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Mu Husband Wants To Take The Kids Out Of Town Overnight.

Karwei5

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Karwei5 Apprentice
Karwei5
Posted

And now I have to figure out what to Pack for my son who is 18 and has Down syndrome and Celiac disease.

I can't go as I have to work.

I am overwhelmed on how to pack food for him. There is an Outback so they can have supper but I have to figure out all the other meals for 2 days.

Any suggestions.

Karol mom to Billy 18 years old Down syndrome Celiac disesae

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Guhlia Rising Star
Guhlia
Posted

Is everyone gluten free? If so, will they have a fridge in their hotel room? If so, one loaf of Kinnikinnick bread, one toaster (easy to travel with), a super pack of oscar meyer lunch meat, a pack of cheese, one box of cereal (they can buy milk wherever they go), fruit, potato chips, gluten free pretzels and peanut butter, raisins, and Lara or Kind bars. That should do them for meals other than dinner.

If they won't have a fridge, a loaf of Kinnikinnick bread (it will keep for 2, maybe 3 days without being refrigerated), a toaster, peanut butter and honey or marshmallow cream, fruit, cereal (no milk), potato chips, gluten free pretzels, raisins, and Lara or Kind Bars. Gluten free beef jerky also makes good road food as well as nuts and dried fruit.

Lisa Mentor
Lisa
Posted

What city or town is their destination. Or what towns will they pass through? I may be able to help you with restaurants.

Karwei5 Apprentice
Karwei5
Posted
  • Author
What city or town is their destination. Or what towns will they pass through? I may be able to help you with restaurants.

They are going to the Illinois/Iowa border to Rock Island Illinois then to Davenport Iowa and Dubuque Iowa

Billy is the only one gluten free.

I was thinking they may get away with getting eggs and bacon for breakfast if they tell the restaurant to scrape the grill and use a clean spatula.

I went to the store and found some gluten free English muffins, Tuna, peanut butter, (Ham,cheese and lettuce~for roll ups)

I guess what really freaked me out was that he caled me at 6pm tonight to say they are going tomorrow and I wasn't prepared. I am still new at this and it isn't second nature for me yet.

Karol mom to Billy

gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

I don't know how Downs factors into the foods, does it require special diet too? Last minute trips are always really hard to plan.

Actually I have always found breakfast to be one of the easiest gluten-free meals to eat out. Eggs, hash browns, fruit. (Omlettes are generally cooked in specific frying pans, so no grill contamination problems.) Bring gluten-free muffins or breads if you need to.

Burgers no bun, baked potato, hot dogs on gluten-free bread or plain, nachos - chips and shredded cheese. All are fairly common at restaurants.

Pack cereal, candy, fruit, chips, and time to go.

It sounds like they will have a great time. Relax and enjoy the down time. Traveling gets easier it -sounds impossible at first.

Let us know how the trip went.

Tritty Rookie
Tritty
Posted

Trail mix is a must for me on a car trip - can keep me going until I find something I can eat. Maybe just pack a little cooler that they can keep refilling with ice from hotels. Celery and peanut butter, fruit, cheese. I saw at the store that they make packs of apples with dip, etc now in nice little easy packs like you get at McDonald's. Easy for travel - I think it was the DIsney brand at Kroger. I didn't read any ingredients yet though...

kbtoyssni Contributor
kbtoyssni
Posted

For road trips I bring:

-A loaf of bread

-Peanut butter

-lettuce

-Slices of cheese and/or meat

-Those mini-mustard packets you get at fast food places

-Potatoes for baking (plus you can put the cheese on them)

-Thai kitchen imitation ramen-noodle packages

-Individual string cheeses

-Apples

-Cereal plus milk

-Some candy (Fun sized M&Ms, almond joys)

-Some crackers or a bag of corn chips for snacking

If you add all this up I've got more than enough calories to keep me going for two days. It may not be the absolute healthiest, but at least I won't starve!

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      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      High DGP-A with normal IGA

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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
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      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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