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ravenwoodglass

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by ravenwoodglass

  1. If your doctor doesn't give you an apology you might want to find a new GP. Do keep eating gluten until all testing related to celiac is finished and then get strictly on the diet. Use the time until your endo, if you are having one, to learn as much as you can about what you need to do to keep safe. The newbie 101 thread at the top of the coping section...
  2. Thanks for the info. It is good to know about the CC issues. I used to drink a hemp milk and never had an issue with it. Don't know what brand it was but found it helpful for added protein. never tried the seeds or powders.
  3. Why not hemp? It is gluten free and a good source of protein. I fully agree about staying away from the others. Some of us do tolerate gluten free oats but it is best not to try them until fully healed.
  4. Have you spoken with the doctor that did the sleeve? I wonder if there may be a problem with either the way that it was done or a complication. You need to be able to eat and it sounds like it is the sleeve that is causing you to not be able to do so. I haven't read the whole thread so forgive me if this thought has already been expressed. Have you...
  5. I get stomach cramps and pain from soy. I usually will use liquid pepto bismal. It helps in just one dose. Pepto does nothing for D for me. You may want to keep a diet and symptom log for a bit. Keep in mind that gluten reactions can be delayed so it might be something that you ate or came into contact with days before you get a reaction. The log can...
  6. Not everyone who carries the genetics for celiac develop celiac. Eating gluten isn't the trigger for celliac to develop usually there is a stressor or illness that then triggers the antibodies to activate. Some with the predisposition never develop celiac so personally I would let the other kids eat gluten outside the home. Making sure that if the kids have...
  7. You could talk to your doctor and see if they will diagnose based on your blood test results and their decrease after 6 months or so gluten free. Some doctors will but many will want you to have the biopsy with a GI. If you do decide to endo then you could ask to be put on a 'cancellation list' if you are able to get in on short notice. That could cut down...
  8. It is good you now have a definate diagnosis and can get busy with the process of healing. I hope things improve quickly.
  9. Take photos of any rashes she gets before you see the derm. That way if there is a wait and the rash clears up you have the photos and copies of her other tests. The derm may be able to arrange it so she can get right in for a biopsy when a rash is active. Perhaps keep a symptom log if you feel that also might help with any doctors.
  10. I feel it could be helpful but only if they test everyone diagnosed with celiac and DH but not using it as part of a diagnosis to the extent that it negates other positive testing.
  11. Welcome. There is a bit more to the gluten free lifestyle than just the food. There is a lot of good info in the Newbie 101 thread at the top of this section. You will need a new toaster, strainers, can't share stuff like jellies or other condiments with gluten eaters and more. Most will be convered in the Newbie 101 thread. It will be helpful with healing...
  12. They had celiac both blood and biopsy confirmed and did well with the diet. Then in young adulthood after years gluten free gene testing was done. She was then told that without the genes the previous diagnosis was wrong. It wasn't.
  13. Your tests are in the negative range and that is great! I don't think anyones ever go down to 0. Looks like you have a good handle on what you need to do to keep yourself safe.
  14. I use Smuckers, Polaner All Fruit and Wegmans store brand. I do sometimes get an off brand or something from the Imported aisle and don't think I have ever encountered a jam or jelly that had a gluten issue.
  15. Yes it could be a very bad thing. It could lead to a life of pain, more AI diseases, and even an early death. Chances are good that after a bit strictly gluten free a bit of gluten accidentally will have you body show you how bad of an idea it is. You can still eat a hamburger it just has to be gluten free. Thankfully gluten free baked goods have improved...
  16. I am an oddball genetically. DQ9, two copies one from each parent. Has your husband had his genes tested? I would wonder if he might have a rarer gene. Not all doctors are up to date with genetic research as far as celiac goes. There are more than just those 2 genes but those two genes are by far the most common. Did the doctor take any biopsies? He...
  17. If you are new to the diet you may also be having trouble digesting dairy. Keep in mind also that gluten reactions can be delayed sometimes even for a couple days. It isn't always something you just ate or even ate that day.
  18. It would be a good idea to ask for a referral to the GI doctor since you did have a positive test result. You don't need to have all tests positive to be celiac. Keep eating gluten until after you see the GI doctor.
  19. I agree you should see your doctor to get checked out. It would be a good idea to have him/her run vitamin and mineral panels including B12. If you are taking any supplements let the doc know. You may need to stop them for a week or two so the panels are accurate. It would also be a good idea to have your celiac panel rerun. Your numbers shouldn't be expected...
  20. I am sorry that you are all having to go through this. I know all too well the neuro issues she is going through. The world seems so hopeless under that gluten cloud. But it does lift. There isn't much a neurologist is going to be able to do except to encourage her to be as strict as possible. It would be a good idea to have your GP or GI do a vitamin and...
  21. I hope you don't have to wait too long for the results. A false negative is always possible since we have a lot of intestine but it sounds like you have a good doctor who took lots of biopsies. Since she had a high positive it would be a good idea for her to do the diet strictly for a few months no matter the results. I hope you get some clear answers and...
  22. A gluten free multi won't hurt but it would be better to call your doctor and get them to give you a lab slip for a vitamin and mineral panel. At the least get your iron levels checked before you supplement as that can be toxic over time in large doses. May not be the case for you but when I went gluten free I started eating a lot more soy. Turns out...
  23. I agree that In people that have celiac there usually is a trigger. It can be physical or emotional stress as the article states. I wonder though if the people they say 'don't have the genes' are folks that simply have rarer ones. There is research on more genes. I discovered it when I was writing a paper for a class. It was a very long time ago in 'computer...
  24. Yes you are correct. Interestingly my genes in the US are thought to be more associated with RA. Which is something they thought I had prediagnosis. In the Middle and far East they are more likely to be associated with celiac and they are rare genes in Caucasians which I am according to my parents known heritage. I always caution folks not to take the gene...
  25. If you want testing for celiac you will have to go back on gluten for 2 to 3 months for the blood test. There is a chance that your biopsy will be positive but if not then a challenge is in order. It would be a good idea to have your son tested also to keep him safe in school etc. He would need to do a challenge also if his ped agrees to test. It sounds...
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