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par18

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Everything posted by par18

  1. par18
    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...
  2. par18
    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...
  3. par18
    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...
  4. par18
    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...
  5. par18
    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...
  6. par18
    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...
  7. par18
    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...
  8. par18
    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 1...
  9. par18
    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)...
  10. par18
    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...
  11. par18

    ARCHIVED Nordstom's Cafe

    par18 posted a topic in Gluten-Free Restaurants

    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...
  12. par18
    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...
  13. par18
    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...
  14. par18
    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...
  15. par18
    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...
  16. par18

    ARCHIVED October 15 - Cnn

    par18 replied to Lisa's topic in Publications & Publicity

    Just saw the Oct 15th video by Heidi Collins. I thought it was one of the better reports ever given on television. The reason I feel is that the person giving it was an actual "expert" on the subject. She did not waste a lot of time expressing an opinion but pretty much stated the facts regarding symptoms, low diagnosing rate and dining-out issues. If her...
  17. par18
    Hi, Not sure I understand your post. Did you say when your son was "originally" diagnosed. Do you mean he has been diagnosed twice? Also are you saying he has been on the gluten-free diet twice? What happened the first time (3,5 years)? Was he on or off gluten when he appeared to be doing fine? Is your home gluten free ? Tom
  18. par18
    Actually I thought you were too patient. My in-laws really don't try to understand what I can or cannot have so therefore I either take my food with me when I visit or just eat a "safer" meal out. I understand your frustration and it seems as though this situation is usually the rule rather than the exception. If they really want you and your husband to visit...
  19. par18
    Hi, It would be hard for anyone not to worry. If your condition does turn out to be Celiac you can look foward to feeling better once you go on the diet. I'm sure most people were picky at some time or another in their life so you are not alone. The important thing is that awareness is increasing every day and also your choices as far as gluten-free products...
  20. par18
    Great topic. My own personal story was much the same pre Dx. Although I was not working whenever I was out and felt an "episode" coming it was an adventure. I had my share of minor accidents. The last I remember was about a month before my diagnosis. I was fortunate to be playing golf on a course that was surrounded by woods. As you can imagine I spent more...
  21. par18
    Hi, Basically to answer your question, "loose", "floating" and "foul-smelling". You say you are "mostly" gluten-free. If your problem is Celiac I don't think that will get it done. This idea of going mostly gluten-free or "gluten lite" is one of the worst things one can do. It may make diagnosing Celiac (or anything else) impossible. If you choose the...
  22. par18
    Hi, To answer your question as gluten-free as you can. By that I mean 100%. To my knowledge I have not been glutened at all in the over 2 plus years I have been on the diet. Ironically the only thing I really missed in the beginning was beer. I never "tested" myself with the gluten beers after I recovered to see if I had a response. I waited until a gluten...
  23. par18
    This is very impressive news. Apparently Boar's Head understands that those companies who get on board in the beginning are establishing relationships which will last for a long time. Tom
  24. par18
    From the time I went 100% gluten free it took me only 1 1/2 days for my symptoms (bloating,gas,D) to disappear. However since I was so malnourished it took a couple of months for me to heal up enough to gain back some weight and become active again. I never had any accidental glutenings so I had no setbacks. I personally was never told it could be as soon...
  25. par18
    Same here. I "can" participate but not the least bit interested. I feel fine on the diet and don't wish to eat gluten in any form. However good luck to the researchers and all who do wish to participate. Tom
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