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

In A Bit Of A Dilemma...


holiday16

Recommended Posts

holiday16 Enthusiast

I see people asking all the time for feedback on what you do that helps get over glutenings and would really like to answer this, but not sure how because with what I take that I have found to work for me are products of a company that I am associated with. Any good way to approach this because I'm not here to "troll" for people, but at the same time would love to share what has worked for me as it may help others?

It really hit home the other night how much I would love to share this here because there is one product I take that really helps calm me down with gluten assocated anger. What happened was we were planning to go to the fair with our youngest daugher. That day the school had called because her stomach hurt really bad so we picked her up and concluded that she must have gotten a small amount gluten at the school the day before as it takes 24 hours before she gets pain. By the time we were ready to leave her stomach was better, but she went into a horrendous outburst which is what happens when she has gluten. She overreacts to every little thing, yells and cries uncontrollably and nothing will calm her down.

I aked dh to give her half of one of these tablets that I take (we had our cardiologist check the bottle before we gave it to our son so we're comfortable giving it to our kids) and told her we would not go until she took it. Left for the fair and actually had a great time with no uncontrollable emotions. On the way home I asked her if she had taken her pill since I didn't see for sure since dh gave it to her and she said she did. Then she added that it was really weird, but before she took the pill she couldn't stop crying, but after she had it she didn't want to cry anymore. That really hit home because that's how I feel when I take it for gluten associated anger. We also give it to our oldest daughter when she goes into the same thing although hers is more depression related. We used it for her before we even knew she had trouble with gluten. It's certainly not a solution for everyone as I know my sister used it for her daughter and didn't have the same success we had, but for us it's been invaluable. We don't go on any trips without it anymore :o)

So, I think you can see why I would love to share this here, but at the same time this board is very important to me and I don't want to be seen as trying to promote what I do. I also have to walk the line of following company rules and guidelines so just naming products isn't a good option either. Any advice? I feel so excited we found something that worked so well for us, but I don't want to violate rules by sharing it!

BTW, totally off topic the highlight of the night was our daughter won one of those huge prizes at the fair which has never happened in all our years of going there. She was so excited she talked for about an hour non-stop, LOL! Very cute and she's been sleeping with this huge cheetah ever since :o)


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



Celiac.com Sponsor (A8-M):



mamaw Community Regular

Okay, now please e-mail by private message the name of the pill? Is it a drug or something natural? We also have one that gets very nasty when gluten has been bestowed near him>>>>... He also cries & becomes very negative ...........

I could use your help..

thanks

mamaw

Lisa Mentor

Perhaps those who are interested could get that information from your website, listed on your personal profile page.

Generic Apprentice

The only website I saw on her page had to do with a a boy and a heart procedure. Am I missing something? I would love to know what this product is also.

Lisa Mentor
The only website I saw on her page had to do with a a boy and a heart procedure. Am I missing something? I would love to know what this product is also.

I see that now. The only other thing I would suggest is direct contact.

gfpaperdoll Rookie

a pill??? oh come on, this post sounds a little too scripted for me...

holiday16 Enthusiast

Momma Goose, thank you for the suggestion. I added the product page for the supplement I was talking about to my profile as my website. I guess I could leave it there for a while so people can see what I'm talking about. I just really hesitated to link a business page to a site like this as that's really not why I joined the forum.

Like I said in my original post this supplement has been invaluable to us and we can't do without it, but my sister tried it with her daughter and didn't get the same results we did. Personally, there are other things I take as well when I find I've accidentally had gluten. Certainly not a cure, but it seems to make it more bearable and give me a bit more energy. Still very miserable though as I'm sure others can relate.

The site that I had linked in my profile before I changed it was about my son. He was born with a rare heart condition and we use the internet to reach other parents that are getting ready to have a child with the same condition. When our son was born I wanted more than anything to see an example of a successful outcome and give me some hope. I didn't have that and so we decided we would share our sons story to give people hope of what the outcome could be. I was sick for so long (I'm sure others can relate!) that the page is terribly outdated, but as I'm getting better I'm getting more involved again and it's on my to do list to fix up his site. My husband added new pictures, but I haven't done any work on it since I became sick which is why it looks so disjointed.


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,200
    • Most Online (within 30 mins)
      7,748

    Elisa Stutsman
    Newest Member
    Elisa Stutsman
    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

    • Redanafs
      Hi everyone. Back in 2022 I had blood work drawn for iga ext gliadin. Since then I’ve developed worse stomach issues and all other health issues. My doctor just said cut out gluten. He did no further testing. Please see my test results attached. I just need some direction cause I feel so ill and the stomach pain is becoming worse. Can this test show indications for other gastrointestinal diseases?
    • Fayeb23
      Thank you. These were the results TTG ABS NUMERICAL: > 250.0 U/mL [< 14.99]  Really don’t understand the results!
    • Scott Adams
      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
      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
      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…
×
×
  • Create New...