Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Test Results

mandapandapoo

Recommended Posts

mandapandapoo Rookie
mandapandapoo
Posted

So my mum got her results printed out and spoke to a doctor. The bit of paper says :

 

Tissue Transglutaminase a/b - 0.3.

 

Normal = <= 7.0, Equivocal= 7.0 -10.0 positive >10.0

 

So it's negative. Only one test was performed though? My mum questioned the doctor about this, and she said this is the only one they use. Then my mum explained that she tried the gluten diet, and then the gluten challenge and now her joints are aching, and she feels horrible. The doctor said it was the flu going about, even though she doesn't feel like she has the flu. What do we do?

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

Celiac.com Sponsor (A8-M):


1desperateladysaved Proficient
1desperateladysaved
Posted

I can't remember all of your story, but here are some of my ideas:

 

You might try another doctor and see if they will run a whole panel.

You might try to get an endoscopy.

When all testing is done you can try the final gold standard that is going gluten free and seeing if it helps.

 

Dee.

mandapandapoo Rookie
mandapandapoo
Posted
  • Author

I can't remember all of your story, but here are some of my ideas:

 

You might try another doctor and see if they will run a whole panel.

You might try to get an endoscopy.

When all testing is done you can try the final gold standard that is going gluten free and seeing if it helps.

 

Dee.

 

My mum is already on a gluten free diet, and her symptoms improved, so wouldn't the blood tests come back negative anyway? She really doesn't want an endoscopy, the thought terrifies her. Should we just continue the gluten free diet, and forgot about getting an official diagnosis? Another thing, is if she's intolerant to gluten but doesn't have celiacs, can it be passed on as in genetic? Sorry for all the questions! :unsure: 

mamaw Community Regular
mamaw
Posted

If  your  Mum  was  on a gluten free  diet  before  testing  it  would not  give  an accurate  result....And  my  comment  is  if  she  feels better  eating  gluten-free  & does  not care  about a  formal  dx's  then  she  should  stay with  what  makes  her body feel  best.

anyone  can  have a sensitivity to gluten  but not  have  full blown celiac with  villi damage....

mandapandapoo Rookie
mandapandapoo
Posted
  • Author

If  your  Mum  was  on a gluten free  diet  before  testing  it  would not  give  an accurate  result....And  my  comment  is  if  she  feels better  eating  gluten-free  & does  not care  about a  formal  dx's  then  she  should  stay with  what  makes  her body feel  best.

anyone  can  have a sensitivity to gluten  but not  have  full blown celiac with  villi damage....

 

She stopped eating gluten after the blood was drawn. That's what we're thinking. She knows what makes her feel better, doesn't need a doctor to tell her. Thanks! :)                    

1desperateladysaved Proficient
1desperateladysaved
Posted

The  tests can false negative when a person is not eating gluten.  How long was she gluten free?  I personally don't know much about the test mentioned above, so I can not interpret it.

 

 

There are some good reasons to get an endoscopy:

To prove to yourself and those around you that you have a measureable problem with gluten.

To make sure that you don't have another problem.

To take advantage or be allowed to help with celiac research, or other advantages such as tax breaks.

If a person was in school this would be proof the school needed to make allowances for the child.

 

That being said, many of us do not have endoscopy.  I felt that it would be unethical for me to do a gluten challenge.  I didn't need to have more proof that I had a gluten intolerance.  I felt my response to going gluten free and genetic results enough to convince me.  Since more proof resulted from a rise in nutrient levels and general agreement from my immediate family.

 

Dee 

cyclinglady Grand Master
cyclinglady
Posted

My husband went gluten free 13 years ago at the advice of my allergist and his GP.  It would be much easier if he had received an official diagnosis, but he didn't and he's doing great.  My cousin, tested negative for both blood and biopsies.  She went gluten free because it makes her feel good and she already knows her mom has an issue with gluten and I have a celiac disease diagnosis.  Maybe your mom should just go gluten free.  

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

Celiac.com Sponsor (A8-M):


mandapandapoo Rookie
mandapandapoo
Posted
  • Author

My husband went gluten free 13 years ago at the advice of my allergist and his GP.  It would be much easier if he had received an official diagnosis, but he didn't and he's doing great.  My cousin, tested negative for both blood and biopsies.  She went gluten free because it makes her feel good and she already knows her mom has an issue with gluten and I have a celiac disease diagnosis.  Maybe your mom should just go gluten free.  

 

That's what we've decided :) I'm not sure about me trying gluten free. I have a lot of strange symptoms too, but I'm not sure if they're related to gluten (or another food) or not.

cyclinglady Grand Master
cyclinglady
Posted

Read the newbie thread under the "Coping" section. Your mom has to really commit to the gluten-free diet. Cross contamination is a big problem at restaurants or even in your own home if you have gluten eaters. My daughter has to eat gluten-free and she does not have celiac disease. She eats gluten at school, etc.

Later, if your own symptoms get worse, you can ask for celiac disease testing. Again, an endoscopy would be best (so much easier than childbirth)...... But if you can not get a doctor's help then try the diet for a minimum of six months.

Archived

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

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


  • Member Statistics

    • Total Members
      130,017
    • Most Online (within 30 mins)
      7,748
    NaomiJane
    Newest Member
    NaomiJane
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Dora77
      Possible cross-contamination – concerned about symptoms

      By Dora77 · Posted

      Hi everyone, I have celiac disease and I’m asymptomatic, which makes things more stressful because I don’t know when I’ve been glutened. That’s why I try to be really careful with cross-contamination. For almost a year, I’ve been having yellow/orange floating stools consistently. I’m not sure if it’s related to gluten exposure or something else going on. I’ve been trying to identify any possible mistakes in my routine. Today, I made myself some gluten-free bread with cheese. Normally, I’m very careful: I use one hand to handle the cheese packaging (which could be contaminated, since it’s from the supermarket and was probably sitting on a checkout belt that had flour residue), and the other hand to touch my gluten-free bread and plate. But today I accidentally touched the bread with the same hand I used to grab the cheese pack from the fridge. The fridge handle might also have traces of gluten since I live in a shared household where gluten is used. I’m worried this mistake could have contaminated my bread. There were no visible crumbs or flour, but I know even trace amounts can be a problem. Has anyone had similar experiences or symptoms from this level of contact? Could this kind of exposure be enough to trigger symptoms or cause intestinal damage? Thanks for reading.
    • Mswena
      Lubriderm-gluten-free?

      By Mswena · Posted

      So eight days in a row of gluten on top of gluten on top of gluten, I just had to resort to the EpiPen. I wish I could post a picture because you wouldn’t believe how enormous my gut is! It makes my head look like a pinhead.Ahhhgggsahhhhh!!!! I have discovered that I have to read the ingredients when I use a product up that I’ve been able to use without getting a reaction, because they can change the ingredients and bam my toothpaste now has gluten!!! my doctor told me gluten free means it has 20 ppm which someone with a severe a celiac as I’ve got that thing there kills me. I try to find certified gluten-free in everything. I can’t eat any oats unless it’s Bob’s red mill certified gluten-free. Good luck everybody this autoimmune disease is wicked wicked
    • Mswena
      Lubriderm-gluten-free?

      By Mswena · Posted

      I have been using a little bit of Lubriderm when I wash my hands because it’s the lotion offered at a place I frequent once a week. Assuming it was gluten-free I bought a bottle. I couldn’t figure out why I was getting gluten EVERY night. I use a little of the lotion in the morning on my neck, with no reaction, but at night, I use it on my arms and legs and face and get gluten gut pretty bad. After eight nights of having to have diphenhydramine injections for severe gluten, I googled “is Lubriderm gluten-free” and it led me to this forum. I am going to go back to olive oil as I have been gut sick sooooooo bad with a huge gut and pain eight days in a row now. Sick of feeling sick.
    • ShariW
      Latent celiac, need to go gluten free, advice on kitchen "reset?"

      By ShariW · Posted

      These look great!  I follow several people who frequently post gluten-free recipes online (plus they sell their cookbooks). "Gluten Free on a Shoestring" and "Erin's Meaningful Eats>"
    • Scott Adams
      Latent celiac, need to go gluten free, advice on kitchen "reset?"

      By Scott Adams · Posted

      Sounds great, we also have lots of recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/
×
×
  • Create New...