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

New and waiting gastroenterologist appointment

AM63

Recommended Posts

AM63 Rookie
AM63
Posted

Hi all I am so happy to have found this site,I am waiting for a full diagnosis ,I have had problems for a lot of years but never once did I think I could be gluten intolerant or ceoliac.    I was told many years ago by a GP that I had IBS ( no testing done) and would just have to deal with the symptoms.So I went away and did just that, not always very well. In Jan this year I had 2 weeks of very bad stomach symptoms,I ended up at gp and was told it was a virus. After I went back to work I still had unpleasant symptoms of  diarrhoea,Vomiting,,awfle fatigue so bad I had to drag myself around,I got migraine headaches, bloating joins pains I could go on. It got so serve that I want back to gp I had  lots of blood tests, all normal and was signed off of work, I was given some medication, which did nothing but was told to keep taking,I then had a problem with the anti diarrhoea med as I get an allergic reaction to it.and was then given codeine which helped the diarrhoea but knocked me out. I then had a colonoscopy with neg results, so told again IBS , to have to deal with it the best I could all this time I was off work. I went away defeated. I gave up the IBS meds as they did nothing to help. I went one last time to my gp and saw the advanced nurse practitioner,she straight away said you need a gastroenterologist appointment ,stop gluten and come back in two weeks ,what amazing results I had I started to feel better very soon,within 4 weeks I am back on a phased return to work and awaiting my hospital appointment. Sorry for the long explanation,but I wanted to say do not give up when you know the diagnosis is not fitting your symptoms,it has taken a very long while for me but I now feel more positive,even though I have a long way to go ,and still have fatigue and headaches. I will also need to start eating gluten again I know,but that is necessary for the diagnosis , ,and I will deal with the symptoms when they start .

 

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

Celiac.com Sponsor (A8-M):


frieze Community Regular
frieze
Posted

if you have gone gluten free, it is too late for testing.  you need to be eating gluten right up to the testing, all testing.

AM63 Rookie
AM63
Posted
  • Author

Hi thank you for this , but as there are no appointments available for the clinic to see the gastroenterologist my gp has decided that it is best if I stay off of gluten until I have a date for the clinic, which could be quite a wait once I have the date I will start gluten again as my gp has advised I did question this as I have read up about intelorence and Coeliac,but gp said due to circumstances to do as she advised. Thanks again for the reply

Jmg Mentor
Jmg
Posted

Welcome! You've found a great community, there's a lot of useful info and support here from people who have been through very similar experiences to your own.  I hope you find it as useful as I have. :)

Congratulations for sticking up for yourself and finally making some progress with the medical establishment. It's not easy. 

4 minutes ago, AM63 said:

Hi thank you for this , but as there are no appointments available for the clinic to see the gastroenterologist my gp has decided that it is best if I stay off of gluten until I have a date for the clinic, which could be quite a wait once I have the date I will start gluten again as my gp has advised I did question this as I have read up about intelorence and Coeliac,but gp said due to circumstances to do as she advised. Thanks again for the reply

I know others here will share my frustration as I read your story, because it's happened again and again. On the positive side, you may well have found the cause, on the negative, like me and many others you did it by removing gluten prior to diagnosis which makes it more difficult. As you know you will have to resume consuming gluten for probably 6-8 weeks for diagnosis. It's good that you have such a positive attitude as this challenge can be tough, once off gluten you can react differently to reintroducing it. 

One suggestion is to keep a food diary, noting what you eat, when and how you feel. If you do this prior to the test period you'll be able to see what was clearing up beforehand and what happened once you reintroduced it. This can be really useful, particularly if you test negative, because your own experience can help motivate you to stick to the diet.

All that's to come however and if you post here you'll get lots of support when you need it. For now, enjoy feeling better and have a look at some of the threads on healing the gut and countering malabsorbtion - even on the challenge you can make sure you're eating as well as possible and giving your body the best chance of healing. 

Best of luck! 

AM63 Rookie
AM63
Posted
  • Author
3 hours ago, Jmg said:

Welcome! You've found a great community, there's a lot of useful info and support here from people who have been through very similar experiences to your own.  I hope you find it as useful as I have. :)

Congratulations for sticking up for yourself and finally making some progress with the medical establishment. It's not easy. 

I know others here will share my frustration as I read your story, because it's happened again and again. On the positive side, you may well have found the cause, on the negative, like me and many others you did it by removing gluten prior to diagnosis which makes it more difficult. As you know you will have to resume consuming gluten for probably 6-8 weeks for diagnosis. It's good that you have such a positive attitude as this challenge can be tough, once off gluten you can react differently to reintroducing it. 

One suggestion is to keep a food diary, noting what you eat, when and how you feel. If you do this prior to the test period you'll be able to see what was clearing up beforehand and what happened once you reintroduced it. This can be really useful, particularly if you test negative, because your own experience can help motivate you to stick to the diet.

All that's to come however and if you post here you'll get lots of support when you need it. For now, enjoy feeling better and have a look at some of the threads on healing the gut and countering malabsorbtion - even on the challenge you can make sure you're eating as well as possible and giving your body the best chance of healing. 

Best of luck! 

 

AM63 Rookie
AM63
Posted
  • Author

Hi thank you so much for your support,it is good to find somewhere you can be totally honest about symptoms and feelings where it's not an unwanted subject. I wish I could speed up appointment ,but I do understand why not so doing the best I can with how I am at the moment,and will deal with gluten diet when it happens and just hope if I am very bad again work will be considerate.Once the gastroscopy is over with I will be able to move forward.That may be a while yet so will keep as positive as I can.

Jmg Mentor
Jmg
Posted

If you're anything like me you may find that a lot of other things clear up or improve that you would never have associated with gluten. My main symptoms were, I thought, neurological, but as my diet changed I found the backache I'd 'managed' for 20 years disappeared, eyesight issues went, chest pains etc etc. 

There's things you can do in advance of seeing the consultant also. It may be that the dr's have already checked vitamin levels, but you may want to get a good multivitamin and B supplement and see whether taking those helps? I also tried to include probiotics and bone stock/broth to heal my stomach. If you can get as healthy as you can now it may help you if or when you do a gluten challenge. :)

 

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

Celiac.com Sponsor (A8-M):


AM63 Rookie
AM63
Posted
  • Author

Hi thanks for the advice I will definitely get some vitamins and probiotics. Not sure about the broth yet.thanks again for your advice,I just checked again this week and no appointments available as yet so going to be a lo g process.

 

Archived

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

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


  • Member Statistics

    • Total Members
      127,936
    • Most Online (within 30 mins)
      7,748
    Sary Diab
    Newest Member
    Sary Diab
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Nicbent35
      3 year old gluten intolerance?

      By Nicbent35 · Posted

      Well I had a moment yesterday morning where I accidentally gave her gluten. She wanted what I was eating and I forgot and let her have a few bites of toast. It was a really bad night last night with her behavior. Will a few bites of bread influence their behavior that much or could it just be a coincidence?
    • Scott Adams
      How many grams is there in one slice of wheat bread?

      By Scott Adams · Posted

      The first set of results show two positive results for celiac disease, so at the very least it looks like you could have it, or at the least NCGS.   Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.      
    • Scott Adams
      Confused with test results

      By Scott Adams · Posted

      Elevated tissue transglutaminase IgA (tTG-IgA) levels are highly specific for celiac disease, and they are a key biomarker used in its diagnosis. However, there are some rare instances where elevated tTG-IgA levels have been reported in conditions other than celiac disease. While these cases are not common, they have been documented in the literature. Below are some examples and references to studies or reviews that discuss these scenarios:  1. Non-Celiac Gluten Sensitivity (NCGS)    - NCGS typically does not cause elevated tTG-IgA levels, as it is not an autoimmune condition. However, some individuals with NCGS may have mild elevations in tTG-IgA due to intestinal inflammation or other factors, though this is not well-documented in large studies.    - Reference: Catassi, C., et al. (2013). *Non-Celiac Gluten Sensitivity: The New Frontier of Gluten-Related Disorders*. Nutrients, 5(10), 3839–3853. [DOI:10.3390/nu5103839](https://doi.org/10.3390/nu5103839)  2. Autoimmune Diseases    - Elevated tTG-IgA levels have been reported in other autoimmune conditions, such as type 1 diabetes, autoimmune hepatitis, and systemic lupus erythematosus (SLE). This is thought to be due to cross-reactivity or polyautoimmunity.    - Reference: Sblattero, D., et al. (2000). *The Role of Anti-Tissue Transglutaminase in the Diagnosis and Management of Celiac Disease*. Autoimmunity Reviews, 1(3), 129–135. [DOI:10.1016/S1568-9972(01)00022-3](https://doi.org/10.1016/S1568-9972(01)00022-3)  3. Chronic Liver Disease    - Conditions like chronic hepatitis or cirrhosis can sometimes lead to elevated tTG-IgA levels, possibly due to increased intestinal permeability or immune dysregulation.    - Reference: Vecchi, M., et al. (2003). *High Prevalence of Celiac Disease in Patients with Chronic Liver Disease: A Role for Gluten-Free Diet?* Gastroenterology, 125(5), 1522–1523. [DOI:10.1016/j.gastro.2003.08.031](https://doi.org/10.1016/j.gastro.2003.08.031)  4. Inflammatory Bowel Disease (IBD)    - Some patients with Crohn’s disease or ulcerative colitis may have elevated tTG-IgA levels due to intestinal inflammation and damage, though this is not common.    - Reference: Walker-Smith, J. A., et al. (1990). *Celiac Disease and Inflammatory Bowel Disease*. Journal of Pediatric Gastroenterology and Nutrition, 10(3), 389–391. [DOI:10.1097/00005176-199004000-00020](https://doi.org/10.1097/00005176-199004000-00020)  5. Infections and Parasites    - While infections (e.g., giardiasis) are more commonly associated with false-positive tTG-IgA results, chronic infections or parasitic infestations can sometimes lead to elevated levels due to mucosal damage.    - Reference: Rostami, K., et al. (1999). *The Role of Infections in Celiac Disease*. European Journal of Gastroenterology & Hepatology, 11(11), 1255–1258. [DOI:10.1097/00042737-199911000-00010](https://doi.org/10.1097/00042737-199911000-00010)  6. Cardiac Conditions    - Rarely, heart failure or severe cardiovascular disease has been associated with elevated tTG-IgA levels, possibly due to gut ischemia and increased intestinal permeability.    - Reference: Ludvigsson, J. F., et al. (2007). *Celiac Disease and Risk of Cardiovascular Disease: A Population-Based Cohort Study*. American Heart Journal, 153(6), 972–976. [DOI:10.1016/j.ahj.2007.03.019](https://doi.org/10.1016/j.ahj.2007.03.019)  Key Points: - Elevated tTG-IgA levels are highly specific for celiac disease, and in most cases, a positive result strongly suggests celiac disease. - Other conditions causing elevated tTG-IgA are rare and often accompanied by additional clinical findings. - If celiac disease is suspected, further testing (e.g., endoscopy with biopsy) is typically required for confirmation. If you’re looking for more specific studies, I recommend searching PubMed or other medical databases using terms like "elevated tTG-IgA non-celiac" or "tTG-IgA in non-celiac conditions." Let me know if you’d like help with that!
    • MaryMJ
      Water filters and gluten

      By MaryMJ · Posted

      I called zero water and they state their filters do not contain gluten or gluten containing ingredients. 
    • trents
      What should I do with these test results?

      By trents · Posted

      I agree. Doesn't look like you have celiac disease. Your elevated DGP-IGG must be due to something else. And it was within normal at that after your gluten challenge so it is erratic and doesn't seem to be tied to gluten consumption.
×
×
  • Create New...