Understanding the TTG Ab IgA test

[CallyC]

My daughter recently had blood work done and came back with 210 U/mL.

She has had many medical issues over the years without any explanation, is this result high? She has been referred to our local Children's hospital for follow up but the wait list is very long and I haven't been contacted for an appointment yet. It's been 1 month already.

Some symptoms are anemia, mood disorders, imbalance (sometimes requiring a wheelchair), negative for Hep B although she has been vaccinated and constipation/vomiting. 

Any information would be appreciated 

[ravenwoodglass]

It must be so hard on you and your daughter to be struggling with this and not have any answers yet. It sounds like she has ataxia and neuro impact that can be seen with celiac. When this happens UBO's can be found on an MRI. These are similiar to the lesions seen with MS but a spinal tap will not show the debris that is found in MS. Have they done a brain MRI for her? If so what were the results? Not all neurologists are aware of the significance of UBO's but there is peer reviewed literature out the on the subject. The UBO's are found when the antibodies have affected the brain and nervous system.

Can you get on a cancelation list with the doctor? If you can get there on short notice it is worth a try. Don't wait any longer to hear from them. Call the office and inquire about how much longer. It can be helpful to ask to speak with a nurse as you can go into more detail and the nurse may be able to suggest things that are helpful. If your daughter has not had testing of B12 levels along with the other blood work do have that done.

Do not take her gluten free until all celiac related testing is finished. After she has the endo, if you choose to have one done, get her strictly gluten free.

I had severe brain impact from childhood and was in my 40's and very ill when I was finally diagnosed. It can take some time to heal and progress can seem slow. It was 6 months before I could walk unaided and even then I needed many physical therapy sessions to regain balance. Mood issues went away much more quickly. I only get depressed now when glutened. It is one of my first signs. If I could heal she can too. It is hard but be patient and be aware that those of us who have brain impact can be very sensitive to cross contamination. Do read the Newbie 101 thread for good info on how to keep her safe and feel free to ask any needed questions. With a blood result that high there is little doubt she has celiac so if the endo should be negative please have her go gluten free anyway. In addition it would be a good idea to have all first degree relatives screened for celiac also. I hope she gets some relief soon.

[cyclinglady]

I agree with everything Ravenwoodglass has recommended.  Please try to get into the GI or Neurologist faster by seeking an earlier appointment.  Call daily (if needed) and be polite.  

I hope  it goes well for both of you!  

[CallyC]

Thank you for your replies, I still haven't heard from children's hospital so will follow up again with our family doctor ( she's great) about your suggestions. 

I have decided to take my daughter off gluten because I felt I was feeding her poison everyday! Plus she was willing to try. Our medical system moves so slowly who knows how long before she sees a specialist. All her symptoms seem to point to celiac and I'm positive she would not tolerate a biopsy at this time with her mental health issues.

Is there any other information or requests for testing that I should bring to her doctor?

 

 

[ravenwoodglass]

If you take her gluten free that will cause a false negative with testing. See if you can get your GP to order a complete panel today. When you call ask to speak to a nurse. They can relay info to the doctor between patients. Also ask for an appointment or a call back with the doctor. Some doctors will give an official diagnosis based on decrease in anti-bodies and resolution of symptoms. With the serious nature of the symptoms the GP may be comfortable with diagnosing without the endo.  It is important to have a diagnosis for young people as precautions need to be taken in school. It can also help a young person stay compliant with the diet.