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

Starting Out On A gluten-free Diet


SuzieQ1234

Recommended Posts

SuzieQ1234 Newbie

Hello!
I am a newbie here, and currently trialling a gluten free diet. I have had terrible joint pains this year, which started in January and have travelled around my body for no apparent reason. I had a very stressful few months in my personal life in Oct/Nov last year and thought that may have contributed to it.
I was only talking to another Mum awhile ago and she said gluten can cause joint problems. Over the years I have had tummy issues, but was never able to pinpoint the cause. I never considered gluten could have been an issue. So I went to my GP who tested a range of things, which all came back fine, including celiac antibodies.
So she suggested that I try a month gluten-free, which I am now doing. I do feel quite a lot better, no headaches, less tired and 'foggy'. Tummy issues have eased. I am also vegetarian so trying to cut out grains and breads etc has been a challenge.
I am not under the guidance of a dietican as yet, so would that be an idea before reintroducing gluten or wheat? I'm not sure the best way to go from here. The gp said if I feel considerably better gluten-free, I can go and have the biopsy as bloods are not always 100%.

 

But since I have been off gluten for only a few weeks, bit hestitant to reintroduce it. I've been told there is a gene test that can be done, maybe that might be worth a try?


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Welcome, Suzie!

 

If you do have celiac disease, 30 days on a gluten-free diet is not long enough to eliminate symptoms.  You probably need to continue to be gluten free for six months.   A endoscopy/biopsy could be done but a gluten challenge can be difficult after going gluten free.  You need to be on gluten for about 4 weeks prior to an endoscopy.  Here's some information from the University of Chicago's celiac website and the American GI org about testing:

 

Open Original Shared Link

 

Open Original Shared Link

 

Genetic Testing?  It helps rule out celiac disease as about 30 percent of the population carries the genes for celiac, but only a few actually develop it.  

 

I wish you well!  

SuzieQ1234 Newbie

Thanks for the info. It could be a gluten sensitivity if it's not celiac disease. I also have an underactive thyroid, so, many symptoms carry over. I am on medication for that, and the levels always come back normal, even when I think they are off because I feel awful.

I don't know of any family members with celiac disease as no-one has ever ben tested to my knowledge, my mother was adopted, so medical history on her side in not known.

 

I'm also in Australia, anyone here from Melbourne?

cyclinglady Grand Master

I have Hashi's (hypo). From what I have read, gluten-free is supposed to help the thyroid. Let's hope it works for you! I am the first in my family to get a diagnosis of celiac disease.

We have an International section on celiac.com and many Austrialians belong to the forum. Check it out!

  • 4 weeks later...
SuzieQ1234 Newbie

Bit of an update. I have been and had the gene test done and I do carry one of the genes. So I need to eat gluten again for 6 weeks to get the biopsy done. Not sure what the outcome will be.

 

I also found out I have Hashimotos as well, so gluten is not a friend of that either.

squirmingitch Veteran

Make sure they take a minimum of 6 biopsies!!!! The intestine is the size of a tennis court if you were to lay it all out flat so it's imperative they take 6 biopsies otherwise they can miss damage due to the sheer vastness.

  • 1 month later...
SuzieQ1234 Newbie

Just came back to update. Had the biopsy done yesterday. All the pictures appeared to be normal, but just have to wait for biopsy results.

  • I'm glad I didn't have to do it for much longer, 6 weeks and I feel dreadful! My Hashimoto's antibodies were well over range, so that is probably not helping things. Can't wait to start feeling better!!

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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

Well you can go gluten free now at least. Kudos for sticking with it for 6 weeks; I know it wasn't easy.

They usually can't see the damage with the scope; that's why biopsies are necessary. Let us know how they turn out please.

cyclinglady Grand Master

Waiting is so hard!  ?.  Visually, my doctor said I looked okay, but my biopsies revealed a Marsh Stage IIIB (moderate to severe damage).   Keep us posted and hang in there!  

Archived

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


  • 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
      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…
    • Ginger38
      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
      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...