Test Results

[mandapandapoo]

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?

[1desperateladysaved]

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]

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!  

[mamaw]

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]

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]

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]

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.  

[mandapandapoo]

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]

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.