Recently Tested For Celiac - Questions & Confused

[newjoy82]

Hello,

I recently had blood work done and I'm a bit confused by the results and was hoping to see if anyone could help figure it out... I tested weak positive on TGG IgG but negative on everything else. My doctor says I need to go on a gluten free diet and I have celiac disease. Additionally, I had some blood work done at my allergy doctor a few weeks prior to this and have low IgA (IgA deficiency)...my level was 55 and it was supposed to be between 90 something and 400 something. I'm a little confused by the terminology. I read a couple articles that said having IgA deficiency can cause some of your celiac test results to be lower than they are or have a false negative. The doctor said people typically either are really low or really high, but don't usually result with a weak positive.

 

"While it is rare, it is possible for patients to have a negative antibody test results and still have celiac disease. IgA deficiency is one example where this could occur. Further medical evaluation is important for anyone who is still experiencing symptoms, to establish the diagnosis or to rule out celiac disease as a part of establishing another diagnosis."  Open Original Shared Link

 

In addition to this I was diagnosed with Fibromyalgia at 16 years old (almost 32 now). I went to the doctor because I have not been treated for FMS for years and wanted to verify the diagnoses was correct as I've still had symptoms for many years. Out of the blood work that has been done I had low vitamin D and the weak positive on the IgG (plus the low IgA results).

 

Is it normal to have only one positive out of the results? Any FMS - celiac connection?

 

My typical symptoms - stomach issues, muscle/joint pain, headaches (migraines or in both eyes), tired...all the time, sleep issues, muscle cramps, etc.

 

The doctor has not mentioned any further testing, but recommended following a gluten free diet.

 

My results:

 

GLIADIN AB, DEAMID. IgG   1.9 U/ML
NEGATIVE U/ML <20

 

GLIADIN AB, DEAMID. IgA  1.7 U/ML
NEGATIVE U/ML <20

 

TTG IgG [H] 6.2 U/ML
WEAK POSITIVE U/ML 6-9

 

TTG IgA 0.6 U/ML
NEGATIVE U/ML <4

[cyclinglady]

Yes, you can have just positive out of the all the tests. That is why it is imperative to have all the celiac tests done. Even with the IGA deficiency, you still tested positive.

Many people here on this forum have Fibro as well. I have celiac disease and my Mom has Fibro. There could be a relationship.

[bartfull]

Congratulations! Your doctor has given you a diagnosis. SO many here have struggled with doctors who either refuse to test them, perform the tests wrong, or read the tests wrong. Your doctor sounds like a good one! While to many folks a diagnosis isn't important, for some folks it is. It gives them the extra willpower to stick to the diet. Others need that piece of paper for school or work to take them seriously. And if you are ever hospitalized, that piece of paper can make the difference between getting a gluten-free meal or having to live on jello while you're there.

 

Now what you need to do is go to the coping section here and read the Newbie 101 thread. Make sure you click on all of the links provided in the different posts there. It'll give you a real education about celiac disease and how to do the diet right. Then come back and ask as many questions as come to mind.

[newjoy82]

Thank you Cycling Lady...that information is very helpful. 

 

Thank you Bartfull...I am happy to have the diagnosis, but also want to understand what it means and the test results and how it relates to the other issues I mentioned. Thank you for the information regarding the newbie forum I will definitely check it out.

[cyclinglady]

You might find relief from your Fibro symptoms after you have been gluten free for a few months to a year or longer (takes lots of time to heal your intestinal tract). As mentioned in " Newbie 101", you might have additional intolerances, again resulting from intestinal damage. It is strongly encourage to give up all dairy for a while and keep a food journal to help identify other intolerances.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

I also had only one of the celiac disease blood tests come back positive. I went on for a biopsy for many reasons: 1) I was already there for a routine colonoscopy, 2) I was severely anemic, and 3) I could not imagine that both my husband (who has been gluten free for 13 years) and I would both have issues with gluten....I mean what are the odds?

I wish you well!

[GottaSki]

The celiac antibody tests are IgA and IgG based. With deficient total serum IgA, the IgA based celiac antibody tests are not valid and make the IgG tests that much more important.

Another important item you mention was deficient Vitamin D...celiac disease prevents proper absorption of many nutrients.

It takes a doctor that understands the combination of symptoms, nutritional deficiencies and proper celiac antibody testing to diagnose celiac disease in many cases.

I agree with the diagnosis, but highly suggest further nutrient testing as many need to supplement until the digestive system has a chance to heal and begin to properly absorb nutrients.

All that said...if you are not comfortable with the diagnosis, I suggest you seek out a gastroenterologist with celiac experience to discuss the possibility of further testing.

Undiagnosed celiac disease can cause all of the symptoms known as Fibromyalgia....as others have mentioned, it can take time for these symptoms to improve.

The complete removal of gluten is not an easy transition, but once you are past the learning curve it becomes much easier to live gluten-free.. Do read the newbie thread others have linked to.

If you are thinking of consulting with Gastro...do not remove gluten until you do. Further testing (endoscopy with small intestine biopsy) requires continued gluten consumption until the endo has been completed.

Welcome to the best club you never wanted to join