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

Thinking About Seeing A Specialist, Opinions On Labs And Biopsy?

tealeaves1

Recommended Posts

tealeaves1 Newbie
tealeaves1
Posted

Hello,

I have had fatigue, neuropathy, abdominal pain, joint pain and bloating for many years.  I had giardia 1.5 years ago, it was treated but all the longstanding symptoms I had seemed to get worse after that, especially the joint pain and fatigue. I have longstanding issues with depression and anxiety and have been diagnosed with hashimotos long ago, I am not on medication, my labs have been within normal range.   Earlier this year I had a work up for celiac disease, my ttg Iga was 55 and endomysial ab was negative.  My biopsy showed mildly increased intraepithelial lymphocytes.
mildly increased Lamin propria inflammation.  I was told I didn't have celiac disease and my primary doctor didnt offer much in the way of explanation for my abnormalities. 

 

My doctor suggested I try a gluten free diet because there wasn't anything to tell me to do.   I started feeling better within days and after a month felt like a different person.  I didn't feel depressed anymore and stopped taking my antidepressant and have been doing great.  I had been on it for well over a decade and had tried to get off it numerous times but wasn't successful.  I recently had my ttg Iga rechecked because I was wondering if there was any change after 6 months on a gluten free diet.  It was <2. 

 

I'm wondering what people think about this not being celiac disease.  The only think I changed was my diet ,  now my lab result is negative and I feel a lot better.  I have been thinking about making an appointment with a specialist who is an expert in celiac disease.   I suppose I want to know why there is the change in labs if it's not celiac disease, if I will get better and be able to eat gluten again and also want a second opinion because it is genetic and want to know the information for my family.    

 

thanks for your feedback. 

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

Celiac.com Sponsor (A8-M):


SMRI Collaborator
SMRI
Posted

In every range I've seen, 55 on a ttg IGA is a strong positive.  What was the range for your labs.  Why did he say you do not have Celiac??

tealeaves1 Newbie
tealeaves1
Posted
  • Author

In every range I've seen, 55 on a ttg IGA is a strong positive.  What was the range for your labs.  Why did he say you do not have Celiac??

I was told my biopsy findings were not specific to celiac and to follow up with my primary doctor about the inflammation seen on my biopsy.  My primary doctor didn't have any specific diagnosis and just said that maybe the lab result doesn't mean anything.  

 

I believe the range was > 10 for positive and >20 for strong positive.   I got the impression from the doctors that because it wasn't >100 and my villi were intact that it wasn't specific to warrent concern. 

SMRI Collaborator
SMRI
Posted

I'd see a specialist but in my non-doctor opinion, you have Celiac with a positive blood test like that.  Now, if it was 11 and the biopsy was questionable, maybe, maybe not, but with a 55 its a pretty done deal.  Problem is, you have to start eating gluten again for them to re-test, for several weeks.  Do you want to do that?

LauraTX Rising Star
LauraTX
Posted

With such a high ttg IgA like that, even with mild inflammation on the biopsy, that is Celiac disease.  You are also feeling better on the gluten-free diet and that is also a big sign.  I would go to a new GI doctor who specializes in Celiac disease and bring copies of all the lab work and pathology reports for them to review.  If you go to someone competent, it is likely you are going to walk out with a Celiac diagnosis.  

 

Also, how many biopsies were taken at your endoscopy?  The damage cause by Celiac can be spotty and easily missed if not enough samples are taken.

tealeaves1 Newbie
tealeaves1
Posted
  • Author

With such a high ttg IgA like that, even with mild inflammation on the biopsy, that is Celiac disease.  You are also feeling better on the gluten-free diet and that is also a big sign.  I would go to a new GI doctor who specializes in Celiac disease and bring copies of all the lab work and pathology reports for them to review.  If you go to someone competent, it is likely you are going to walk out with a Celiac diagnosis.  

 

Also, how many biopsies were taken at your endoscopy?  The damage cause by Celiac can be spotty and easily missed if not enough samples are taken.

 

 

They took 6 samples on the biopsy.   Yes, I would like to take all of my labs and biopsy results to just get a second opinion.

Archived

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

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


  • Member Statistics

    • Total Members
      132,114
    • Most Online (within 30 mins)
      7,748
    Cheryl Elliott
    Newest Member
    Cheryl Elliott
    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

    • trents
      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
    • trents
      High DGP-A with normal IGA

      By trents · Posted

      Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      My genetic test results have arrived - I’m homozygous for DQB1*02, meaning I have HLA-DQ2. I’ve read that this is one of the genes most strongly associated with celiac disease, and my symptoms are very clear. I’m relieved that the results finally arrived, as I was getting quite worried since my symptoms have been getting worse. Next step, blood test. What do these results imply? What should I tell my family? I’m concerned that this genetic predisposition might also affect other family members.
    • Roses8721
      GI DX celiac despite neg serology and no biopsy

      By Roses8721 · Posted

      Two months. In extreme situations like this where it’s clearly a smoking gun? I’m in LA so went to a very big hospital for pcp and gi and nutritionist 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      So far 3 months in - worsening symptoms. I have had the worst constipation in my life and I am primarily eating naturally gluten-free foods like potatoes, eggs, salad with homemade dressing, corn tortillas, etc. I hate gluten-free bread and pasta so I don't eat it. Occasionally I eat gluten-free almond flour crackers. As stated in the post, I don't have any vitamin deficiency. I was already tested.
×
×
  • 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.