Being gluten-free Before Testing

[NannyGoat]

Hi, I'm new here. I'm 36, have been gluten free (of course with some learning curve moments and the two moments I mention below...) for the past almost 6 weeks, and have a question about testing.

I have one child who has been not-quite diagnosed as being possibly on the high-functioning end of the autism spectrum (5 evals in the past, no one quite saying that yes it fits, no one saying no, either, left with the "quirky" and "wouldn't be surprised if this was a diagnosis at a later time" thing...frustrating), so he was Gluten-free Casein-free about 6 years ago for about 9 months. Some changes, but he also lost a lot of weight and ended up being 26 pounds at 4.5 years old, and it was also hard to separate whether the improvements we saw were a result of the diet itself, the extra attention and cleaner eating in general, or just nearly a year of growth and maturation and development. So this isn't entirely brand new to me. My son was tested with the older anti-gliadin antibody tests and came out "positive" twice, but one time he had a stomach virus when he was tested, and we're not sure about the other time. Later tests were not positive. And last year he had the panel of the 3 or 4 tests that I'm blanking out on the letters of, and all were negative, which surprised his ped and me. I've always felt like maybe I could benefit from trying being gluten-free myself. My own issues that I feel might be related to gluten are this vague diagnosis of IBS for the past 20 years (cramping, loose stools and such about 2x a week) and an increasing number of migraines, more frequent after each baby I've had. Long story short...I've thought many times about getting tested for celiac disease, doing a trial of being gluten free, but I hadn't bitten the bullet before.

Then this January, as my dh was starting a new diet to lose weight (I've always been kind of underweight my whole life, so I have the opposite issue...trust me, my GI issues are no fun and I'd really like to enjoy eating food instead of wondering how it's going to hit me afterward!), I thought that this might be a perfect time to set a mini-goal of trying life without gluten. My first deadline would be about 6 weeks, and then I would reassess. I know this isn't long enough, but psychologically, it was easier to give it a go with a short time frame and permission to think about it than to start saying I'm doing it a year. I stopped eating gluten, then three days later had an appointment with my GP to beg for a test for celiac disease. I know many doctors, for whatever reason, just aren't terribly free about ordering these tests, but I told my IBS story and migraine tale of woe, which she had already heard, and she was game. She asked if she could get a CBC and thyroid test, and I said sure, even though I get these done at least once a year because I pretty well fit a description of Grave's Disease, minus the actual blood test results to say it is so, and she said she wanted to do one of those icky fecal occult stool thingies. But I let her do it (she's a pretty new doc for me, I'm not sick often, I have only seen her 3 times in the past year, all about migraine meds). So the nurse comes in, takes a couple vials of blood. I had only been gluten-free for three days before going in, and I ate some bites of donut that morning to try to add something to react to, even though that was kind of against my better judgment. On the way home from the appointment, I realize hmm, no one gave me the stool collection kit. Seemed kind of negligent on someone's part, but I didn't particularly want to do it anyway, have done them numerous times in the past, so I wasn't going to go back begging right away.

I was committed to being gluten-free for at least the next two months or so regardless of any test results--I was only getting the test done because I know that you must be eating gluten to be tested, so I figured it was now or perhaps never. And frankly, I wasn't expecting to appear positive on any of these tests anyway--I suspect more a sensitivity if anything. So I didn't panic when I didn't hear back from the office. As time went on, I was a little annoyed; I know you have to be an advocate for yourself in today's health system, but I do expect kind of minimal responsibility from a dr's office, and I've left other dr's offices in the past because they would do things like send me for tests or do an ultrasound and the tech would tell me something ("You have gallstones") and then my doctor would never contact me with results or for followup. But I was really busy, I have a bunch of kids, I just didn't get around to calling, and generally no news is "good" news as far as lab results go. About five weeks after they took the blood, I get lab results in the mail. The CBC and the thyroid panel, all totally normal, as they always are. No celiac panel. Nothing else.

I call the office. Oops, they say. They put the code "celiac test" or something like that on the lab request, and the lab expected the code "Other." Or somesuch. So my blood was taken. I gave them my copay, took my time to go in and beg for this test for a chronic, lifelong condition, and they poked my arm, took my blood...and didn't do the test I came in for. I'm angry. "Well, you can come in tomorrow and we can do another. We won't charge you a copay for it because we messed up that code; it will just be a nurse visit." Hmm. "Don't you need to be consuming gluten in order for this test to detect a response?" Oh no, they say. I don't think so. Hmmm. "Could I speak with the doctor, just to be sure? My understanding is that you need to be eating gluten in order to get reliable results." We'll talk to the doctor on call; your doctor isn't in today. Oh, she says its fine that you haven't been eating gluten for five weeks, you don't need to. Just come on in tomorrow.

I honestly didn't know the answer to the question--how long off gluten is too long? Five weeks sounded to me like enough time for some healing to go on. I know that it can take many months for all gluten to be out of the body, but I really don't know. I was livid. I don't trust this office, which seems to know nothing about celiac disease. And I have an HMO, so I always have to jump through the requisite hoops to get to a specialist. Now I'm pretty sure I should just bail altogether on this place.

But I did go in. I thought about it over the weekend and then decided to go ahead and eat some gluten the day before the test because I really do want to know the results. So I had four gluten cookies. They were yummy. I had a headache afterward, but I've had a lot of headaches since going gluten-free, so what's another? Then I was tested the next morning. I've been reading around and web searching as much as I can, but it's basically my understanding that this probably wouldn't constitute a legitimate "challenge" for testing purposes and was probably useless. I can't find enough decent information about how long you can be off gluten and still be tested. Some things I read seemed to think a week was long enough for healing that would make blood tests or even biopsies unreliable.

So here are my questions:

1. I've been gluten-free (with probably some learning curve mistakes here or there) for 5 weeks before getting tested after they failed to do my first test. Would the results of this blood test have even a ghost of a chance of being reliable? Would I need to eat much more gluten than just four cookies the night before the test at that point to have enough gluten in my system to be still causing an immunoglobulin reaction or damage?

2. Have I not been on this long enough, and should I just bail on the gluten-free thing and get these blood tests and, if necessary, a biopsy in a couple of weeks after subjecting myself to gluten again for a month? Or would it make sense to just continue on my course on my own, sans diagnosis?

3. I didn't have humongous health issues before going gluten-free, and i haven't had a "miraculous" recovery of any kind since going gluten-free. I have obviously eaten gluten this one time for the retest. And I have made a couple of mistakes I caught (accidentally licked a spoon in the first gluten-free week because my brain shut off while I was cooking for my kids, accidentally ate some bites of chicken noodle soup before I realized that I was feeling really heavy and full and awful and oops, my brain shut off and I ate regular noodles) and may have had some CC issues while my house was being purged of gluten because the rest of my family isn't on this journey with me. I generally am perceived to have more energy than most people, I rarely sit down during the day, I'm really physically active and play sports regularly, and IBS and migraines, primarily at predictable hormonal moments in the month are my only ongoing annoying physical issues. But I can't say I feel tons better. I have fewer gassy, bloating moments than I did before, and I haven't had AS MANY IBS symptoms, but I haven't been symptom free, either. And since being gluten-free, I've had to take more prescription migraine meds than I ever have in a 6 week period before. I've had even more headaches that I haven't taken my prescription for--lower key things that more or less resolve with OTC stuff. I've had one little cold in here (5 days or so, first cold in a really long time, nothing earth-shattering, so that may have contributed some sinus headachy stuff). And I've had a ton of mild stomach aches, which I've never had before. Before this, I was much more prone to icky feeling bloating and intestinal cramping stuff, not to dull achy stomachs. I also find that I have a lower appetite than before, and I'm not a person with a massive appetite to start with; I have a really strong "fullness" response naturally, and I'm feeling full or not as hungry even more than usual. Is this all a normal detox response? I don't really expect instant fixes, and I assume that there can be some healing crisis with many remedies for the body, especially for conditions that have been going on a long time. But have others experienced this?

I'm certainly not ready to ditch my gluten-free lifestyle yet. To a lot of people, I suppose it doesn't really look like it's "working," but I am not ready to throw in the towel, and I feel like the best may be yet to come. I'm mere days away from my original deadline for myself, and the verdict on my part is renew for another two months before reassessment. But I'm really, really mad about what my dr's office has done with regard to the test. It seems amazingly unprofessional, not to mention really inconvenient to me. And I want to feel like there's still lots of reason to hope even if I feel worse in many ways for a while. Maybe I didn't have as far to rise up as some people with more significant health issues or impairment before diagnosis or the diet.

Any help answering my questions about whether it's now too late to test, whether my 5-weeks-in test is a total wash, and whether stomachaches and headaches are a normal detox response would be greatly appreciated!

Thanks!

[caek-is-a-lie]

Hmmm. From what I've read here, you need to be on gluten for at least 3 weeks before testing, preferably a few months. However there are labs that service the public directly, and some claim to have tests sensitive enough to pick up antibodies a few weeks after being gluten-free. There's also HLA testing, which is a genetic test that can tell you if you have genes that predispose you to gluten intolerance and Celiac. But of course, that doesn't tell you if you actually have it.

I was in the same situation as you a couple of months ago...I found the gluten-free diet did wonders for me, but I was faced with quite the predicament:

I felt like if I was ever going to be taken seriously about my gluten intolerance, I should get something on paper saying so. After all, I couldn't just say I was Celiac if I didn't have a diagnosis. And what good was it to say I was just gluten intolerant?

But going back on gluten would mean severe neurological symptoms for me--full-body paralysis, non-epileptic seizures--in addition to GI discomfort and random bouts of D. Would I be landing myself in the hospital going back on gluten after a few weeks off? And how would I continue to work with my body being so unreliable?

So, after several chats with a few different doctors, I came to find out that ... guess what? They don't even care! They don't give a rat's patoot about a positive blood test or biopsy. They really weren't even interested in doing one, which almost kind of made me mad. Like, don't they care about my health? They just kept saying "if it bothers you, don't eat it." That's it. No referral, no guidance. And since then I've gone in to a few dr offices for various things and I say I'm gluten intolerant and they just accept it and yes, they do take it seriously. They may not have been any help at all when I didn't know what was wrong with me, and annoyed at me being proactive about my health ('hypochondriac!',) and now that I've figured it out they're all so inspired by how proactive I was about my health, but hey I don't take offense at that, really. [/sarcasm]

I've come to accept that Celiac, DH, and other problems, all fall under "gluten intolerant" and that it is a serious term. Most stores and restaurants use the term "Gluten Free" more than any other, and don't ask for my credentials when I order off the gluten-free menu or buy Bob's Red Mill products. My diet is perfectly legit with or without a blood test to prove it. I also have a very supportive Naturopath that I see who totally agrees with my decision to skip testing and get straight to feeling better. Because, when I thought about it, I could have tortured myself for 3 months to maybe get a number on paper, either way the end result which would have been that I just go back on the gluten-free diet. So I decided to just skip the torture. I'd obviously found the problem.

Now this was just my own personal decision and you'll have to figure out what's best for you and your son. You don't need a prescription or a doctor's blessing to choose what to eat (and what not to.) And in this day and age, it's pretty darned easy to find the resources you need to do it right. I mean, whether or not you get a referral to a nutritionist (who aren't that great anyway, IMHO...they're rather attached to the idea that you'll just die if you don't eat bread, horror of horrors...) it will still be up to you to do it right. And there are those here that will probably disagree with me, but that's fine. You'll get a broader range of input to your problem that way.

If you have other reasons to go ahead with testing, then you certainly should. Especially for your son if it's going to help him with getting help for other health issues. I think the best thing to do would be to find a doctor in your area that actually knows about Celiac so you can get an informed opinion. There is a section on this forum that might help you find a better doctor.

[Tallforagirl]

1. I've been gluten-free (with probably some learning curve mistakes here or there) for 5 weeks before getting tested after they failed to do my first test. Would the results of this blood test have even a ghost of a chance of being reliable? Would I need to eat much more gluten than just four cookies the night before the test at that point to have enough gluten in my system to be still causing an immunoglobulin reaction or damage?

2. Have I not been on this long enough, and should I just bail on the gluten-free thing and get these blood tests and, if necessary, a biopsy in a couple of weeks after subjecting myself to gluten again for a month? Or would it make sense to just continue on my course on my own, sans diagnosis?

To give you some feedback re 1 and 2, with reference to my own experience only (not based on any expert medical opinion).

I was retested three and a half months after going gluten-free and my tests (tTg and EMA) were still very positive, although the numbers had come down.

It took me nearly four months for symptoms to start appreciably resolving. I've read accounts of other who've said it took longer.