Gluten Free Family?

[beancounter]

Hello all

About 6 weeks ago, my Dad passed out and went to the hospital by ambulance. Within an hour or so they said he was very, very anemic. He stayed 8 days, got 2 units of blood, several blood tests (put the blood in fast, take it out slow!), as well as an endoscopy and colonoscopy. Nothing explained his anemia. No one mentioned Celiac. Finally, he went for a pill cam test (which is primary doctor pushed for, and the GI doctor in the hospital thought wasn't necessary), which I guess showed the damage to his villi, and he then had the blood test and was diagnosed with Celiac Disease. Since my Aunt, his sister, has digestive issues as well as osteoporosis and rheumatoid arthritis, I called her and told her to go get tested. Monday she called and said she wasn't positive. Today I went for my own blood test, and this afternoon my Mom called and said my Aunt had been to see a different doctor than the one that called with the test results, and she's positive. I have an appointment with my doctor on Tuesday, and should get my results then.

Three years ago I was diagnosed with lymphocytic colitis (microscopic colitis -- causing a number of digestive issues I won't describe, and on one website I found links to the MC and Celiac), and a year ago I was told I am also anemic. I'm tired all the time, even when I first wake up in the morning. I have some joint pain, not a lot, but enough that it is out of the norm for a 36 year old. My doctor's office was kind of rude about ordering the tests for me (I had to call them three times to get the orders, and then I was told it wasn't normal to order them just because a parent was diagnosed, because they were expensive), and I thought they probably think I'm crazy for pushing them. I am overweight, and thought that might be why they didn't seem to want to order the test, but now I have read that 30% of Celiacs are obese when diagnosed.

I guess I'm rambling, but can anyone relate to this? It's been about 2 weeks since my Dad found out the results of his pill cam test indicating celiac disease, and I've read everything I could find about Celiac and gluten intolerance, but I haven't talked to or heard from any real people.

Thank you for your attention!

Glenda

Norcross, GA

[Ursa Major]

Hi Glenda, and welcome to these boards. Yes, it is very normal and recommended by celiac disease specialists to get the whole immediate family tested if somebody in the family tests positive for celiac disease, because it is genetic. So, your doctor is very wrong on this.

You have lots of symptoms that point to celiac disease. And since it runs in the family, it is likely that you have it. But even if the tests come back negative, you ought to try going gluten-free to see if it makes you feel better. Because there are many people who have gluten intolerance without destroyed villi.

I hope you figure it all out.

[beancounter]

Thanks for your response, Ursa!

[MNBeth]

Good for you for push, push, pushing when you needed to! That can be so hard to do. I wasn't too good at that, and ultimately ordered tests for my son and I myself through Enterolab. Then, of course, I had to convince my other doctors that the test was valid, but being on the diet has been undeniable proof. I'm not feeling wonderful yet, but, boy, do I get sick if I get gluten.

So far the tally in my family is as follows: Paternal grandmother we're pretty sure; my father, his niece and nephew, myself, my oldest son, my sister, her oldest daughter. Sadly, no one else in my large extended family has been tested so far, including my other three kids. (Well, one of those is adopted, so the odds are more in her favor!)

Mostly it's been the unreliability of the blood tests and the expense of the Enterolab test that have prevented our testing the other kids who don't have significant symptoms.

There's so much to consider, isn't there? I will say, the camaraderie of learning about it together with my sister has been very helpful. Hope your family will be able to support one another that way, too!

[Welda Johnson]

Hi,

I think Enterolab is such a good way to go, because they send the stool sample kit directly to your home, then send UPS (or was it Fed-Ex?) to your door to pick it up. I bought a test for my grandson to start with (newly born and suffering after his formula) and he had gluten intolerance and intolerance of all milk and dairy. I already knew that I had Celiac (symptoms since age 8 and I'm now 63). Dakota's test was around $400 but later I ordered tests for my three grown children, my sister and my brother, at about $100 for testing gluten intolerance only, not milk or dairy products. My sister has it, my brother doesn't, and none of my kids took their tests.

I stick to the diet totally and feel great. I kept Dakota on the diet the first year, then his folks chose to give him everything, and the Kaiser doctor said he didn't have Celiac, but when I had him I kept him on the diet until recently. He is now ready to go to Kindergarten and shows signs of ADHD as his father, my son, did. The question is now cropping up about Ritalin, and his mom says yes while his father, who we tried it on years ago, says no. Dakota's dad became a zombie on Ritalin and hated it, as did we.

I am a retired teacher and NEVER recommended drugs for kids during my years of teaching, mainly because I saw what it did to my son's personality, which was sparkling and active when natural, but dark and moody on drugs. So, I highly recommend doing whatever it takes to find out what is going on, even if it is just trying the gluten-free diet yourself and suggensting that others in your family join you. I always felt better during the years when I did elimination diets, and that's how I learned to cut out all grains, all milk and dairy, egg whites and yeast, and recently I stopped meat, because I have asthma symptons apparently when eating grain-fed animal products. Best wishes to you. If you'd like to email me at welda@att.net feel free. Welda

[Welda Johnson]

Hi,

I think Enterolab is such a good way to go, because they send the stool sample kit directly to your home, then send UPS (or was it Fed-Ex?) to your door to pick it up. I bought a test for my grandson to start with (newly born and suffering after his formula) and he had gluten intolerance and intolerance of all milk and dairy. I already knew that I had Celiac (symptoms since age 8 and I'm now 63). Dakota's test was around $400 but later I ordered tests for my three grown children, my sister and my brother, at about $100 for testing gluten intolerance only, not milk or dairy products. My sister has it, my brother doesn't, and none of my kids took their tests.

I stick to the diet totally and feel great. I kept Dakota on the diet the first year, then his folks chose to give him everything, and the Kaiser doctor said he didn't have Celiac, but when I had him I kept him on the diet until recently. He is now ready to go to Kindergarten and shows signs of ADHD as his father, my son, did. The question is now cropping up about Ritalin, and his mom says yes while his father, who we tried it on years ago, says no. Dakota's dad became a zombie on Ritalin and hated it, as did we.

I am a retired teacher and NEVER recommended drugs for kids during my years of teaching, mainly because I saw what it did to my son's personality, which was sparkling and active when natural, but dark and moody on drugs. So, I highly recommend doing whatever it takes to find out what is going on, even if it is just trying the gluten-free diet yourself and suggensting that others in your family join you. I always felt better during the years when I did elimination diets, and that's how I learned to cut out all grains, all milk and dairy, egg whites and yeast, and recently I stopped meat, because I have asthma symptons apparently when eating grain-fed animal products. Best wishes to you. If you'd like to email me at welda@att.net feel free. Welda

[AliB]

Good for you for push, push, pushing when you needed to! That can be so hard to do. I wasn't too good at that, and ultimately ordered tests for my son and I myself through Enterolab. Then, of course, I had to convince my other doctors that the test was valid, but being on the diet has been undeniable proof. I'm not feeling wonderful yet, but, boy, do I get sick if I get gluten.

So far the tally in my family is as follows: Paternal grandmother we're pretty sure; my father, his niece and nephew, myself, my oldest son, my sister, her oldest daughter. Sadly, no one else in my large extended family has been tested so far, including my other three kids. (Well, one of those is adopted, so the odds are more in her favor!)

Mostly it's been the unreliability of the blood tests and the expense of the Enterolab test that have prevented our testing the other kids who don't have significant symptoms.

There's so much to consider, isn't there? I will say, the camaraderie of learning about it together with my sister has been very helpful. Hope your family will be able to support one another that way, too!

The powers that be keep saying that the incidence of family members having Celiac is around 10%. Who are they kidding? Your family is absolute testimony that it is not true. Have you totted up all your family members from your grandparents down? What percentage is it really, and how many other family members probably have it but have never been tested?

Whole families are out there who have proved positive, even husbands and wives who aren't blood relatives! I read earlier today in a piece written by the University of Chicago that 35% of Americans test positive for the DQ2 or DQ8 gene. That's 1 in 3! It added that not all will go on to develop Celiac. How do they know? The testing is only in its infancy and is far from definitive. We already know that a huge amount of Celiacs get missed. What if everyone with the genes is actually Celiac, with either obvious symptoms or is asymptomatic? It also pointed out that with that amount of positive genes the likelihood of two people with the genes having a family is very high!

Another medical article pointed out that in the blood tests a lower figure means a negative result, because some 'healthy' control subjects also show the antibodies so the level has to be set higher to assume a positive result. But, it argues, what if those 'healthy' control subjects are showing the antibodies because they are actually Celiac although not (yet) symptomatic? Doesn't that then suggest that any reading greater than zero could actually constitute a positive result?!

There are NO perfect people out there that can be used as a benchmark. We are all sick whether we know it or not so how can they decide that the control group are all healthy? If they take it that any sign of positive antibodies indicates Celiac then it opens up a whole new ball-game and the 1 in 3 then becomes a far more realistic figure!

[geokozmo]

Hi

I also have bad expereinces with doctors. I simply started a glutenfree diet and my health began to show good signs, my belly diminished, my fatigue diminished...and so on. I do not need a doctor to tell me I am gluten sensitive. My doctor simply does not believe in such new fads. But I feel well. It is not so difficult to eat rice waffle instead of bread (and pay attention to a few other items.) I think you shd start a diet and see the good effects of it and refuse the extra doctoral harrassment and tests.

Geo