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

I'm A Newbie To Here And celiac disease.

mommylove777

By mommylove777
in Coping with Celiac Disease

Recommended Posts

mommylove777 Newbie
mommylove777
Posted

I just found out 3 weeks ago that my test showed in the low positive range for celiac. I am going to the GI @ the end of the month. May have scope done in early '07(ins. reasons). I live in NC and have a DH and 2 DS's.

Trying to figure out mostly what I can and can't eat now.

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

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted

Welcome!

Was your DH diagnosed by biopsy? OH, DH= hubby!!! LOL

If you're gluten-free prior to your biopsy, it has a higher chance of having a false negative. With your blood work already in the low range, it could show up negative anyway. Think about that before you go gluten-free now.

You could just base your decision to go gluten-free on your blood work and your dietary response.

Guest nini
Guest nini
Posted

If you are planning on having the scope do not start the diet yet. But even if the results of the scope are negative, because of having enough elevated antibodies for it to show up in blood tests, it's still worth it to try the diet regardless of the results of the scope. That being said, it's up to you (not your dr.) if you want to still get the scope or if you just want to go ahead and start the diet and start getting better. I never had the scope, just blood tests, and a low positive is still positive... (just my humble opinion of course!) anyway, welcome to the board! tell us a little about yourself! join in the fun!

by "tell us a little about yourself" I mean about your symptoms, how long you've been ill, what led your Dr.s to suspect celiac? That sort of thing...

mommylove777 Newbie
mommylove777
Posted
  • Author

Wow, thanks for quick response. I will likely do all that.

Not sure of symptoms that go exactly along with celiac, but, this is what I have:

overweight,

Graves disease,

hypothyroidism,

insulin resistant,

lactose intolerant,

uncomfortable pains in feet and hip,

Vit. D and iron defficient,

bout of Sarcoidosis 2 yrs ago,

these are all diagnosed.

LKelly8 Rookie
LKelly8
Posted

Hi :D , I have celiac and rheumatoid arthritis. I read somewhere that Sarcoidosis sometimes causes arthritis in the ankles. Were you on prednisone for the Sarcoidosis? Pred can sap calcium from your bones and cause bone pain in the weight bearing long bones and joints, hip/knees/feet etc.

Celiac also causes calcium loss, as well as many other mineral and vitamin deficiencies.

I agree "low positive" is positive, IMHOtoo :lol: .

MistressIsis Apprentice
MistressIsis
Posted

Welcome! I think she meant what symptoms are leading you to the scope...the things that aren't already attirbuted to the other issues.

Guest nini
Guest nini
Posted
Welcome! I think she meant what symptoms are leading you to the scope...the things that aren't already attirbuted to the other issues.

yep, thanks... I didn't explain myself well...

as far as the overweight thing goes, I was classified "morbidly obese" before my dx, since my dx I have been very strict about being gluten-free (with occassional accidental glutenings from cross contamination) and have lost over 110 lbs.

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

Celiac.com Sponsor (A8-M):


lonewolf Collaborator
lonewolf
Posted

Welcome to the board. You're in the right place. To echo what others have said, you should keep eating gluten until after your biopsy. But even if the biopsy is negative, you should try going gluten-free. Or you could just trust the bloodwork results and start the diet now. Your low positive is still positive and your other health conditions point to either Celiac or gluten intolerance.

mommylove777 Newbie
mommylove777
Posted
  • Author
Welcome! I think she meant what symptoms are leading you to the scope...the things that aren't already attirbuted to the other issues.

Well, I am not really sure exactly what my dr. noticed that wanted him to screen me for celiac. I think he feels that many things can cause my body to be insulin resistant and that may be what it was. He then said, my GI will want to do a scope so that is why I will have that done.

mommylove777 Newbie
mommylove777
Posted
  • Author
Hi :D , I have celiac and rheumatoid arthritis. I read somewhere that Sarcoidosis sometimes causes arthritis in the ankles. Were you on prednisone for the Sarcoidosis? Pred can sap calcium from your bones and cause bone pain in the weight bearing long bones and joints, hip/knees/feet etc.

Celiac also causes calcium loss, as well as many other mineral and vitamin deficiencies.

I agree "low positive" is positive, IMHOtoo :lol: .

Sarc. does cause arthralgia (temp. arthritis) and I did have that- very painful. It faded after I was on Pred. for only 1 1/2 months. This was 3 years ago. It is not a chronic case but considered acute. It could flare up. I take a Vit. D pil now to bring up that def. and am worried that the calcium can fuel the Sarc. and hope it doesn't affect the Celiac also. I have a great Dr. in CHarlotte and I think he will keep a sharp eye on that.

Welcome to the board. You're in the right place. To echo what others have said, you should keep eating gluten until after your biopsy. But even if the biopsy is negative, you should try going gluten-free. Or you could just trust the bloodwork results and start the diet now. Your low positive is still positive and your other health conditions point to either Celiac or gluten intolerance.

THanks all for that advice. I will likely wait to go gluten free. I will not have the scope til Jan. so this will allow me to get a good year under my belt before next years Holidays. :blink:

yep, thanks... I didn't explain myself well...

as far as the overweight thing goes, I was classified "morbidly obese" before my dx, since my dx I have been very strict about being gluten-free (with occassional accidental glutenings from cross contamination) and have lost over 110 lbs.

AWESOME!!! :D Great job on the weight. That is so comforting to hear. I do hope that that is part of my prob. It will be something that gets me going. Keep up the good work.

Archived

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

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


  • Member Statistics

    • Total Members
      131,199
    • Most Online (within 30 mins)
      7,748
    Stacy M
    Newest Member
    Stacy M
    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
      Diagnosis and further testing Celiac

      By Redanafs · Posted

      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
      Waiting Gastroenterology review

      By Fayeb23 · Posted

      Thank you. These were the results TTG ABS NUMERICAL: > 250.0 U/mL [< 14.99]  Really don’t understand the results!
    • 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…
×
×
  • Create New...