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

Anxiously waiting


Kal

Recommended Posts

Kal Newbie

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

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

Ditto what Christiana said.

Kal Newbie

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

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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,905
    • Most Online (within 30 mins)
      7,748

    Croissantl0v3r
    Newest Member
    Croissantl0v3r
    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
      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Xravith
      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
×
×
  • 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.