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ravenwoodglass

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About ravenwoodglass

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  • Birthday July 31

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    Female
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    Gardening, photograpy, painting and drawing, textile arts, glass art, reading
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    Upstate NY

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  1. If you haven't had her tested yet please do not go gluten free. Get the celiac testing first as if she does feel better gluten free when she has to go back on gluten for testing she may have much worse symptoms. There will also be a higher risk of false negatives.
  2. If your done with all celiac related testing now you should give the diet a good strict try for at least a couple months.
  3. There is still much to be learned about genetics when it comes to celiac. If you can do bring a peer-reviewed article or two with you when you go back to the doctor for follow-up. Not all doctors are up on the newest research and it may help with your son and others in the diagnosis process. I hope your son heals quickly.
  4. You have a lot of small intestine and damaged places can be missed when biopsies are taken. Also some doctors don't consider biopsies to be positive until the villi is completely destroyed. You have a brother with celiac and you had positive antibody tests. IMHO you should consider yourself celiac and get strictly gluten free. Repeat antibody tests in 6 months or so along with resolution of your symptoms should confirm things for you and your doctor.
  5. Welcome to the board. You can take probiotics whenever you want to whether you are gluten free or not. Have you had testing for celiac done by an MD? If so what were your results? If not it would be a good idea to stay on gluten and get that testing done. As Karen said the gluten item leaves your body in a short time but if you are celiac the antibody reaction can last for up to 3 or 4 weeks in some.
  6. Ulcers were the only GI symptoms one of my children had. Also a weak positive on the test doesn't always mean you don't have celiac. It is IMHO more likely you do. I hope your doctor took more than one biopsy and took them from different spots as damage can be patchy. I also had ulcers at diagnosis and was given PPIs but I chose to wait and see if the diet healed them before taking the pills. It did. Do be sure to give the diet a good strict try after all Celiac related testing is finished.
  7. Welcome to the board. Your celiac testing was pretty much useless since you had been gluten free for 4 months. If you want testing for celliac you need to go back on gluten for a couple months first.
  8. Welcome to the board. It can be important for young ones to have a firm doctor derived diagnosis so they can get the accomodations they will need in school. Since his symptoms are not to severe it would IMHO be best to keep him on gluten until the endo is done. You could cut down his intake if that makes you feel better. You could also talk to his ped and see if the doctor will give a formal diagnosis based on resolution of any symptoms and negative future celiac panels.
  9. DH is usually bi-lateral and it also itches horribly and leaves purplish scars that take a very long time to fade. While your rashes don't sound like DH that doesn't mean they may not be gluten related. I hope you get some answers soon and that you heal quickly.
  10. Welcome to the board. If you had positive blood tests for celiac you have celiac. I don't think they have developed tests for 'gluten sensitivity'. You may find it helpful to read the Newbie thread at the top of the coping page. Lots of good info there.
  11. My vote goes for cloth also. Better for the environment and much less expensive plus so useful for other things when the little one no longer needs them.
  12. So sorry you have gone through so much. Many of us can identify with your post so well. I would suggest you make one more trip to that local doctor to say goodbye after you have been gluten free for a few months and your lesions have healed. Do be sure to lower or eliminate iodine for a bit as that can keep the antibodies active. Some have to avoid all iodine from foods but I only had to drop iodized salt. Do add it back in after you have healed as it is an important nutrient. Also make sure you have eliminated gluten from your topical products. Gluten cannot enter the bloodstream through intact skin but yours is far from intact at this point. I hope you have found the answer and that you heal quickly.
  13. Thanks for posting I was just looking at this a short time ago. Something I found interesting was the last line of the article- " The psychosis that the woman experienced was an extreme condition and very unique, Fasano said. " While not common I am not sure that it is that unique. There is a fair amount of research that has been done on the effects of gluten on the brains and nervous systems of celiacs. Doing a search with the words neurological and celiac at places like Lancet, PubMed and the NIH can bring up some really interesting studies. Thankfully this impact is slowly becoming more common knowledge in the medical circles. Many of us have experienced in our families or first hand the way that the antibodies can impact our mood and thinking. It does seem miraculous when the clouds finally lift. I wish more doctors would test for celiac before pulling out the prescription pad, especially with kids.
  14. So sorry this happened to your son. Kids at that age can be cruel and it is hard to be different. While not ideal you could try sending him in with prepackaged food that can be held in his hand as he eats. A granola bar, string cheese, fruit cups, chips, drink boxes etc that sort of thing. If all items are packaged then he would know if the item had been tampered with and he might feel more safe.
  15. Have you considered switching him to an hypoallergenic formula since he is reacting to foods you are eating? Then you could start introducing low risk foods to him one at a time when he is ready for solids. For example when he is ready for cereal try cream of buckwheat rather than the more common baby cerealss and whole foods like mashed fruit rather than premade. Introduce items one at a time for a week to watch for any reactions before adding anything else new.