Celiac & My Family

[Woolygimp]

I initially suspected I had Celiac after moderate weight gain, depression, anxiety, hypothyroid symptoms, and IBS popped up almost instantaneously in the past 3 years.

My mother has IBS symptoms, fibromyalgia, and hypothyroidism.

I've got four sisters, one of which with multiple autoimmune diseases. The other has a horrible case of Psoriasis. Another sister has a daughter who's about 6 or 7 years old, and her weight went from 75 to about 125 suddenly. She's extremely large for her age, and her mother thinks she's suffering from anxiety and depression. She also has a skin rash that she thinks is eczema, and she's worried about her health. She also told me she's suffering from stomach cramps and IBS symptoms.

So basically, it started with me and I printed out an article and then they started pointing out symptoms that they recognized and had attributed to other causes.

Anyway, I've had 2 blood tests (both negative) but I was gluten-free previous to one, and only on a gluten diet for 2 weeks prior to the second. If there's a Celiac strain in the family, we'd like to find out obviously or be able to rule it out either way.

I was talking to my mom about bringing a few of us up to Mayo, but I'm not sure. We could all have the Celiac blood panel run, but as someone previously mentioned it's not entirely accurate. I definitely feel that I have it, my IBS symptoms all but disappeared within 2-3 months on a gluten-free diet.

Right now they all want to try the gluten-free diet, but I don't want them making the same mistake. I'd like a solid diagnosis, so should we all get the full IGA blood panel run? Or should we go up to a specialist in Mayo?

[mn farm gal]

Some people want a diagnosis before they go on the diet, some don't care and just try the diet. I personally was gluten light for about a year just trying to diet I cut out breads, pastas, cracker and pretty much anything that was made with a form of flour. When I decieded to go in for my blood test it came back negitive. I have heard that some people can not get insurance after they have an official diagnosis and if that is the case I am glad my test came back negitive. I don't want something that is treated by a food diet to stop me from getting insurance if I ever need to go out on my own to get insurance, it would be a pre-existing condition and nothing relating back to celiac would be covered in the future. Since we as Celiac are prone to more auto immune disorders/diseases that could me alot not covered. So the test and biobsey is total a personal preference. Good luck.

[Guest j_mommy]

Your body starts repairing itself after going on a gluten free diet...so it's not suprising that you had negative blood tests. I was Diagnosed in April and told to continue to eat gluten so my biopsy results are "true" adn then I can go gluten free.

As far as family goes my father and his mother have the same symptoms I have. I have had the IBs sympotoms since I was born! So it's still possible that you and your family have this. But you need to eat gluten for your tests to be accurite!(Spelling)! I hope this helps you!

[Woolygimp]

Your body starts repairing itself after going on a gluten free diet...so it's not suprising that you had negative blood tests. I was Diagnosed in April and told to continue to eat gluten so my biopsy results are "true" adn then I can go gluten free.

As far as family goes my father and his mother have the same symptoms I have. I have had the IBs sympotoms since I was born! So it's still possible that you and your family have this. But you need to eat gluten for your tests to be accurite!(Spelling)! I hope this helps you!

How should we do this? Should we get the eldest, like my mother to go in for the blood test?

[Guest j_mommy]

I don't really think it matters who goes first. If they have symptoms they should get tested. It's genetic as you know. Your mother's mother may have had the gene but she may not! There is a genetic test you can have done to find out if you have the gene...but I don't knwo much about it. I have a 2 yr old and he has blood tested negative and I am looking into the genetic test for him b/c I don't want him to be poked every 2 yrs unless necassary!

But remeber you have to have been eating gluten for those tests to be "true"...from what I understand about 2 weeks prior. None of my dad's brothers have any of these symptoms. I have been bugging my father to be tested. My step mom is taking my half sibs in to be tested this week. I obviosly got it from somewhere!LOL

But again as far as your mom going first....If she doesn't have symptoms than that's won't matter, if she does it's a good place to start!

[Guest j_mommy]

I just reread your intial post....your mom's symptoms! I think she's a good place to start. Dr's tend to label people with IBS and leave it there without doing further testing. I got lucky and when I finally went to teh GI specialist and told her my symptoms, she checked for everything and didn't just label me with IBS! Which is good b/c I didn't even know what celiac was prior to her telling me I had the disease!

[Nancym]

You also should come to grips with the fact that most of us had negative tests but we had celiac like symptoms and celiac like response to a gluten-free diet.

Lets say we have a device called the "Cheese-o-meter". And I give it a hunk of brie and it says "Not Cheese" at this point shouldn't we perhaps fall back on simple reasoning? If it looks like cheese, smells like cheese, tastes like cheese... perhaps it is cheese? Maybe the cheese-o-meter is defective? Or do we set aside everything we know about cheese and decide the cheese-o-meter is actually right?

[CMCM]

There's 4 children in my family. My mom was diagnosed celiac 40 years ago, so we knew about her. However, her doctors always played down the chances of her children having it. I was the first tested....my gene test showed a celiac gene, no surprise there. My 3 siblings were reluctant to even get the gene test, saying they had no symptoms. I convinced my mom to get tested, and we found that she has TWO celiac genes, which was useful information because it told us that each and every one of her 4 children absolutely WILL have one celiac gene. They all deny having any active symptoms, but at the very least they all now know they have the gene as a possibiliity down the road.

I tested with one celiac and one gluten sensitivity gene (no big news there, either, since it appears that if you aren't Asian, you will probably at the very least have a gluten sensitivity gene!!). My dad died in 1989, and we now know he had this one gene, but the question still remains of whether he might have had a celiac gene as well. In retrospect, he certainly had a lot of suspicious symptoms that could be explained by celiac. So if my siblings would at least get gene tested, we would most likely find out our dad's other gene.

Although I have come to believe that MOST of us in the U.S. are gluten sensitive to one degree or another, having celiac disease and particularly having TWO celiac genes is a more complicated matter. For me, the $$ spent on the gene test alone with worth it just so I know.