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

Coping With Mis-diagnosis

GEF

By GEF
in Coping with Celiac Disease

Recommended Posts

GEF Explorer
GEF
Posted

I'm writing this because perhaps there is someone else who's hearing the same thing about those with a prior diagnosis that's being reversed.

I have a co-worker, with whom I happened to share the gluten-intolerance issue with who mentions to me that his mother was diagnosed with this about 15 years ago. (here I am thinking, wow...) Then for some strange reason a doctor tells her that she has never had this problem, she should never have gone gluten-free. So, guess what? She's now off the diet after all of those years. ok... :blink:

Then, my grandmother mentions that one of her friends had the same thing.. years and years on the diet, only for a doctor to reverse the diagnosis. She is now also off the gluten-free diet. ok... :blink:

Shame on me for not asking what the issue "really" was, but I didn't think about it until later. Here I am talking with my family and friends about the change in my life and I'm hearing all of this refuted information... that's why I put this in the "Coping" section rather than the "Doctors" section because they all make mistakes (they're human like us). Believe me, this by no means will deter me from going gluten-free and sticking strictly to it. I know I have a problem with gluten... there's no doubt in my mind.

I just had to get this off my chest, as I've heard this issue twice in the past month! I wonder if the 2nd doctors in these cases knew that if their patients were on a gluten-free diet, the blood & biopsy wouldn't show anything unusual. I wonder what led the 1st doctors to give the diagnosis in the first place (I'm assuming it was more difficult then to get a diagnosis than now) What are these doctors doing? Maybe this should be in the "Doctors" section after all... :blink:

Gretchen

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

Celiac.com Sponsor (A8-M):


burdee Enthusiast
burdee
Posted

That's why they call it a medical 'practice'. They are all still practicing and WE are their guinea pigs. :lol: Maybe someday they will get it right. Sometimes practice makes perfect. But I'm not so sure with some doctors who are working with outdated celiac 'profiles' and other celiac myths and misinformation. <_<

Fortunately we know our own bodies better than any doctor can tell us with all their sophisticated tests. I still think reduction of symptoms following a gluten-free diet is a pretty good diagnostic test in itself. However, my second choice is Enterolab. :D

BURDEE

tarnalberry Community Regular
tarnalberry
Posted

I don't know what to think of that. It seems... backwards. Yet another sign that a lot more education is needed for doctors who are going to toy in this field. (Though, quite frankly, any doctor who's been through basic bio-chemistry ought to be able to deduce from first principles that your test will be negative if you haven't been eating gluten, so there's really no excuse, even with a lack of education on the specifics of the disease.)

Guest PastorDave
Guest PastorDave
Posted

Celiac is one of the most mis-diagnosed problems in North Amercia. The reason is that Doctors here thought of it as a "rare" disorder. NOW they are starting to realize how common it is and are working harder to understand it. I think that if we were in Europe (where Celiac has been understood for longer) we wouldn't be hearing as much about the mistakes the doctors make. Sure they are human, and will make mistakes, but we will see less, I think, as the doctors realize how common Celiac is.

Mydnyt Newbie
Mydnyt
Posted
Celiac is one of the most mis-diagnosed problems in North Amercia. The reason is that Doctors here thought of it as a "rare" disorder. NOW they are starting to realize how common it is and are working harder to understand it. I think that if we were in Europe (where Celiac has been understood for longer) we wouldn't be hearing as much about the mistakes the doctors make. Sure they are human, and will make mistakes, but we will see less, I think, as the doctors realize how common Celiac is.

You should try being dignosed over in Australia - only how many years behind? lol

A thought on the diagnosis reversal though... is it possible that because they have been gluten-free for so long that they no longer have the symptoms on being tested (fairly logical if gluten-free), but that if they return to eating gluten it'll have to be reversed again?

GEF Explorer
GEF
Posted
  • Author

That's what I'm thinking, Mydnyt. I don't know what upsets me more... the celiac diagnosis loss of credibility or the fact that these people might still be celiac and are now hurting their bodies.

As beautiful as Australia is, I sure glad I'm not there through the diagnosis.

Mydnyt Newbie
Mydnyt
Posted

I'd just hope that they get themselves retested after being on gluten for a while and not wait for any serious symptoms.

Yeah, a bit behind everyone sometimes... but I've been lucky. Only 5 yrs before a new GP figured this out, and the only other prob I have my old GP picked up straight away :)

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

Celiac.com Sponsor (A8-M):


Canadian Karen Community Regular
Canadian Karen
Posted

I have had a diagnosis flip flop since 1989.

I was originally diagnosed with Celiac Disease back in 1989. After a year on the diet with no improvement, the dr. changed his diagnosis to Crohns. Well, 2 years ago, the bloodwork and biopsy confirmed Celiac Disease 100%. So I have been back and forth, back and forth.... Oh well, at least now I know 100% for sure what it is and just have to give it more time than 1 year (almost 2 yrs. on the diet and still no change in the diarrhea)......

Karen

tarnalberry Community Regular
tarnalberry
Posted

Karen, have you determined if you have other food intolerances that are contributing to the problem?

Canadian Karen Community Regular
Canadian Karen
Posted

Right now he has me on also a dairy free/sugar free/caffeine free/soy free diet along with the gluten free...... at least until I have the colonoscopy on September 28th. The results of the blood tests will tell us which way to go from here.... he is checking for numerous things, i.e. collagenous colitis....

I have to admit that since I have been dairy free, the gas and bloating have just about disappeared.... we just can't get rid of this darn diarrhea!!!!

Karen

Guest gillian502
Guest gillian502
Posted

I'm right there with ya, Karen! I can't get rid of mine, either! Being gluten-free helped me gain all my weight back, and added a little energy, but nothing else has changed at all. My antibodies are still high and I still have lower back pain, abdominal bloating and pain, and a rapid heart rate. Being gluten-free wasn't the cure I was hoping for.

Archived

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

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


  • Member Statistics

    • Total Members
      132,217
    • Most Online (within 30 mins)
      7,748
    Sutto
    Newest Member
    Sutto
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Guinness, can you drink it?

      By Scott Adams · Posted

      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Gluten Issues and Vitamin D

      By MogwaiStripe · Posted

      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Guinness, can you drink it?

      By Butch68 · Posted

      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Scott Adams · Posted

      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  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.
×
×
  • 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.