Tested Negative While Eating Low Gluten

[Estrid]

Hi everyone, I'm looking for some advice.

I've been unwell since I was a teenager. I've always been lactose intolerant, and as a child my diet was comprised largely of pizza, macaroni and cheese, etc. With every meal we had bread. I always thought my gastrointestinal symptoms were due to the dairy in my diet. Over time I became horribly depressed and anxious. I didn't really even think to remove the dairy, but given my emotional state it was a wonder when I was motivated to do anything at all.

By the time I was 23 I had my gallbladder removed, and for the following three years I was chronically ill. I felt like I could literally digest nothing, but the worst of it for me was anything with a high fat content or dairy. I thought this was due to the cholecystectomy, and establishing that fat and dairy made my symptoms intolerable, I became a strict vegetarian. With this, I also began eating virtually no processed foods, if it was prepackaged I knew all of the ingredients in what I was eating. I usually eat a ton of fresh fruit and veggies, and as it turns out a huge portion of vegan products are naturally gluten-free anyhow. Due to the recipes I favor, I tend to stick to brown rice and quinoa for my grains. On rare occasion I would eat some local bread, or pick up wraps from our local co-op. Once in a blue moon I was eating at a local bagelry, and with even less frequency I would drink hefeweizen.

I would say the frequency with which I would ingest something containing gluten would be once or twice a week, usually in small quantity. I felt like I had my illness mostly under control, but I was still experiencing general malaise, anxiety, and occasional bouts of awful and chronic.

I still couldn't concentrate, and by the time I quit smoking (which took the edge off of the anxiety) I couldn't even read a novel. Reference material (required by my job at the time in supplements) was alright but anything beyond a couple of pages and I just couldn't focus anymore. I was on edge, irritable, and eventually developed a headache that felt like it'd persisted for months. I lost feeling in my feet, my weight has been all over the place (despite no relative shifts in calorie intake or level of physical activity). More recently, I've been having muscle weakness and pain. I walk everywhere (don't own a car), roller skate, and while I've moved to a sedentary job, I've never experienced anything like this. Getting up out of a car last fall I literally felt like I had ripped something in my quadriceps.

Well about a year ago, a previous coworker of mine with Celiac informed me she'd been observing me, my symptoms, and told me she felt I had Celiac Diease and should go get tested. She had previously explained to me her symptoms and this didn't seem to fit, so I guess I didn't believe her. Regardless, I knew something was up so I scheduled an appointment with a Gastroenterologist. I sat with him and explained the gallbladder surgery, my symptoms, and his immediate response was "I think your symptoms are indicative of Celiac Disease" and referred me to a facility for a blood test. It took me about a week to get to the clinic to get my blood drawn, and in the week previous I had eaten exactly two items containing gluten, the aforementioned wraps from the co-op (I can only ever eat half of these in one sitting), and a bagel.

My test came back negative, and went about my business as usual, feeling kind of hopeless but otherwise like life would go on.

Last winter I had a rough couple of months with the economy, my family literally lost everything. I ended up drinking a -lot- of beer, eating pretty poorly (still vegetarian, but a lot of sandwiches, faux burgers, etc) and became sicker than I'd ever been in my life. Even with the worst of my symptoms following my surgery. I moved to a high stress job (not realizing it would be this stressful) thinking I was unhappy with where I was. A few months ago I started having panic attacks on top of all other symptoms.

Well. About two months ago now I had a buddy from California move in with me and my fiancee. He was telling me he couldn't eat wheat because he was "allergic", diagnosed in 1983 as a toddler. He was still eating white bread (I was aghast, along the lines of "does he not realize that contains wheat?!") and he's -clearly- intolerant to wheat if not outright celiac. He hadn't seen a doctor since his childhood diagnosis for this, and his mother had a difficult time keeping him gluten-free (sounds like she gave up) so he's been struggling with this for a long time. He's highly neurologically symptomatic, and I decided to run him through all my reference material on the subject and try to help him with going gluten-free until he can see a doctor.

He's feeling a lot better now, but in reviewing this again I became concerned my test results might have been a false negative (maybe due to the low amount of gluten I was consuming). I went gluten-free myself about a month ago (completely) after a run in with some vegan pizza that left me damn near bedridden for the better part of a week. I've been feeling like a million bucks. I wish I had a way to explain the difference I feel this is making.

I have an appointment scheduled with my Gastroenterologist on the 20th, but I'm not sure how to broach the topic. I've read that the amount of gluten containing foods you consume can have a relatively dramatic impact on the accuracy of the test results in many people, and he hadn't mentioned that I needed to be eating any gluten at all, much less "loading" as I've seen it referred to. Is this normal?

Having been mostly gluten-free for a couple of years, totally gluten-free for more than a month by the time of this appointment, what is the likelihood in the event he decides to run a biopsy that I'll just have the same end result? I'm concerned that while my doctor is awesome and obviously has the best intentions at heart he may be missing some important factors. (One of which, when I complained of my prolonged headache he said he felt that that wouldn't have been associated with Celiac and I should consider a CT scan.)

Sorry for the wall of text. I hadn't realized how long this would become. :\ Thanks so much for any help.

[dtgirl]

Hello and welcome. You could have def. had a false negative. If you feel wheat/gluten is the problem, perhaps you could avoid it entirely without an official diagnosis? Or, maybe eating a lot of gluten products before the test? I am not sure about that, I know how I react when I eat it and I can barely function. Just something to consider. Also, have you had extensive lab work done? Your symptoms mimic autoimmune disorders, which is why I ask. Often times, celiac goes hand in hand with many autoimmune disorders. I would get a ct or mri, they are very useful tools there could be a myriad of reasons why you have a headache. I found I have a pituitary tumor, for example. Have you ever seen an endocrinologist? On another note,I am sorry to hear about your bad luck with the economy, these are certainly tough times. Hope things get better!