Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Withdrawal?

kelly79mass

Recommended Posts

kelly79mass Newbie
kelly79mass
Posted

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

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 Enthusiast
Mizzo
Posted

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 Rising Star
Roda
Posted

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748
    Jamie0230
    Newest Member
    Jamie0230
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      Waiting Gastroenterology review

      By RMJ · Posted

      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Bev in Milw · Posted

      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...