Jump to content

  • 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):

Anxiously waiting

Kal

Recommended Posts

Kal Newbie
Kal
Posted

Hi all.

Ive just had my blood test results which showed a high level for coeliacs,originally i went to doctor coz my bowel movements had changed and haven't been normal for over a month and i am very tired,the tiredness i assumed was low iron and my tummy/bowel issues well i thought IBS Maybe or a bug as ive not really had issues before,anyway she has put me on a wait list to have a endoscopy done. Im so so confused as i didn't expect i may be coeliac,my symptoms come and go so on a day im good i think sweet my issues are resolved but then they come back so they are not consistent which makes me wonder if it is coeliac or not,but my tiredness,headaches,shortness of breath,tummy gurgling,different bowel movements,feeling nauseous are all symptoms that come at different times. The test i had was for gliadin IgG which was 20 but should be 7 or lower, i guess im just anxious to wait who knows how long for the endoscopy coz i would like to try and cut out gluten but the dr said not to till the procedure is done. P.s im in australia so not sure if things are different here.

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

Celiac.com Sponsor (A8-M):


cristiana Veteran
cristiana
Posted

Welcome to the Forum, Kal.

I think we have quite a few Australian coeliacs on board here so hopefully someone will be able to chime in about how long it will take for your endoscopy.

I'm in Britain and here it depends greatly where you live in the country - it can take many, many weeks,  so some people go private if they are feeling very poorly and don't like the thought of the wait.   

You will find this website a fantastic resource in the coming months.   I am sure you will have found this one too which is Oz specific:

Open Original Shared Link

Your doctor is absolutely right - you will need to keep eating gluten until diagnosis.  In the UK I was told two slices of bread a day would be enough.   Instead I decided that I would eat everything I knew that would be off limits after my diagnosis and I would miss!

On a positive note, I now find most of the things on that list are being manufactured gluten free by various supermarkets so things are getting easier!:)

If you are anemic speak to your doctor about iron/B12 supplementation.   I was started on these supplements long before they knew what was wrong with me and it helped tremendously with my fatigue and anxiety.   Do make sure they keep an eye on your levels though as I was told I should stop taking iron recently - one can have too much of a good thing.

Keep us posted!

 

squirmingitch Veteran
squirmingitch
Posted

Ditto what Christiana said.

Kal Newbie
Kal
Posted
  • Author

Thanks heaps. I will def be going private if the wait is too long. I have done a little research but i thought a gluten intolerance and coeliac was the same lol. My iron levels are just below average apparently but she said not bad enough for me to be this tired.

GFinDC Veteran
GFinDC
Posted

You might ask your doctor if they have a standby/wait list Kal.  Some do that and then they can fit in people if there are cancellations or no-shows.

Kal Newbie
Kal
Posted
  • Author

I'll check withthe Doctor tomorrow. So weird coz i feel ok today. In a weird way i hope the endoscopy is positive at least then I'll know what the issue is lol.

Archived

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

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

  • Member Statistics

    • Total Members
      134,077
    • Most Online (within 30 mins)
      10,442
    terrificterry
    Newest Member
    terrificterry
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Edy's and Dreyer's ice cream

      By knitty kitty · Posted

      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      Edy's and Dreyer's ice cream

      By Aretaeus Cappadocia · Posted

      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      EDG 3 years ago fine, now it shows focal villous blunting,

      By Aretaeus Cappadocia · Posted

      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...