Comments on: Undiagnosed Celiac Disease in Your Parents

By: Jennifer L.

Jennifer L. — Tue, 09 Nov 2010 22:05:08 +0000

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…

By: Tracy

Tracy — Tue, 09 Nov 2010 01:35:52 +0000

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.

By: Jean Marie

Jean Marie — Sun, 20 Jun 2010 22:30:59 +0000

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”.

By: Elle

Elle — Sun, 20 Jun 2010 15:02:59 +0000

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.

By: Connie Bloss

Connie Bloss — Sun, 20 Jun 2010 11:22:17 +0000

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.

By: Judy

Judy — Sun, 20 Jun 2010 02:58:52 +0000

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

By: Kitty

Kitty — Sun, 20 Jun 2010 01:13:53 +0000

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.

By: Grace

Grace — Sat, 19 Jun 2010 23:58:13 +0000

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

By: Diamond Girl

Diamond Girl — Sat, 19 Jun 2010 22:31:54 +0000

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.