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

Wanted To Be Retested After Being Gluten Free- Doctor Said No Point?

HS7474

Recommended Posts

HS7474 Apprentice
HS7474
Posted

I still experience some symptoms even though I've been gluten free for over 2 years. I never had a positive biopsy since my doctor said that my blood test levels were high enough that there was no denying I have Celiac. I believe it was the Tga test. I had a biopsy while eating gluten free to check for other issues and nothing was found. I visited the doctor the otehr day and asked her if she could write up a blood test to have my levels checked again and she said that there was no point since there wouldn't be any difference. I thought that it was an antibody and that if I was not ingesting gluten I could be tested and it would appear that I don't have Celiac disease.

Could anyone shed some light on this? I know my previous reading was >100 and was off the chart so the doctor said I definitely had the disease so that's why I never had the biopsy. I was hoping to see if my levels had dropped to normal or something but does it not work that way?

Thank you so much for any clarification.

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

Celiac.com Sponsor (A8-M):


AzizaRivers Apprentice
AzizaRivers
Posted

A repeat of your blood test could be valuable. If you've been gluten free, but you're still experiencing symptoms, one possible reason for that might be cross-contamination or gluten sneaking in some way you're not aware of. Getting your blood-test redone might be able to shed some light on that.

On the other hand, getting retested might not give you any new information to go off of. Some people take a VERY long time to heal before they stop feeling poorly, and some people develop other intolerances that give them problems.

sa1937 Community Regular
sa1937
Posted

To me it would seem normal for the dr. to recheck your lab results, especially tTG and EMA, if you are still having some issues.

My tTG level was also >100 on my initial celiac panel. My dr. basically ordered a follow-up test as I was concerned about my readings after being gluten-free for nine months.

Cara in Boston Enthusiast
Cara in Boston
Posted

It is my understanding that you should have your blood levels checked regularly (every 2 years?) to make sure the gluten free diet is working. That is what I was told.

If it is working, your levels should all be within range. If not, you are unknowingly consuming gluten and need to figure it out.

Cara

Karla01 Apprentice
Karla01
Posted

I still experience some symptoms even though I've been gluten free for over 2 years. I never had a positive biopsy since my doctor said that my blood test levels were high enough that there was no denying I have Celiac. I believe it was the Tga test. I had a biopsy while eating gluten free to check for other issues and nothing was found. I visited the doctor the otehr day and asked her if she could write up a blood test to have my levels checked again and she said that there was no point since there wouldn't be any difference. I thought that it was an antibody and that if I was not ingesting gluten I could be tested and it would appear that I don't have Celiac disease.

Could anyone shed some light on this? I know my previous reading was >100 and was off the chart so the doctor said I definitely had the disease so that's why I never had the biopsy. I was hoping to see if my levels had dropped to normal or something but does it not work that way?

Thank you so much for any clarification.

It is very important to have your blood work tested again after being on the gluten free diet to verify that you are truly gluten free. My doctor tested me 3 months after being on the diet and then told me I could come back yearly because my levels were almost normal.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Your dr is wrong. Show them this:

Open Original Shared Link

If they still refuse to retest you then fire them and get a new dr.

HS7474 Apprentice
HS7474
Posted
  • Author

Thank you all so much for your replies :) I'll have to try to find a nice way of confronting my doctor with this!

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

Celiac.com Sponsor (A8-M):


GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Thank you all so much for your replies :) I'll have to try to find a nice way of confronting my doctor with this!

Your dr works for you. There is no need to be nice, unless you are living in a country where you have no choice in who your dr is, in which case you have my sympathy. Be firm in your askign for retesting and if they still refuse find a NEW dr.

Roda Rising Star
Roda
Posted

My GI told me that my levels would never go down either. I knew he was wrong. I have had them rechecked twice since my initial diagnosis and my ttg last was 4 down from 78 so I guess now he knows he was wrong. My Igg gliadin is still just positive as of last Aug. I'm hoping the changes I made since then are helping..gotta go get a recheck.

Archived

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

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


  • Member Statistics

    • Total Members
      132,075
    • Most Online (within 30 mins)
      7,748
    Amy1620
    Newest Member
    Amy1620
    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

    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      KAN-101 Treatment for Coeliac Disease

      By Russ H · Posted

      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
    • Scott Adams
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By Scott Adams · Posted

      BTW, we've done other articles on this topic that I wanted to share here (not to condone smoking!):    
×
×
  • 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.