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Daisys mom

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Daisys mom Newbie
Daisys mom
Posted

Ok.. Without making a book here .. My daughter  (now 20 yhad a lot of GI problems.. so after being DX'd with GP  I asked our family Dr to test her for Celiac's  .. He said that her test came back at a 21 (1-3 being normal) this was over a year ago .. 

 

So in addition to the C diet she could not eat Fruit or veggies and meat was a no no .. it was mostly  potatoes and junk food (little bit of chicken).

 

 

Ok so her GP is now gone.. and the Dr we saw that was a specialist for GP said he didnt think she had Celiacs 

(needless to say she got off all food restrictions and eat anything she wanted ie bread etc) 

she has been tested again same results as well as having a genetics test... all say she still has Celiacs..

 

She still doesn't feel well... So she has decided to go back on a gluten-free diet !!  Ok.. here is the newest kink in our

plans.. We are being transferred half way across the country, ( we will be driving about 6 days as we also have a 3 yr old ) We leave in 3 weeks 

 

So as much as I hate to ask this... Do we go ahead and start gluten-free or just cut back ,, I guess my question is 

 

Did yall just get up and go gluten-free OR did you wean your self off ?  Should we start now? Or weight till we get moved?

 

Thoughts ?? 

 

 

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nvsmom Community Regular
nvsmom
Posted

If you can, go gluten-free now. Eating gluten-free while travelling for 6 days will be a hassle but it is probably preferable to feeling sick in the car for 6 days.  Plus you will probably travel in the future so setting the precedent now that eating gluten while on vacation/travelling is fine is probably not a good idea. She needs to be gluten-free, all of the time, for the rest of her life, or she will pay for it with health problems just 10 years down the road in areas like infertility, nerve problems, arthritis, bone loss, etc.

 

Eating gluten-free is a bit of extra planning while travelling.  She will need a cooler so you all can picnic as much as humanly possible. Bring gluten-free bread for sandwiches and make or buy a bunch of gluten-free muffins or loaves for snacks.  Bring a bunch of fruit, veggies, nuts and pepperoni sticks... stuff like that.  Travel with a grill and cook hotdogs or steaks in front of your hotel room in the evening.  It can be done, you'll just have to change the way you usually travel - it's almost more mental work than anything, as you make the changes she needs.

 

Best wishes with the move.

 

ps.  You should probably get the rest of the family checked, and rechecked every 2 years for celiac disease as it has a genetic component.

SMRI Collaborator
SMRI
Posted

Could she not eat the fruits, veges and meat because it made her sick or because the dr said no?  Also, is she 20 years old? I would suggest doing the endoscope and the rest of the bloodwork and maybe other testing if she really can't eat fruits, veges and meat.  There isn't anything left to eat after that so she needs to find something she can eat.  If her marker came back at 21 (assuming the tissue IgA test) she has Celiac and needs to be gluten-free but she also needs to find out why she can't eat anything else.  A 20 year old should easily be able to travel and eat gluten-free by packing gluten-free food, finding gluten-free places to eat along the way, etc.

Georgia-guy Enthusiast
Georgia-guy
Posted

With traveling for 6 days, and you do have 3 weeks to prepare, I would go ahead and start the gluten free diet. As others said, get a cooler, pack gluten free snacks, bread, etc. there are coolers you can plug into the power adapter in the car to provide power like a fridge.

However, I'm sure y'all don't want to eat snacks and sandwiches every day. You will probably have a hankering to eat out. If you are like me, you probably already have an idea what your travel path will be, and a daily goal to teach before stopping for the night. Go ahead and post the cities you will be in at meal times, and people on here that live in those areas can recommend good trustworthy places to eat. (I would start a thread in the "restaurants and dining" forum for that.)

Daisys mom Newbie
Daisys mom
Posted
  • Author

Could she not eat the fruits, veges and meat because it made her sick or because the dr said no?  Also, is she 20 years old? I would suggest doing the endoscope and the rest of the bloodwork and maybe other testing if she really can't eat fruits, veges and meat.  There isn't anything left to eat after that so she needs to find something she can eat.  If her marker came back at 21 (assuming the tissue IgA test) she has Celiac and needs to be gluten-free but she also needs to find out why she can't eat anything else.  A 20 year old should easily be able to travel and eat gluten-free by packing gluten-free food, finding gluten-free places to eat along the way, etc.

No the "diet " for  GP (Gastroparesis) is a gluten filled diet.. NO fruits no veggies.. rarely any meat..  breads and pasta are ok. baked potatoes etc.. Basically the stomach does not empty (in her case) or empties slowly.  

 

As for the testing I am not truly sure what kind of test other than blood.. but of the 4 "specialist" we saw 2 scoped her and neither did any bi opsies or looked for Celiacs ,, and a 3rd just ordered a genetics blood test which also came back positive.

 

they now say that her GP has cleared up as there are 2 kinds one that goes away after a while adn one that does not.

Daisys mom Newbie
Daisys mom
Posted
  • Author

Thanks for all the ideas and we will be planning the trip over this weekend and I have bee thinking along the lines of finding things that we could do at rest stops etc for breakfast and lunch .. an then a restaurant for dinner.

BethM55 Enthusiast
BethM55
Posted

There are apps to help you find gluten-free friendly places to eat.  Find Me Gluten Free is a popular one.  I've used it when we travel.

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