Our daughter Su, 22, tried a 6 week gluten/dairy challenge after being off major forms of wheat for 8.5 years, the last 6 months strictly gluten free. The challenge was miserable, but her blood and biopsy tests at the end of the challenge were "stone cold negative”. During the challenge,  AND AFTER SHE RETURNED to a strictly gluten free diet excepting weekly communion loaf, she began to crash repeatedly into severe “black pit” depressions. This continued for over 3 months after she returned to a gluten free/casein (milk) free diet. During this time, she expressed that she may have experienced a breakdown, the experiences were horrible and awful and she might not ever be the same person. She refused to tell us all her symptoms ("Mom, you don't want to know!"). She was too ill to attend most of her summer college classes, to work at a hospital as planned or at one point to even get out of bed, and she avoided family gatherings that she normally enjoyed.  That fall her nursing school performance plummeted from honors grades to failing for the first time in her life. 

We suggested Su discontinue communion loaf but Su was not willing to give it up since her standard tests were negative.  This and several other situations indicated that Su was not thinking clearly. 

After we watched her struggle in 2nd year nursing school for 6 weeks we requested permission to provide a gluten free communion loaf for our church service and the elders cooperated. Her joy was obvious when we informed her of the church decision.  Several weeks after the loaf change, Su was able to describe to us how much better she felt and she unequivocally attributed her relief to the communion loaf change.  She paced her workload, remained vigilant with her diet and continued to stabilize.  However, four months after the communion loaf change, she baked cookies with wheat flour and although she did not eat the cookies, she crashed again. (Her abdominal pain and black pit depression reactions last about 2 weeks each.) Five months after that baking incident, she had another “gluten mistake” and, although she experienced severe abdominal pain for days, thankfully she did not crash into a depression.  She graduated college/nursing school Summa cum laude - 2 degrees) that spring.

Our family history on all four sides, both genes and symptoms, strongly indicate The gluten syndrome. My husband’s aunt is a diagnosed celiac, and my husband has been miserably chronically ill for 35 years.  Su and most of our 6 sons experienced digestive symptoms upon introduction of gluten in infancy. We withheld or delayed wheat ingestion for our babies but mistakenly reintroduced it later.  They experienced symptoms including severe constipation, knee pain, alopecia areata and ADHD/ADD in childhood including ADD/ADHD which we did not connect with the gluten syndrome.  Now in their early-late 20's they have symptoms including T-1 diabetes, knee and back problems, headaches, constipation, milk and egg intolerance and other digestive issues. Nevertheless, standard celiac test panels from recommended labs were negative for our entire family with the exception of a positive tTG from my husband.  Six months later, still on a gluten diet, his second tTG was negative.  Enterolab panels for the family were all positive.  We now know that the standard blood tests were not complete enough.  There are more antibodies to check in more places in the immune system.  Neuroimmunology Labs, Wisconsin, offers much more detailed panels but there are some gluten related antibodies for which there are no tests at present.

We conclude that Su requires a strict gluten free diet.  She does not meet current diagnosis criteria for the celiac disease subset of the gluten syndrome because villi are not always the place of damage. Obviously her brain and nervous system were affected by a strong reaction to the gluten challenge. She carries a double copy of the DQ 2 gene and her Enterolab antibody AGA-IGA test was positive. Enterolab tests are un-validated although the research is announced.  We learned from sad experience that when an accredited lab such as Enterolab finds elevated antibodies to  gluten grains, we must take them very seriously.

We also conclude that a gluten challenge, particularly since Su was previously gluten free for a long time, was a seriously unwise choice considering the small statistical chance ( 1 in 56 ) of a celiac subset diagnosis. (That was all we knew to test for at the time.)

We continue to study the gluten syndrome for clues to her and our family's health challenges, and continue to search for other relevant unknown factors.

Update: May 2007

Three years after Su's disastrous gluten challenge, Su is doing well.  She is a nurse.  She is still very very strictly gluten and dairy free, and avoids toxins and junk foods in general.

Update:  2008

Su got married this year.  The wedding receptions were gluten, dairy, soy, GMO* free. 

Sueson Vess, owner of Special Eats (www.specialeats.com) 630-846-4605 and author of the excellent cookbook "Gluten and Dairy Free Cooking", oversaw the reception food. She did a marvelous job, despite numerous serious challenges.  Sueson is well known in the Chicago area as a professional chef and consultant for the food intolerant community.  Our family heartily recommends her services.  We also thank Andrew Brodell, The Casual Gourmet, Northbrook, IL. 817 530-9798,  abrodell@sbcglobal.net , who filled in for us 4 days before the wedding when another caterer without warning cancelled their services!! Andy's wife is newly diagnosed with celiac disease.  Andy was wonderful, kept the schedule, and baked a delicious wedding cake.    

* GMO - Genetically modified organism  For more information see www.seedsofdeception.com

Hello All,

I have been meaning to write to this list for a long time about genetics and celiac disease and since there have been many questions lately referring to this topic, it is a good time to summarize what happened to my celiac daughter……Sorry that this is so long.

My daughter, Allison was diagnosed with celiac disease 8 years ago, when she was 5 years old, by both blood tests and endoscopic biopsy. At the time, the only celiac symptom she had, was that she basically had stopped growing. She was very tiny for her age. We were very lucky to have a knowledgeable endocrinologist that figured out that she had celiac disease right away and not some kind of growth disorder.

Fast forward 6 years……At the age of 11, Allison was still extremely tiny for her age. She was 2 years bone age delayed and was growing at a very slow rate. From what I have read, most kids who are small because of celiac disease, make up their growth deficiency after going on a gluten-free diet. So, back to the pediatrician to discuss why Allison was still not growing. Our pediatrician sent us to a pediatric gastroenterologist Dr. to find out if there was something else going on with Allison in addition to the celiac disease.

Our new gastro Dr. first suggested that we start with blood work to make sure Allison had normal TTG and IGA and anti-endomysial antibodies. Just to make sure that we were doing well with her GF diet. We had blood work done by Prometheus Labs. At the same time, our new Gastro Dr. suggested that we also have Genetic testing done by Prometheus as well. So, we had all of these tests done. Her blood work came back perfectly. One glitch, however….Allison DID NOT have the genes for celiac disease. NO DQ2 and NO DQ 8. Wow, what a surprise. We wondered if we were wrong all along about her having celiac disease after all of this. So, just to make sure, we had the genetic testing done a second time. (I might add that this is $1500.00 each time. Our insurance does not cover this). No genetic markers for celiac disease showed up the second time either.

So, then what? I started researching the archives and wrote to Dr. Fasano and others about whether or not there was such a thing as a person who DID have celiac disease but DID NOT have the gene markers. Dr. Fasano wrote to me and told me that there was a very small percentage of people who might fall into this category. My gastro Dr. (who by the way, went to Stanford) said that if Allison did not have the gene markers, that she DID NOT have celiac disease. She recommended that we put Allison back on wheat. I think somehow she thought that if Allison went back on wheat, she might start gaining weight and grow.

Next, introducing wheat. So, we gave Allison bread or some kind of wheat every day. Remember, Allison never had any symptoms of celiac disease except for lack of growth.

Nothing happened. She didn’t get sick or vomit or diarrhea or anything. She ate churros and Krispy cremes and all of the things she always wanted to try since being diagnosed at 5 years old. When we started her on wheat, it was about Thanksgiving time. In March, we were on vacation and Allison vomited. Then, diarrhea. Then, migraine headaches and she got VERY, VERY, sick. Within a two weeks period of time, I think she lost 5 lbs. At age 11, she was now down to 48 lbs.

I called her gastro Dr. and she said that we needed to do her blood work immediately again to see what was going on. Well, as I’m sure you have guessed by now, Allison’s TTG levels were extremely high and her Dr. confirmed that she definitely DID have celiac disease after all. Her Dr. then did another biopsy just to make sure.

After Allison had her second biopsy and we put her back on the GF diet, her gastro dr. wanted to test her blood every three months to see if her TTG levels and IGA were back to normal.

It took OVER NINE MONTHS for her TTG to get back to the normal range.  That was really a surprise to me.  It took a very long time for her gut to heal and for her to feel better again just after eating wheat for 4

months.

So, since all of that, Allison is now back on a GF diet and healthy again. She is still VERY tiny. We just don’t know why. She has had every test known to mankind. We are just happy that she is healthy now.

In summary, I will say this. We now know that you definitely CAN HAVE celiac disease without having the genetic markers for it. Do not think that if you don’t have the genetic markers, you don’t have celiac disease. My daughter is living proof.

One other interesting thing that is discussed on this list quite a bit. It took 4 months of eating wheat before Allison showed ANY signs of being sick. So, it can take a long time for gluten to do damage in the intestine. It is not necessarily an immediate thing.

Have a great day,

Beth Kassis

El Dorado Hills, CA

"Just wanted to say thank you for the 60+ replies I received. Most were diagnosed by biopsy but some just bloodwork and a GF diet.

Just to give you a background - as most of you know - my daughter who is 4 1/2 years old no was diagnosed at 18 months with cd.  She was diagnosed by bloodwork only.  When she was born she had a seizure disorder, low muscle

tone, and later had a speech delay.  She had been through TONS of bloodwork at two different hospital as well as MRI's, EEG's, and Cat Scans - all of which she needed to go under for.  So when she was 16 months she had a viral infection with diarrhea which lasted about 6 weeks.

We then brought her to a wonderful gastro doctor who ran a battery of tests and her TTG levels were elevated.  He suggested that we put her on a GF diet and retest her in 6 months.  So we did and her TTG levels were negative!  He was amazing and gave my husband and I an enormous amount

of credit for adhering to the diet.  She then started gain weight, speak more, her moods had greatly improved, her muscle tone had gotten slightly better, her stomach did not hurt anymore, she did not have diarrhea anymore, she did not zone out nearly as much and her energy level had changed enormously.

So we left her on a gluten free diet now for the past 3 years and she has made tremendous strides with her moods, energy levels and growth. 

On occasion she has had accidents and we see the differences it makes. 

So yesterday was her annual check up and her first gastro doctor had left the practice to become a nutrition doctor and referred us to another doctor there.  Well she came in and the first words out of her mouth were your child doesn't have celiac disease.  I was floored.  The first words out of her mouth for not even seeing my daughter was she didn't have it. She said "This genetic test result shows negative...so I pointed out that the genetic test was for my other daughter not the one she was seeing. Now I know that the golden rule is a biopsy (editor's note:  biopsy is only the golden rule for the villi damaged celiac disease subset of gluten sensitivity), but we, along as her original gastro doctor thought that a biopsy at this point in her life with all that **** she had been through was not necessary.  Her blood work as well as her tremendous response to the gf diet was good enough for all of us.   Plus the fact that when she does eat something with gluten in it, she has all classic signs of CD.  The doctor was very belligerant and spoke to me like I had no idea what I was talking about.  She said "Celiac Disease is a lifelong thing, an allergy to wheat is something she will grow out of."  Then proceeded to name every case she has seen and that she would show me charts and before long, she had my daughter all scheduled for the biopsy.

I was livid.  So I asked her if she has the disease or the allergy, what would I do differently?  She said nothing.  So what's the point then?  She has classic CD symptoms when she is glutened.  Her mental capacity is severely diminished - which I was under the impression was not due to an allergy.  I told her I would not be doing the biopsy.  I didn't feel the need to have her go under again for 2 biopsy's, one now and one in 6 months after her being gluten for all that time.  I did not want to put my daughter through 6 months of **** with stomach pains, diarrhea, mental instability etc.

Now I know that most of you are going to yell at me for not doing the biopsy, but at this point in her life, its just not something I want to put her through.  She has responded to the GF diet and I am okay with her being normal.  If she were to go through the process of eating gluten for the biopsy, I just don't think that is fair to her.  When she is glutened she complains to me that her tummy hurts and she feels funny - and when it finally gets out of her system, she says "oh mommy I feel so much better."

So thank you for letting me vent about a doctor who should learn a little more on bedside manners.  Oh and btw, when she finally examined her (we waited 2 hours in the waiting room) she looked in her nose and throat and told me I should have her tonsils and adenoids removed that she knew someone (a referral)!  I told her that we already have an ENT that we love and when she didn't know who they were (different hospital affiliation) she told me that they weren't good."

Thanks again

Jennifer

NJ

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