I Don't Think I'm Crazy, But I'm Open To The Possibility.

[samhill]

Warning, this is long. I need to write this as much as I hope someone can read it and give me a bit of advice.

I've felt horrible for years. I can't remember when I started bloating - even after just a bite or two of anything - but I thought it was normal and ignored it. I was uncoordinated and tired so easily that I couldn't participate in any competitive sport, so I took up art instead. In high school, I started having seizures, my memory would blank, and my back muscles would spasm, keeping me awake for days at a time. I went to a handful of doctors, even went up to Hopkins for testing, and they found nothing conclusive. They shrugged and wrote me an anti-seizure prescription. I stopped eating anything until 5pm or so, because anything I ate made me feel ill and to make it through the day I needed to have an empty stomach, and that was okay for a while.

A year into college, I stepped on a scale at a doctor's office and it said 103 - I'd always been slim, but I hadn't realized I was losing so much weight because my stomach always felt so full, and was always so round and protruding. More doctors - gastroenterologist, allergist, naturopath, etc - and no tests were conclusive. They did a colonoscopy and endoscopy and didn't see anything abnormal. They shrugged and wrote me an anti-anxiety prescription.

I decided to clean up my act - I'd cut out the sugary junk food I'd been eating at school, and get healthy. I started eating lots of whole grain breads, fruit, veggies, nuts, and drank soy milk, tea, and water. I read up on nutrition and made sure I was eating all the range of nutrients I'd need, supplementing omega3's, and so on. I scheduled regular meals, drank lots of water, got plenty of exercise. And I felt worse than I ever had in my life. I was depressed, exhausted, constantly bloated. I dropped out of art school because I didn't care, and couldn't muster the energy to get to the classes anyway. I didn't want to socialize; even the idea made me tired. I started having seizures again, forgetting things, and my mind felt cloudy. I felt like I was getting stupider by the day. More doctors - nothing to report. They shrugged and I told them I didn't want a prescription. This was the worst I'd ever felt - hopeless, depressed, exhausted, with no answers and no ambition.

I read all over the internet. I'm not going to go into the odyssey of elimination diets I tried, but eventually went gluten free and wow. I had energy. I felt creative again. Lifelong depression had evaporated, and I could focus on things. Six months after going gluten-free, I went on a NOLS semester - three months of intense backpacking, climbing, caving, and canoeing. I had no experience in any of it, but I didn't care. I could finally do these things, and I jumped into it. And I loved it.

Since I stopped eating gluten, I've had times where I decided I didn't care - out at a restaurant, partying with friends, and so on. I always paid for my transgressions with three days of exhaustion, detachment, irritability and dark moods. The bloating's never gone away for long, but the Specific Carbohydrate Diet has helped.

In December I graduated with a degree in Outdoor Education. There aren't many jobs at the moment, so I moved in with my family to work for a while and save up money before the next big adventure. My family is very supportive, especially since my mom and grandmother have both had nasty lifelong undiagnosed gastrointestinal troubles. But my friends and doctors treat me like a hypochondriac. I don't actually have a diagnosis - all I know is that when I don't eat gluten I can go rock climbing all day and dancing all night, then do it all over again indefinitely; when I've had gluten I can't get out of bed.

Since moving back, I started feeling sick again, like I was getting glutened. But I wasn't cheating (I know better at this point), and I was preparing all my own food, on my own pans, being very careful about hidden ingredients and cross-contamination. But I couldn't find any source of gluten that might be getting me, and started thinking maybe there's something else going on and that the gluten thing was all in my head. Maybe it's just some psychosomatic unconscious bid for... something. I was getting more and more tired; I stopped going out with friends, stopped exercising, stopped drawing, stopped reading. Whenever I had a day off I'd spend it in bed half-watching dvds on the computer. I finally realized last week the lipstick I'd been using since I got home had gluten in it - I stopped using it, and I feel worlds better just a few days later.

I had an endoscopy on Tuesday that I'd scheduled while I was feeling unwell. Beforehand, my gastroenterologist told me to eat gluten for the five days leading up to it, so if it was damaging the villi he'd be able to see it. That didn't sound right to me - if they didn't find any villous atrophy when I was 103 pounds and at my worst, why would five days do enough damage for him to see? So I didn't. But the way he talks to me makes it evident that he thinks I'm an overly anxious hypochondriac who needs to get off the internet. My psychiatrist seems convinced of the same - she insinuated that I'm making myself sick (consciously or unconsciously) because I don't like being back with my family, and even brought them in for family counseling. Which was awful. I mean, we're as dysfunctional as the next family, but we get along fine and enjoy each other's company.

So here's my question. Could my lipstick have made me ill like that, or am I just grasping at straws here? It's the only thing that could possibly have glutened me, as I'm very careful with everything. I never wore makeup when I was at school. Does anyone have any advice, stories, anything? I'm feeling very cut off. I don't think I'm crazy, but I'm open to the possibility. All I know is that there's an unerring correlation between me eating any amount of gluten and me feeling tired, depressed, and just generally awful. Can celiac manifest in symptoms like that, before progressing to destroying villi? Did I just catch it early, or am I barking up the wrong tree?

I've been gluten-free for about a year and a half, so the biopsies and blood tests would be negative. What do you think?

[RiceGuy]

I think you're more than sane in your decision to be gluten-free. It's perfectly obvious to me that gluten harms you, regardless of whether there is any detectable intestinal damage or not.

You are not imagining things, but your doctors might be! I don't believe you need a psychiatrist.

Yes, lipstick can do what you've observed. Even shampoo can cause a reaction. So can inhaling dust from wheat flour, which can remain aloft for several hours.

Welcome to the board!

[tarnalberry]

find a new doctor, skip the tests.

if smacking yourself in the head with a hammer hurts, would you keep doing it? no. and there are a number of doctors who recognize that.

listening to your symptoms and your body and your experiences is more important than listening to someone who does not know what you are going through.

[Mtndog]

Clearly NOT crazy (at least about this anyway!

I had a very similar experience with my first 2 GI's and I now have a GI who wouldn't ask me to do the gluten challenge because she knows (and BELIEVES) how sick a little bit makes me.

Listen to your body- look what it told you- without gluten you could backpack, rock climb and have fun! With it, blech.

I always believe in what my body tells me (hey- they don't call it listening to your gut for nothing!)

[chasbari]

I can relate to so much of your story and for years was willing to succumb to the doctors' judgement that I was, indeed, crazy. I figured they must be right and, after all, I can get pretty creative... Still, it was a major step to stand up for myself regardless of others' opinions. I now know definitively that I have celiac and discovered what a real glutening feels like this week. I also found that I had to remove myself from the kitchen when my wife was baking cookies the other day as I was beginning to have the pain return from my prior glutening pretty rapidly and was feeling nausea as a result... so hard to remove myself from that situation but I have to protect myself if I am going to heal. Trust your "gut" instinct. Sounds like you are far more level headed and sane than the professionals you have been dealing with.

[rinne]

What everyone has said.

This is a good place to hang out and be normal, we are all a little crazy here. I'm thining that pretty much everyone here knows what it is like to deal with others who just don't get it.

[Takala]

Sane.

Don't be upset when your biopsy comes back negative because the gastro made up some number off the top of his head that has no basis in reality. They make money in American medicine by running tests, not by diagnosing you. You can do internet searches for the emotional effects of gluten on the gluten intolerant and celiac, technical and not so technical, and print them out and hand them to the psychiatrist the next time you see her, with a suggestion that she make an effort to educate herself about the disease, because calling people with a biological, organic, genetically based, ongoing auto immune reaction to something in their enviroment, "hypochondriac" is grounds for malpractice. Don't forget the cites where they say that the majority of people with it are undiagnosed for most of their lives until a secondary complication or disease gets them. 30% of the population carries the genes, only a few get triggered. In fact, if she were competent.....

.... she won't like that very much. Tough.

Ask yourself what is different now about your diet (or cosmetics, and don't forget not to let somebody kiss you after eating unless they're eating your food or cleaned up first, bet you didn't think of that one.... by the way, are you drinking? Is the beverage gluten free? See the wine threads. What about any medications ? ARE THEY GLUTEN FREE ? btw, bc pills, the artificial progesterone in them can cause depression ) than what was before you moved in with the family.

Keep in mind right now, since you deliberately glutened yourself for the test, you still have the residual side effects including heightened sensitivity and doubt.

You also may end up taking out most soy (depresses the thyroid, is a bug a boo for many here) or dairy or at least dairy with lactose like regular milk.

You're taking a gluten free B vitamin complex and a calcium/mag/D supplement, right ? If not, hop to it. Those B vitamins help with mood. You do not want your bones to look like my bones did by age 30. Fortunately, bone remodels if you feed it correctly.

I don't worry about what other people think. I also self- diagnosed. I do keep a folding cane in my vehicle as a reminder. I hiked 4 miles yesterday. I'm over the hill and rolling.

[Rebecca's mom]

You may want to ask your doctor to run a GENETIC test for Celiac, along with the antibody tests. It should be called something along the lines of "HLA-DQ Test for Celiac Disease". Your genes don't lie......

There are people who don't carry the "standard" genes for celiac disease, yet do very well on a gluten-free diet. It won't hurt to have the tests run, though - if for no other reason than to rub the Dr's nose in it.....

[Gentleheart]

Poor thing. I'm sorry you are being treated so badly by your doctors. Shame on them for making you doubt your own sanity.

Many of us know exactly how you feel. One day when this disease is fully understood, people who should have been helping us will hopefully look back and realize how unkind they have been. Many celiacs have been accused of being "crazy." It just goes with the territory.

You stay strong. You are on the right path. Don't let them discourage you or make you doubt what is obvious.