Jump to content
  • 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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

    2. - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

    3. - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Blood Test for Celiac wheat type matters?

    4. - jenniber replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      5

      Celiac support is hard to find

    5. - RMJ replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      need help understanding testing result for Naked Nutrition Creatine please

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,125
    • Most Online (within 30 mins)
      7,748

    AndreaY
    Newest Member
    AndreaY
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      Wheatwacked, are you speaking of the use of potassium bromide and and azodicarbonamide as dough modifiers being controlling factor for what? Do you refer to celiac reactions to gluten or thyroid disease, kidney disease, GI cancers? 
    • Scott Adams
      Excess iodine supplements can cause significant health issues, primarily disrupting thyroid function. My daughter has issues with even small amounts of dietary iodine. While iodine is essential for thyroid hormone production, consistently consuming amounts far above the tolerable upper limit (1,100 mcg/day for adults) from high-dose supplements can trigger both hyperthyroidism or hypothyroidism, worsen autoimmune thyroid diseases like Hashimoto's, and lead to goiter. Other side effects include gastrointestinal distress. The risk is highest for individuals with pre-existing thyroid conditions, and while dietary iodine rarely reaches toxic levels, unsupervised high-dose supplementation is dangerous and should only be undertaken with medical guidance to avoid serious complications. It's best to check with your doctor before supplementing iodine.
    • Wheatwacked
      In Europe they have banned several dough modifiers potassium bromide and and azodicarbonamide.  Both linked to cancers.  Studies have linked potassium bromide to kidney, thyroid, and gastrointestinal cancers.  A ban on it in goes into effect in California in 2027. I suspect this, more than a specific strain of wheat to be controlling factor.  Sourdough natural fermentation conditions the dough without chemicals. Iodine was used in the US as a dough modifier until the 1970s. Since then iodine intake in the US dropped 50%.  Iodine is essential for thyroid hormones.  Thyroid hormone use for hypothyroidism has doubled in the United States from 1997 to 2016.   Clinical Thyroidology® for the Public In the UK, incidently, prescriptions for the thyroid hormone levothyroxine have increased by more than 12 million in a decade.  The Royal Pharmaceutical Society's official journal Standard thyroid tests will not show insufficient iodine intake.  Iodine 24 Hour Urine Test measures iodine excretion over a full day to evaluate iodine status and thyroid health. 75 year old male.  I tried adding seaweed into my diet and did get improvement in healing, muscle tone, skin; but in was not enough and I could not sustain it in my diet at the level intake I needed.  So I supplement 600 mcg Liquid Iodine (RDA 150 to 1000 mcg) per day.  It has turbocharged my recovery from 63 years of undiagnosed celiac disease.  Improvement in healing a non-healing sebaceous cyst. brain fog, vision, hair, skin, nails. Some with dermatitis herpetiformis celiac disease experience exacerbation of the rash with iodine. The Wolff-Chaikoff Effect Crying Wolf?
    • jenniber
      same! how amazing you have a friend who has celiac disease. i find myself wishing i had someone to talk about it with other than my partner (who has been so supportive regardless)
    • RMJ
      They don’t give a sample size (serving size is different from sample size) so it is hard to tell just what the result means.  However, the way the result is presented  does look like it is below the limit of what their test can measure, so that is good.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.