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

Still Learning


o2guy

Recommended Posts

o2guy Rookie

Hi, I'm new to this forum and also new to gluten free. I was just diagnosed in Sept. of this year after a lifetime of problems. I find that I am doing well most day's with being gluten free, and I have not intentionally contaminated myself. But it is very hard to figure out all the "hidden Gluten" in a lot of products. Since diagnosis some of my gastrointestinal symptoms have stared to subside, but I still have problems on some day's and can't figure out what the heck i've had to cause them. I have now went lactose free and it helps some. I also am having a hard time with the lack of sleep if I get 3 hours a night it's a miracle. And as soon as I start to sleep the leg cramps have me right back up. I have also been loosing weight quickly, I can see why some people go gluten free just for the diet aspects. I have droped 25 pounds in a month.I get very frustrated and sometimes I just want to go hide somewhere and curl up and cry. Sorry for running on I guess I just needed to vent.


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



Celiac.com Sponsor (A8-M):



saintmaybe Collaborator

First, let me say that I am sorry you're so sick. Many people on the board have been there, so I think you will find good company here if you just need to vent.

If you need practical advice...are you sure you're completely gluten free? Once I was, my digestive system stabilized almost immediately, and I stopped dropping weight almost instantly. That said, I consider myself fairly lucky in that thus far, aside from the severe nutritional deficiencies of any celiac, I don't seem to have any of the additional food intolerances many celiacs have.

One thing you may try just until your weight stabilizes is Boost nutritional drinks. I've been on them for about a month. My weight initially plateaued, and in the last week I've actually gained a pound. I started on two or three a day, and am thinking about decreasing to one for a trial period. They are gluten and lactose free, but not dairy free, so that would be a consideration. I would suggest lactase enzymes if you go this route.

I hope you feel better!

AVR1962 Collaborator

Going off dairy is a very good idea for now while your body heals. Sound like you have some vitamin and mineral deficiencies. Cramps & spasms in the muscles indicate your magnesium, and possibly potassium, is low. Insomnia is also an indicator that your body isn't getting enough nutrients. More than likely the villa in the intestines is damaged and not able to absorb properly but somehow you have to try to get these nutrients into your body. If you cannot get the symptoms to go away by adding nutritous foods you might want to consider supplements. We tend to be low in calcium, vits d & B12, magnesium and iron. Once your body starts mending you will start sleeping better.

o2guy Rookie

Going off dairy is a very good idea for now while your body heals. Sound like you have some vitamin and mineral deficiencies. Cramps & spasms in the muscles indicate your magnesium, and possibly potassium, is low. Insomnia is also an indicator that your body isn't getting enough nutrients. More than likely the villa in the intestines is damaged and not able to absorb properly but somehow you have to try to get these nutrients into your body. If you cannot get the symptoms to go away by adding nutritous foods you might want to consider supplements. We tend to be low in calcium, vits d & B12, magnesium and iron. Once your body starts mending you will start sleeping better.

I take a potasium supplement daily as well as b12 injections every two weeks I have taken them for over 10 years I haven't tried magnesium maybe I will add that to my daily medications Thanks for the advice.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,201
    • 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...