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About WW340

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  1. WW340

    Celiac Roommate

    I think I would just say something like "hey, I notice you are not on the gluten free diet right now, so can we relax the rules at home for now?" Or, "now that you are taking a break from the diet, I am going to relax the rules at home. Just let me know when you want to go back to a safer kitchen." Or something similar. The point being, let him know you are aware and not judging, but would like a break while he takes his break.
  2. It means you have had Mono at some point in your life, but not recently. Here is some information about it. http://www.cdc.gov/ncidod/diseases/ebv.htm IgM to the viral capsid antigen appears early in infection and disappears within 4 to 6 weeks. IgG to the viral capsid antigen appears in the acute phase, peaks at 2 to 4 weeks after onset, declines slightly, and then persists for life. IgG to the early antigen appears in the acute phase and generally falls to undetectable levels after 3 to 6 months. In many people, detection of antibody to the early antigen is a sign of active infection, but 20% of healthy people may have this antibody for years.
  3. WW340

    Still Bed-Wetting At 8 Yrs Old

    My son had this problem. He does have celiac, and it does run in families, but I do not know of any celiac relationship. The pad and bell worked wonderfully for us. It was like a magic cure. You have to work with the program by getting up with the child and washing their face and completely waking them up, but after several times, they get it and start controlling their bladder. http://bedwettingstore.com/Buyers_Guides/buyers_guide_alarms_bellandpad.html we got ours at sears, but this is the concept.
  4. I would have a really adamant response to this situation. Your daughter has been diagnosed with a chronic condition which requires a specific treatment as given by her doctor. If her treatment is not carried out by all involved with her, she can face life long repercussions, with vitamin deficiencies, week teeth and bones, just to name a few. Failure to keep her safe on her diet is considered medical negligence. Children can be removed from the home for medical negligence. Children are removed for failing to provide proper diets for obese children or diabetic children regularly. I would explain this to my husband and his family. I would tell them they cannot feed my child in an inappropriate manner EVER again. The grandparents rights would be terminated by me if they violated the rule ever again. I would tell them that the child will be retested at some point in the future and must show that she is being kept on a gluten free diet, whether they see the effects or not, the tests will. These people will never take this seriously until you seriously enforce the rules. I would tell them all that I would never risk my child's health because they don't get it. They need to get with the program and now. Would they really keep feeding a diabetic child sugar? You don't see the effects of that right away either. This is not about the Mother's wishes. This is an absolute and must be treated as such. Like any form of abuse, this cannot be tolerated.
  5. WW340

    Whole Foods Salad Buffet

    I really try to avoid buffets. Even at our large family gatherings, we have all the celiacs get their food first to avoid getting contaminated food. And that is with a large group of people trying to keep from contaminating the line, yet it is easy for them to make a mistake. I always try to order the most likely to be safe item I can find on the menu and then question the server and give necessary instructions. I always order my salad with dressing on the side. That way, I can inspect and make sure there are no croutons hiding there.
  6. My original numbers were very high. My GI said he would not be retesting those in the first year because they could fluctuate for a while and I would likely get frustrated. It was actually longer than that before I was retested, because I didn't feel the need. I know I am staying as gluten free as possible. You might look at how many gluten-free prepared foods you are consuming. There is enough cross contamination in the gluten-free products, that I will react if I eat very much. The level of acceptable gluten is not zero, so the more prepared products you consume, the more low level gluten you are consuming as well.
  7. I have experienced this as well. I think there may be a physiologic explanation for this. I think it is possible that the body is trying to make up for lost nutrients. I think I was starving myself for so long by not absorbing, that my body is trying to prepare for the next famine, or replete what has been lost. My appetite stays in overdrive. There is also an emotional component, however, I think it is more a fear of being in a situation of being hungry, and not being able to find something to eat. So I eat before I go somewhere, even if I am not hungry. I will call it opportunistic eating. I eat when I have the opportunity, because I am afraid I might not find food later. I also ate a lot of gluten free cakes, brownies, pizza, etc., that I would not normally eat, just in experimenting to find what was available and to make sure I was covered if I ever wanted those things, lol. I treat myself to junk food more than I should, probably to reward the child inside that is still pouting about feeling deprived.
  8. WW340

    Why Am I So Hungry?

    Being hungry is not uncommon when starting the gluten-free diet. You need to increase your protein to help with the hunger. If you can tolerate eggs, this is a good protein choice. If not, increase meat, chicken, nut butters and cheese if tolerated. The hunger will subside.
  9. My vitamin D level was 17. I was prescribed drisdol 50,000 IU 2 x week for several months. My levels went up to the 60's. I was told to take vit. D 3 5000 IU per day. I have dropped back down to 39, so I suspect I will have to go back to the prescription med., since I have osteoporosis and they are trying to optimize my vitamin d while I am on forteo.
  10. I am not sure why people that have celiac disease or gluten intolerance feel the need to produce proof to friends and family. I was "classically" diagnosed, however, I have never shown any family member or friend my results. It never occured to me that maybe someone would not believe that I had it. How many people with various food allergies are expected to present proof of such allergy? Lactose intolerance is most frequently diagnosed by elimination, yet, I don't see people really concerned about whether or not someone will believe they are lactose intolerant. You were sick. You have been tested by elimination. You feel better on the diet, and your symptoms are improved or resolved on the diet. Case closed! If you treat this very matter-of-factly, they will get it. There may be some initial confusion about what the disease is and what it entails, but you can help them understand that by providing information about the disease. I really think some folks misinterpret lack of knowledge about the disease with not believing you have it. I know lots of people find it pretty unbelievable that there are people in this world that cannot eat wheat. I simply educate those people.
  11. I had scalloping on biopsy, and it was celiac. There is a high prevalence of celiac disease in crohn's disease. They recently found the genes have a relationship. Here is a link. Celiac and Crohn's genetic link When my doctor tested me for celiac, he also tested me for crohn's. I have the genes for both, but I do not have active crohn's.
  12. You might still see a GI doctor. There is a disease called Eosinophilic Gastroenteritis that can show increased eosinophils in the blood. This can also be gluten related. It is rare, but does occur.
  13. It is not unusual to feel hungry on the gluten-free diet initially. To counter act that and any hypoglycemia you need to add more protein to the diet. The hunger will go away once your body adjusts. In the meantime you need loads more protein for the body to feel satisfied. Eat more frequently throughout the day and add which ever of the following you and your family can tolerate - eggs, cheese, peanut or other nut butter, nuts, tuna, meat for between meal snacks. I would concentrate first on what you and the kids are eating at home, and get the gluten-free routine at home down, then work on the kids diet outside the home. It will all get easier as time goes on. You need to be feeling better before you take on too much.
  14. Yes, the multiple concussions can impair cognitive function. This is usually a short term problem, as in post-concussive syndrome, or long term effects that are currently being studied. I also had very low blood pressure most of my life. I had occasional episodes of passing out. It was not unusual for me to have a bp of 60/40 and feel completely normal. I was denied surgery more than once due to low blood pressure. You may need to go on a nasal(nascobal) form of B12 or injections to get your levels up. I required that for about a year. Working on getting your vitamin levels optimal may go a long way toward making you feel better. Many of us have ongoing medical issues due to long standing Celiac. The gluten free diet helps many things, but some damage may remain.
  15. Dr. Donovan is the only peds GI in Tulsa. What kinds of problems are you having? What are you needing? Monitoring, diet advice?