Joy’s Celiac Test Results

Joy with some home-canned goodnessLast 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.

This post is part of Sunday School.

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12 comments to Joy’s Celiac Test Results

  • 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.

    • Joy

      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!

  • Melissa Dougherty

    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.

    • Joy

      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!

  • Mia Harrod

    Our Doctor said that this testing isn’t accurate and that only a genetic DNA test is accurate for Celiac . . .

    • Joy

      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.

  • Petros

    “I must admit, I really wanted positive results,” i.e., you wanted a diagnosis of celiac disease??? That attitude is telling. NOBODY should want to be diagnosed with this disease! All this talk about false negatives…there are false POSITIVES. You sound like you won’t rest until you have been given the positive diagnosis. You are telling yourself you must have it. You want it (as you said). Your knowledge is harming you at this point. Did you ever think a good deal of your “obvious” symptoms are probably psychological as well? Isn’t a condition like gluten intolerance (due to genetic predisposition) good enough for you to live with? Why the heck would anybody WANT to be diagnosed with a disease like Celiac?

    • Joy

      Finding the cause of symptoms is the first step in finding a correct treatment. I had hoped it would be celiac, since that fit my symptoms and is actually something one can do something positive about to control. It is also a respected diagnosis that makes others more likely to take you seriously and not screw up your health out of a lack of understanding.

      As it is, I have now learned that what I have is SIBO, and probably neurological autoimmunity as well. I do have psychological symptoms. Not hypochondria, but bipolar disorder… which is exacerbated by gluten and other dietary issues. Fun times!

  • Petros

    “It is also a respected diagnosis that makes others more likely to take you seriously”–understood, but this is the evidence of a flaw in our society. Moreover, it’s still no reason to “want” the diagnosis! It won’t give you any more well-being of good health or peace of mind to have a confirmed diagnosis of celiac disease.

    I have a “true” allergic response to shell fish. Why? I have no clue. I’ve had no medical tests to confirm it. I know what happens to me (classic symptoms of respiratory distress, palpitations). There are people who tell me it’s “psychological” and I’m missing out on some great food. I don’t need them to take me seriously. I’m in charge of my own health.

    Thanks for the nicely organized info on celiac disease. Sorry if I sound harsh but I couldn’t help but notice a certain anxiety in some of what you write. I’m finding out more about celiac disease because my dad was diagnosed with it at age 78, and if indeed this is a genetic disorder, it’s highly unusual that he hasn’t had severe symptoms until now. He needs a second opinion, and I wanted to know if the antibodies in the blood tests indicating celiac disease can be associated with other illnesses (and it looks like with the exception of antiendomysial this is the case). Needless to say, I’m a skeptic when it comes to the protocols of Western medicine. Wishing you more wellness.

    • Joy

      Thanks for the good wishes, and good luck to you and your father! Many people do have the onset of celiac late in life. It can be triggered at any age, and some people take many years for the disease to cause enough damage for diagnosis. I hope he is able to recover quickly!

  • karenc

    Have you been tested for Hashimotos or other autoimmune diseases? They have similar symptoms. I have Hashimotos and it is recommended to be tested for one if you have the other…just a thought.

    • Joy

      Hi Karen,
      Thanks for the ideas. Yes, I have been tested for Hashimotos among other things, and the results were negative, though my thyroid levels are on the low normal end of things. I finally figured out I have SIBO, which explains a lot. I’m still convinced I have neurological autoimmunity which is triggered by gluten as well.
      -Joy

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