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):

  • Join Our eNewsletter:
    Support Our Content
    eNewsletter
    Donate

Lost on Results

MadFuriosa
 Share

Recommended Posts

MadFuriosa Newbie
MadFuriosa
Posted

The last time I saw my doctor was a brief visit and we didn't get to discuss but he said that I am celiac and handed my results that said

IgA - TTG high

Endomysial negative

Symptoms: fatigue, MAJOR bloat, weight gain 

I decided to try going gluten free since I can't see him for another month to even discuss further testing and my symptoms are gone! It's only been 3 weeks but I feel like a different person and I'm losing weight which I haven't done in 8+ years despite trying everything.

I am afraid he will suggest a endoscopy with biopsy since I feel so good and I'm also not sure it would be necessary at this point? I'm also not sure what to ask him when I do see him? Or should I stop my trial just in case?

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

The proof is in the pudding. You have a positive tTG-IGA and you feel much better after cutting out gluten. What more do you need? Ask the doctor to write in your medical chart that you have celiac disease and tell him you feel no need for the biopsy. He himself has already said you have celiac disease. Just ask him to put it in your chart.

Scott Adams Grand Master
Scott Adams
Posted

As long as you don't need a piece of paper from the doctor to keep you on a 100% gluten-free diet for life, then an official diagnosis certainly isn't required for any reason. 

For those who have symptoms (not all celiacs do), I almost believe that the diagnosis protocol should be change--if someone has a positive blood test for celiac disease, they should just go gluten-free for 2 months and their symptoms go away the diagnosis could be made at that point. This method would make life a lot easier and alleviate lots of extra time being miserable while eating gluten to get a biopsy done, and in some cases the biopsy might be negative anyway...then what? Many people in this situation remain in limbo for years because their doctors tell them to keep eating gluten...oh well, I'm just ranting here! 😉

trents Grand Master
trents
Posted

It would be nice to have in your medical record so other doctors you may go won't look at you sideways when you tell them you have celiac disease.

frieze Community Regular
frieze
Posted
On 12/15/2022 at 5:41 PM, Scott Adams said:

As long as you don't need a piece of paper from the doctor to keep you on a 100% gluten-free diet for life, then an official diagnosis certainly isn't required for any reason. 

For those who have symptoms (not all celiacs do), I almost believe that the diagnosis protocol should be change--if someone has a positive blood test for celiac disease, they should just go gluten-free for 2 months and their symptoms go away the diagnosis could be made at that point. This method would make life a lot easier and alleviate lots of extra time being miserable while eating gluten to get a biopsy done, and in some cases the biopsy might be negative anyway...then what? Many people in this situation remain in limbo for years because their doctors tell them to keep eating gluten...oh well, I'm just ranting here! 😉

This is, of course how it was done before the money making biopsy came into play...

trents Grand Master
trents
Posted
27 minutes ago, frieze said:

This is, of course how it was done before the money making biopsy came into play...

Actually, I believe the biopsy was the only diagnostic test available for celiac disease until about 30 years ago when the antibody tests were developed. And since most GPs don't do endoscopies, they don't make money by referring their patients to GI docs for endoscopies.

Wheatwacked Veteran
Wheatwacked
Posted

Looks like a duck, quacks like a duck. You get sick eating gluten. If the doctor can't prove that it is, are you planning to eat gluten? Not proving it is, is not the same as proving it is not. Be sure to get enough of all the essential vitamins; especially D and you'll do fine. The hard part is dealing with the social abuse.

 

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

Celiac.com Sponsor (A8-M):


frieze Community Regular
frieze
Posted
On 12/17/2022 at 12:21 PM, trents said:

Actually, I believe the biopsy was the only diagnostic test available for celiac disease until about 30 years ago when the antibody tests were developed. And since most GPs don't do endoscopies, they don't make money by referring their patients to GI docs for endoscopies.

Go back further, it was trial and error.  Endo, 1956.  Gliadin testing 1964.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,940
    • Most Online (within 30 mins)
      10,442
    Sensible
    Newest Member
    Sensible
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Russ H
      Fiber-Metabolizing Bacteria Could Boost Gut Health in Celiac Disease

      By Russ H · Posted

      People with coeliac disease have an altered gut biome compared with those who do not, which may be associated with gut inflammation. Although the gut biome recovers on a gluten-free diet, there are still significant differences at 2 years. In a mouse model of coeliac disease, supplementation with the soluble dietary fibre, inulin, increased the number of beneficial microbes and reduced gut inflammation. Inulin is used by some plants as carbohydrate store, it is a complex polymer of fructose in the same way that starch is a complex polymer of glucose. Inulin cannot be digested by humans but serves as food source for some gut bacteria. Inulin is present in many vegetables but the richest sources are (g/100g): chicory root 41.6 Jerusalem artichoke 18.0 dandelion greens 13.5 garlic 12.5 leeks 6.5 onions 4.3 The Scientist: Fiber-Metabolizing Bacteria Could Boost Gut Health in Celiac Disease    
    • suek54
      Shaking/Tremors and Off Balance

      By suek54 · Posted

      Hi Ginger38 Well done you for pushing through the pain barrier of eating gluten, when you know each mouthful is making you poorly.  I went through the same thing not long ago, my biopsy was for dermatitis herpetiformis. Result positive, so 95% certain I have gut coeliacs too. But my bloods were negative, so very pleased I went for the gluten challenge and biopsy.  Hang on in there. Sue
    • Scott Adams
      Has someone experienced discrimination because of their illness?

      By Scott Adams · Posted

      When symptoms like fatigue, brain fog, or low energy change how we interact, others sometimes misinterpret that as disinterest, rudeness, or negativity—especially if they don’t understand the underlying condition. That doesn’t make their behavior okay, though. You don’t deserve to be treated poorly for something outside your control. Often, it reflects a lack of awareness or empathy on their part, not a fault in you. It can help to explain your condition to people you trust, but it’s also completely valid to set boundaries and distance yourself from those who respond with hostility. Your experience—and your reaction to it—makes sense. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      HLA-DQ2 POSITIVE it's nothing

      By Scott Adams · Posted

      Being HLA-DQ2 positive doesn’t diagnose celiac disease by itself, but it does mean he has the genetic potential for it, so it absolutely deserves careful follow-up if symptoms or concerns are present. You’re right that celiac is often downplayed, but it’s a serious autoimmune condition—not an allergy—and it can affect the brain, nervous system, and overall health if untreated. Given everything your son has been through, you’re doing the right thing by advocating and asking questions. I would strongly recommend getting a full copy of his records, and if possible, consulting a gastroenterologist who understands celiac disease well so you can get clear answers and, if needed, proper testing and monitoring.
    • Scott Adams
      Juce Super Fruit & Veggie Vitamin Blend

      By Scott Adams · Posted

      Yes, I don't recommend barley or wheat grass, even though technically speaking if it's made using ONLY the pure grass it is gluten-free, however, I've witnessed them make it at Jamba Juice and the seeds/kernels often get mixed into the grass before they juice it, so in that case would not be safe.
×
×
  • 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.