My Dad

[JerryK]

My dad passed away a couple summers ago. He lived to be 84, which I suppose no one can complain about.

I remember when I was a kid, my dad alway had a big pot belly. He had skinny legs and no butt. He was so proud of his belly and that he could drive the car with it. His belly was hard as rock(which means all the fat was on the inside)

By the time dad was in his mid 50s, he quit work. He was "all stove up" all the time. He didn't do much for the subsequent 30 years. Sat around and let my mom work. Dad would've certainly been considered nervous, irritable and anxious. When we were kids, we all knew where his medicinal bottle of Jack Daniels was, he visited it often. Dad would spend a lot of time hiding out in the bedroom, I guess having three teenage boys was too much for him.

Read no further if you don't want to know a bit of gross potty data.....

We had one bathroom in the house. You always knew when dad had been in there, because the bathroom had the rankest stench and he could never flush all his poo off the sides of the bowl. Dad had chronic loose stools, I am sure of that. (I miss him despite this)

So recently I'm talking to my mom. We're talking about the family...where we are all from. Dad's parents were Pennsylvania Dutch.... Incidentally Dad was about my height in his prime, perhaps 5-7.

It's funny, because I always thought it was my mom that was Penn, Dutch...but it was my Dad who I felt displayed the symptoms...Now I know it was my DAD that who was of Dutch lineage hmmm.

I'm making a case here for my Dad being an undiagnosed Celiac. I think he had the symptoms, I think he had the body shape....definately of European decent...

What do you think? Jerry

[Jestgar]

Ya know, it's hard to diagnose someone after they've gone, but the things you describe would certainly fit the picture. But I suppose they could fit other pictures as well. Maybe he was trying to deal with his physical discomfort by using Jack Daniels. I self medicate for fatigue by drinking extra coffee.

[Guhlia]

Sounds like he definitely could have been a Celiac based on your description. Pennsy Dutch, huh? Are you from PA?

[JerryK]

Sounds like he definitely could have been a Celiac based on your description. Pennsy Dutch, huh? Are you from PA?

Nah, I'm a west coaster. But my Grandparents were all from the east coast.

[Looking for answers]

Your dad sounds a lot like my dad. My father has never been diagnosed or tested for Celiac Disease, but he is allergic to wheat for sure. (I'm slowly working on getting my dad tested.)

I love my dad too, despite the fact that the man can single-handily clear a room with his gas . . . and we won't even go there with the bathroom thing!

[Dukie]

My dad passed away a couple summers ago. He lived to be 84, which I suppose no one can complain about.

I remember when I was a kid, my dad alway had a big pot belly. He had skinny legs and no butt. He was so proud of his belly and that he could drive the car with it. His belly was hard as rock(which means all the fat was on the inside)

By the time dad was in his mid 50s, he quit work. He was "all stove up" all the time. He didn't do much for the subsequent 30 years. Sat around and let my mom work. Dad would've certainly been considered nervous, irritable and anxious. When we were kids, we all knew where his medicinal bottle of Jack Daniels was, he visited it often. Dad would spend a lot of time hiding out in the bedroom, I guess having three teenage boys was too much for him.

Read no further if you don't want to know a bit of gross potty data.....

We had one bathroom in the house. You always knew when dad had been in there, because the bathroom had the rankest stench and he could never flush all his poo off the sides of the bowl. Dad had chronic loose stools, I am sure of that. (I miss him despite this)

So recently I'm talking to my mom. We're talking about the family...where we are all from. Dad's parents were Pennsylvania Dutch.... Incidentally Dad was about my height in his prime, perhaps 5-7.

It's funny, because I always thought it was my mom that was Penn, Dutch...but it was my Dad who I felt displayed the symptoms...Now I know it was my DAD that who was of Dutch lineage hmmm.

I'm making a case here for my Dad being an undiagnosed Celiac. I think he had the symptoms, I think he had the body shape....definately of European decent...

What do you think? Jerry

[Dukie]

Hi Jerry,

I am new to message boards...I saw your post about your Dad and I wonder the same thing about my Mom who has also passed. However, if you are really curious, you might be able to find out through genetic testing...at least if one of you parents is still alive? I had my children tested through Enterolab. Their complete panel includes a gene test. One of my daughters had 2 celiac genes (HLA-DQ2 and HLA-DQ8)...this means that both me and my husband have one celiac gene (we are both gluten free now too!). My other daughter had 2 gluten sensitive genes which means that both me and my husband have one gluten sensitive gene. This then allowed me to deduce that both my parents had the genetics to be affected by gluten. My Dad is now gluten free too (at age 80!). Both my daughters improved on the gluten free diet so much that I don't see a huge difference between Celiac Disease and Gluten Sensitivity. The difference is defined in the intestinal damage. A GS individual does not have the damage. But they still have GI symptoms as well as many of the other symptoms in our experience. But...back to your question. If you have been tested genetically and have 2 celiac genes...one had to come from your father. In any case, it sure sounds like he was a candidate. My husband has the same build (but his stomach shrank after going gluten free) and we would have never figured out that he should be gluten free if it wasn't for my daughter. He was not confirmed as a Celiac, but the proof has been in the disappearance of so many symptoms (as well as the reoccurrence upon gluten ingestion).

Siblings can help fill in the blanks too...my sister was also tested (and is now gluten free) and she had 2 gluten sensitive genes which means that one of my parents either had one Celiac gene and one gluten sensitive gene (just like me) or 2 gluten sensitive genes (like my daughter). Hopefully this post was not too confusing.

[JerryK]

you might be able to find out through genetic testing...

I've thought about this and I confess I don't understand the benefits of Genetic testing. If someone could explain it to me, I'd really appreciate it. I understand you can have the gene and still not be a Celiac?? Anyway, for starters, I'd consider having myself tested for the genes, if it'd be of any value....

Thanks, Jerry

[Ursa Major]

Jerry, for your information, Pennsylvania Dutch is a misnomer, as it should be Deutsch. Somehow when those people came over from Germany, English speaking people couldn't pronounce Deutsch, and pronounced it Dutch, and it stuck. Some of them stayed in Holland for a while after fleeing Germany (because of persecution), before sailing to America, which could be another factor.

Your Dad sure sounds like he might be the one you inherited your gluten intolerance from. Especially the combination of no butt, skinny legs and hard potbelly, and diarrhea with awful stench is pretty much a dead giveaway.

[ArtGirl]

I had the genetic test done through Enterolab because I didn't want to go the M.D. route with no insurance. I have two gluten intolerant genes. Well, that means that I got one from both parents. I wonder about my dad, also. (He passed away several years ago). We weren't very close and he was gone a lot of the time, but I still remember he had some kind of intestinal issues with diarrhea and would smell up the bathroom.

My father's ethnic background (as far as we know) was Engligh, Scotch/Irish, and Dutch (the Holland kind of Dutch - I think).

My mother's was 100% Chech - a whole world away from my father's ancestors.

I am a really wierd combination but with the skinny legs and fat midsection.

[CMCM]

Particularly if you have suspicious symptoms, gene testing can be informative. However, I just read that about 30% of people who test positive for the gluten sensitivity and/or celiac gene may NOT have celiac disease (not actively, anyway). Not a lot of certainty with this whole thing, unfortunately. However, if you have symptoms, and you know you have the suspicious genes in addition to the symptoms, and if you eliminate the symptoms via a gluten free diet, you don't really need a doctor to tell you not to eat gluten. And if there is a firm diagnosis of celiac disease in the family, the odds are even greater. Celiac disease runs the gamut from zero symptoms (while intestinal damage is being done) to very violent symptoms. It's all over the map, and not all symptoms are digestive in nature. Do some reading and learn what can possibly happen if you ignore this. There are over 200 possible symptoms that are NOT digestive.

[Gentleheart]

I see so much evidence of undiagnosed celiac and gluten intolerance in my ancestry that I would like to try to research it and put it down in a family tree form. I'm not sure what it will accomplish, but I admit to being very curious about what it will look like and what I will find. Maybe researching it in this way will make it a little easier for me and my family to accept and understand. Are there blank "tree" grids that can be downloaded online? It would save a lot of drawing time. I personally find the genetics of celiac very fascinating.

[DElizabethE]

My dad passed away a couple summers ago. He lived to be 84, which I suppose no one can complain about.

I remember when I was a kid, my dad alway had a big pot belly. He had skinny legs and no butt. He was so proud of his belly and that he could drive the car with it. His belly was hard as rock(which means all the fat was on the inside)

By the time dad was in his mid 50s, he quit work. He was "all stove up" all the time. He didn't do much for the subsequent 30 years. Sat around and let my mom work. Dad would've certainly been considered nervous, irritable and anxious. When we were kids, we all knew where his medicinal bottle of Jack Daniels was, he visited it often. Dad would spend a lot of time hiding out in the bedroom, I guess having three teenage boys was too much for him.

Read no further if you don't want to know a bit of gross potty data.....

We had one bathroom in the house. You always knew when dad had been in there, because the bathroom had the rankest stench and he could never flush all his poo off the sides of the bowl. Dad had chronic loose stools, I am sure of that. (I miss him despite this)

So recently I'm talking to my mom. We're talking about the family...where we are all from. Dad's parents were Pennsylvania Dutch.... Incidentally Dad was about my height in his prime, perhaps 5-7.

It's funny, because I always thought it was my mom that was Penn, Dutch...but it was my Dad who I felt displayed the symptoms...Now I know it was my DAD that who was of Dutch lineage hmmm.

I'm making a case here for my Dad being an undiagnosed Celiac. I think he had the symptoms, I think he had the body shape....definately of European decent...

What do you think? Jerry

Sorry about your Dad, Jerry. Hope you don't mind if I tell you a story about mine. It makes me feel good to talk about him and I feel so lousy today I need that good feeling.

My Dad was the abolute best (but doesn't everyone think that about their parents..well, most do). He passed away May 4, 2006 and we were all devastated. When I was diagnosed 2 months ago my Mom got tested but she was negative. We're all wondering if my Dad had celiac. He had such intestinal problems. I'm almost glad he never knew about me. He had endured so much during his lifetime (over 25 surgeries, a big 6 bypass surgery and kidney failure only a few years ago) and that would have been one more thing for him to deal with. He did home kidney dialysis and was on a strict diet for that. Couldn't imagine him also doing a gluten free one.

To make a long story short, when I'm feeling like this Celiac is too much to handle I think of my Dad. Despite being in pain every single day of his life he never complained. How can I then when all I have to do is change my diet to feel better? I still do sometimes but I'm trying not to. Thank for listening to me go on this morning. I just miss him sooooooo much!

Diane

[happygirl]

CMCM,

I can't comment on the "gluten sensitive genes" because there is very little published research in peer reviewed journals, but in terms of the two identified Celiac genes:

In America, about 30-40% of the population has DQ2/DQ8 (one or both). The latest stats from Dr. Fasano indicate that 1 in 133 American's have Celiac...we can round that to about 1%.

So, when you mentioned that, "However, I just read that about 30% of people who test positive for the gluten sensitivity and/or celiac gene may NOT have celiac disease (not actively, anyway)."

Based on the above mentioned statistics, for Celiac Disease at least, the number is much higher than 30% (people who have the gene but don't have Celiac). (Statistically, 30-40 people out of 100 have the gene, but only one out of 133 has Celiac....)

Where did you read this? Scientific journal or regular article. I'd be interested in reading it and the source. Thanks!

Jerry, thanks for sharing about your dad. It sounds like it most certainly could have been a problem.

[Dukie]

I've thought about this and I confess I don't understand the benefits of Genetic testing. If someone could explain it to me, I'd really appreciate it. I understand you can have the gene and still not be a Celiac?? Anyway, for starters, I'd consider having myself tested for the genes, if it'd be of any value....

Thanks, Jerry

[Dukie]

Jerry,

It's true that according to the medical community, the genetics only predispose a person to Celiac Disease. So how can genetic testing be useful? Genetic testing can rule celiac disease out, but not in. It is also helpful to know if a biopsy is necessary. One of my daughter's has 2 "gluten sensitive" genes (as defined by Enterolab) and therefore a biopsy should not reveal celiac disease and would be pointless. By definition, three things are necessary for celiac disease to manifest...1. The person needs to have the genetics that predispose them. 2. The person needs to be eating gluten. and 3. Some 3rd unknown factor triggers the disease (believed by many to be a virus).

Another benefit to genetic testing is to see how far reaching the possibility of celiac disease or GS is across your family. I am one of 6 children and through a little genetic testing we could see that it is impossible for any one of my siblings not to have at least one of these genes. It also showed me that gluten problems could appear on both my maternal side and paternal side. Therefore, I sent out a letter explaining this to all my relatives at Christmas (2005). Now a cousin and her son are also gluten free (paternal side). Then I got back a letter from a relative on my mother's side (my mother was adopted, and we are not close to the blood relatives) which revealed celiac disease had recently been diagnosed on that side. That makes me believe that my Celiac gene came from my mother (but it doesn't prove it).

So, for what it's worth, these are my thoughts on the usefulness of genetic testing.

In your case, based on your diagnosis and your father's symptoms alone, an educated guess would suggest that he did have it. Genetic testing would only strengthen the argument, but not prove it.

Hope this was helpful!