Withdrawal?

[kelly79mass]

Hi it's me Kelly. I posted in the Coping forum. I am married with 3 girls 16, 13, and 11. My 11 yo has celiac disease and has been gluten free 6 days.

She hasn't been sleeping well, I assumed it was due to being upset with her diagnosis but she's had headaches, tummy aches off and on ( will say her tummy feels fine, even great then an hour later has it be upset.) She is complaining about 'starving' 'hungriest ever been ever'. I guess this is withdrawal?? How long will it last??? She's miserable

She had planned on going camping with her best friends (they're sisters) and there family next Fri-Mon. Yesterday she told me "mom I can't go." It will be her 1st time camping and honestly I would hate for her to miss it, she was excited before but I'm not even sure what food to send. Is it unfair to her friends parents? She won't eat gluten free bread. Any ideas? Will she still have withdrawal symptoms in a week?

[nvsmom]

My "hard withdrawl" lasted about 2 weeks but I'm almost 3 decades older so if her's is different, I'm guessing it will be shorter. It wasn't fun. The worst part for me was the tiredness, irritability (mixed in with self pity) and the headache (which wore me down after 10 days). I would let her skip the camping trip and make up for it with a sleepover or something at your house later in the summer. This is a big change, she's probably a bit down, and she's not feeling well so it's not a great time to be away from home. Plus, if you have her friends over, you can control the treats and food so her diet ends up not being a big deal.

It would be tricky for a non-celiac family to understand cross contamination too. They could use the same roasting stick on someone's hot dog (pulled off the stick using the bun) on your daughters, might have gluteny licorice or marshmallows for snacks, serve the Doritos that have gluten, have only glutened butter... it would be unlikely that they would know how careful to be. In my experience, most people roll their eyes at how anal this diet is.

I didn't eat out for a month after diagnosis because 1) I didn't want to go out, and 2) I was nervous too try it... and I'm a fairly steady and content adult. I can imagine it would be scary for your daughter.

Best wishes to you and your family.

[Mizzo]

Hi it's me Kelly. I posted in the Coping forum. I am married with 3 girls 16, 13, and 11. My 11 yo has celiac disease and has been gluten free 6 days.

She hasn't been sleeping well, I assumed it was due to being upset with her diagnosis but she's had headaches, tummy aches off and on ( will say her tummy feels fine, even great then an hour later has it be upset.) She is complaining about 'starving' 'hungriest ever been ever'. I guess this is withdrawal?? How long will it last??? She's miserable

She had planned on going camping with her best friends (they're sisters) and there family next Fri-Mon. Yesterday she told me "mom I can't go." It will be her 1st time camping and honestly I would hate for her to miss it, she was excited before but I'm not even sure what food to send. Is it unfair to her friends parents? She won't eat gluten free bread. Any ideas? Will she still have withdrawal symptoms in a week?

THe hungry stage for us last a couple of weeks as well as the the off and on pains. It's all part of healing . Every persons recovery is different and the "back to normal state" could take weeks to months . Is your girl and the other parents familiar and comfortable with eating gluten free. If not I think your is answer is clear, keep her home. Tell her it's just not safe enough YET but will be by next year when she has learned the basics of food prep, cooking and cleaning up around gluten.

On the other hand if the parents are familiar and willing to try and the camp site is not far ( in case you have to "rescue" your girl) then there are ways to drastically reduce the potential for CC.

I have taken my DD camping but I was there to prepare , cook and clean up and even with me there it was still tough keeping her completely safe with the gluten eaters that were with us. I pre-cleaned , portioned, marinated and froze all the meat portion of meals. Packed rice , baby carrots and a few bags of frozen veggies. We packed a box of gluten-free cereal , snack bars, pretzels, nuts, apples, bananas her own jar of PB and Jelly and a loaf of gluten-free bread. We were at a "resort " camp and had access to my sisters camper (frig) so we were lucky to have yogurt cheese etc.. and we were gone for 6 days. It's a lot of prep work but can be done.

All my DD meals were cooked in Aluminum foil and she ate off paper plates and with plastic utensils only. It's a lot of packing and planning but it can be done.

Good luck!!!

[Roda]

My youngest son had a "withdrawl." He actually got moodier and was constantly hungry. If started tapering off after about 2 weeks.