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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,912
    • Most Online (within 30 mins)
      7,748

    westman3d
    Newest Member
    westman3d
    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

    • Rogol72
      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.