Last week I finally got my long-awaited celiac test results. Those results were hard-won. After a year gluten-free, I had undergone a gluten challenge, in which I tried to eat 20 grams of gluten every day for 3 months. Unfortunately my symptoms got so extreme that I had to quit early.
Despite my symptoms, my blood tests came back clearly negative. I have no health insurance and actually believe these results, so I will not be undergoing a biopsy.
|Tissue Transglutaminase IgA||3||<20 EU|
|Gliadin DP IgA||2||<20 EU|
|Gliadin DP IgG||2||<20 EU|
|Total IgA||218||40-350 mg/dL|
|Endomysial Antibody IgA||<1:5||<1:5|
I must admit, I really wanted positive results. A celiac diagnosis would have given me something that doctors, family members, and strangers would be required by law to take seriously. It would have given more backing to my son’s tentative (but untested, since he can not do a gluten challenge) diagnosis of celiac disease. Most importantly, though, it would have cleared those persistent thoughts that I’m a hypochondriac and have made the whole thing up. I don’t want to be a crazy diet person for no reason!
Though I was kind of sad when I got the word, it didn’t come as a surprise that my results were negative. I knew this was a possibility – both because my challenge was not very long, and because my worst symptoms are neurological rather than intestinal.
I expected to feel worse than I did about my results, though. Had I not had such a miserable challenge and documented it for the world to see, had I not been surrounded by people who could see the difference in me, I might have doubted myself and gone back to gluten. Strangely, though, since getting these negative results I feel even more sure that gluten is a horrible, bad thing for my body. I feel like I did my due diligence, and I can finally trust what my body has been telling me all along.
Gluten sensitivity is starting to come into it’s own as a diagnosis, and is starting to receive some press. Clearly, I’ve got it.
A lot of people have asked me why I didn’t go in for some of the alternative testing for gluten sensitivity rather than (or in addition to) the tests specific to celiac disease. I’ll be writing about alternative testing in more detail, but for now suffice to say there are stool tests and arrays available that test for many other ways the body could be reacting to gluten.
What I wanted was to know if I have the autoimmune damage associated with celiac as a part of my response to gluten… and I wanted those results to come in a widely accepted package. The other testing available may have shown other types of sensitivity or picked up lower levels of autoimmunity, but they wouldn’t make me a card-carrying member of the Celiac Club. Really, it was an emotional decision. I wanted proof of the official diagnosis, the official way. I already had the rest.
I didn’t get my proof. I’m sure I would have found the other results interesting. But without them I still know what I need to do. Now, I’m doing it.
- Celiac Testing Myth #1 – No Symptoms = No Celiac
- Celiac Testing Myth #2 – Go Gluten-Free First
- Celiac Testing Myth #3 – Gluten-Free 4 Life = No Reason to Test
- Celiac Testing Myth #4 – Doctor Knows Best
- Celiac Testing Myth #5 – DNA = Proof
- Celiac Testing Myth #6 – Negative Results = No Problems
- Wheat Allergy and Non-celiac Gluten Intolerance
This post is part of Sunday School.