Karwei5

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My son is going to Normal Illinois this weekend and I need to know if there are restaurants that serve gluten free items there?

Thanks,

Karol mom to Billy

Have/did you have both Celiac disease and gastritis.

How was your recovery.

Did the gastritis make you recovery harder?

My son has both along with a moderate hiatal hernia.

He did get glutened about a month ago when he got into pretzels.

But I still have problems with him throwing up.

I can not consistently get him healthy and reliable to not throw up.

How was you experience?

Karol mom to Billy 19 years old Down syndrome, mitral valve regurgitation, hypothyroidism and Celaic disease.

Another snack idea is a baked potato with chili and cheese if those things are with in his other dietary acceptable lists.

My son is recently diagnosed so I don't have any good advice as he got into a bag of pretzels about a month ago. He got pretty sick.

good luck

Karol mom to Billy

I don't have any info about this but I have a couple of friends that have kids w/ Hirschsprung's and they are doing fine. They did have to have surgery but all is well with them now.

If that is what you find it will be ok. It is awfully scary thinking about Hirschsprung's but if you have to deal with it you will be able to do it.

Karol mom to Billy 19 years old

I am not sure. Billy's Dad was helping him order. The one Billy got seemed to have soy to me. Seemed like a soy sauce type. I don't know what the other option was.

I wonder if you took in your own sauce and told them you dietary needs they could use yours? I am not sure about health regulations with that though.

It would be worth a try to check it out.

The kids loved Gameworks. Billy and his teenaged sister liked the second level better. My younger daughter liked down stairs more. It is the 3rd time we have been there. We accidentally came across it about 1.5-2 years ago.

I can't say it is my favorite place though. I have to be a good Mom and let the kids have their fun.

Karol

They said not to order the other things off the menu but eat at the Asian Market Bar.

That is where you pick the rice, veggies and meat and they cook it at the "bar" You watch them cook it. Then they have 2 sauces. The sauces are not left on the "bar" they will ask you which one you want and bring it out for you.

You have to let them know you want it gluten free and they will cook with clean pan/utensils.

Our bill was approx. $15 dollars per person.

Karol mom t Billy 19 years old

We went to a Stir Crazy restaurant yesterday. Open Original Shared Link

After playing at an arcade, Gameworks in Schaumburg, IL. and stopped at the Woodfield Mall.

We were getting hungry as we were there longer than we expected. Looking around as to where we could take my son to eat.

We haven't been out to eat much after his diagnosis in January.

My husband went in to ask about a gluten free menu. They had one

The Asian Market Bar, had 2 gluten free sauces to choose from.

The manager personally went though the line with us. Talked to the cook about how to handle Billy's food. Had the cooks use freshly sanitized pan and ladle, he kept the ladle away form the other items he was cooking. It all went well and Billy had a great meal.

Karol

Thank you for mentioning the Lays contamination problem.

I was having problems with my son again and he has been eating Lays potato chips.

I was also buying him ham and cheese at the deli but stopped that because I thought that was the problem.

I will still not buy form the deli again. I am going to stick to pre -packed meat and cheese.

We are still in the beginning stages I guess even after 3 month.

It does take awhile to figure out ALL the sources of contamination.

Anyway you helped us out.

Thanks

Karol mom to Billy 19~Down syndrome, Celiac disease, hypothyroidism and a leaking mitral valve

When your GI DR. says he(my son) can't have celiac as he doesn't look malnutritioned even after reports of a high blood test(154) 4 years previous(and a neg biopsy) and being high risk w/ having down syndrome and yes he did have a distended stomach.

Good thing he accidently found it w/ a scope alongwith gastritis and a hiatal hernia.

At least I had a son and not a daughter so they could not sayit was allin his head because of hormonal issues.

Karol

Have you ever tried bringing your own food to the restaurant? I do this all the time and have never had a problem. If they did hassle me, I'd tell them that if they don't let me eat my own food, I was taking all my friends and moving to a different restaurant. Sometimes I even ask them to heat up my food for me. I'll hand them a grilled cheese in a toaster bag with the instructions "heat it any way you want, just DON'T TAKE IT OUT OF THE BAG!!!"

I haven't tried to take him out yet as he is just healing and finally not throwing up all the time. I am going to have to be brave at some point and do it. I wish they just didn't go out for Easter. I am not sure Billy is emotionally ready to see evryone eat what he can not have yet either. I am sure we will get there though. Thanks for the ideas.

Karol mom to Billy ~18 Down syndrome, hypothyroid, mitral valve regurgitation and Celiac and FINALLY not throwing up everyday!