Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

Molecular Dude

How Common Is Self-diagnosis?

Rate this topic

Recommended Posts

Greetings to all,

I've been gluten-free for about 4 years now, but have never had a formally confirmed diagnosis of celiac or gluten-sensitivity. My wife and I just figured it out on our own back then, and after I started to feel better, I found that every time I "cheated", I paid the price. So, now I never intentionally cheat, and as a result, none of the standard tests will ever be able to confirm my self-diagnosis (unless I first want to make myself miserable for a good while, which seems ridiculous).

Anyone else have a similar experience?

Thanks

Share this post


Link to post
Share on other sites

Oh yes, many of us. There's a very wide range here all along the spectrum between the very formal "blood work, biopsy, follow-up biopsy" to "totally self-diagnosed by diet, no doctor ever involved". (You can see where I am from my sig below.)

Welcome to the board!

Happy gluten-free eating! :)

Share this post


Link to post
Share on other sites

Yeah, that's kind of my story too. While it hasn't been 4 years, I did an elimination diet on my own and don't really have any desire to be diagnosed if I have to go through a few months of feeling bad just to get an official diagnosis. Most people on here will tell you that the proof is in your response to the diet, and I totally agree!

Share this post


Link to post
Share on other sites

Me too! and I know about 2 others as well. My reactions now to even the smallest amount of wheat is horrible. It's just someone suggests the diet and you try it an never want to go back!

Share this post


Link to post
Share on other sites
...So, now I never intentionally cheat, and as a result, none of the standard tests will ever be able to confirm my self-diagnosis (unless I first want to make myself miserable for a good while, which seems ridiculous).

Anyone else have a similar experience....

I am self diagnosed, but my sister is diagnosed with celiac and chrone's so I had some help in figuring it all out. gluten-free has been the best thing I ever did for my health, without a doubt. I suffered bipolar my whole life and it suddenly went away about 3 days gluten-free. But wait, bipolar doesn't just go away, or does it? Interestingly, when I accidentally consume a little gluten, the bipolar comes back to visit for a few days. Reason enough for me to live gluten-free. Interesting link below:

http://www.glutenfreeforum.com/index.php?showtopic=14539

Share this post


Link to post
Share on other sites

After being told I was a hypochondriac, and nothing was really wrong with me (and at the same time being really ill for 50 years), I self-diagnosed myself and started the gluten-free diet. And I have no intentions of EVER going back!

My two oldest daughters and their children are gluten-free now, with amazing results in them and their kids. My youngest daughter has been gluten-free after being diagnosed by Enterolab and is finally doing well. My son and another daughter have plenty of symptoms, but choose to be in denial.

Nobody needs a doctor to confirm that certain foods make them sick, and that they feel better when avoiding these foods. I just wished I would have known what gluten was many years ago! Unfortunately, I only found out a little over two years ago, no thanks to my doctors.

Share this post


Link to post
Share on other sites

I am semi-self diagnosed. My gastroenterologist offered to do a test during an endoscopy but I, being as yet uninformed on things, refused. Wish I had allowed him to but too late. Instead, he suggested I do a 'trial run' on gluten-free diet. WOW! what a difference! My fingernails are pink instead of blue, my skin started to clear (DH, I believe), pains disappeared and so on.

I've been 66 years trying to get a sensible diagnosis. Nearly died as an infant as I couldn't tolerate any milk product, regardless of source. I have been able to consume milk products since age2 but they do make me bloated if I have too much so suspect I'm sensitive to lactose, too.

Odd thing is that I also 'react' to non-gluten grains as well as gluten ones so suspect I am sensitive to all grains, possibly. When I recover from multiple surgeries and can find a good naturopath, I'm going to have allergy testing done.

Just wish it hadn't taken so long to find out about my sensitivity to gluten etc...Guess a lot of us have 'been there, done that'.

Had to go 'off diet' for a week during a hurricane/storm due to unavailability of power/foods etc and I ended up virtually unable to walk, among other things. I'm gluten free permanently after all that agony and more!

Sondi

Share this post


Link to post
Share on other sites

I am a self diagnosed celiac too. Not a doubt in my mind. My sister and I were equally sick for years, dealing with doctors who could not figure out what was wrong with us. She became severely iron deficient, along with other vitamins and minerals and I developed panic attacks, with my deficiencies. I got divorced and was without medical insurance when she finally was diagnosed with celiac disease. Her husband found it on the internet, which was no easy task 8 yrs ago. Her doctor at the time, laughed when she asked to be tested for it, but found her to be adamant. He apologized to her when he found celiac disease and realized how truly sick she actually was with it--worse case he had ever seen! I couldn't afford to be tested at the time. After 3 months of gluten free, she convinced me to go gluten free too, she knew I was celiac too. She will be gluten free 8 yrs in March and me in July, our dad has been gluten free 3 yrs this last Nov. I have a son whom I am sure is celiac too, but his doctor tells him he doesn't look celiac, so he doesn't need to be tested! :angry: Do we have 2 heads, or what?

Share this post


Link to post
Share on other sites

I think it's pretty common. I also depends on how you classfy self diagnosis. I had done an elimination diet and found a problem with wheat. I read up on wheat allergies and came accross Celiac Disease. A huge light bulb went on over my head. I was what I would now call gluten light for about a month before I took the blood test and the antibody numbers were still significant. That along with my medical history was enough to convince me. The previous ten years of my life had read like a diagnostic manual for Celiacs with doctors unable to explain most of it. The blood test and the reaction to the diet and the anemia and GERD and what not were enough for me. The doctor would have liked to do a biopsy, but having already been through a kidney biopsy I had no desire to go through any kind of internal biopsy ever again. My rebound in the last year has been significant so I'm satisfied that I've come to the right conclusion without a biopsy.

The bottom line I think is that it's your body. If you want or need blood tests and biopsys then go for it. If you don't, if the reaction to the diet is enough just get on with your gluten free life :)

Share this post


Link to post
Share on other sites

Do all of you who self diagnosed tell people you have Celiac? Like when people ask why you can't eat something, what do you say? I feel like since I don't have a diagnosis I am making it up if I say I have celiac. It would be so much easier to say I had something real instead of saying that wheat (most people look at you like your crazy if you say gluten) makes me sick. Saying it makes me sick doesn't get through to people how sick. They say just have a little then. :angry:

I figured it out on my own too. Blood tests were negative, HLA DQ2 test was positive, all allergy blood work was negative, but an amazing response to the diet. I had symptoms I didn't even know were symptoms that went away when I went gluten free.

Can one of you who I think are smarter then a doctor diagnose me and say its celiac so I can pretend I have a diagnosis? :D

Share this post


Link to post
Share on other sites

My situation is identical to yours. I respond very negatively to gluten, but do not have a "real" diagnosis. So, I just tell people that I have celiac, or something very similar, and go from there. When they ask why I don't know for sure, I'll go through the whole explanation, if time permits. Otherwise, I'll just tell them that the tests are often inconclusive, and the end result would just be to do what I do anyway regarding diet. This usually proves satisfactory, but I'm often astounded by how difficult it is for people to realize how prevalent wheat (gluten) is in everyday food products - especially restaurant personnel!

Share this post


Link to post
Share on other sites

I have found out that most people don't know what wheat is let alone gluten. And they definitely don't understand the difference between an intolerance and an allergy. I usually just say I have food allergies and I feel better not eating bread and dairy. Occasionally someone will be more interested and I will explain more but most of the time I just use the term allergy and it suffices. Most people don't know what they are eating, anyway. I know before I had problems with food, I didn't. When someone is interested in talking about food I like to bring up issues of high fructose corn syrup, hydrogenated oils, not getting enough omega 3's, etc. Most people don't want to learn what they are eating is bad and don't want to change. I didn't want to change, but now I am so thankful that this difficulty was given to me. I am proud to say that I CHOOSE to eat healthy and I am benefiting from it, as well as my kids.

Another answer I like to use is "I love bread, it just doesn't like me!"

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 27, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
I enjoy listening to Ted Talks.  I found this one on dementia.  The take?  No success in developing drugs to stop dementia, so they are looking for ways to prevent it through diet!  Food can heal!   https://m.youtube.com/watch?v=f0WCb23KPEw Interesting!  
  • Blog Entries

  • ×
    ×
    • Create New...