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Undiagnosed Celiac Disease in Your Parents

My father died at 43-years of age in 1975. I was always told it was because of alcohol abuse, smoking and just generally poor personal habits. I was eight years old and not that close to him as my parents had split several years before. I don’t have many memories of him, but I do remember his constant struggle with his health.

Years later when doing some family research, I came across some letters from my father to his sister shortly before his death where he was talking about food poisoning and how yet another restaurant had made him sick. At this point, I had been diagnosed with celiac disease and successfully following a gluten-free diet. Needless to say, when I read these letters, the lightbulb in my head went on and it occurred to me that he was probably dealing with undiagnosed celiac disease. Besides the complaints of food poisoning, he was also under weight and very frail looking. While I cannot prove that celiac disease played a role in his death, I certainly can speculate. To think that with a relatively simple change in his diet, he might not have had to deal with so many of the problems that he faced, I might not have lost my father at such a young age, and just maybe I would have had the type of father I always dreamed of. Wishful thinking? Maybe. Like I said, I can speculate.

If you’ve been diagnosed with celiac disease, you know that 1 in 100 people have celiac disease and that 80% of those are undiagnosed. Also, 1 in 20 with a direct relative with celiac disease have an increased risk of developing the disease. I went for many years without knowing what was wrong with me and progressively getting sicker and sicker until I was knocking at death’s door myself. Grossly underweight and malnourished, dealing with severe anemia, migraine headaches and many other symptoms, I don’t think I would have lasted much longer.  The good news is that I was correctly diagnosed in 1999, I’ve successfully maintained a gluten-free lifestyle, and I am now in relatively good health.

I’d love to hear stories from some other people who believe that their parents had dealt with what they think could have been an undiagnosed celiac disease. I really think it’s more common than any of us ever expected.

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About Chris Armstrong

I created the Celiac Handbook website in 2004. It has evolved into a portal for new (and old) ideas related to healthy and sustainable gluten-free living and avoiding the usual pitfalls of the gluten-free junk food market.

  • Michelle B

    I was the first person in my family diagnosed as a coeliac (actually, I self-diagnosed, the doctor never even offered it as an option until I went to him with the results of my exclusion diet). Since then, my cousin has been diagnosed as coeliac, which is why had such bad colic as a baby. But my family is full of people who died young. Most of them did not live past 45. And looking at them now, I wonder how many of them were weakened by coeliacs, how many medicines failed because they could not be absorbed, how many of them failed to get the nuritents they described. I hope that I, following a gluten-free diet, will be healthy enough to live longer.

  • Donna Boothby

    I too spent most of adult life with digestive issues, migraines, severe hay fever, foggy head, malaise….and on and on….until I found that I was celiac, not from any doctor because they were all convinced that I was just an attention seeking middle aged woman. As I look back at my mother and her sisters’ issues, I think there is definitely a link. My mother had small bowel carcinoma, survived it; however, two of her sisters were not so lucky. They succumbed to it. I think they were all undiagnosed celiacs. I also have a nephew with schizophrenia and I have read that this can in some instances be caused by gluten. My brother, however, refuses to believe me and so his son lives with the disease, which is quite debilitating.

  • http://celiacman.wordpress.com Chris Heck

    Chris – thanks for sharing this. I’m sorry that you were not able to enjoy more years with your father and given the fact that you have shared here, I can certainly understand your speculation of him having undiagnosed Celiac Disease. Although I don’t have any suspicions of my parents suffering from undiagnosed Celiac Disease, reading through your post makes me feel grateful that I was diagnosed at the age of 39. Just this morning I was talking with my wife about some research I found from the Mayo Clinic about adults that are diagnosed later in life and how only about 57% of them experienced “mucosal recovery” or healing of the lining of their small intestines. Of course, she saw the glass half-full perspective that this many have the opportunity to experience healing and that is one of the things I love about her but I’ve been lamenting the fact that it took me so long to be correctly diagnosed (15+ years best case) and concerned about the long lasting impacts on my health. However, after reading this post I feel very fortunate that my diagnosis has given me a chance to adopt a gluten-free lifestyle, to finally feel well for the first time in my life, and to give my 3 kids a chance to have many more years with their dad.

    And for what it’s worth, I agree with you that it’s probably more common than any of us would care to believe.

    Thanks again for being willing to share.

  • jen

    For me it’s not my parents but my maternal Grandmother, I do suspect my Mom but she’s in complete denial and until she is ready to accept I can only watch.
    With my Grandma, her last years were very painful and I believe to undiagnosed CD, she had been diagnosed with colitis in the 50’s. It explains her fertility – she had a hard time getting pregnant and staying pregnant. She would spend her whole pregnancy on bed rest and all 3 babies were 3-4 months early(and think about what that meant 60 years ago), the middle baby died days after birth.
    The beginning of her end was the aorta that feeds to the intestines was blocked and 1/2 of her intestines had to be removed. Not knowing any better when after wards found she couldn’t handle more than 1-2 grams of fat per meal started making low-fat, no fat muffins and breads(can’t think of the name of brand that is known for this). Shortly after she broke her hip and was found to be extremely osteoporosis -tic. Once she got home, broke vertebrae putting her socks on. It just kept going down from there until her death.
    We always joked how she was the stereotypical dumb blond, now I wonder how much of it was brain fog from gluten. I can only wonder about how much of her health issues were due to undiagnosed or misdiagnosed CD affected her life.

  • http://www.glugleglutenfree.com Tia

    What a fabulous post. I have just been talking about this with a few people. That same realization came to me about a month ago. While I don’t see anything in particular in my parents, I have come to the conclusion that many on my mother’s side of the family must have had it. Unfortunately, it’s had for most of them. So many instances of cancer, depression to the point of suicide (or attempt), and other associated conditions such as food allergies and lupus. Several of them I didn’t get to know at all including my grandmother.

    And I also think that it’s great that you are doing the blog. One of the things I wish I had had at the beginning, besides knowing I was getting accurate information, was stories from people who had been through or were currently going through what I was going through. When you first find out you can’t eat gluten, you feel very alone. I have been following you on twitter for a while, but I noticed Elana’s tweet about you blog, so I decided to check it out. (I also just made her chocolate chip cookies with almond flour and agave nectar. Very good, if you haven’t tried them for a chocolate fix.) I have also liked you on facebook and added you to my page favorites. Thanks for your hard work.

    BTW, I love Hugo’s. I used to live in L.A. When I go back to visit friends, they want to go because it’s healthier. I always agree with the suggestion because it is so easy for me to eat. I love places like that.

    Keep up the good work. I will be visiting often.

    Tia

  • Diamond Girl

    I self diagnosed a few years ago, but now realize I had many many signs for about 20 years. I thought my stomach problems were stress or nerves or an ulcer (which is what the doctors told m father he had). I now realized what it was, and have educated myself. I was never grossly underweight, or even underweight, and neither was my father. He was a chef, and was around food all the time. He also experienced constant digestive problems, and drank a lot of alcohol. He died at age 58, allegedly from untreated diabetes, sick, broken and not even a shadow of what he could have been. I am certain he did have diabetes, but I also believe he had a gluten allergy.

  • http://gracefullyglutenfree.blogspot.com/ Grace

    Wow, my Mother’s Celiac Disease was undiagnosed for years. Read my story here http://gracefullyglutenfree.blogspot.com/2009/05/my-story.html

  • Kitty

    Wow! Incredible…Every Celiac story is so different…However, very informative and I always appreciate every word. I am a 39 year old hispanic female with Celiac…It’s amazing what you find when you begin to research your family history! Ahh…So sad, I suffered for so many years….But, what is different…I lived most of my life in a size 16-18…And, I am now a size 6. Celiac distroyed my 20’s and 30’s! I learned that Celiac Disease affects Hispanics as well (referred to Celiaca). I learned that my grandmother was the same size as me, but died a size 6. Sad…It makes me so sad that she died without a diagnosis. Wow….I wonder all the time if my mother has it along with her diabetes (she has avoided testing). Not only do I have Celiac Disease….But, I have positive testing for LUPUS…EEK! My Rheumatologist and I have agreed to not refer to this secondary diagnosis until I full on symptomatic…..Be Strong…Celiac Disease isn’t for the week.

  • Judy

    My Mother passed away at age 67 of complications due to oseteoporsis – almost 20 years ago, before we knew what we know today….I was diagnosed in 1996, after almost dying from celiac-sprue – I still have symptoms even though I follow the gluten free diet exclusively – My maternal grandmother passed away at age 47 of Addison’s disease – or “wasting away” disease – wish we knew more of the family history to trace celiac through the family.

    Judy Brogden – Union, ME

  • Connie Bloss

    What I know of my paternal grandfather was that he died in his 70’s of stomach cancer in 1959. He was very thin and smoked. I read somewhere awhile back that smoking alleviated the effects of CD. My maternal grandmother passed away in her 80’s but her quality of life her last 10 years was appalling. She was a small woman of Scotch-Irish descent. For years she had bowel problems and I could see evidence of it in her later years as her stools were black and tar like. My attempts to get through to her caretakers were dismissed. She had always been so full of life and vibrant and to see her with dementia and her frail body deteriorating could have been unnecessary. I have been GF for over 5 years now. Prior to my diagnosis, I was treated for lactose intolerance, candida, fibromyalgia, mental illness, anxiety, and illness unknown. My doctor is finally coming around and I believe that he uses my experience to help other patients.As he sees how a GF lifestyle has improved my health. He even told me that he is proud of me. Wow! My daughter after years of being ill with “IBS” and being in denial, recently went GF. Her blood test was negative probably because she had been GF for 2 weeks prior to testing. People have been conditioned to believe that “bread” is the staple of life and it is mentioned so many times in the Bible. Biblical bread is a person not a food and the bread produced today is far from the nutrient rich bread of that day. How can wheat bread be good for anyone when it is GM and many times with HFCS added along with vitamins? It isn’t and it is a cheap way to feed the masses and compromise their health.

  • Elle

    Sadly in my family I believe my paternal grandfather died due to undiagnosed CD. On his death certificate, the cause of death is listed as “Failure to Thrive”. Sadly, the sicker he got, the more they tried to give him nourishment in the form of whole grain breads, etc… My father and uncle also have mild symptoms, but refuse to make the leap. I don’t really blame them, it is a hard adjustment to make. What is interesting is that my family has always had “stomach problems”, but in the case of my grandfather and myself, the CD was kicked into high gear after surgeries.

  • Jean Marie

    I too was sick for over 20 years and got progressively worse till I was at deaths door going into anpohylactic shock on a regular basis. Have been gluten free and have my life back for one year and one month now. I too wonder if celiac isn’t what caused my grandfathers death at the age of 38. He had complained for a couple of years prior about stomach problems and was very thin and frail and trying different diets of the time ( he died in 1938). In January 1938 while serving on jury duty he contracted “pnemonia”. He died on the third day of having “pnemonia”.

  • Tracy

    Thank you for this post and to everyone who wrote their very moving stories. I finally found relief from vexing GI symptoms with the help of a nutritionist–I don’t have celiac but I do have gluten sensitivity. My mother and father are in their 80s. Both have multiple chronic symptoms. My mother has coped with unremitting GI issues her whole life and had major stomach surgery in her 20s in an effort to relieve those symptoms–the surgery left her with other problems and did not cure her symptoms. Plus she has severe anemia and B12 deficiency and complains of brain fog & extreme fatigue. My father has psoriasis and has been told he is pre-diabetic. Even though I have pointed out that the genes I have that make me gluten intolerant came from them, they resolutely do not want to pursue something that would mean they have to stop eating wheat. It is so sad and difficult to witness their continuing health problems knowing what I know about gluten. My mother’s mother died of pneumonia at age 45 when my mother was just 9 years old, a sorrow that has plagued her her whole life. Reading Jean Marie’s reflection on her grandfather’s death from pneumonia, it just occurred to me that gluten could have been related to my grandmother’s untimely death.

  • Jennifer L.

    I am very interested in this topic. I have often wondered about my mother being gluten intolerant or perhaps even having celiac disease. When I was young, I have random memories of her complaining of stomach ailments of one sort or another. Funny stories creep up every now and again involving stinky flatulence. She was always very thin and had a lot of unhealthy habits. She smoked, and when she was younger, she had problems with alcohol. I attributed most of these things to her early death at age 45 from pancreatic cancer. One aspect of her condition that made me start to think about gluten in her diet was that she developed schizophrenic symptoms at a late age (she suffered from this probably from the age of 39-43). She had no prior incidence of schizophrenic behavior, and it is uncommon for it to show up so late. I do not have an official diagnosis of gluten intolerance like others have since I eliminated it after pregnancy on my own before getting tested. I had recurrent aphthous ulcers since I was a child and they were much worse after pregnancy. A gluten free diet eliminated them nearly completely. That was enough for me! My daughter, who is 3 now, was diagnosed as gluten intolerant after only having gluten twice in her life. She throws up approximately 3-4 hours after having gluten and has white pasty poo the next day. I cannot be sure that my mom was gluten intolerant, but it seems likely that it would have been worth considering in her treatment. I am happy that gluten-free is “all the rage” right now since I never would have suspected it myself. I used to wander stores and wonder aloud, “Why in the world do people need gluten free labels on peanuts (or insert other non-grain food here)??” Now I know…