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ravenwoodglass

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Latest Celiac Disease News & Research:

Everything posted by ravenwoodglass

  1. ravenwoodglass
    Please be aware that if you have been gluten free your tests will come out negative for celiac. I hope if you are having blood work you have not been gluten free for long. If you have been gluten-free for more than a day or two you need to get right back on gluten for a bit before testing. Even on a full gluten diet you could still have false negative tests...
  2. ravenwoodglass
    It may also make a believer out of her Dad. Holiday meals are not hard to do gluten free. Turkey or ham, sweet and mashed potatoes, veggies, fruits and salads are all easy to do gluten free. If you need some recipe or menu suggestions check out the recipe section of the forum or just ask. Hopefully she will be feeling better soon.
  3. ravenwoodglass
    Since we do have celiacs without one of those 2 genes, I am one of them, you really need to just trial the diet if all celiac related testing is done. Maybe it might help your DH to understand if he comes here and reads a bit and asks some questions.
  4. ravenwoodglass
    Have you checked to make sure those vitamins are gluten free? Supplements can be labeled gluten-free and still have wheat and barley grass (which you don't want). Also check with the maker on all OTC drugs and scripts. To help with CC without expense toast your gluten-free breads on foil in the oven or toaster oven and strain your gluten-free pastas using...
  5. ravenwoodglass
    An endocrinologist can tell you if he has a GH deficiency without him having to go back on gluten. If his growth related problems are due to celiac he should catch up.
  6. ravenwoodglass
    I don't know if they are safe or not as I haven't checked but do be aware that if you are new to the diet we do have ups and downs at first. Also when we react it isn't always to the last thing we ate as reactions can be delayed by as long as 3 days to a week.
  7. ravenwoodglass
    Ener-g was the only one around when I was diagnosed. It is like eating styrofoam. I used to send it in sandwiches with my DD for her lunch at school. The poor thing I didn't know that almost all gluten-free bread needed to be toasted or zapped to be edible and keep it from crumbling. She was very happy when I learned to make gluten-free bagels and sent those...
  8. ravenwoodglass
    The use of the word vaccine is a bit of a misnomer. This isn't intended for folks that don't have celiac already it is a treatment to allow diagnosed folks to resume a regular gluten filled diet. As with others I am a bit leary of big Pharma. I was given pennicyln so much as a child that I now have a life threatening reaction to it. I was also given a...
  9. ravenwoodglass
    Unless there is new research showing otherwise it is my understanding the celiac associated genes are neither.
  10. ravenwoodglass
    You should be able to find it in the baking aisle. The one we have used came in a cylinder shaped package. Don't remember the name of it though. I think almond paste is just almonds ground up so should be gluten free as long as nothing has been added to it.
  11. ravenwoodglass
    What tests did your GI do? Did he do both a full panel with a total IGA as well as an endo? Even if he did them you could have still had a false negative. You have two choices. Go back to the GI or go to your regular doctor and ask for the blood tests to be repeated as things can change in a year. Or try the diet strictly for a few months to see if it helps...
  12. ravenwoodglass
    One recipe coming up: Bridget Healey's Gluten Free Almond Paste Cookies 1 lb. almond paste (grated fine) 3 to 4 egg whites 1tbsp brown rice flour 2 cups confectioners sugar crushed almonds or confectioners sugar Preheat oven to 325 degrees. Grate paste then add egg whites and beat until smooth. Next add flour and sugar and mix. Refrigerate dough...
  13. ravenwoodglass
    My city newspaper does a cookie contest every year and this years winner is a gluten free cookie made from almond paste. Beat out a whole bunch of wheat based ones too. The girl who made them isn't even gluten free but her father and brother are. Definately brightened my dreary day to read about it as it is nice to see non-gluten free folks realizing that...
  14. ravenwoodglass
    One other thing to keep in mind as far as the genes go is that not all diagnosed celiacs are gene tested. I think that the number of folks diagnosed without the commonly associated genes would be a higher percentage if they did. I do wish more doctors knew that the gene test is not the be all and end all of diagnosis. Your plan to keep him gluten free...
  15. ravenwoodglass
    Like they would be with RA.
  16. ravenwoodglass
    It is quite possible to have celiac and not have one of the two most commonly associated genes. If your son and husband are doing well on the diet just keep it up.
  17. ravenwoodglass
    In my own case the answer is yes. I still have nerve damage, although I have come a long way from where I was at diagnosis. I also have deformed hands but they now function normally and are painfree off gluten but they do look a bit nasty.
  18. ravenwoodglass
    If they haven't done a celiac panel on you call the doc and request it. If you have already had the panel done then go ahead and go gluten free. Labs can misread the biopsies and there are other reasons why you might have a false negative on both the blood test and biopsy so the diet trial is needed no matter what the results. Some of us get a lot of relief...
  19. ravenwoodglass
    There are homeless all over but they may not be real obvious. While some do have substance abuse or mental health issues the fastest growing population in homelessness is now famlies and single women and children. In some cases the state can help them find housing or some will stay with relatives or freinds or live in their cars. We also are seeing a lot...
  20. ravenwoodglass
    I hope you day improved. The people here are a great group. If there is anything we can help with just ask.
  21. ravenwoodglass
    Thank you. Hopefully things will never get that bad. This board is so full of so many great people. I do remember one time when someone was really struggling and it was heartwarming to see how many offered to help.
  22. ravenwoodglass
    (((((((((((((((((((((((hugs))))))))))))))))))))))) And vice versa.
  23. ravenwoodglass
    I have to agree with this. Many of the folks who visit the food bank I voluteer at virtually ignore the issues they do have or don't understand them. Diabetes is the one I see the most. We get a lot of baked goods donated and even when we try to give folks diabetes freindly foods they still request lots of sweet baked goods. I have had folks that come in...
  24. ravenwoodglass
    Good plan but do keep an eye on those levels. Be aware that if you are supplementing folate that can cause a falsely high reading on the B12. After you have been on the break from both for a couple months or so have your doctor check you levels again.
  25. ravenwoodglass
    OP Did your doctor do a spinal tap? If not don't accept the MS diagnosis. The lesions with gluten ataxia are very much like the lesions of MS but they don't produce the debris that is found in the spinal fluid of MS patients. While many think of ataxia when they think of balance issues it can affect speech, cognition, and many other brain and nerve related...
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