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
      131,982
    • Most Online (within 30 mins)
      7,748
    Jean MacDonald
    Newest Member
    Jean MacDonald
    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
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Scott Adams · Posted

      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      New Celiac Mama in My 30s

      By Scott Adams · Posted

      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Celiac and dermatitis herpetiformis has taken Me from Me

      By SusanJ · Posted

      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
×
×
  • 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.