Here are several clips of comments from Laura, taken from the celiac listserv, with links to her webpage. Laura posted the following question on the listserv, which prompted a summary of responses and personal dialogue. Thank you Laura for sharing your experiences during incredibly difficult years of your life..

Laura’s question:

If you were affected by gluten psychologically - and you got a celiac blood test or biopsy - could you tell me if the tests were positive or negative?

I'm curious about how often people have psychological effects from gluten - but the official tests are negative.

Thanks
Laura

Summary:

The reason I'm wondering about this is that I read psychology books, about depression for example, that talk about therapy and they talk about psychiatric drugs for depression.

And I think, is there a HUGE BIG thing missing? Food intolerance? Gluten intolerance?

And I wonder: would these authors object: only about 1% or 1/2% of people have celiac disease according to blood tests or biopsy. So while celiac sometimes has severe psychological effects, it's not that common so it's not that big of a hidden problem.

But how far does the underdiagnosis of gluten/other foods as a cause of psychological issues go beyond the underdiagnosis of celiac disease? How many people are affected emotionally and psychiatrically and neurologically by gluten who would test negative on the standard celiac tests?

One person gave me what looks like a good website:
http://www.glutensensitivity.org

Seven people told me they had positive blood tests or biopsy and they Were psychologically affected by gluten.

Eight people told me they'd gotten the tests - while on a gluten diet apparently - and they'd been negative, and they were psychologically affected by gluten.

It's the roughest kind of guess about how many are psychologically affected by gluten while not being positive on the standard tests, but it does indicate the problem goes beyond under-testing for celiac disease!

I was really, really severely affected. I had severe anxiety which got a lot better; being free of my food intolerances - including gluten – has made me more emotionally stable. I used to get so tense when small annoying things happened that I would have to soak in a hot bath for hours before my muscles would relax. I went crazy as a teenager labeled schizophrenic, my brother labeled with manic depressive psychosis); I never went crazy after that - partly I think by shaping my life around avoiding stress. I had mildly hallucinatory aspects to my vision though, off and on. At one time I saw the world as if behind cellophane, as if there were wriggling under cellophane and the world under that. I attributed this to repressed emotions and it went away after two years of the repressed emotions exploding, but I had other kinds of slightly hallucinatory perceptions. My mind was just generating a lot of these very vivid, very attention grabbing perceptions. None of this any more on a gluten free diet.

I was suicidally depressed often for decades, this didn't go away on the gluten free diet but when I found out about 30-100 other food intolerances that had been hidden, it did go away. I attributed this to fructose intolerance caused by eating gluten and is known to cause depression ... maybe other food intolerances can cause gluten intolerance too.

I'm Enterolab-diagnosed. I felt so much better after quitting gluten and other foods, after having really severe reactions to them after doing an elimination diet/food challenges. I wanted to start living a new life without gluten, rather than tormenting myself with a gluten challenge, so I never got the biopsy. It hasn't quite been a new life so far. I was sick chronically for years on gluten - unexplained sickness - and I was sick for a few years after quitting gluten, before I found out I actually had hidden food intolerances to almost everything I'd been eating while on gluten and maybe some intolerances that I got after quitting gluten.

I'm fairly healthy now except that I have 53 inhalant allergies which make me sick often.

Other people said they were depressed, seizures, learning disorders, extreme anger from gluten, brain fog ...

It's incredibly tragic ... for me, a life in internal imagery – very Vivid in one way, very limited in another.

Laura


I had drastic psychological effects from gluten included slightly hallucinatory vision - my webpage on it is at
http://www.lightlink.com/lark/why.html (overview) and
http://www.lightlink.com/lark/food.html has the main part about psychological effects.

My take on diagnosis was ... was that doing an elimination diet and food challenges is the way really to find out. I did it in stages like a lot of people do, it seems to be very difficult to do a strict elimination diet exactly right the first time, it's too hard to quit all of one's foods at once. What ended up really working for me was that I had a list of the top 20 food allergens - for IgE food allergies - and I eliminated all of those foods, and foods in the same genus or known to cross-react with them - like, all legumes cross-react with soy, so I didn't eat any legumes. There were a lot of foods not in that list that I did react to, but this cleaned out enough of the foods I was intolerant to for the elimination diet to work.

What I suggested on my webpage was getting testing for IgG antibodies from York Labs or something like that, so you know what to eliminate on the elimination diet, then doing food challenges to find out what's all right.

I got sick from all of the top 20 food allergens that I've tried.


Here is Laura’s story retold with descriptions of her neurological experiences with food intolerances. Thank you Laura for your willingness to share these incredibly difficult years of your life for the instruction and benefit of others.

I went crazy when I was 19: powerful, beautiful hallucinations and the abuse of my childhood, turned into poetic metaphors and images and visions. For decades I thought of going crazy as my way of trying to rescue Myself from abuse by telling the suppressed truth to myself, in the only way that I could hear it - in visions, and the voices of male authority. I didn't want to think of going crazy as an illness. It was so beautiful, so true: like I had been a living poem. So, I avoided psychiatrists and their drugs completely, except that antipsychotic drugs were forced on me while I was crazy; they brought me down to sanity again, stupefying me so completely that I didn't have the imagination to be crazy. But - I actually had a lot of physical symptoms too.

I was carbohydrate-sensitive, I found out at 20. I quit eating high-glycemic carbs and started using fructose (a low-glycemic sugar).Before, my anxiety had been solid, like a crystalline spiky substance that had crystallized around me and trapped me - and now, I could move again. I was still anxious but it was a feeling, not a solid thing. I'd also been tormented by dieting and binging on high-carb foods since I was 12 and that suddenly stopped.

When I did eat high-glycemic carbs, it was as if I'd plugged my finger into a light socket - I would get tense, jittery, hostile, anxious, spacey.

And some particular foods caused problems; after I ate carrots or apples or beans, I would have hunger pangs and tense anxiety. 25 years later, I found out that these food reactions were a food intolerance symptom. Now that I've found my food intolerances I can eat high-glycemic carbs like maple syrup, beet sugar, pineapple, cassava without getting jittery or spacey. I can't eat carrots or apples or beans; they are some of the many foods that made me very sick for days when I tried them, after an elimination diet. My hunger pangs after eating those foods were apparently a food intolerance symptom - someone told me the food irritates the stomach (?) which causes hunger pangs.

Starting when I was 20, I was sick a lot, about 6 weeks a year. I would get zonked sicknesses. Home sick in bed, I would feel tired and have to lie down if I walked across my apartment. I couldn't think, I would say to myself over and over "Night has settled into my mind". No other symptoms - I went to doctors for five years and they didn't help at all; they weren't able to diagnose me without definite symptoms.

I didn't go crazy again - I took my visions seriously - that was part of the reason - and I avoided anything stressful. But my vision was sometimes mildly hallucinatory. In my later 20's the feelings from my childhood exploded around me. The world looked like it was covered in cellophane, and under the cellophane, there was constant wriggling and the world was under that. The wriggling seemed to me to be my repressed feelings, and after my feelings exploded for two years, the world was no longer rippling under cellophane.

But later I had other visual perceptions that were almost hallucinations. My vision was very vivid and infused by my feelings. This turned out to be a food intolerance symptom (maybe from gluten specifically).
My vision is just vision, now, even when I've been very stressed. I was labeled schizophrenic; my brother went crazy several times in his 20's, and he was labelled with manic-depressive psychosis. If those psychiatrists talked to each other, it might be a shock to their diagnostic categories! I think the rest of my family is gluten-sensitive too; I told them about the gluten issue, but I don't know if they've done anything about it. I avoid them, because I don't want to get hurt by them.

I quit a job I really hated in 1995 - I knew I wasn't doing what I Needed to do. And that was the start of my discovery; I had time to try to solve my mysterious recurring illness problem. I found out that (part) of the cause of my chronic wooziness and zonked sicknesses, my feeling that reality was one step away, was inhalant allergies.

When I was 43, after a relationship with an abusive man ended, I got sicker. I had woozy sicknesses with lower abdominal pain and back pain, that went on and on and weren't helped by antibiotics. I would lie in bed, watching the waves of wooze wash over me and break on the walls.

Once I got very tired for days, I lost my appetite, I felt very cold Even in the warmest clothing - I had all the symptoms of iron deficiency, so I took an iron supplement and ate a lot of meat and I felt better.

I was addicted to milk (cross-reacts with gluten!). I tried an elimination diet and I felt better right away. I got very sick from food challenges: all grains, dairy, apples and citrus made me very sick for days, in a heavy groggy stupor. I felt like I was yanking a giant thorn - no - pulling a bramble out of my mind. I knew it was something crucial and very intense, very virulent. I could feel my mind changing around me in jolts. I took Enterolab's gluten sensitivity test, and my IgA antibodies and anti-TtG antibodies were very high.

I changed after quitting gluten and those other foods. I was a lot More sociable; I often start conversations now with people I don't know, I'm curious about people. When I was eating gluten, little things would upset me; my muscles would get so tense that I'd have to soak in a hot bath for hours to relax. I haven't taken a bath since (I do take showers :)

I used to hold my thoughts before speaking, I had a waiting room in my mind when they would have to sit before being able to come out. Now my words just come out of my mouth. I'm a lot less angry. It was also an incredible relief from anxiety. I'm much less uptight. When I was eating gluten my mind was very vivid; the activity of my own mind, the images in my mind preoccupied my attention. Now I'm more oriented to the outside world; I can get interested since I'm not constantly rocked by intense feelings any more.

I cried a lot for decades. I would get into these states where I'd Feel it was hopeless, nothing is ever going to change, why not kill myself? I still cried a lot and felt desperate after quitting gluten. I was very sick too; one summer I was sick for five months solid. I would do errands first thing in the morning and then I'd stay home all woozy-sick for the rest of the day - for five months. Then I found that the tiny traces of corn that were still in my diet Were doing it: the fructose, sorbitol, maltodextrins and other corn products that are in many foods. I quit corn completely; but then I was much sicker for a while, sick in bed with severe back pain and very woozy. I found that I had about 30-100 food intolerances I hadn't known about, and they were making me sick. In reality I had intolerances to almost every food I'd eaten while I was eating gluten - and maybe I'd even developed new food reactions after I'd quit gluten. After quitting those foods, my depression went away. I don't get desperate and suicidal any more. And I'd had an irritating fascination with graphics, with visual details of lettering and leaves - like I was pulled to pay attention to these details and I didn't really want to, I wasn't really interested in them. That compelled fascination went away after I quit those foods.

I live mostly on exotic foods now. Quinoa, malanga, acorn starch, unusual fruit, and the sweet foods that I avoided for years, I can eat.

I think the pitfall I fell into, of not finding all my food Intolerances because I didn't quit corn completely, happens to other people too. It's probably common to have a hidden corn intolerance, because corn products are used everywhere. If you are completely avoiding corn you can't eat almost any processed food. So that keeps corn intolerance hidden, because it's very hard to quit all corn products on an elimination diet.

People are constantly being exposed to corn unless they're very careful to avoid it, so their bodies mask any corn reaction they have. It's probably hard to imagine if you haven't been there, but I feel - I'm 46 - that I have to relearn everything, learn new habits of mind, because my mind has changed. What am I interested in? Who do I relate to? I think gluten-sensitive people relate to each other, we recognize in others the hyper-reactiveness, awareness, volatility that gluten causes.

So I might choose different people now. How do I get involved in things? I need to actively seek involvement, I'm used to passively letting my experience come to me, because when I was eating gluten my mind was spontaneously full of thoughts and images. Life is half made up of your own mind and reactions, and when your mind changes, you are left in a void, not relating to the things around you, needing to willfully create relations with people and thoughts and things.

I still get sick often. I have 53 inhalant allergies. Often some food molds in the fridge and I'm sick for days before I find it. But I think I'm on my way to healing. I get allergy shots, but they may not work: usually they start allergy shots at a concentration of 1 in 100,000, but they've got me at a concentration of 1 in 10 million and I still get sick from the shots.

So isn't it mind-blowing - I started out with a vivid, gorgeous Visionary experience and 28 years later, I'm sick with an immune disease? I wonder how often people who have a schizophrenic experience become celiac later? I've both been very mentally stimulated by gluten and stupefied, made sick and woozy and zonked, and it's all been part of an autoimmune process. ~~ Laura

Close: Laura's story Schizophrenia