliminate gluten (and dairy) from your diet then what does that tell you? Concerning yourself with the social implications of the diet at this point should be the least of your worries. As far as the husband aspect is concerned has he indicated that he would not support you if you had to adopt this diet. The most important thing should be to figure out what is wrong and then address those other issues later. I can appreciate how inconvenient this lifestyle is as I have been doing it for almost 3 years now. I do however appreciate the fact that my "IBS" symptoms are gone and have not returned since going gluten free. That alone for me makes this lifestyle "worth it". Thousands if not millions of people do this every day so you will not be alone. So far you have already succeeded in finding this website and asking for help. Also this website is open worldwide 24/7 so there is a good chance someone is always online to answer questions or offer advice. As far as losing or gaining weight I was only able to gain weight "after" going gluten free and having my gut heal to the point I was absorbing again. Hope this helps and good luck. Tom
  10. I actually got gene testing done on the "back end". I had been on the diet for over a year based on positive biopsy. (There was no need for a blood test because I was so malnourished the doctor went straight to the scope). Anyway in order to see how I was progressing I had the Celiac panel done and while I was at it requested the gene test for myself and my mother. She came from a large family and many of her brothers and sisters are still alive. Both of us had the DQ2 gene. My Celiac panel was "perfect" as one might expect after being gluten-free for over a year. At first her insurance did not want to pay but we persisted saying it was in fact "preventive medicine" in that knowing the gene exists means if symptoms did start the diet could be a first option. The insurance company paid the bill. It can be quite expensive. It is my opinion that if someone suspects Celiac then the most logical approach would be the diet first or gene testing and the diet to see if you are on the right track. Either way you could hold down the cost. If you respond positively to the diet you can either get on with your life or decide at some point to attempt more testing but as you probably already know what's the point if you will ultimately end up on the diet for good anyway. Hope this makes sense and good luck. Tom
  11. Nordstom's Cafe

    Was at the local mall yesterday around lunch time. Wife suggested eating at the cafe in Nordstrom's. I was a little skeptical as it would be my first experience there. I looked at the menu and saw something that looked safe and placed the order without asking any questions from the staff. It was called "Tuscan Chicken" with roasted veggies (potatoes, yellow and red peppers etc.). When the order arrived it looked great and was quite tasty and not that expensive. It must have been fine as I had no reaction. I really don't know how sensitive I am as I've yet to have symptoms eating out. Anyway it was a nice experience and I may ask the manager next time what other choices may exist. Tom
  12. Were your husband's parents "gene" tested or "anti-body" tested or both. Does your husband possess either of the Celiac genes (DQ2 or DQ8)? What I am saying is that either or both parents could possess a gene and never develop symptoms. Because the FIL has symptoms then I would not be surprised if he has at least one of the genes. Whether or not he would test postive for something like anti-bodies could be the result of the "loose" attempt at the diet. That said if he is of the opinion that regardless of "any" testing results he would not accept the diet then I don't know what more you could do. To me going about the diet in anything less than a 100% effort for at least a short period of time is of little or no value at all. In fact doing the diet less than 100% would probably make any diagnosis of Celiac difficult if not impossible. The first thing I would want to know is how "truthful" your FIL would be in the degree of his symptoms and whether or not he seems to get relief when avoiding something like gluten. Denial and/or being stubborn are probably the biggest hurdles any family member can encounter when trying to help a loved one. More than anything else I try to present a positve attitude when talking to family members about my change in lifestyle. If people can see that I have not let this "control" my life then maybe they would be less hesitant to try the diet at the onset of Celiac type symptoms. Hope this helps. Tom
  13. Interesting topic. Education in my opinion provides the best opportunity for early detection and treatment of gluten intolerance/Celiac Disease. Because of the current low diagnosing rate for Celiac a new doctor could see the huge "opportunity" to find as many of the yet un-diagnosed as possible. By doing this through effective screening and testing (for those who have severe symptoms) or even diet response for those in the early stages this doctor could establish a reputation that would last a lifetime. Once patients realize that this doctor really is trying to "cure" them then they would be more likely to go to them for other issues. I know I would. Tom
  14. Here's my 2 cents on this topic. I was thinking of getting an individual policy when my wife retires from her job. We currently have insurance through her company. I used to work for the same company. For over 25 years I used very little in the way of benefits because I did not need to do so. I used the coverage off and on for the year prior to my diagnosis of Celiac in May '05. The most expense was the final testing (double scoping) about a week before I was told I had Celiac. Anyway as best we can tell our coverage did not go up after I went on the diet and recovered. I did however use benefits for some post diagnosis depression. Anyway for the past three years my health has been good and my only medical expenses are yearly physicals and dental checkups. I take no prescription drugs and feel fine. That said if I go to try to get coverage in the future I do not know what I may be facing. I really only want a major medical type policy and are willing to pay out of pocket a high deductable for any visits to the doctor or prescription medicine should the need arise. Except for the time that my pre-Celiac symptoms required me to make a lot of trips to my family doctor I have spent little in the way of time or expense in the medical profession. I do not know how much the insurance profession will hold my brief period of pre/post diagnosis and testing "against" me as far as a future policy is concerned. The point I am trying to make is this. Say for instance someone went undiagnosed for years and the majority of their visits to the doctor/hospital were due to Celiac. We are talking about a lot of money spent not to mention the high probability of a low quality of life during that time. If you saw their medical record would you want to insure that person. It would seem on paper that this person is always ill. On the other hand if you went to your doctor years ago and that person thought maybe you had Celiac and suggested the diet to you and you recovered and had a better quality of life then what do you think your chances would be to get a better policy today. I don't think it should be held against a person if they did not get "effective" service through the medical system prior to their diagnosis. Until the insurance companies get a better understanding of Celiac and methods of effective early detection then I'm afraid we are in for a struggle. For anyone out there who may suspect that they are gluten sensitive/intolerant or Celiac then you need to consider all the options available prior to getting an "official" diagnosis. If you feel that a diagnosis is the only thing that would make you try the diet or be compliant then by all means go for it. If however you think that going on the diet and having it solve your problems would be proof enough then you might be better off in the long run. I know which way I wish I could have gone and it is not the way it went (being malnourished to the point of being "officially" diagnosed). I personally know of someone who was "unofficially" diagnosed by his family doctor 35 years ago and is doing fine. I know it (early detection) is possible but unfortunately is also very rare and not very profitable for the medical profession. Tom
  15. Is All This Really Worth It?

    I think anyone who has had extreme symptoms as the result of Celiac and then once starting the diet and seeing positive results will agree that it is "more than worth it". For me I basically got my life back and it is just a matter of navigating from there. I don't look back at what life was like (good or bad) but rather focus on ways to adjust and hopefully help someone else. I was so grateful to recover that I was more than willing to be as compliant as possible and leave the "poor me" or "why me" to someone else more deserving (think of all those people who have a terminal illness with little or no hope at all). Just the other day I was explaining to a waitress what I could/could not have and she started to feel sorry for me. I had to tell her that there is nothing to be sorry for and together we found something on menu that was ok. The more normal people are around me the more normal I feel. The people I really feel sorry for are the 95-97% undiagnosed Celiacs. They are going through a lot of difficult times and have no idea what is wrong. There is nothing wrong with feeling a sense of sorrow about what has happened in your life but the quicker you can adjust and get on with living gluten-free then the better chance you have a higher quality of life down the road. It (gluten-free awareness and choices) will only get better. Hope this helps. Tom