Jump to content
  • Sign Up


Advanced Members
  • Content Count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About Karwei5

  • Rank
    Star Contributor

Profile Information

  • Gender
  • Location
    Peru IL

Contact Methods

  • Yahoo
  1. He is eating eggs over easy bagel cream cheese I thought it was the eggs of the amount of caffeine or greasy he drinks but if he eats later he is ok It is a bit of problem with him having to get to school on time I hate to give him cereal for breakfast as that won't stick with you long and he would be hungry again before lunch He likes if I make him a "skillet" Fried potatoes beacon or sausage cheese green pepper and eggs on top. If he eats later he is ok. I am wondering what to do about school and long term with not eating earlier in the am. Karol
  2. My son was diagnosed a year and half ago. We have had our ups and downs with keeping his food gluten free. He has Down syndrome and has to rely on others to read labels (he is 20 years old now) Basically it is me(mom) Dad and his teacher that are responsible for his food. This spring his Dad gave him beef sticks with gluten and he was getting rice crispies at school. Got that all straightened out. Our problem is that he keep throwing up his breakfast. It is only when he has to get up early and off to school If he eats the same foods later in the morning or in the day he is ok. I got him up for an activity this am had to be there at 8 am and the got sick on his breakfast. He was doing well the last several weeks after being out of school The last few months of school we were having problems with this. Can there actually be a specific problem with eating too early in the morning? He gets pain and throws up but only about 1/3 of what he ate. This is getting very frustrating for both of us. ALSO do you see a dietitian is it really worth the time. I saw a local one 1 time and didn't learn much If I drove a lot farther I could see a better one. Is it worth my time and money thanks , Karol
  3. Just adding in that my son has a positive blood work and negative biopsy. The Dr said he didn't have celiac disease and see ya! 5 years later he finally showed visible damage and was puking everyday for 2 months. If your DD is sick I would go gluten free regardless of what the Dr says. Karol mom to Billy 20 years old Down syndrome Hypothyroid and Celiac disease
  4. I have been tested by saliva and have adrenal fatigue. ( I do not have celiac disease my son does) My thyroid tested ok. My Dr also tested all my hormones and I was lacking in progesterone. My alternative md prescribed me progesterone, Licorice root and panax gensing. I was on the licorice root for only 3 months then he took me off of that and switched to Astragalus. You should not take licorice root long term Information for adrenal fatigue show sleeping at the correct time of the day and sleeping enough hours are extremely important for recovery. I hope you get the information you need. Good luck Karol
  5. That made my son so sick. He has gastritis too. I restricted his diet more and he was better last week Th-Sun. Sunday night I made him a cheese crusted pizza. They are very greasy. A little over an hour after that he was in so much pain and sick. A couple of weeks ago he got really sick later after a hot dog. Greasy foods was one of my suspects. I wasn't sure though. He has had cereal with milk and didn't get such a strong response. I am going to keep him restricted from any greasy foods for awhile and see how he does. I just have to get my husband to stop bringing chips into the house. I have to take them all in the car with me when I go to work so Billy doesn't get into them. Karol mom to Billy
  6. I am still having issues with my son. He was diagnosed in January by biopsy. His main symptom was throwing up everyday and multiple times along with pain and grumbling. He got the sickest after eating chocolate at Halloween. At that time he could not eat any chocolate w/o throwing up and a lot of pain. We started him on the gluten free diet. I did not change soaps/shampoos though. He showed improvement.Throwing up slowed down. He recovered a lot faster and not everyday. Late Feb. March he had a few weeks w/o throwing up. He snuck pretzels about 1.5-2 months ago and I am having a hard time getting him better again. Is the chocolate getting him sick a strong indicator of some other sensitivities to other foods? WE also were doing a lot of remodeling in our house could there be dust that is making him sick? I have allowed him to have food with natural flavoring. I think that is all I have slacked on. I told my girls they can not cook anything with flour in it for awhile to see if we are having any cc issues. I have orders to retest his ttg and am going to take him in this week to see if his antibodies are still up. I am not sure how to figure out if other foods are giving him problems. I feel bad he is still having problems. He has missed most of his summer school because of it. Karol mom to Billy
  7. I think it would be best just to go completely gluten-free all at once. We started with chicken rice, mixed veggies. We made a stir fries a lot. I just added more water to make more juices instead of using a soy sauce. Egg salad w/ gluten free crackers and lettuce cheese meat roll ups are a staple too. He didn't like corn tortillas very much. good Luck. I hope you are feeling better soon. Karol
  8. My problem with this company is that they very aggressively market to parents who have children with Down Syndrome and it very much does not cure or repair or anything else for Down Syndrome. There may be evidence it helps with other things but I don't agree with their marketing on parents that may be struggling with a Down syndrome diagnosis. If there were any other company that sold an equivalent product I would look at them. That is just my personal opinion. Karol
  9. My son had very high numbers on his blood test.TTG 156 and then a neg. biopsy. 4 years later got sick and missed over 2 months of school and got a positive biopsy. Diagnosing can be tricky. Karol
  10. Mannatech is not my favorite company. Their marketing techniques are questionable. I would look at other companies that have similar products. I don't think they have the science to prove anything they claim. That is only my personal opinion. Karol
  11. I found Noodles and Company there and it is close by so the teacher is running over to get him something there for dinner. He did get sick after lunch yesterday but is doing good now. ADDED: Billy got a #1st place in the long jump!! Awesome!! His team got 4 in the relay. It was really hot but it all worked out well and he is home now. He treated his Dad to a movie this evening for Father's day. Billy picked the movie tough. Fantastic 4. Karol mom to Billy
  12. I would not change his diet if youare going to a Gi. If he wants any testing done the results will br messed up. I have a cook book with goldfish cracker recipes and alot of other recipes kids would like. It is The Kid-Friendly Food Allergy Cookbook by Leslie Hammond and Lynne Marie Rominger Karol mom to Billy
  13. Thanks, we are in Illinois. He did the standing long jump this afternoon. We were not ableto see that because we work. Sat. he has free. Then Sunday he will do a relay. We will be able to get down to see that. Billy is loving being away form Mom and Dad for the weekend. he especially is looking forward to the dance they have. Lots of girls to impress. I don't think there is an Outback in the city they are in. I am looking at Wendy's though. I ran out of time this morning before I had to leave for work. They have Cracker barrel and a couple others that don't have nutritional info on their Website. I will look more this evening. I sent lettuce meat cheese rollups, egg salad w/ rice cracker, Tuna and sea salt chips, fruit,chips, cereal, donuts, and some other goodies. I made up lunch bags with a meal in it that they can just grab one and he has enough to eat. Fro breakfast one day hey will have eggs and sausage so he can eat that. I am feeling a bit better now. I was really nervous this morning. I am sure he is having fun. I just hope it is not too hot. Karol mom to Billy
  14. I am still new to this and not an expert by any means but our experience was our son had a high Ttg(156) and a neg biopsy 4 years ago. the Gi Dr in a large hospital and he was even in a magazine with his accomplishments told us no villi damage no celiac disease. Don't change his diet and see ya. No follow up care or anything. It took 4 years for the intestinal damage to be severe enough and make him so sick he was out of school for over 2 months. We did find the villi damage then. My son has Down syndrome so he was given the blood test as a recommended screening in health care. I believe people do have positive blood tests before the severe damage is done. I believe my son had celiac disease for the 4 years before the intestinal damage was so severe it finally shows up on biopsy. Good Luck Karol
  15. My son is 19 and has Down syndrome. He was just diagnosed in Jan. This is the first trip I have had to send him on. He is going to state Special Olympics. I packed a bunch of food for breakfast lunch and snacks. They are able to go to get take outs for him for supper. So far I have figured out Culvers chicken cashew salad is ok. I am still looking up some where else. He will be there Friday Sat and Sunday morning. It is a lot different this year sending him with Celiac disease. I am sure he will be fine but I an nervous. My stomach is in knots. Karol
  • Create New...