Wednesday, November 19, 2008

Eating Out with a child that has Fructose and Sucrose Malabsorption

Well we went to Ikea last night after dropping my husband off at the airport. I figured Cooper could eat some fructose friendly food there and my daughter could eat whatever she wanted. They ran out of fish so I ordered chips for Cooper. Most of the time that seems all we can ever order when we go out because of his intolerances to Dairy and Soy on top of his Sucrose and Fructose Malabsorption.

His response to hot chips on his plate was less than enthusiastic.

I tried to order fish but they had run out. I ordered the meatballs and Cooper was eyeing them off and crying out 'some' 'some'.
Relunctantly I let him have half a meat ball and proceeded to try to eat my meal. Once Cooper got a taste for those meatballs that was it he kept harping on at me. So in the end I think he consumed 1.5 meatballs. Well it was enough to give him awful stomach aches twice throughout the night and it went on for hours. I knew once I tried a meatball that it had the dreaded onion in it. So I felt we were going to be up with tummy pain.

It's so heatbreaking just going out, there is nothing to give them but hot chips. Imagine that being your only choice everytime you went out to lunch or dinner. Very boring.
I guess I'm going to have to get used to the idea of just packing him a meal whenever we go out.


Deborah said...

hi there I came across your blog post from 2008-- whatever happened? was it celiac? how has he been doing? my little girl has had similar problems so just wondering what the outcome was for your family?

Liz and Cooper said...

Deborah it's been a long road...he isn't celiac had him tested for that. Lot's of intolerances and malabsorption. Things are getting better Cooper turns 3 tomorrow. I will post more over the coming week.
Hope your little girl is ok?

cate said...

Hi Liz,

i have twin girls (23 months) who have a gluten intolerance and a fructose malabsorption that we have known about for a year now, and they have recently tested positive for a sucrose malabsorption. i wasn't surpirsed at this recent finding because i had been questioning it for a while. i laughed when you said about the hot chips because that is all they ever can eat when we go out!

are you a part of a support group or anything? did cooper have the hydrogen breath test or a bowel biopsy? this sucrose thing is a bit new to me and im not too sure as to how to tackle it. any suggesstions you have would be great.

thanks, Cate

Liz and Cooper said...

Hi Cate,

How lucky are you having twin girls. I'm a twin and so much fun, I had a brother, so a little different.

I'm sorry to hear that your girls have fructose and gluten intolerance..and now sucrose.

Cooper was tested using a hydrogen breath test, biopsy and endoscopy.
The sucrose thing...I have to say I found it really hard. When Cooper had the hydrogen test the results were that he could not absorb sucrose. So, i was really distressed, as there is a genetic illness which is Sucrose intolerance, also called Congenital Sucrase-Isomaltase Deficiency. I asked our gastrointestinal peadatrican for an endoscopy because I wanted to know exactly what was happening. The results came back saying he could absorb sucrose. The Dr's rational for this is the bowel is the size of a tennis court and he only took a grain of rice across that whole tennis court to look at. So the other part of that tennis court might have scorched or dry patches that are unhealthy.

Cooper is now 3 years and has improved as he is getting older. The main thing now is that he can eat sugar but can't tolerate vanilla essence, raw sugar, honey in cakes (I think it's the sugar alcohol content in the vanilla). Nobody can tell me.

So keep your chin up. I'm sure it will improve as they get older. I sympathise as I know how difficult it is. I'm not in a support group now, but I was and it really helped, we formed our own for a while. Here is one that may help.

How were your girls diagnosed?

Please feel free to ask me any other questions. BTW we still have to order hot chips most of the time when we go out because everything contains soy, wheat, onion or tomato!

Gotta love chips!

Adrianne said...

I feel your pain.... My 5 year old is fructose and lactose intolerant. I'm sure that this is not the end of his diagnosis still... has problems. My top eating out tip is SUSHI! he loves it. Good luck.... i am in Australia. have you heard of Sue Shepherd? she is a guru at knowing about these conditions. Google her you may find some help.

Anonymous said...

Fructose malabsorption is NOT a food allergy, meaning there is no production of IgE antibodies or release of histamine. There is also no typical allergic symptoms, like itching or hives.