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:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

How Many People Self-Diagnose?


JenniBea

Recommended Posts

Sage122 Explorer

I'd definitely suggest going to see a doctor. Don't self diagnose.

I was one of them. Gluten was giving me so many issues that I stopped eaiting it. Gluten free made me feel Better so I just assumed I was "allergic." then I learned about celiac and stuff. But by then it was too late to get tested. I had already been gluten free for months.

I went to an allergist and he said that if I felt Better gluten free, then I should just assume I am gluten sensitive. There are no tests or stuff I can do but assume. So I could indeed be a celiac, I guess I'll never know.

Long story short, don't self diagnose

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



benXX Rookie

"As my body doesn't know if I'm glutened on purpose or by accident"

clearly the keyword is "body" and "my body doesn't know" has not the same meaning as "I don't know"

And it is about knowing the difference between "by accident or on purpose"

Link to comment
Share on other sites
benXX Rookie

The topic is "How Many People Self-Diagnose". :D

On this forum it looks like there are many people self-diagnosed and that they are very active.

Link to comment
Share on other sites
mushroom Proficient

I believe most people self-diagnose due to frustration with the medical profession and their inability to do the job. It doesn't take much math to calculate that major symptoms after consumption of gluten which resolve when gluten is withdrawn means you have a problem with gluten (or wheat, etc.). Heck, a lot of people had not in the past even heard of celiac or sometimes even gluten when they stopped eating gluten-containing products. It was not a diagnosis but a life-saving move. This is not so true today with the much greater general awareness. In fact, everyone is getting sick to death of even hearing about celiac, let alone gluten consumption or avoidance. :rolleyes:

Frankly, IMHO, if someone is unable to refrain from eating something that harms them because they don't have a formal diagnosis, they have very little respect for their body and their own judgment. While the diagnosis is a useful piece of information, it is not so useful as to make yourself ill to obtain it once you know the facts and especially once you realize you have been misled by the medical professionals..

Link to comment
Share on other sites
Jestgar Rising Star

On this forum it looks like there are many people self-diagnosed and that they are very active.

I think that many people who self diagnose do so because they have become very very ill. They stop eating gluten and start to feel better. What's wrong with that? Also, I disagree with your statement of having a doctor's opinion is motivating to stay on the diet. I really don't care what a doctor tells me, and I have no trouble staying on the diet. Perhaps if you've gotten to the point of extreme illness, you end up with a lot of other issues, and tend to stay in support groups such as this.

Link to comment
Share on other sites
Skylark Collaborator

Not only for me, for most. Just in human nature that life is easier without doubts. And there is a lot of positive power from doctors, employers, friends, family-members taking your celiac to be a fact.erefore missed to be diagnosed and to find out the benefits of being properly diagnosed.

How dare you presume to speak for "most"? You speak for yourself and no other. Please stop presenting your opinions as the majority. I'm getting angry now because you are acting as if a self-diagnosis is somehow inferior or less accurate than one bestowed by a dude in a white coat who still puts his pants on one leg at a time in the morning. Celiac tests have a 20% false negative rate, 1 in 5 shot that even if you challenge and risk your health and well-being by eating poison you won't get a positive result.

And what are these magical benefits of being "diagnosed" (as if I can't figure my celiac disease out for myself perfectly well)? Please enlighten us. My family understands that I have autoimmunity, my friends eat where I need, my doctors consider me celiac and give me the care I need. A so-called formal diagnosis would change absolutely nothing for me.

In fact, in the US getting diagnosed can be detrimental because it becomes a pre-existing condition that can get you declined coverage or bumped into a more expensive insurance bracket. Hardly a compelling reason to poison oneself for a piece of paper that tells you what you already know.

Link to comment
Share on other sites
benXX Rookie

In fact, in the US getting diagnosed can be detrimental because it becomes a pre-existing condition that can get you declined coverage or bumped into a more expensive insurance bracket.

Isn't that fraudulent, withholding information when applying for an insurance?

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

Isn't that fraudulent, withholding information when applying for an insurance?

Just a moment here, please.

You are twisting her words. This is not what Skylark was talking about at all. You have gone so completely off topic now.

The topic is about how many people self-diagnose. Lisa has already pointed this out once.

It is not about why you shouldn't self-diagnose. EVERYONE already knows this. They have all tried to obtain a diagnosis and been let down by the medical community in some way or another or tested negative and still suffer. I would relate my own experience in trying to get DXed for 3 years, but they have already heard it. Self-diagnosis is sometimes the only way for people to get well.

I refer you to the Board Rule #5 to remain on topic.

Link to comment
Share on other sites
jerseyangel Proficient

I think that many people who self diagnose do so because they have become very very ill. They stop eating gluten and start to feel better. What's wrong with that? Also, I disagree with your statement of having a doctor's opinion is motivating to stay on the diet. I really don't care what a doctor tells me, and I have no trouble staying on the diet. Perhaps if you've gotten to the point of extreme illness, you end up with a lot of other issues, and tend to stay in support groups such as this.

I agree, in my opinion it boils down to this.

That being said, every person needs to do what they feel is best for them.

Link to comment
Share on other sites
Jestgar Rising Star

Isn't that fraudulent, withholding information when applying for an insurance?

Not at all. If beets give you heartburn, so you just avoid them, you wouldn't put that on your insurance application.

Link to comment
Share on other sites
roxieb73 Contributor

Your doctor is splitting hairs. You can be celiac with DQ1 and some experts argue that gluten-sensitive lichen planus is a skin manifestation of celiac. If rash goes away off gluten I'd consider myself celiac.

Thank you Skylark! I guess I am just a little scared to say offically that I have celiac. I am Gluten free almost 2 weeks now and already starting to feel better. My sister in law was amazed yesterday at how much better I am in such a short period of time. She is a nurse. I do have doctor approval to do Gluten free diet and he put me on a ton of vitamins. I guess he is just going by the book. He obviously sees that Gluten is the problem or he wouldn't do all the testing and tell me to go gluten free. I don't need the offial diagnosis as long as I get better I am happy. ;)

Link to comment
Share on other sites
Skylark Collaborator

Thank you Skylark! I guess I am just a little scared to say offically that I have celiac. I am Gluten free almost 2 weeks now and already starting to feel better. My sister in law was amazed yesterday at how much better I am in such a short period of time. She is a nurse. I do have doctor approval to do Gluten free diet and he put me on a ton of vitamins. I guess he is just going by the book. He obviously sees that Gluten is the problem or he wouldn't do all the testing and tell me to go gluten free. I don't need the offial diagnosis as long as I get better I am happy. ;)

There are people with neurological autoimmunity, gluten-sensitive psoriasis, and gluten-sensitive rheumatoid arthritis who don't get labeled celiac either. It's pretty reasonable to argue that all the forms of gluten-sensitive autoimmunity are different manifestations of celiac disease. I think it's only a matter of time before the definition of celiac expands to include you. ;)

Call yourself whatever feels comfortable. I find telling people I'm celiac simpler than trying to explain why the medical system failed so badly that I was never tested except in childhood when I was already eating gluten-free out of necessity.

Link to comment
Share on other sites
roxieb73 Contributor

There are people with neurological autoimmunity, gluten-sensitive psoriasis, and gluten-sensitive rheumatoid arthritis who don't get labeled celiac either. It's pretty reasonable to argue that all the forms of gluten-sensitive autoimmunity are different manifestations of celiac disease. I think it's only a matter of time before the definition of celiac expands to include you. ;)

Call yourself whatever feels comfortable. I find telling people I'm celiac simpler than trying to explain why the medical system failed so badly that I was never tested except in childhood when I was already eating gluten-free out of necessity.

I completely agree with you and someday I know I will be in the Celiac umbrella. Until then I will be content to tell people I have an Autoimmune Gluten Intolerance and get really sick if I eat it.

I am just so happy to have a reason I am so sick. Not just a reason but a way to FIX the problem. I am actually looking forward to my crusie in 8 weeks! 2 weeks ago I was looking for someone to take my place. I was actually willing to give up my crusie for free to someone so my son would have a good time! :( I start PT this week with my hottie Physical Therapist who promised me he would help me rebuild my muscles in time for my trip. :D

Link to comment
Share on other sites
Chad Sines Rising Star

I agree with the previous two posters. The label is too constricted now, IMO. I do believe as more understanding of the disease develops, there will be a more inclusive definition of the diagnosis. This lack of inclusion is what leads many of us to have no choice but to self diagnose. My single fail of one blood test shut down all future discussions and I only found out the false negatives after reading these forums.

This disease leads to more self diagnoses because it is so easy to self test with a gluten-free diet. For me it was just a "who knows" trial and two days later my life changed.

Link to comment
Share on other sites
roxieb73 Contributor

I agree with the previous two posters. The label is too constricted now, IMO. I do believe as more understanding of the disease develops, there will be a more inclusive definition of the diagnosis. This lack of inclusion is what leads many of us to have no choice but to self diagnose. My single fail of one blood test shut down all future discussions and I only found out the false negatives after reading these forums.

This disease leads to more self diagnoses because it is so easy test with a gluten-free diet. For me it was just a "who knows" trial and two days later my life changed.

Thank you Chad! Isn't it amazing how much difference it makes. Thank you for sharing and I am so glad you didn't let the "It's negative" statment stop you from trying a gluten free diet.

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Help Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to SuzanneL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test

    2. - SuzanneL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test

    3. - Scott Adams replied to Braver101's topic in Coping with Celiac Disease
      2

      Constant sweating with celiac disease

    4. - Scott Adams replied to Julie Riordan's topic in Traveling with Celiac Disease
      2

      Any ideas for travelling

    5. - trents replied to Julie Riordan's topic in Traveling with Celiac Disease
      2

      Any ideas for travelling


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,495
    • Most Online (within 30 mins)
      7,748

    Zofosho
    Newest Member
    Zofosho
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
    • Scott Adams
      I'm sorry to hear about what you're going through. It must be really frustrating and uncomfortable. Have you talked to your healthcare provider about these sudden sweating episodes? It might be helpful to discuss this with them to rule out any other underlying issues or to see if there are specific strategies or treatments that can help manage this symptom. Additionally, staying hydrated and wearing breathable clothing may provide some relief. 
    • Scott Adams
      I am not sure where you are going, but we have articles in this section which may be helpful: https://www.celiac.com/celiac-disease/gluten-free-travel/ 
    • trents
      There are supplements available that can help breakdown minor amounts of gluten such as you might experience with cross contamination when dining out and you order gluten free items from a menu. But they will not help when larger amounts of gluten are consumed. One such product that many on this forum attest to as having helped them in this regard is GliadinX. The inventor of GlidinX is one our forum sponsors so you should know that.
×
×
  • Create New...