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ravenwoodglass

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About ravenwoodglass

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    Advanced Community Member
  • Birthday July 31

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  • Gender
    Female
  • Interests
    Gardening, photograpy, painting and drawing, textile arts, glass art, reading
  • Location
    Upstate NY

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  1. Favorite Hamburger Buns?

    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.
  2. Positive Dx for DH but Dapsone not helping?

    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.
  3. 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.
  4. 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.
  5. ((((((((((((((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))))))))))))) You will be missed. You have been a great help to many. Sorry you got such news.
  6. Good point and at two sometimes even the hair might need a quick wipe down with a damp cloth!
  7. Have you tried putting on gloves when you are cleaning them? My job has me working around other peoples crumbs all day and I have been okay cleaning even the biggest messes. I use a non-latex unpowdered gloves like you would use for medical purposes. It helps me be safe perhaps it would also help you. Another thing you may want to try is giving the kids 'painter smocks' to wear over their regular clothes while they are eating. Then put on your gloves bag them up and have someone else shake them out before you put them in the wash. I hope you can find a solution that works for you. Getting glutened is no fun when you have little ones that need your care.
  8. Itchy skin

    Cool compresses may help a bit. Hot baths or showers used to really aggravate my itchy skin so go with warm or cool ones to see if it helps. Keep well hydrated both inside and out. Be sure to check and make sure any lotions you use are gluten free. Shea butter, olive or coconut oil may help. Since you say this is not DH, no blisters etc. I would not advise Dapsone. It is quite a toxic med but if you do talk to your doctor about it make sure that they do blood work before prescribing and frequently during the time you are on it. Some celiacs have liver impact and Dapsone can be damaging to the liver. I also had both DH and the all over itchies. Being strictly gluten free and avoiding obvious sources of iodine like iodized salt or iodine in supplements will help you heal. I hope you get some relief soon.
  9. It sounds like you have a good doctor. That helps a great deal. It can be difficult if you travel a great deal but if you can get a hotel room with a kitchenette that is helpful When I travel I carry a hot plate with me, a pot, some utensils and a cheap toaster. I do make sure that I put the cooled hotplate away if I am having maid service as some hotels don't want you to have one in the room. That way in a pinch I can just heat up some Dinty Moore canned stew with some toast or whatever I can find at a local grocery. The link Gemini gave you should be quite helpful and I have resorted to just putting my zip code and 'gluten free restaurants' in a search engine and had quite a bit of luck. I do hope you heal quickly but be patient as some issues can take some time. Eat as clean as you can to keep things going as smoothly as possible. It might be a good idea to avoid dairy and soy at first as those are two things that can give us trouble. Not saying that will be the case for you but it is better to avoid them at first and then add them in after you feeling a bit better. That way you can better pinpoint if one or the other is also an issue rather than thinking that you are getting glutened. I kept thinking for a long time that even gluten free packaged foods were 'getting' me and it turned out to be soy protein. That causes a lot of confusion at times. Not to speak of the pain.
  10. Sorry you folks are going through this. Do read the Newbie 101 thread at the top of the Coping section to make sure you are not missing anything that needs to be done to keep him safe. Unfortunately being gluten free involves much more than just picking gluten free foodss. We have to be careful of how food is prepared, have our loved ones brush their teeth before kissing if they eat gluten, check all meds and supplements to be sure they are gluten free and make sure we have our own toasters as just a few examples. I am going to keep my fingers crossed for you both that gluten is simply sneaking in somewhere and that it is not refractory. Welcome and I hope he is feeing much better soon.
  11. The endoscopy is really a pretty easy procedure. You don't have to do the nasty prep that is done with scoping the other end. You go in, they put you to sleep for a very short time and then you go home. If you really don't desire one then talk to your doctor. You have positive blood work and sometimes doctors will give an official diagnosis with that and a resolution of symptoms on the diet. An official diagnosis is important so insurance companies will cover follow up testing like bone scans and repeat panels and vitamin and mineral levels etc. Some folks also have a hard time staying compliant with the diet without one and it makes it easier to get your relatives to take you seriously. Do make sure that you continue to eat gluten until all the testing you choose to do is finished. Then you can get on the diet and begin healing.
  12. Celiac testing is quite specific and conclusive with the exceptuion of the TTG which can, as I understand it, at times be elevated due to other causes. The whole panel does not need to be positive to be celiac. Some folks are only positive on one test. Hopefully your doctor also did a Total IGA as if you are deficient that can cause a false negative. Having elevated liver enzymes at diagnosis is not unusual. Prediagnosis my doctors were convinced I drank heavily, I don't. My liver panels returned to normal after I healed and hopefully yours will also. Please be sure to not drink any alcohol until those panels return to normal. Your doctor may want to do an endoscopy so do stay on gluten until that is done if you are choosing to have one done. I hope you get some answers and are feeling better soon.
  13. EnteroLab Result - I'm back after 7 years!

    While not considered in any way diagnostic by most doctors I think there may be some significance to the Enterolab result. If you feel the need for a doctors diagnosis (and there are really good reasons to get one) you should get to the doctor and get a full celiac panel run. Do make sure that they do the newest tests. Keep in mind that only one of those tests has to be positive to be celiac. Not all the panel needs to be in the positive level. Do stay on gluten until all the testing you choose to do is finished. Just because your previous panel was negative doesn't mean it will be now.
  14. Where is he on the charts in relation to where he was at birth? If he, for example, started out in the 60th percentile and is now in the 10th that would be a concern. It isn't going to hurt to have him screened for celiac with a blood test if he starts to show symptoms or has lost a good bit of ground on the growth chart percentiles. That is going to be more reliable than genetic testing. While rare there are diagnosed celiacs without one of the two main genes and more celiac associated genes are being discovered.
  15. I had to withdraw 3 credit hours short of my degrees (I was in a duel degree program) because of celiac. Not because I had it but because I was undiagnosed at the time. I also thought of going the online route but decided not to because I learn better with interaction and gave myself time to heal before returning to finish up. Your fall semester is still 9 months away so you may want to consider not restricting your choices to only online. There is a good chance by the time you are ready to start you will be feeling much better and be well able to attend regular classes. When I went back to finish up I was a bit nervous about possible glutenings so made sure I was super careful. All went okay and I was able to finish. Chances are you will be able to also. It does take time to heal and to get used to what we need to do to keep safe and that fall semester will have you over a year past diagnosis. You will likely have no problems with attending classes by that time. Have you talked to your advisor? If not you should as the degree you are working toward may require you to do internships or have some classes that are not available on line. Your advisor can guide you on the right route to take.