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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    I wish I had know and been able to get Enterolab testing before I was diagnosed. Even with good insurance we paid over 17 thousand, that's not a typo, 17 grand in copays for tests, canes, braces and drug costs in just the last year before I was diagnosed. Since I am a blood test negative celiac doctors would look at the celiac tests and go 'nope you don't...
  2. ravenwoodglass
    Please get your own dedicated cutting board. Then you have no worries.
  3. ravenwoodglass
    I wouldn't eat them. Not with that response. If they are in the US the label according to FDA regs should read: maltose (wheat) Your doctor can't even tell you if a med he prescribes has gluten let alone a candy!
  4. ravenwoodglass
    I agree also. After you are done with testing get on the diet strictly. Your body may give you the answer before you even get the test results back.
  5. ravenwoodglass
    That's my usual choice also. In addition the store brand ones I get here are so much less expensive, like 69 cents a liter instead of $1.79 or more for sugared soda. I just drink my nice strong coffee in the morning and if I need more caffeine I'll drink another in the early afternoon.
  6. ravenwoodglass
    How long were you gluten free before you started your challenge? It seems your body is giving you the answer since you have been so ill on the challenge. I didn't see any notes on the link that mentioned how long you have to challenge if you have been gluten free before you order the test. I could have missed it though. However with conventional blood tests...
  7. ravenwoodglass
    Yes there are folks that are only gluten free. Not everyone has other intolerances even though it may seem that way. Most of us do have to eliminate dairy at first because the same area that gets damaged by gluten helps us to digest dairy. Many are able to safely add it back in. For now just concentrate on eliminating the gluten then if you are still having...
  8. ravenwoodglass
    I hope they are able to figure it out for you soon. I am also glad you are going to do a trial of the diet. It sure couldn't hurt. Do keep on the gluten until those tests are done. Those middle of the night D sessions are awful, as I too well know. Keep us posted on how your doing.
  9. ravenwoodglass
    The previous poster gave you some good advice. Until you get to your appointment my Mom gave me some good advice growing up that was borne out in the nutrition classes I took as an adult. Your plate at meals should be colorful. For example, a plate with chicken rice and corn is not going to have as many nutrients as a plate with chicken, sweet potatoes...
  10. ravenwoodglass
    I am glad you got those reports. Your post shows why it is so important we do so. I hope you heal quickly.
  11. ravenwoodglass
    Skylark, You are certainly entititled to your opinion. Those of us who have had the tests and acted on those findings are entitleded to ours. Each are opinions. I did not use Enterolab for my celiac diagnosis I took the tests 5 years after diagnosis because my DD had her biopsy and blood positive celiac diagnosis recinded because of a gene test. She now...
  12. ravenwoodglass
    I second everything Mushroom has said and she has said it very well. Please do give the diet a good strict try. Weight wise I am in the second group. I thought I was just gaining weight because of my age, late 40's at diagnosis. I couldn't figure out how I gained so much when I had constant D but I was at my heaviest in my life the year before diagnosis...
  13. ravenwoodglass
    You may want to try Pocono Cream of Buckwheat also. It is grown in dedicated fields, harvested by dedicated equipment and processed in a dedicated facility that is not far from my home.
  14. ravenwoodglass
    Don't feel bad for asking lots of questions. As my Mom used to say the only stupid question is the one not asked. I did an elimination diet. It was for me one of the best things I ever did and lead directly to my finally being diagnosed. If you can find an allergist who will guide you that IMHO is the best way to go. What they will do is test you for...
  15. ravenwoodglass
    Enterolab tests for more than just the 2 generally accepted celiac associated genes. They also test for antibodies in the stool for gluten, casien, egg, soy and yeast as well as testing for fat malabsorption. While some are skeptical of their testing I found them to be very helpful. It helped to explain why my arthritis went into remission on the diet....
  16. ravenwoodglass
    I second that. There is much that is still to be learned about celiac. It is only recently that we have started seeing doctors accepting the relationship between mental illness and celiac, for one example. That adults can develop celiac and that is not just a childhood illness is another. The children don't outgrow celiac is another. I am thankful for Dr...
  17. ravenwoodglass
    I also am very happy that I had Enterolab testing done. I didn't have it done until 5 years after diagnosis. It solved the mystery of why my DD was told she would never be celiac despite her previously positive diagnosis based on positive blood work and biopsy. It turns out I carry two copies of a gene that is not recognized as a celiac associated gene (at...
  18. ravenwoodglass
    Yes it is. My clueless GI after I was diagnosed asked me why I hadn't told him I was waking up nightly with D. I had of course told him but he was so convinced I had IBS that he wasn't listening. I would also have D daily as well, usually right after or even during a meal.
  19. ravenwoodglass
    I was only expecting my constant D to go away. When all the other stuff resolved it felt like a miracle.
  20. ravenwoodglass
    You can also be celiac and test negative. Both need to be just as strict with the diet.
  21. ravenwoodglass
    Dani also look at what may have changed a month ago. Are you on any meds or supplements? Check scripts at each refill. Did you start using a new shampoo or other toiletries or makeup? Do you have a significant other who is a gluten eater? Kisses can CC us. Are you doing remodeling at your home or have you recently started doing arts and crafts? Some items...
  22. ravenwoodglass
    So tell all of us rookies, all you veterans out there, how long did it take you to figure out what was wrong? 40 years How many doctors did you go through? Too many to count including rheumatologist, neurologist, GI's, psychiatrists, dermatologists Ob/GYN etc..... How many tests did you have? Again too many to count, blood tests,...
  23. ravenwoodglass
    Your pharmacist has those numbers and should be calling the Sandoz she can't tell by just looking at the ingredients. If they won't you might want to find a different pharmacey. It is their job to make sure the meds they give you are safe for you. That said here is their phone number as it can take a bit for them to get back to you by email. Also there...
  24. ravenwoodglass
    Since you are doing well on the diet no I wouldn't start the Nexium. There are a lot of us who have gastritis show up on the endoscopy, especially when we have scopes done from both ends and have done a challenge and cleanout. My DD's primary symptoms were GERD and I was told I had this also. I chose not to take the pills and like you was feeling better...
  25. ravenwoodglass
    I have no issue with Pepsi. Can't stand Coke as it was my Mom's remedy for stomach issues so that was the only time I ever drank it. Warm and flat. Caramel coloring is considered safe even if it is derived from gluten ingredients. I do choose to avoid it though in everything but pepsi.
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