Question About Family's Reaction To All This

[Guest Kathy Ann]

I've been paying close attention to what you all have been saying on this board for several months now. And I am amazed at how many of you say your family members voluntarily went gluten free as soon as they found out about the problem.

Anybody else have family members who absolutely refuse to even consider a gluten free diet? I've stopped saying anything, but it's hard to keep quiet.

[Rachel--24]

I have double genes. One is celiac and the other is gluten intolerance according to Enterolab. So all of my children at least have one and "technically" are gluten intolerant, even without any testing.

Just having a gene wouldnt make them intolerant.....the gene would have to be "triggered" by something. Nearly the entire population carries some combination of these genes....whether it be a celiac gene and an intolerance gene, 2 celiac genes or 2 intolerance genes....we all have them.....its just a matter of whether or not they are "active".

They actually would need testing to confirm whether or not they are intolerant.

[Guest Kathy Ann]

I realize that it takes something to trigger the gluten intolerance into damaging action, but I was under the impression that they 'technically' are gluten intolerant if they even have the gene. I do understand that they could easily not have any damage yet. Dr. Fine believes that anyone with the genetics to be gluten intolerant or celiac should just avoid gluten as a precaution. That's pretty radical, but probably smart if you can do it.

I thought estimates so far indicated that only about 30% of all of us have the genes.

[Rachel--24]

I realize that it takes something to trigger the gluten intolerance into damaging action, but I was under the impression that they 'technically' are gluten intolerant if they even have the gene. I do understand that they could easily not have any damage yet. Dr. Fine believes that anyone with the genetics to be gluten intolerant or celiac should just avoid gluten as a precaution. That's pretty radical, but probably smart if you can do it.

I thought estimates so far indicated that only about 30% of all of us have the genes.

No....they are not intolerant just by carrying a gene.

How common are the gluten sensitivity and celiac genes?

DQ2 is present in 31% of the general American population. DQ8 (without DQ2) is present in another 12%. Thus, the main celiac genes are present in 43% of Americans. Include DQ1 (without DQ2 or DQ8), which is present in another 38%, yields the fact that at least 81% of America is genetically predisposed to gluten sensitivity.

Ok...so 43% of the American population carry Celiac genes.... 1% of the entire population actually develops Celiac. 81% of the population has some type of gene predisposing them to gluten sensitivity....but no.....this does not mean that 81% of the population is gluten intolerant.....just that they carry the genes.

Dr. Fine does not state that anyone with the genes should be gluten-free.....he states that anyone who's body is producing anti-bodies against gluten should be gluten free. There is a big difference.

[Ellen]

Anybody else have family members who absolutely refuse to even consider a gluten free diet? I've stopped saying anything, but it's hard to keep quiet.

I have a family that pretty much fends for itself...we eat what we can, however there are alot of bizarre allergies. I understand my husband's lack of conformity...he's philosophy is he can't eat chicken, but doesn't expect me to not eat it. He's severely allergic to ALL antibiotics. When they slaughter animals for food they heavily dose them with antibiotics before hand. Poultry and fish don't seem to flush it out of their meat, so when you eat poultry and fish (not shellfish) you're getting a good dose of antibiotics too. He's gotten to the point where he dosen't even want to try "organic" chicken that hasn't been given antibiotics, because when you stop breathing when you even get a taste of this stuff you just grow to not like the flavor of it.

My oldest daughter is 5.5 and has severe gluten intolerance but has not been biopsied for celiac. She's been diagnosed with "autistic symptoms disorder" which we're finding out is a combination of heavy metal poisoning, gluten intolerance, upper GI problems involing yeast infections and ulcers, hypoglycemia,etc, etc, etc. Thankfully we found a doctor that wasn't happy with slapping the autism lable on her, otherwise all of these issues would have been ignored because they cause autistic symptoms. Whew! Needless to say she eats a gluten-free diet happily.

My second child is the "normal" one. She shows no allergies YET! She seems to be content to eat a mostly gluten-free diet, but she LOVES bread. She'll eat gluten-free anything...pretzels, pancakes, cookies, pizza, spaghetti, etc...but if you try to give her gluten-free bread (or hotdog buns) she acts like she's going to vomit before she even picks the food off of her plate! But this is a 4 year old we're talking about.

Basically we have the gluten free side of the fridge...bottom half where the gluten intolerant daughter can reach, and the gluten side. The top shelf of our fridge holds one loaf of regular bread and a pack of regular hot dog buns. Our cabinets are arranged the same way...the bottom ones are gluten-free the tops not. We have a toaster oven for toasting and cooking in that is easy to clean so there is no gluten contamination...and it's been designated the left side is for gluten-free foods, right for non gluten-free foods just in case my husband forgets to wipe it off after using it. Thankfully we don't have to worry about cross contamination too much. He can't stand mayo so that isn't a problem there. And he likes chunkey peanut butter and me and the girls like creamy so no contamination there either...the non gluten-free daughter doesn't eat peanut butter on bread, just gluten-free crackers or out of a spoon. Other than that we live peacefully in the same house. We do always joke about that old thing where you know you love someone when you know how to kill them but just don't!

[Guest cassidy]

Ok...so 43% of the American population carry Celiac genes.... 1% of the entire population actually develops Celiac. 81% of the population has some type of gene predisposing them to gluten sensitivity....but no.....this does not mean that 81% of the population is gluten intolerant.....just that they carry the genes.

Dr. Fine does not state that anyone with the genes should be gluten-free.....he states that anyone who's body is producing anti-bodies against gluten should be gluten free. There is a big difference.

Rachel-24, I hadn't heard that statistic before about 43 & 81% having genes. I guess that makes me feel a little less guilty if I pass it on to my baby. My question is, why does it seem to run in families? I understand that it is genetic so that is why it runs in families, but if 43% of people have the gene, why is it that everyone in one family develops the disease and whole other families never have any problems? Could it be because once one person is diagnosed the symptoms are recognized in other family members? Or, if you have more of the genes is there a better chance of them being triggered?

Just curious, and where did you get those statistics? I like doing research and I haven't seen that before.

[Guest nini]

Ellen, I am severely allergic to antibiotics too and I thought I would never eat chicken or turkey again (don't eat fish other than organic tuna) until one of my friends suggested I try an organic turkey or chicken. Now I eat them all the time. Maybe baby steps with your husband with the chicken, you can tell him I certainly understand the feeling of fear associated with eating something that causes you to not breathe or to get violently ill, but that I'm thankful now that I can eat an organic chicken or turkey (especially with Thanksgiving coming up)...

Kathy Ann, As far as the rest of the family not going gluten-free, I don't know what to say. It's just me and my daughter that are gluten-free because we have to be. My husband will eat our food IF I cook enough for him to have dinner with us, otherwise he makes his own food. And he's not willing to give up gluten. He tried it for a while with us and decided he missed "real food" too much.

[nikki-uk]

Rachel-24, I hadn't heard that statistic before about 43 & 81% having genes. I guess that makes me feel a little less guilty if I pass it on to my baby. My question is, why does it seem to run in families? I understand that it is genetic so that is why it runs in families, but if 43% of people have the gene, why is it that everyone in one family develops the disease and whole other families never have any problems? Could it be because once one person is diagnosed the symptoms are recognized in other family members? Or, if you have more of the genes is there a better chance of them being triggered?

I think this is the case with my son.

My husband was dx with celiac disease over 2 yrs ago - he was very ill.

Only through learning and reading did I realise that my son had some of the symptoms of celiac disease - but in no way was he as ill as hubby.

Biopsies were positive for my son - but I'd have never asked him to get tested if it wasn't for my hubby being dx'd.

[i canary]

My mother lives with me and has many of the celiac disease symptoms, but will not try a truly gluten-free diet. She says she 72 and can get what she wants to. In the meantime her stomach gives her fits. Just don't understand her at all.

She does eat my food with me, but she also has a stash of cookies, crackers and the like to eat. All of her gluten stuff is on the top shelf in the pantry. In the fridge it's on the bottom shelf. We each have our own toaster. Mine is red so it is clear that it is gluten free. I've been slowly getting red kitchen items that will be used only for gluten free stuff so it is clear to both of us.

[happygirl]

there are various reports out on the actual predominance of the genes in the population. But, they are all pretty similar and point to the fact that identified, classic Celiac genes (dq2 and 8) are common.

sorry to re-post this from another thread, but this reference is from 2006 (see the title of book in my signature):

Dr. Green writes about the genetics of Celiac (not gluten intolerance): "HLA DQ2 and DQ8 are nicknames for genes. They are actually molecules on cells that are encoded by specific alleles of genes. HLA-DQ2 (encoded by alleles DQA1*05 and DQB1*02) and DQ8 (encoded by DQB1*0302 and DQA1*03)"

"95% of patients with celiac disease have hladq2 and most of the remaining 5% have HLA-DQ8" About 30% of the general population has dq2 and/or dq8.

"in simple terms, specific genetically driven immune cells (lymphocytes with hla sentries) are primed to react to gliadin"

Cassidy: "researchers are looking for other non-HLA genetic factors because the HLA genes are thought to account for less than 50 percent of the genetic influence. It is also possible that these other genes might account for the variable clinical nature of celiac disease"

he also writes: "you need to have specific genes in order to develop celiac disease. this is known because 70% of identical twins (once one is dx'ed) have the disease and 10 percent of first degree relatives will have celiac disease. if two siblings are diagnosed, that potential doubles for other 1st and 2nd degree members of the family. while some of the specific genes have been identified, it is believed that an umber of other genes, as yet to be defined, are also involved, perhaps pivotally."

***Note: his book does not discuss DQ1 prevalence****

from Dr. Fasano's website:

Since 1/3 of the general population also have these genes, the presence of DQ2 or DQ8 does not imply that the person will develop celiac disease, rather, that they have a genetic compatibility with celiac disease.

Rachel has another great thread on celiac and gluten intolerance, and genetics that you all might find helpful: Open Original Shared Link

Kathy Ann: Had to add to what rachel said, and this applies to celiac and gluten intolerance: just having the gene doesn't mean that you have it.

basically, from what I can put together...is they are still learning. but, this is what is known now. they understand that these "two" genes aren't the end all to be all.

here is another great celiac article: Open Original Shared Link

[Helena]

I agree that your family doesn't necessarily need to avoid gluten just because they have some of the "celiac" genes. But that's not to say that they shouldn't be tested for celiac because a lot of people with celiac are asymptomatic. I do think it is a good precaution for everyone *not* to eat a diet consisting entirely of gluteny grains----it is a good idea to eat gluten in moderation (then even if your family has the celiac genes, they'd be less likely to develop celiac.)

I'm wanting my parents and my one sister who is still eating a gluteny diet to go for the blood tests just in case . . . but they aren't interested. [sigh] I asked my GI doc whether other people in my family should be tested, and he said it would be a good idea, especially if they have symptoms. Am hoping that this will make them realize that I'm not simply "overreacting." I still don't see them going for it. So I can sympathise with the problem of family not being receptive to the whole celiac idea (at least they all do believe that I have it and are being careful with cross contamination.)

[Jestgar]

He writes that 95% of Celiacs have dq2 and the remaining 5% have DQ8. About 30% of the general population has dq2 and/or dq8.

I'd like to point out that these numbers aren't entirely true. There is some smal percentage of people, 1 or 2%, that have no known Celiac genes and yet still develop the disease. The research on the genetics of Celiac (actually all aspects of Celiac) is still early. It's a good idea not to read too much into it.

[happygirl]

thank you for clarifying, jestgar. that is the one point that i didn't copy directly out of the book and look what it got me

"95% of patients with celiac disease have hladq2 and most of the remaining 5% have HLA-DQ8" (hence, not all, like Jestgar noted)

and, the thing is, i knew this...i have written before about how these two genes don't completely fill out the 100% can we blame it on the brain fog? I am going back to edit/update it for future references.

[Rachel--24]

I'd like to point out that these numbers aren't entirely true. There is some smal percentage of people, 1 or 2%, that have no known Celiac genes and yet still develop the disease. The research on the genetics of Celiac (actually all aspects of Celiac) is still early. It's a good idea not to read too much into it.

This is absolutely true. Maybe Dr. Greene does not acknowledge this in his book....but yes, there are biopsy proven Celiacs who carry neither of the Celiac genes. They represent 1-2% of diagnosed Celiacs. I had told my GI that I did not carry either of the Celiac genes and he said that he does not consider gene testing when ruling out Celiac....because of the fact they havent yet determined all of the genes involved.

[Rachel--24]

Rachel-24, I hadn't heard that statistic before about 43 & 81% having genes. I guess that makes me feel a little less guilty if I pass it on to my baby. My question is, why does it seem to run in families? I understand that it is genetic so that is why it runs in families, but if 43% of people have the gene, why is it that everyone in one family develops the disease and whole other families never have any problems? Could it be because once one person is diagnosed the symptoms are recognized in other family members? Or, if you have more of the genes is there a better chance of them being triggered?

Just curious, and where did you get those statistics? I like doing research and I haven't seen that before.

The statistics were posted (by JerseyAngel) on another thread. I believe they came from Enterolab's website....I recall reading them on that site some time ago.

I believe some whole families have Celiac while other whole families dont because ....like Nikki said....when one person is diagnosed....more family members are tested. Also....I believe there may be other genetic factors involved....more genes. Some families may be more prone to developing Celiac because of other factors that we just dont know about.

[Guest Kathy Ann]

I heard everything you said, Rachel. I guess I got my urgency attitude from my enterolab results report and recommendations. I love my family and wouldn't want any of them to have to walk the path I'm walking right now. I sure wish someone had insisted on testing me when I was young. Considering how things have turned out, that would have been a wonderful gift and could have changed my life.

[Rachel--24]

I heard everything you said, Rachel. I guess I got my urgency attitude from my enterolab results report and recommendations. I love my family and wouldn't want any of them to have to walk the path I'm walking right now. I sure wish someone had insisted on testing me when I was young. Considering how things have turned out, that would have been a wonderful gift and could have changed my life.

Your attitude is completely understandable and of course we want to protect our loved ones from any future harm. If you were able to get your entire family "on board" that would be great...even better if they noticed that they felt better as a result.

I was just making a correction that just *having* the genes doesnt mean that someone will ever develop an illness caused by gluten. There are certain genes linked to many different illnesses or diseases but just having one certain gene doesnt determine what diseases you will develop down the road.

What I'm saying is that while it would be nice if your family chose to take your advice and embrace the gluten-free diet....it doesnt sound like they are willing....it doesnt mean that they will end up walking the same path that you're on though. They may never get sick from eating gluten....or like you mentioned....they may get some symptoms that are serious enough to cause them to rethink things. At least they will have some knowledge about what could be causing their symptoms because you've already discovered gluten to be a problem for yourself.

[Guest Kathy Ann]

Thanks, Rachel. I hear ya.

[Nancym]

I've been paying close attention to what you all have been saying on this board for several months now. And I am amazed at how many of you say your family members voluntarily went gluten free as soon as they found out about the problem.

I'd say that's not the norm. Most people probably don't want to hear they're eating something that could be making them sick.