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ravenwoodglass

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

Everything posted by ravenwoodglass

  1. ravenwoodglass
    Thanks so much for posting these. I will be picking up the at least a couple of these for myself and my DS. The one on Aspergers and the Arts will be quite valuable for us. My DS is very gifted but he still struggles a great deal. The diet helps an unbelievable amount but as you know it is not a 'cure'. Although some things can be a real struggle, especially...
  2. ravenwoodglass
    You IMHO have already been diagnosed in the most accurate way possible. You did a gluten free diet and got relief, you then added gluten back in and have had a reaction. That is a valid way of diagnosing but of course the doctors don't make any money off of that. It is called a gluten challenge by allergists and it was the way I was finally diagnosed after...
  3. ravenwoodglass
    So many of us have dealt with the 'get more fiber' advice, it seems we all reach for that high fiber cereal. For me it was shredded wheat and triscuts. I am always surprised that our medical folks don't let people know that there is more to the world of fiber than cereals grains. I find getting some extra fruits and veggies to be much more helpful. Just...
  4. ravenwoodglass
    Did you ever have high cholesterol- Unknown high blood pressure- Yes although now it is down gluten-free but still not as low as my normal preceliac presentation pitting edema - My edema was widespread but most severe in my abdomen (went from a pants size 12 to a 2 within a month gluten-free), hands and feet. It was not what they call pitting...
  5. ravenwoodglass
    Thanks for posting this, there are preps available that are gluten-free but you do have to be specific and ask for one. Another heads up is for folks that have DH. Make very sure they know you have DH before you allow them to inject you with contrast for any test. Someone with DH can have severe reactions to the injectable contrast they use. I don't know...
  6. ravenwoodglass
    Please do let us know how everything goes, most folks get through the procedure with no problems at all and you will have many here adding positive thoughts and prayers for your son and family. It is so hard to have a young one who is ill, many of us have been there. We always worry when our children are under anesthesia, my DD went through 5 ear surgerys...
  7. ravenwoodglass
    Dark Urine can be a sign of dehydration as mentioned. However depending on your bodies choice of organs to impact the kidneys can be effected. You should have your doctor do a urinalysis to be on the safe side. My kidneys were effected by celiac, when glutened they bleed which can darken the urine. I also throw protein due to damage to the kidneys letting...
  8. ravenwoodglass
    I would get the complete records of the procedure from the doctors office including the list of drugs that they gave you. This does not sound like a reaction from the anethesia because of the chills and fever but it will set your mind at ease if you have moe than just your doctor saying it so do take those records to another GI doctor and tell them about...
  9. ravenwoodglass
    You need to start thinking about what you are eating before you get hungrey so you are not tempted to make bad choices. It takes very little time to throw a couple pieces of fruit in a bag or to grab a baggie and put in nuts, gluten-free pretzels, dried fruits and seeds in a baggie to toss in your purse so you are not tempted to grab a candy bar. And if...
  10. ravenwoodglass
    Well I don't know this persons endocrinologist but I know myself. I am one of those celiacs who don't show up in blood work, at least in the old blood work I haven't been tested since they came up with the TtG test and would never consider going back to gluten to see. I was diagnosed diabetic when I was in the full effects of a glutening and had gone to...
  11. ravenwoodglass
    I agree totally about with Fiddle Faddle on this one. Personally I would put him on the diet strictly for 6 months and then if I saw no improvement I would reconsider. You have mentioned, I think, that you plan on putting him on the diet no matter what the results of the test show. IMHO you should do the diet first then scope if needed. If you do decide...
  12. ravenwoodglass
    Now that our wonderful government has decided how much poison is safe for us Rice Dreams can legally take the barley warning off the box and replace it with Gluten Free. They did not change the formula just the carton. And yes this is because our government has now defined gluten free as TESTING below a certain level. They are able to show that each serving...
  13. ravenwoodglass
    Yes any race can have celiac. Although the genes that cause celiac in peoples that do not consume large amounts of gluten will often present with different diseases unless those peoples 'Westernize' their diets. Researching my oddball gluten sensitivity gene for example revealed that in Japan my gene is considered to be linked to a rare form of diabetes...
  14. ravenwoodglass
    An A1C is a measure of your blood sugar averages over about a two month period. Something you may want to do is to check out info on what normal sugars are, fasting and after meals. I found the testing process to be pretty easy once I got used to it. If you wash your hands with real warm water first it helps to get a good sample with a minimum depth. ...
  15. ravenwoodglass
    Would there be a suitable rehab unit closer to you? Or even between the locations? That might enable your family to be there to oversee his care and lift his spirits. Rehab can be very beneficial to people and may be the medically needed next step in his recovery. Also if the rehab unit is close enough your husbands active participation in his brothers...
  16. ravenwoodglass
    If you have an actual allergy in addition to the celiac benadryl (a for sure gluten-free brand) would help with the histamine part of the reaction. It would not help with the symptoms that are coming from the intolerance aspect but it would help with the allergy effects. Histamines also make most people sleepy, if you like many of us get a 'speed' effect...
  17. ravenwoodglass
    I actually find avoiding soy much easier than casein. It at least is clear on a label. Don't think that something that is nondairy is safe, I have found out the hard way that is not the case. Casien can hide just like gluten does and if you are also avoiding soy watch out for it in Rice Cheeses and such. Something I have noticed is that if it says Dairy...
  18. ravenwoodglass
    Doll there really is no doubt that I am celiac/gluten intolerant. For one thing I have had DH since childhood when it was misdiagnosed as poison ivy. Of course the doctors couldn't answer why I had it all year long even with snow on the ground. Also my DS is not the natural son of my DH, although I suspect his natural father may have been celiac also....
  19. ravenwoodglass
    It sounds like he is going to go to the place he needs to be. You are in for a lot of work and extra stress but it sounds like you can handle it. I think it will be good for him to be able to be around the kids, they can make the world much brighter - when they aren't tearing it apart. Please be sure to get some respite care set up so you and your husband...
  20. ravenwoodglass
    I actually am officially diagnosed as a celiac, no doubt about it in anyones mind. My son and I could have been poster children for the disease. I developed severe GI problems again after an allergic reaction to a drug and when they had not resolved I had testing done for other intolerances and while I was at it I had the gene test. I had the gene test...
  21. ravenwoodglass
    I agree totally with Doll on this one. You most likely got CC from the deli salsa. There are a lot of premade salsas that are safe or it is really easy to make up fresh yourself. Doll, McCormicks Chili Powder is safe, any of their spices that have just the spice names on the label are safe. The packages of stuff like Taco Seasoning Mixes do need to...
  22. ravenwoodglass
    I can't agree that gluten sensitivity does not result in autoimmune attack. I am living proof that it can in some people. It did take years of damage to my joints and brain before the GI problems arose, so that may be a difference between the two. In other words the systems that are most severely impacted may be different with sensitivity rather than geneticly...
  23. ravenwoodglass
    Hi and welcome to the board. It is very hard to say if your pain is celiac related or not. The damage from celiac can be varied and it can effect different folks differently. You should make sure you keep eating gluen until the tests are finished and make sure the GI takes lots of biopsies during the endo. While you are waiting for your test day spend...
  24. ravenwoodglass
    I am of the genetic difference not disease frame of mind myself. If we are not consuming gluten we are not diseased. I know many won't agree but I have felt that way ever since I was diagnosed.
  25. ravenwoodglass
    Well that may be what your body is attempting but how successful it is is questionable. Most of my family members had C, sometimes really severe, for a long time before the D set in. If what your dietian was saying was true then my DS should be normal height and he should not have had the sores on his lips that signaled vitamin deficiencies. Just because...
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