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

Diagnosis In Progress

freeda

Recommended Posts

freeda Newbie
freeda
Posted

Hi everybody. Here's where I stand.

History:

IBS (w/dairy trigger among others)

elevated ANA's (RA, lupus, and sjogren's ruled out, no cause found)

anxiety and depression (dx'd as non-classic bipolar)

Diagnosis progress:

6/29/09, doc okay with the idea of celiac disease, blood drawn for testing - should hear back within a couple of weeks?

Now that I've got my blood drawn, I'm ready to stop eating this dang poison. I feel like crap because I was gluten loading before my test. I have spent SOOOOOO much time in the potty I could have read War and Peace in there.

So far I've changed to gluten-free makeup, and tried the gluten-free menu at Outback. I bought some rice pasta to try, and had that tonite (ick). And figured out what "gas station crap" I can eat. Yay, Skittles says gluten-free right on the bag!!

I already told my sisters and my mom to think about getting screened. Mom has GI problems and depression, and one sister has GI problems. Warned all about latency, etc.

I really appreciate all I've learned on this site. Thank you all for being open about your journeys! It's a great help!!!!!!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome, you do sound like you are one of the 'family'. One word of caution though- if you are going to have an endo in the diagnostic process you have to keep eating gluten until that is done. Also there is a fairly high risk of a false negative both with blood testing and biopsy so no matter what the results of those you should give the diet a good strict try after all your testing is done. If you are not going to agree to an endo then go ahead and give the diet a good strict try and you may have the answer before you get your test results back. You will want to avoid dairy also for a while when you start the diet as the same area that is impacted by celiac is responsible for producing the enzyme we need to digest dairy. Most of us can add dairy back in after we heal.

I hope you get some relief soon.

curlyfries Contributor
curlyfries
Posted
I bought some rice pasta to try, and had that tonite (ick). !!!!!!

yeah.....I wasn't too keen on the rice pasta either.......don't remember what brand it was. For spaghetti, I like to use corn pasta. MUCH better, IMO, but I'm sure there are those who will disagree. However, for lasagna I do like Tinkyada rice pasta.

freeda Newbie
freeda
Posted
  • Author
yeah.....I wasn't too keen on the rice pasta either.......don't remember what brand it was. For spaghetti, I like to use corn pasta. MUCH better, IMO, but I'm sure there are those who will disagree. However, for lasagna I do like Tinkyada rice pasta.

Thanks for the tip, I will look for that!

freeda Newbie
freeda
Posted
  • Author
Welcome, you do sound like you are one of the 'family'. One word of caution though- if you are going to have an endo in the diagnostic process you have to keep eating gluten until that is done. Also there is a fairly high risk of a false negative both with blood testing and biopsy so no matter what the results of those you should give the diet a good strict try after all your testing is done. If you are not going to agree to an endo then go ahead and give the diet a good strict try and you may have the answer before you get your test results back. You will want to avoid dairy also for a while when you start the diet as the same area that is impacted by celiac is responsible for producing the enzyme we need to digest dairy. Most of us can add dairy back in after we heal.

I hope you get some relief soon.

Thanks for your reply. I haven't got a referral for a GI doc yet, just a dietician. Should the GI be my next step, whether or not the blood test is positive?

I haven't eaten dairy but maybe a few times a year for a few years, so that's no problem.

ang1e0251 Contributor
ang1e0251
Posted

If your bloodwork comes back positive, your dr will probably recommend a GI. If you want that, keep eating gluten. If you don't, do like she said and start the diet right away. I also agree that Tinkyada is the best pasta!

freeda Newbie
freeda
Posted
  • Author
If your bloodwork comes back positive, your dr will probably recommend a GI. If you want that, keep eating gluten. If you don't, do like she said and start the diet right away. I also agree that Tinkyada is the best pasta!

Okay, sounds good. I had pancakes for lunch. I'm just trying to be in the mindset of tasting the "last" of everything. Saying goodbye to it. lol

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.

Go to topic listing
  • 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
      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...