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Disneyland

hez

By hez
in Traveling with Celiac Disease

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hez Enthusiast
hez
Posted

Well, we finally returned from our first vacation in five years. We went to Disneyland in California. Parts of the vacation were wonderful :) Others not so much :(

Unfortunately, I did get sick. Not really sure where or what from. I found out that my reaction to gluten has changed. It used to be that I got sick within an hour if I ate gluten. Now the reaction seems to be much more gradual. Without the loud noises from my stomach or the cramping. Still have the "d" though. Has anyone else encountered this? Plus I have horrible brain fog. Never used to get this in the past. Most of the chefs were wonderful and knowledgeable about celiac. Only ran into a few problems. The chef at the mexican resturant was wonderful! So very sweet.

Even though I got sick I would still reccomend going to Disneyland. I would also reccomend feeding children before the trip! My dd got car sick thru Denver and the entire rocky mountain region! We learned our lesson. Never travel on a empty stomach!

Hez

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lovegrov Collaborator
lovegrov
Posted

I think any Disney destination is a great place to go with celiac (or other dietary restrictions), but it's still eating out -- and eating out at a busy place. You always take a chance. But you also take a chance with processed foods.

richard

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      Hypoglycemia, ketones in urine and weight lost. I need advice.

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      Hypoglycemia, ketones in urine and weight lost. I need advice.

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    • Aretaeus Cappadocia
      Hypoglycemia, ketones in urine and weight lost. I need advice.

      By Aretaeus Cappadocia · Posted

      Your post doesn't mention if you are seeing Doctors about this and what they had to say, or if you are just trying to manage it by yourself. If you aren't getting medical support, that is the first place to go. On the other hand, if you've been on a diagnostic odyssey with Dr after Dr being perplexed, consider getting your genome sequenced (search for "whole genome sequencing"). It's not guaranteed to get you an answer, but if your symptoms are caused by a genetic condition you might get the answer that is stumping standard differential diagnosis. These days there are quite a few companies offering this service. I wish I could tell you which one was best but I've been out of that field for a decade. Talk to your Dr about this and see what they think. Price is probably ~$500-$1,500 including the sequencing and detailed reports. Sounds like a lot, I know, but consider that 25 years ago just the sequencing (no reports) cost $2.7 B and took 3 years to complete.
    • knitty kitty
      Hypoglycemia, ketones in urine and weight lost. I need advice.

      By knitty kitty · Posted

      @yellowstone, You poor thing!  I'm not a medical doctor, but it sounds like "Refeeding Syndrome".   I suggest you seek medical attention.   Refeeding Syndrome occurs when your body doesn't have enough of the necessary vitamins, especially Thiamine, to turn sugars (from the fruit, juice, and honey) to turn provide energy.   This can occur in Malabsorption due to Celiac Disease.  Malabsorption prevents the absorption of B vitamins, especially Thiamine. The B vitamins and Thiamine cannot be stored long in the body.  When you run out of Thiamine, your body burns fat for energy which produces the Ketones, hence your weight loss. With medical attention, Thiamine and other B vitamins need to be replaced before giving any more sugars.  Doctors can give you an IV containing B vitamins including Thiamine, called a "banana bag".  Riboflavin  Vitamin B2 causes the yellow color.   Doctors can also monitor your electrolytes which can become unbalanced and cause further serious health issues. I've experienced Refeeding Syndrome.  It's very scary.  Health can deteriorate quickly in Refeeding Syndrome.  It's correctable, but complicated.   I strongly urge you to get professional medical attention as soon as possible.   Our prayers are with you! https://my.clevelandclinic.org/health/diseases/23228-refeeding-syndrome Thiamine Deficiency in Self-Induced Refeeding Syndrome, an Undetected and Potentially Lethal Condition https://pmc.ncbi.nlm.nih.gov/articles/PMC4295429/ Keep us posted on your progress!
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      Thank you for sending me this information 🙏🏻❤️✌️
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      By yellowstone · Posted

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