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I’m the parent of a nearly 15 year old daughter. 5 years ago we finally found something that made a difference in her pain. A natural doctor did a blood test showing her to be severely gluten intolerant. Regretfully, we did not know to test her for celiac before removing gluten from her diet. Without that diagnosis, many doctors have made us feel gluten intolerance isn’t that serious. Very long story. Anyway, after 5 years of strict gluten avoidance, we were on vacation and let our guard down. Served what we thought was rice, she ate a portion. It ended up being ORZO. Pasta that looks like rice. That night she was dizzy, faint, even developed a fever. She slept most of the next day not eating much at all thinking she was coming down with a cold. Then, severe stomach pain and headache. Then, she threw up everything she ate for a few days. Ready to take her to the ER, we realized it was gluten! Picked up some digestive enzymes, anti-nausea medications, ginger, peppermint, tea, you name it. Today was the first day she could eat proper in a week. Still having some discomfort. Joint pain starting now too. My main question is: Is this typical for just gluten intolerance or does it sound more like celiac? She has been severely vitamin d deficient taking as much as 10,000 iu a day in liquid D and never bringing her levels to normal and menstral cycle never regular although she started at 10. Goes for months without and then when it does come, crazy heavy lasting weeks. Doctor still wasn’t horribly concerned. Just exhausted trying to be our own doctor. Insurance constantly changing making us look for new doctors. I wish I was rich. So expensive and frustrating having to try to get enough bedside time with each new doctor to reexplain her whole journey. Any information appreciated. She was doing much better by strictly avoiding gluten all these years but this last episode has me researching again to do what I can. Again, what do you think? My gut says “Celiac” but I guess we might not ever know for sure.
My son was at a camp this weekend (with me). The camp actually had pretty good procedures for keeping kids with dietary restrictions safe, but one night procedures weren't followed and my son was given some gluteny gravy. He got about 3 or 4 bites down before we figured out what was up. Oops. It's the only time in the last 2 years that I know for sure he has eaten gluten. The next morning he was nauseous, unhappy, exhausted, and felt rotten. I took him home early. He slept for 5 hours straight and woke up with a fever of 101. He didn't eat most of the day, but by dinner seemed to be doing better. His fever was gone this morning, so I sent him back to school today. Before going gluten-free, he didn't have any outward symptoms. He was just anemic. I know that celiacs often get more sensitive to gluten once going gluten-free, but the fever thing seems weird. It also seems too coincidental that this wouldn't be from glutening, given the timing and the fact that he was also nauseous and didn't want to eat all day. Anyone else get a fever from being glutened?
Carri Ninja posted a blog entry in Carri Ninja's BlogSo I heard that propel had some new flavors and have added extra vitamins to help hydrate! Just what every celiac needs - extra hydration - turns out to be not so great for me! I though it could be good. Propel has always been gluten free, and helped with my dehydration issues immensely! I usually get the little flavor packets to carry in my purse just in case. Well I saw the new flavors and I grabbed the new peach one. It tasted a bit funny, so my son drank the rest of it. (I have learned if I don't like the taste don't eat/drink it because it usually means an allergy.) So we were at the store the next day and I grabbed a box of the propel packets. Cherry lime flavored this time. I read the ingredients on the box all seemed to be ok. I mix one packet with 20 oz of water and drink one a day, so it isn't real strong - thankfully. The runny nose and overnight ear/nose/throat infection, severe cramps, feeling like I got hit by a truck, and you know the rest of the usual fun stuff, was my first clue that something was wrong. I got my antibiotic later that afternoon. (continued to drink the propel - still didn't know) Late that evening I was feeling super thirsty and so I made up a bottle. I drank the whole bottle with dinner. BAD! I spiked a fever of 103. My cheeks flushed bright red and the rest of me was ghostly white. My husband asked if I was OK and I said I was having a reaction to something. He got me the usual arsenal of pills along with my antibiotic. The next morning I woke with my body covered in DH. Eczema spots the size of quarters on both elbows. I was really starting to worry. I had eaten different things that only I had prepared, so that amount of contamination was out of the question. I seemed to get a little better, until dinner time. I had prepared dinner and made a bottle of water. About half way through the bottle I realized - oh duh I know right. Anyways I did some reading. All of the ingredients were the same from the previous kind to the new kind EXCEPT for GUM ACADIA / GUM ARABIC !!!!! (same just dif name) I have a severe allergy/intolerance to it come to find out. So I decided to look and see if the not so wonderful peach flavor had it as well. Nope, but even better it has MALTODEXTRIN!! So I suggest to any of you who are propel fans - try with extreme caution. I thought I was being careful, but you just never know! I am still covered in DH and have been for almost a week now. My skin is peeling like I have had a sun burn. I have been showering in baby oil to help. If anyone has any suggestions for home remedies I would love to hear it!! My husband and I are tired of feeling my sandpaper skin. My husband is very supportive, but it hurts him when I pull away. I cannot stand to be touched right now, it is hard to explain that to my 7 yr old. I hug him and hold him anyways, but it is making the peeling worse. Thanks for reading. Suggestions greatly appreciated!!