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Withdrawal?
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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?

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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.

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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!!!

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

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    • Thank you! I will call and ask for a full panel and see where it leads!!
    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
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