Gluten-Free Kathy’s Weblog

a healthy strong life on a gluten-free diet

Psychology of Celiac Disease September 24, 2007

Filed under: Celiac Disease,Gluten Free,sports nutrition — glutenfreekathy @ 8:41 am

Kayaking in New Zealand after celiac disease diagnosis

Psychology of Celiac Disease

I am doing research on the psychology of celiac disease.  I see two areas of concern for adults diagnosed after suffering for a long period of time.  One concern is not sticking to the diet.  Personally, I am not even tempted to eat a gluten-containing food because I was so sick before going on the gluten free diet and now I am trying to have a healthy, strong body.  I have found cases of people who do, though.  Some actually eat gluten to keep their weight down as they are afraid to gain weight as their intestines heal and they absorb nutrition and calories. 

Another concern I have is the feeling of never being full, never getting enough nutrition.  We were essentially starving when our intestines were compromised. I ate all the time and yet was always hungry.  It is hard to get that feeling out of your brain even though you are now recovered through a completely gluten free diet.  The concern is that the celiac patient will overeat to compensate for the hunger that they have experienced.

From personal experience I feel that the celiac disease patient can go on to be as active as they want to be and certainly compete to the extent that their training and abilities allow them.

If readers have any thoughts or experiences on the subject I would love to hear them.

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16 Responses to “Psychology of Celiac Disease”

  1. [...] gluten free diet and now I am trying to have a healthy, strong body. …article continues at glutenfreekathy brought to you by diet.medtrials.info and [...]

  2. Neal Says:

    references on depression and celiac disease from celiac.com

    http://www.celiac.com/st_main.html?p_catid=85

    From Kathy: Thank you, Neal. I looked at these articles, they are interesting and bring up important issues. People with celiac disease should be aware of the possibility of depression.

  3. Mable Says:

    Hi,
    This is nice to visit your site. I found it very interesting. Now a days many people are facing this health problem. so this site would be helpful for them to clear their troubles. Thanks for providing this information in this site. Recently i had been for a site, which is related to your site. I think it would be useful to you and your visitors, for getting more information you can visit this sitenutrition

  4. Neal Says:

    I spent a couple of hours doing a more expanded literature search on medline. There are quite a few articles on related topics — effects of CD other than GI effects, including neurological and auto-immune issues, and long-term health after going on a GF diet (10 years plus). From a brief reading much of this research is recent (last ten years) and seems to add important pieces of the puzzle beyond what I usually see discussed online or in popular books. When I get the time I will sort through the references more carefully. Does anyone out there know of a good source for relevant research references, more extensive than the one cited at celiac.com?

    from Kathy: Neal, do you have personal experience with this issue? I wonder how you’ve dealt with it – if you feel like sharing your experience.

  5. Neal Says:

    Perceptions of health-related quality of life of men and women living with coeliac disease
    Scand J Caring Sci; 2003; 17: 301-307

    Reversal of psychopathology in adult coeliac disease with the aid of pyridoxine (vitamin B6).
    Scand J Gastroenterol. 1983 Mar;18(2):299-304.

    Tryptophan as a Link between Psychopathology and Somatic States
    Psychosomatic Medicine 65:665- 671 (2003)

    Evidence of poor vitamin status in coeliac patients on a gluten-free diet for 10 years
    Aliment Pharmacol Ther 2002; 16: 1333-1339.

    Recurrent brief depression in celiac disease
    Journal of Psychosomatic Research 55 (2003) 573 – 574

    Range of Neurologic Disorders in Patients With Celiac Disease
    2004;113;1672-1676 Pediatrics

    http://www.pediatrics.org/cgi/content/full/113/6/1672

    Association between panic disorder, major depressive disorder and celiac disease
    A possible role of thyroid autoimmunity
    Journal of Psychosomatic Research 53 (2002) 789 – 793

    The neurology and neuropathology of celiac disease
    Neuropathology and Applied Neurobiology 26, 493-496

    Neurological manifestations of gastrointestinal disorders,
    with particular reference to the differential diagnosis of multiple sclerosis
    Neurol Sci (2001) 22:S117-S122

    Neurological Manifestations in Coeliac Disease
    (academic dissertation by Liisa Luostarinen)
    University of Tampere, 2003

    Neurological complications of coeliac disease
    Postgrad Med J 2002;78:393-398

    Gluten-free diet may alleviate depressive and behavioural symptoms in adolescents with coeliac disease: a prospective fol
    low-up case-series study
    BMC Psychiatry 2005, 5:14

    Degeneration of the Central Nervous System Associated with Celiac Disease
    Journal of the Neurological Sciences, 1982, 53:9-22 9

    Clinical, radiological, neurophysiological, and neuropathological characteristics of gluten ataxia
    The Lancet, Vol 352, November 14, 1998

    The neurology of gluten sensitivity: separating the wheat from the chaff
    Curr Opin Neurol 15:519-523

    Adult celiac disease presenting as cerebellar syndrome
    Neurology 1980;30:245

    Anxiety But Not Depression Decreases in Coeliac Patients After One-Year Gluten-free Diet:
    A Longitudinal Study
    Scandinavian Journal of Gastroenterology, 36:5, 502 – 506 (2001)

    Is celiac disease associated with Alzheimer’s disease?
    Acta Neurologica Scandinavica. 95(3):147-151, March 1997.

    Affective disorders and quality of life in adult coeliac disease patients on a gluten-free diet
    European Journal of Gastroenterology & Hepatology 2003, 15:1287 – 1292

    Unusual Manifestations of Celiac Disease
    Indian J Pediatr 2006; 73 (8) : 711-716

    Quality of Life of Adult Coeliac Patients Treated for 10 Years
    Scandinavian Journal of Gastroenterology, 33:9, 933 – 938

    http://www.informaworld.com/smpp/title~content=t713690387

    Epidemiology of Celiac Disease:
    What Are the Prevalence, Incidence, and Progression of Celiac Disease?
    Gastroenterology 2005;128:S47-S51

    National Institutes of Health Consensus Development Conference
    Statement on Celiac Disease, June 28 -30, 2004
    Gastroenterology 2005;128:S1-S9

    Ataxia and the Role of Antigliadin
    The Canadian Journal of Neurological Sciences
    Issue: Volume 34, Number 2 / May 2007, Pages: 193 – 196

  6. Neal Says:

    The braintalk forum on Celiac has a collection of references on effects of CD other than GI effects. The main neurological effects seem to be ataxia (loss of coordination?) and neuropathy (loss of skin sensation?).

    http://brain.hastypastry.net/forums/showthread.php?t=1700

  7. Lucy Says:

    Wow, Kathy, what a great list of references you and Neal have been coming up with. I found your site via a search on depression and CD for a post I’m writing – and I’ll point people here …

  8. [...] at Gluten Free Kathy is researching the psychology of celiac disease, and is compiling a list of useful [...]

  9. Sheltie Girl Says:

    Kathy – Thanks for sharing all the great links that you and Neil have found.

    There is a book I would recommend you read, The Second Brain by Michael Gershon. You can find it at Amazon.com. It is an excellent book and technical book on the function, psychology, etc. of the gut and it’s control of the body. You might find some information in it that would be helpful. My doctor had me read this when I was first diagnosed with gluten sensitivity.

    Sheltie Girl @ Gluten A Go Go

    Thanks for the recommendation. I’ll look into it. —Kathy

  10. GFTiff Says:

    Great topic! I am reading a book right now called The Slow-down Diet, by Marc David. It is about the connection between the brain and the stomach. It is more about the feelings you “feel” when you eat, and how that affects digestion, not the science. It is very interesting.

  11. Neal Says:

    …effects of CD other than GI effects, including neurological and auto-immune issues, and long-term health after going on a GF diet (10 years plus)…

    Kathy: Neal, do you have personal experience with this issue? I wonder how you’ve dealt with it – if you feel like sharing your experience.

    Kathy, The only thing I know for sure is that gluten affects my GI tract. Beyond that I’ve found very little definitive information about either short-term or long-term health effects. That’s why I’m interested in reading all of the studies that I can. The studies are often poorly done, but at least they’re something.

    There are many affects I wonder about. The most important ones to me are psychological (e.g. mood – I hate waking up feeling queasy and sluggish, memory, mental clarity, energy level) and possible long-term physical effects (e.g. weakness or loss of coordination, decreased thyroid function, etc.) the latter concerns are really in a grey area — are they reasonable concerns? are they worth worrying about? I really don’t know. It makes it hard to know how to manage the disease.

    Along the same lines, it’s not clear what degree of exposure I should worry about (e.g. cross-contamination… how much should I worry about my housemate’s flour, or the products that contain no wheat but are “made in a facility that processes wheat”.)

    In 1996 I reduced wheat consumption to occasional. Around 2005 (as a result of enterolab testing) I reduced it to _no_ intentional consumption of wheat or barley or rye. All of these changes clearly helped. Still, in the last few years I’ve regularly had low-grade symptoms off and on, and I’ve steadily worked to decrease my gluten (and now dairy and soy) exposure further. Often low-grade symptoms happen, I try to figure out why, and I make a change (e.g. avoid most oats (cross-contamination); avoid miso (barley); avoid eating out unless the cook knows about gluten intolerance – more and more cooks do…) My goal is (hopefully) to get to the point where I seldom have even low-grade GI symptoms. I think I’m getting there.

  12. Michelle Says:

    I need a little help I was officially diagonosed three years ago I have DH but also have intestional issues for most of my life, I follow the gluten free diet very religiously my problem is I am 50 pds overweight and I am very depressed I also have HBP and a thryoid condition. I eat barely 1000 calories a day. I tried weight watchers and they laughed at me Is there anyone else who has these problems?

    I’m sorry you’re having so many problems, Michelle. I am not qualified to address your medical conditions but encourage you to find a doctor who can. Perhaps an integrated medicine physician would provide you with more options. You can search for an integrative medicine physician at this site: http://www.acamnet.org/site/c.ltJWJ4MPIwE/b.2071557/k.7C1E/ACAM_Homepage.htm
    Are your HBP and thyroid condition under control?

    I know how badly you can feel with so many medical conditions going on. Stay positive and keep trying to find a doctor or dietician who can help you. Are you near a major celiac center at a university or major hospital?

    Have you tried searching on the forums at celiac.com for other patients in your situation?

    Good luck with your search. Kathy

  13. Alena Says:

    I found your website when searching CD and psychology and I was wondering if you could answer any of my questions! I’m 18 years old and fell ill in 2004. After having glandular fever multiple times, chronic fatigue, anemia and depression, they diagnosed me with CD in October last year. Before I fell sick, I used to be a very smart girl and I never had any problems with my grades, but in the last couple of years I have struggled to learn new things and to get reasonable grades. This may be partly because I was out of school a lot but even now that I am at university and attending all my classes, I am still struggling to learn. My short term memory is really bad, as in I forget conversations, people and things that I do. This is very worrying with exams coming up! Is there any relation between CD and psychology problems to do with learning ability and memory? I know that there is in young children but could this still affect me? I would love to hear from some people who have the disease and not just doctors who do not know much about CD!

    Hi, Alena.

    I can only relate my personal experience and what I have learned through my research.

    It is interesting to me because I am just coming to realized that I probably have adult ADD. I also get depressed at times. I’m not sure how they all come together but I found this in the book by Dr. Peter H.R. Green, “Celiac Disease A Hidden Epidemic”:

    Attention-Deficit/Hyperactivity Disorder (ADHD)/Autism Spectrum Disorder (ASD)

    No studies have shown an association between ASD or ADHD and celiac disease even thought the gluten-free diet is being used in these populations as potential therapy. The association appears to be purely anecdotal, but there is little scientific research at this time. However, many children are placed on a gluten-and casein-free diet. (Casein is the major protein found in milk.)

    One study examined an apparent increase in inflammatory cytokines in the intestinal mucosa of children with ASD. They concluded that the “therapeutic modification of cytokine activity may provide some insight into their role in the neurodevelopment features of autism with the theoretical potential for cognitive benefit.” Intriguingly, the therapeutic modification of cytokine activity is part of the current research into a treatment for celiac disease. This study also suggests that the potential influence of gluten and/or casein merits further study.

    Celiac disease is seen in children who have psychological problems, developmental disorders, and ADHD. The ADHD and ASD diagnoses have increased recently, and the connection with celiac disease would be an interesting long-term study.

    When you think about it, it makes sense that you weren’t doing as well in school when you were sick. Your body isn’t getting the nutrition it needs and your brain needs that nutrition.

    My son found out he had CD when he was 24. He said he felt better when he began the GF diet and noticed he wasn’t depressed and felt stronger.

    Have you begun the gluten-free diet and how are you doing on it? I have found out that you may feel much better if you follow the GF diet but you may have some other issues. One think you need to watch out for is any other auto-immune diseases that may occur.
    I have found a physician who practices alternative medicine, too, and I like his attitude and knowledge.

    Good luck and feel free to contact me in the future if you would like to.

  14. Brandy Says:

    HI. I just found your website and thought maybe I could get some answers. I have not been officially diagnosed with CD, but my mother, brother and sister were all diagnosed in November 2007 with it. My blood test came back negative, but I think my Dr. ordered only a CBC. He was not familiar with diagnosing CD with a blood test. I have had problems with constipation, bloating and tenderness in my stomach for years. I have only stopped eating gluten for a few weeks, and while I notice an improvement as far as the bloating and going to the bathroom, lately my stomach feels upset and my attitude is terrible. I am so irritable and have such bad mood swings. Does this sometimes happen when transitioning to gluten free? I have ADHD and take Adderall and Wellbutrin, but I have to tell you, I have been a bear. Part of it is I am really struggling with the diet. I don’t very much because I don’t have very much to eat. I am not a patient person and have never taken much time to prepare meals for myself and so having to carve out extra time is hard for me. I mean, again, I have ADHD! I am always doing something, going somewhere. I already have a hard time organizing my life, so this has been really difficult. I forget to plan ahead. I end up with nothing to eat but an apple. So I have been eating probably an average of 1100 calories a day. Sometimes under that. So yes, I know that will make me irritable. But even so, everything feels out of whack. I am miserable. I am about to start my lst semester of college, and am a mother of a 14 year old girl and 7 year old boy and I have no idea how to organize this gluten free thing. I live 30 minutes from a store and with gas @ almost $4 a gallon, I don’t go as often as I’d like, so fresh fruit and veggies are not always on hand. I hate the gluten free bread I’ve tried and am really depressed about that, as I am a big bread lover. Not having a sandwich is tough. I rarely remember to take out meat for dinner, how do I remember to plan meals for this! Does anyone have any ideas? Or does anyone else just understand what I am feeling? My family doesn’t, and all I hear is just make eggs and bacon for breakfast (like I have the time!), or cook some rice and veggies for lunch (come on, I’ll be at school!) HELP!- Brandy

    Hi, Brandy. I can sympathize with your frustration. I recommend a couple of things. First, I would find out for sure if you have celiac disease. It is much harder to follow the diet if you aren’t even sure if you need it. Go to a doctor who is familiar with celiac disease and the proper tests. You can also get a DNA test for the 2 genes responsible for CD. If you don’t have the genes, you don’t have celiac disease.

    Second, please talk with a dietician. You can go to this website: http://www.eatright.org/cps/rde/xchg/ada/hs.xsl/home_4874_ENU_HTML.htm and find a dietician in your area. They should be able to help you with ideas for how you can make the diet work for you.

    Third, you can order gluten free food online from a number of places including Amazon. Once you find something you like you can order a case of it for a reasonable price.

    Good luck. Kathy

  15. Meaghan Says:

    I was diagnosed with Celiac over three years ago, and am still suffering. I have constant nausea and my food never stays in me for long. I stick to my gluten free diet ALL THE TIME, it drives me insane! I have been so much more depressed. Food is such a social, enjoyable thing, and not being able to eat anything except salads is killing me. I try to be creative with meals and sometimes it’s okay, but I am always hungry ten minutes later. All of my friends have huge dinners and drink and I hate just having to sit there. My doctors all say I must still be getting trace amounts of gluten from some “secret” source, but I KNOW this is not the case! Everyone says they immediately felt better and happier after going gluten free, but I feel the complete opposite.

    I am sorry you are feeling so badly. Please try another doctor. There may be another reason that you are feeling so rotten. You can also try seeing a registered dietitian who is familiar with celiac disease. You can eat so much more than just salads. Try this blog, Karina’s Kitchen. She has many delicious gluten free recipes. Good luck.

  16. LAM Says:

    Hi I am a clinical mental health counseling student who was diagnosed with gluten intolerance six years ago.

    FOR KATHY AND NEAL, another good book: Dangerous Grains (cannot remember author’s name).

    FOR KATHY AND NEAL, a post where a counselor realized her client might have celiac and encouraged her to get tested: http://glutenfreeworks.com/blog/2010/06/30/celiac-disease-on-the-couch/ .

    ALSO FOR KATHY AND NEAL: I am looking at counseling and celiac disease, and the only journal article I have found on this topic is this one:

    Title:
    Psychological support counseling: a new strategy to increase gluten-free diet compliance in celiac patients.
    Authors:
    Leggio L; Abenavoli L; Gasbarrini G; Addolorato G
    Source:
    The American Journal Of Gastroenterology [Am J Gastroenterol] 2005 Jun; Vol. 100 (6), pp. 1424-5.

    I stumbled onto your blog and the one I cited above after hours of finding nothing in peer-reviewed journals. So I decided to search blogs, and found you and the blog entry above, yay! We are ahead of the journals in discussing this, but I guess we should not be surprised!

    FOR MEAGHAN AND OTHERS WHO ARE EXPERIENCING PROBLEMS: Here are the things that have changed my life, in addition to GF diet:

    –I work with a nutritionist and an endocrinologist. They do detailed blood tests on me once a year — more often if I am not feeling well (but as long as I stay on the GF diet, I am usually fine). I have been working to get my vitamin D level up for years, but it is slowly coming up with dedicated eating, supplements, and getting sunshine.

    –I give myself shots 2x weekly of folic acid/B-12/B-complex. This gets the vitamins directly into the bloodstream. You do not have to rely on your potentially damaged gut to get them to your bloodstream for you! These shots are especially helpful if you accidentally gluten yourself.

    –I take specific vitamins and minerals that address any blood level deficiencies — not just a regular multivitamin. I take them at levels that in many cases are above the Recommended Daily Allowance, again with the guidance of a nutritionist and based on detailed blood testing. NOTE: Not every dietician “gets” our situation. Consider that most of them have been educated about a food pyramid that has a whole section reserved for grain, 99 percent of which we cannot eat (roll eyeballs). However, more and more are educating themselves once they meet people like us, so there’s hope!

    FOR THOSE WHO NEED ADDITIONAL TESTING WHEN PREVIOUS RESULTS HAVE BEEN INCONCLUSIVE: My endocrinologist had me do the testing offered at http://www.enterolab.com. This lab will send you materials to prepare and overnight (I know this is icky) fecal samples and I think also cheek swab samples to look at whether you might be excreting undigested proteins, and to check your genetics. These were the tests my endocrinologist had me do after my blood tests came back showing undigested gluten protein in my blood.

    Also, be aware that many people with gluten issues may also have sensitivities or intolerances to dairy, soy, corn and other substances. If you are off gluten, still have problems, and were not tested for anything but gluten, getting tested for other common allergen issues is one option.

    Finally, if you can find a doctor who is willing to seek advice from others, have that doctor call endocrinologist Harry Delcher (contact info. below). If your doctor refuses to call for advice from another physician and isn’t helping you, find another doctor :). No doctor knows everything!

    One reason Dr. Delcher is awesome is because he has gluten issues, too! He knows the life we live, has practiced for 40 years, and has been/is on the cutting edge in treating these issues for most of his career.
    Harry Delcher
    750 Hammond Dr NE
    Atlanta, GA 30328
    Phone: (404) 943-0328

    Last thing I did: Rearranged my life to reduce stress, because stress chips away at our health. Rearranged my attitude to accept my limitations and celebrate my strengths. Accepted that I personally cannot live the crazy 24/7 fast food sort of life that our society seems to expect today and still stay healthy. Am working to create a life that allows me to cook, rest, exercise, and eat right.

    *****DISCLAIMER: I am not a medical doctor — just an average person sharing what has worked for me in my search for life with food intolerances. I hope this helps a little bit!*******


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