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.
| Test | Result | Reference Range |
| 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.
In the book “Wheat Belly” Dr. Davis talks about three different blood tests for celiac’s disease. This looks like the results of just one type of test. Given how serious the consequences of this disease are I would keep pursuing those options since you apparently have a confirmed diagnosis based on an elimination diet. He also talks about the different types of gluten which is pretty interesting. Gluten isn’t just one thing but a family of proteins. Also, it might not be the gluten but other proteins that are specific to modern hybrids of wheat and other cereals. I know someone that isn’t sensitive to gluten but is highly reactive to proteins in wheat. I took an animal nutrition class for poultry and the chief scientist for OSU’s nutrition department told us that even though the gluten is eliminated by sprouting cereals it didn’t change the amount of protein in the feed. In other words if the grains assayed at 16.5% protein they would still have the same amount after the grain sprouted. One of the studies Davis quotes in Wheat Belly found that a hybrid of two parent varieties had 5% protein that didn’t exist in either parent. Maybe that’s your problem.
Yeah, Tom, I only got the mainstream tests which are specific to celiac damage. (There are stool tests that test for tTG and are more sensitive but I didn’t get those done). Those tests, so far as I can tell, as well as many of the other available tests included in the panels and arrays I have found don’t specifically indicate anything I wouldn’t be comfortable diagnosing on symptoms alone.
The one test I would have really loved to have done was the anti-tTG6 IgA, which indicates neurological autoimmunity. Unfortunately I do not believe that test is yet available.
My current thinking is that I can believe I don’t have total villous atrophy due to gluten, but that I do have intestinal permeability, probably from other causes. I imagine that as a result of that I have regular old IgG reactions to gluten and other foods as well as the gluteomorphin reactions, but I’ll not know for sure because I’m not doing the tests. I believe I am affected by gluteomorphins and blood/brain barrier permeability as well. I suspect I may have autoimmune neurological damage triggered by gluten, but have no way to know for sure.
I’m happy to play it safe!
That stinks about your test results! My husband was diagnoised in November and did have a positive blood test, although his numbers weren’t not very high yet. He is currently doing a 3 week gluten challenge prior to his endoscopy. So far his symptoms aren’t too bad, he is only on day 4! He has been having headaches, fatigue, bad gas, and stomach pressure. His main symptom and reason for going to the dr the last 2 yrs was just a very uncomfortable feeling in his left upper quadrant, right under his ribs. It isn’t a horrible pain just bothers him a lot. I think since we caught it so early that he is just in the early stages and it hasn’t progressed too much yet. Good luck and if the diet helps you, then don’t worry about the results.
I’m glad your husband has been able to get some positive results and start to heal. It really is amazing how fast some of us can feel better once we eliminate the cause of the problem!
Our Doctor said that this testing isn’t accurate and that only a genetic DNA test is accurate for Celiac . . .
Hi Mia,
There are many tests out there for gluten related issues and celiac, and *none* of them are 100% accurate, unfortunately. I actually already know that I am heterozygous for a celiac risk factor on HLA alpha allele: DQ 7.5 (DQ2.5 trans). However, genetics do not tell you whether you have a condition – they only tell you if you have the risk factor for the condition. The risk factor I have is low relative to the more common DQ2 or DQ8 on the HLA beta allele. About 30% of people have those risk factors, while only about 1% of people actually have celiac disease. Whether all people with risk factors might be better off staying away from gluten is another conversation
They are now finding that about 1 percent of people with celiac disease as confirmed by biopsy do not have the known genetic risk. And they are also finding that there are genetics that show risk factors for other gluten-related conditions, such as gluten ataxia and HLA-DQ1. This doesn’t even include all the people who are simply gluten sensitive rather than experiencing celiac autoimmune damage to the small intestine. It’s so complicated!
There are other tests for different types of reactions to gluten available from Cyrex Labs and more sensitive testing available from Enterolab. The tests I had done were not definitive, it’s true. There is a high potential for false negatives (though false positives are rare). Unfortunately, there is not currently testing available for neurological autoimmune damage (tTG6). My latest theory on what’s going on to me is that the main thing gluten does to me is trigger neuro stuff, and that the starch aspect may be the root of my digestive issues with it (due to SIBO, maybe?) Knowing that I obviously could not eat gluten any more, I wanted to know if I had active and measurable autoimmune celiac damage occurring. It appears I did not… or not to detectible levels, anyway. It’s just another piece of the puzzle.
I think it’s good for people to see that someone with such obvious symptoms could be negative on the standard celiac panel.