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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. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. Thank you for letting us know this sad news. She was always ready to lend a kind ear and comfort to those here that needed it. She has been and will continue to be missed.
  10. It doesn't take years for everyone to have DH clear up without meds. I stopped getting new lesions within a couple weeks gluten free although it did take a bit longer for the lesions I had to clear completely. For a couple years if I got glutened new lesions would show up within hours but they healed faster than prediagnosis. After a couple years DH would become my last symptom to appear after a glutening rather than the first and now on the rare times I am glutened I only get a couple little spots that clear quickly. I did drop iodized salt and found I had to be very strict with both the diet and topical products but I did heal without the aid of pharmacutical intervention. Don't be afraid to try healing with just being strict about the gluten free lifestyle. While the antibodies remain for a long time in the skin not everyone will have active lesions for that entire time.
  11. I've only tried a couple buns and wasn't real happy with them. Not awful but both kinds fell apart. Then I found the 'Against the Grain' baguettes. Those work very well for me. They have a nice crust that holds together and reminds me of a good Italian bread. Make a real good cheeseburger sub.
  12. You have only been gluten free for a couple of weeks and it can take some time for DH to heal. Make sure to check your topicals for gluten ingredients. Gluten can't be absorbed through intact skin but your skin is not intact and gluten ingredients in shampoos lotions etc. could be a problem. Also be sure to read the Newbie 101 thread at the top of the coping page to make sure you are doing everything you need to do to keep safe. Many with DH find that avoiding iodine for a while helps us heal faster. I just avoided iodized salt for a while but some also avoid high iodine foods like shellfish too. I have taken a short course of prednisone for DH before diagnosis. In my case a decreasing 10 day dose would give me relief for a couple months before it would return. Since I was still eating gluten DH would of course come back. I don't know if a short course would give you relief while the antibodies clear or not. I do hope your doctor ran liver panels on you before prescribing the Dapsone and that he continues to monitor those levels frequently while you are on it. It can be quite toxic to the liver and some celiacs have liver impact from the celiac. I hope you heal quickly. I know DH can be hell on earth.
  13. You had symptoms and blood tests showed high antibodies. You went gluten free and saw a resolution of symptoms and your antibodies went down. You then did a gluten challenge which you say was hard. I take that to mean your body reacted. You have your answer. What you need to do is to remain gluten free. As some folks have already stated it is possible to have celiac and not have one of the two most common genes. I know that from personal experience as I am one of the oddballs. I have a double DQ9 and was firmly diagnosed celiac. We are learning more everyday about the genes that are associated with celiac and that there seem to be quite a few more than those two most common ones.
  14. Welcome to the board Justin. It does seem like you are in the right place. If I read it right it sounds like you were gluten free except for a couple slip ups when you had your blood tests. If that is the case then the tests would not be valid. You have to be eating gluten for any celiac related testing to be accurate. If you are going to have the biopsies done you need to go back to eating gluten. You don't have to eat a lot of it just a couple slices of bread a day or the equivalent. I know that you really don't want to hear that but it has to be done for an official diagnosis. You do have the choice of just staying gluten free but if you can get diagnosed that is best.
  15. ((((((((((((((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))))))))))))) You will be missed. You have been a great help to many. Sorry you got such news.