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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

ravenwoodglass

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  1. 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 mineral panel if that hasn't already been done. We do sometimes need supplementation while healing as some nutrients do have an impact on the nervous system function. What I find helps me the most is knowing that it is the gluten and it will pass. It is a horrible feeling when it is happening and is hard on ones loved ones. All you really can do to help her is to remind her that it is the gluten that is making her feel so bad. Try to provide distractions and understanding. If you haven't already do read the Newbie 101 thread at the top of the Coping section it has a lot of good info for you. These episodes will come less often as accidental glutenings become less frequent. Ask any questions you need and feel free to vent on the tough days.
  2. 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 that she is feeling better soon.
  3. 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 I am sensitive to it and it gives me issues similiar to yours. Some of us do have issues with other foods. Dairy, soy and corn are pretty common. If you consume any you could try eliminating them and see if things improve. If when you add them back into your diet your symptoms return then drop them again until you have been very well healed.
  4. 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 age' and my bookmarks died along with the computer I was useing. But it is out there on peer reviewed sites like Lancet, NIH etc. Since celiac was rarely tested for even a couple decades ago there are many folks that may have celiac in their family but it was never known. That was the case in my family. I am confident about that. I always wondered why my Mom seldom left the house, spent a lot of time in the bathroom, was tired all the time and was always holding her hands the way she did. Then I became her. We have so much to learn about celiac. Personally I dislike the term 'NCGS' because it makes folks think at times they don't need to be as strict and it isn't as serious. Too many are told that their biopsies are negative and they then get the NCGS label if they had positive bloods. I consider celiac to be a spectrum disorder. Not all celiacs have gut impact or at least haven't developed it yet. I had the neuro impact and DH from shortly after I was impaled as a young child. It was many years before any severe GI issues arose.
  5. 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 tests as absolute proof they can't have celiac because I had one child who had positive blood and biopsy, did well on the diet, then got genes tested in young adulthood and was told they could never be celiac. Of course that resulted in her abandoning the diet. I worry but hope someday doctors will realise we still have a lot to learn about the genetics of this disease. PS While I still have some deformity in my hands my joint pain resolved after a few months on the diet.
  6. 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 like the wooden items your father made have great sentimental value. Perhaps you could clean them very well and then give them a sanding. That might make them safe for use.
  7. Don't beat yourself up about it. The company may have changed suppliers or it may be put together in a different plant than previously. I hope they didn't CC you but if you have had some mystery glutenings at least you may have discovered the cause.
  8. Good advice from Ennis. My doctor (allergist MD) had me eliminate gluten, and a whole lot of other things, and said to continue with my elimination diet until symptoms improved. When you add gluten back in try to do it in a form that is a 'pure' as possible. I used Cream of Wheat and Triscuits and though it took 3 days for a severe reaction to happen it did. He said to add it back in for a week or until I reacted. After I reacted he sent me to a GI who confirmed celiac. My diagnosis was before the newer tests came along and I also showed a false negative with blood testing.
  9. I would add your pharmacist to that that list and double check when getting a script filled that they checked to make sure it is safe. You will also need to tell any romatic partners as if they are gluten consumers they should brush their teeth before any kissing.
  10. What you all are going through is normal. It took a long time for celiac to progress to the point where you were diagnosed and it takes time for the antibodies to resolve and for you to return to full health but you will. Eat as many whole foods as you can, stay away from oats and limit or delete dairy until you have healed for a while longer. Some of us will react to even gluten free oats so wait until you have been symptomless to try them out. Sublingual B12 may help you heal a bit faster and do take a good gluten free vitamin. Be careful of the 'whole foods' vitamins as some will have barley or wheat grass in them. Eventually you will recognize when you get hit by CC, in my case I get a shift like I am falling sideways and an almost instant change in mood for the worse but it took a while to realize that was what was happening. If you take any prescription meds do make sure that your pharmacist knows you are celiac and that they are checking all meds prescribed. If you haven't already do read the Newbie 101 thread at the top of the Coping section as it will have a lot of good information to keep you safe. Welcome to you all and I hope you heal quickly.
  11. If she was just tested for DQ2 or DQ8 then it isn't for sure that she will never develop celiac. There are other genes that have been found to be associated but not all doctors are aware. The gene I have a double copy of, DQ9, is one example. Here is one research article but more can be found for those interested. Evidence that HLA-DQ9 confers risk to celiac disease by presence of DQ9-restricted gluten-specific T cells http://www.sciencedirect.com/science/article/pii/S0198885912000262
  12. I had horrific leg pains when celiac first reared its ugly head in my childhood. My Mom used to try warm compresses but I don''t remember them helping. Don't know if they were from vitamin deficiencies or not but I had them off and on throughout childhood. I would get cramps in adulthood almost anywhere. My back was the worst. The cramping did resolve gluten free. Don't know if that will be the case for your daughter though. One last thought I know many places are having a very warm summer. Dehydration can also cause muscle cramps so if your dealing with a lot of heat make sure she is well hydrated. I hope she is feeling much better soon. Do get a full panel done on yourself and all first degree relatives. Testing is advised even if folks don't seem to have symptoms.
  13. I like Bakery on Mains granolas, the ones that are oat free. They have a fair amount of protein as they have nuts in them. I also have Cream of Buckwheat if I want a hot cereal or if my tummy is off. It's has a good amount of protein and is really easy to digest. I definately don't eat the cereals like Cheerios etc that have regular oats that are mechanically sorted. They may be fine but my reactions to even small amounts of CC is too severe to risk it.
  14. You could try talking to your Ped and seeing if he/she will diagnose based on a decrease in antibodies gluten free. His blood work is very positive so there really is no doubt he is celiac but you need the 'official' diagnosis to keep him safe in school. There is some research showing that biopsy is not needed in children when blood results are so clearly positive.
  15. Be strict if you are going to do it. It sounds like your body is clearly reacting to gluten so don't take any chances. Take the same precautions you would if you were officially diagnosed at least for a few months. You want to give your body a chance to heal and it sounds like your reactions to accidental gluten are pretty strong so don't risk any CC setting you back from healing.