Family History, Testing And Broaching The Subject

[Lisa16]

I am a diagnosed celiac (since December). I took Happy Girl's advice and asked my first degree relatives to get tested. So far, only my mother has, and she was negative for antibodies. I suspect the problem comes on my father's side.

His mother died of lymphoma in her 60s and all 5 of her siblings died of some type of cancer related to the digestive track. She had "sick headaches" and other digestive "troubles" for years. My dad's sister has fibromyalgia and arthritis, as do her children and even her small grandchildren (how can you be 5 years old and have RA?) My father and brother both have digestive problems, including GERD, odd liver function tests and diarrhea. There is heart involvement too on that side (I see Dr. Green has a section on this in his book.)

I have asked both my dad and my brother to please get the test, but they are not taking it very seriously. My aunt absolutely refuses to believe there is any kind of link between fibromyalgia, arthritis and celiac and will not even talk about it. They are treating me like I have gone over the deep end with my gluten-free diet. But I have never been better in my whole life.

So I have some questions. First of all, in simple terms (please!) how does the genetics of this work? Is it the kind of thing where you have to get a gene from each parent or can you get it from just one? What are your odds if only one parent has it? If both do? And does my mom's negative test result rule out celiac on her side (she is Scotch-Irish, diabetic and has digestive troubles with a nephew who has "failure to thrive" syndrome.)

The second question is, what is the most successful way to convince my family to request the test? Has anybody found anything that works? I have been passing out copies of the Green book. And I explained that it is genetic and that I must have gotten it somewhere.

Thanks!

Lisa

[happygirl]

Hi Lisa,

It is genetic in the sense that it is linked to two genes (and they are researching more), but just having the gene doesn't mean anyone has it. So while yes, you got the gene somewhere, it doesn't mean *necessarily* that anyone else has it.

You already know the stats: https://www.celiac.com/articles/647/1/Preva...-133/Page1.html

"Group Prevalence

First degree relatives 1 in 22

Second-degree relatives 1 in 39

Symptomatic patients 1 in 56

Not-at-risk individuals (overall prevalence) 1 in 133

These results are much higher than previous studies have found, and they indicate that celiac disease is perhaps the most common genetic disorder in the United States, as well as one of the most poorly diagnosed diseases."

You can get a gene from each parent. So you could have no Celiac genes, one, or two. And one person not having a gene doesn't mean that someone else on a side does/doesn't have it. Dr. Green has good info on genes in his book.

More good info: Open Original Shared Link

I think a lot of people have had the same problems that you have. I don't think there is a great answer. Unfortunately, we can't make anyone do anything they don't want to. Sometimes the best we can do is give them the information, and hope they make the right decisions. Doesn't make it any less frustrating, however.

[Ursa Major]

It is possible to get celiac disease if it only comes from one side. Boy, does your father's side of the family ever sound like a whole family of undiagnosed celiacs! I did have symptoms of fibromyalgia from the time I was three years old. But I do believe that the cause were food intolerances all along. Because now that I am not eating the foods I am intolerant to, the fibromyalgia is gone (after having it for 50 years).

Your mother could be gluten intolerant without having celiac disease. Since she was willing to get tested, maybe she is open to trying the diet? Mind you, those blood tests aren't very reliable anyway, and a negative test does NOT rule out celiac disease. There are people here who had a negative blood test and a positive biopsy with completely flattened villi!

With family it is often like hitting a wall when you try to get them to understand that they may have celiac disease. They don't want to admit that they could have given it to you (your dad) or that they may have to give up certain foods. They'd rather be sick.

Where it gets upsetting is, when you can see children suffering and nobody listens. Because they don't have a choice.

You may just have to back off. It took over a year before my oldest daughter finally put herself and her five children on the gluten-free diet, with amazing results. And it took another granddaughter suffering for a year before the next daughter admitted that the child has celiac disease (her mother-in-law has it, too, so it would surprise me if any of her kids could tolerate gluten) and started her on the gluten-free diet. It was very hard to see my little grandchildren suffer.

My six brothers and sister in Germany are a real tough one. My sister did the test, it was negative, and so she completely refuses to even try the diet. She has ALL the same symptoms I had, but refuses to believe that there is such a thing as gluten intolerance without having officially celiac disease.

My mother died of liver cancer when she was 66. Her mother died of stomach cancer when my mother was 20. I am really afraid that my sister and some of my brothers will die of cancer within the next ten years. That is really tough.

So, I totally understand where you are coming from. You don't want them to die. You are watching them and their kids suffer. And I am afraid there is nothing you can do about it. Giving them the book is a good idea. You need to just back off now. Hopefully they will read it and see the light.

But unfortunately, you can't force anybody to get themselves or their families tested.

[Lisa16]

Thank you both--

I went back into Green and looked at what he says about genes (pg 70-71). I read it again. Lord! He says, "ten percent of first degree relatives will have celiac disease" -- oh man! I so wish I hadn't seen that because it is even worse odds than 1 in 22!

But even after re-reading this section, I am still not quite clear how the genes are passed-- Green says we get two sets of HLA proteins, one set inherited from each parent. Are these HLA proteins the same thing as genes? So does that mean we have 4 genes and only one of them has to be celiac to get the disease? This is the time I wish I had taken some biology! I also see that having the genes does not mean you get the disease, but they don't quite know why that is. So my mom could have "silent" genes, or a false negative on the blood work.

So with the bloodwork-- does this mean a false negative is possible, but a false positive is not? I see Green says, "EMA is highly specific, virtually 100% so, and almost 90% sensitive. If this test is positive, it means virtually 100 percent will have celiac disease." (46-47.) Am I interpreting this correctly? And if this is so, why did my doctors let me go with highly positive bloodwork for over 8 years based on a negative biopsy?

Ursa-- I will ask my mom to try going gluten-free. I think it will be hard because she cannot even make herself follow the diabetic diet. She has also tried a few of my breads/waffles, etc. and expressed her dislike of the texture/ taste. My dad's family is all German too. His father's side is from what used to be Pomerania and his mom's side is from Westphalia. I am afraid for all of them. On his mother's side there was a 100% mortality rate from digestive cancers among her siblings-- one died very young (at 2-- a twin.) I am also worried about my little cousins-- they are going to give one little guy an RX for RA.

This is a very strange experience-- like watching a train wreck about to happen, but not being able to do anything to stop it.

Lisa

[fedora]

Hi,

I just spent a lot of time researching gene info on celiac disease. I am really into science. I will do my best to explain what I have figured out.

We get 2 genes on each gene site. One from our mom and one from our dad. These genes contain the HLA proteins. When they do DNA testing for celiac they look at a specfic chromosome. On this chromosome are the 2 genes. They use to test DNA with blood. Now they do it molecularly from cells swabbed inside the mouth. At this gene site you can have no celiac genes, one celiac gene and one non celiac gene, or two celiac genes. However, some doctors and researchers do recognize gluten intolerant genes.

There are two main genes that have been identified as Celiac genes. If you got blood DNA testing these would be called DQ2 and DQ8. DQ8 is actually DQ3 subtype 2. If you get molecular DNA testing then the celiac genes are DQ2 subtype 1 and DQ3 subtype 2. On a molecular level the two types of DQ2 are both gluten intolerant genes. When they study this in the lab(not in humans) then DQ2,subtype 1 causes villi damage and DQ2,subtype 2 does not. However, DQ2,2 does cause gluten intolerance. Many celiac centers still think you have to have either DQ2 or DQ8 to be a Celiac. They are wrong. There are people with celiac who have neither. One researcher has linked DQ1,5 with neurological symptoms caused by gluten. There are people on this site with confirmed celiac disease through biopsy that have villi damage with neither of the two main genes. How is this? Because research has not discovered all the factors involved with celiac. Just last week a publication came out saying they had identified 7 more gene regions. So someone could have neither DQ2 or DQ8, but have lots of those gene regions showing an inclination towards celiac. This may explain why some with DQ2 or DQ8 do not get celiac. These other gene regions may need to be involved also. Four of those other gene regions are also linked to diabetes one. It is still genetic, even if we don't know all the contributing factors.

I understand you frustration and concern with your family. I worry about mine too. My father almost died when I was 12 from intestional problems. It sounds like to me that your whole family could be gluten intolerant. I got the gene testing done to help me proceed with my children and my parents. I did not think they would get tested based just on my diet results. I did not have blood tests or biopsy. My doctor did suggest celiac disease to me years ago, but I was never tested. My parents do listen to me, so I thought if I had the genes it would be enough to get them tested. My mom has asked me to give her some info.

A book may be too intimidating for some. Everything I learned was overwhelming for me at first!!

Maybe just some simple printed out information. They may not be ready. When my dr. suggested Celiac he didn't think I had it cause I didn't have chronic diahrea. I was giving up wheat because it gives me rashes and the idea of giving up gluten was too much for me. Wheat was hard enough. But eventually I figured it out and realized I HAD to do it. Maybe that will happen to them. Hopefully they just need time to digest it. As the kids get older they will be able to make their own descisions. Hopefully no permenant damage will be done. Good luck.

Don't hesitate to ask for questions about the gene thing.

[Ursa Major]

So with the bloodwork-- does this mean a false negative is possible, but a false positive is not? I see Green says, "EMA is highly specific, virtually 100% so, and almost 90% sensitive. If this test is positive, it means virtually 100 percent will have celiac disease." (46-47.) Am I interpreting this correctly? And if this is so, why did my doctors let me go with highly positive bloodwork for over 8 years based on a negative biopsy?

You are right, false negatives are VERY common, but false positives are practically unheard of.

It is a travesty that your doctors didn't tell you to go on the gluten-free diet for eight whole years, just because of a negative biopsy.

A positive biopsy will confirm celiac disease, but a negative biopsy can NOT rule out celiac disease. The reason is, that there are something like 33 feet of upper intestine. To take biopsies from two or three spots (some doctors take more, others take one) is hit and miss. Unless ALL your villi are destroyed already, there will be damaged spots and healthy ones.

If a healthy spot is biopsied most doctors claim you do not have celiac disease. But that biopsied spot may be surrounded by damaged tissue that was missed.

Nowadays many doctors (not enough of them still) will tell you to try the gluten-free diet even if you had a negative biopsy, if you have symptoms and had positive blood work. And they will give you a diagnosis of celiac disease based on the bloodwork with positive diet response.

[Lisa16]

Wow! This was really a revelation. I am reeling.

Thank you so much. I have really learned a lot tonight! And I really appreciate you taking the time to explain this to me.

Perhaps I will have the gene testing done-- that way we will have more information on the table and we might be able to figure out where it is exactly and help somebody I love not have a bad, premature ending or a painful life.

In those eight years I really suffered and it is sad if it that didn't have to be the case. I saw multiple doctors and on my record no fewer than 4 different physicians suggested I might have celiac sprue. I just recently saw the record and their notations. But nobody-- not once-- ever told me to try going gluten-free. In that time I lost my gallbladder, suffered infertility and irregular cycles, had a hysterectomy, had extreme daily D, got migraines 3-4 times per week, had nerve pain, muscle spasms, recurring yeast infections, joint pain, arthritis, depression, fatigue, insomnia, malabsorbtion, DH in many places, sores in my mouth, autoimmune conjunctivitis, borderline cardiomyopathy, blood pressure spikes and I investigated going on disability for IBSD. And I was given a lot of meds I didn't really need.

Might these all have been avoided? My IgA levels were +60 units. They really could do so much better.

It took a very smart dermatologist who finally said, "you know.... that doesn't look like shingles to me." Bless that man. Almost everything is gone or much better-- in just 4 months! Unbelievable.

And now... trying to help my loved ones. I can see it so clearly now.

This disease is really a neverending battle, isn't it? How much needless suffering it causes. And worst of all I know my story is hardly unique here. And I know what is waiting for my family....

Lisa

[kbtoyssni]

I think it will be hard because she cannot even make herself follow the diabetic diet.

Diabetes and celiac are also very strongly linked. Maybe someone here can cite some research about what percent of diabetics have celiac. I don't know the number, but it's high. High enough where I'd recommend every diabetic automatically be tested for celiac.

[sickchick]

I am so sorry you must be SO frustrated!!!

[itchygirl]

Diabetes and celiac are also very strongly linked. Maybe someone here can cite some research about what percent of diabetics have celiac. I don't know the number, but it's high. High enough where I'd recommend every diabetic automatically be tested for celiac.

My hepatologist agrees with you!!!

Its made it onto the American Diabetes Assn. Website

Open Original Shared Link

There seems to be a link between type 1 diabetes and celiac disease. About 1 in 20 people with type 1 diabetes has celiac disease. Even in the general population, including people with type 2 diabetes, the rate could be as high as 1 in 250.

Lisa-One thing you might consider-even though your Mom's or Cousin's doctor can't talk to you (because of HIPPA) you can provide information to their health care providers. Just give them all your bloodwork (Fedex is good) with a brief cover letter stating that you feel that this information may be important for their treatment team to be aware of. You may wish to copy out the citation you were reading, the ADA info above and include that as well. The worst they can do is ignore it. And your family members may be po'd. But that is an option. At least it will be in their file.

[YoloGx]

My hepatologist agrees with you!!!

Its made it onto the American Diabetes Assn. Website

Open Original Shared Link

Lisa-One thing you might consider-even though your Mom's or Cousin's doctor can't talk to you (because of HIPPA) you can provide information to their health care providers. Just give them all your bloodwork (Fedex is good) with a brief cover letter stating that you feel that this information may be important for their treatment team to be aware of. You may wish to copy out the citation you were reading, the ADA info above and include that as well. The worst they can do is ignore it. And your family members may be po'd. But that is an option. At least it will be in their file.

I think that in time celiac will be more known and accepted in our society. Its just that right now almost no one has heard of it. Given that, its natural people think you are crazy especially since it requires going to such extremes of gluten avoidance. It does looks crazy to the uninformed. They think you are being neurotic. Unfortunately it is the opposite of crazy but the appearance and the social convention is hard for a lot of people to buck. It will gradually change however. Just by your example of changing your health for the better so radically and talking about your experience will convince more people than you know. Eventually even your relatives might start putting two and two together when they are keeling over and you are enjoying radiant health after a lifetime of the opposite before you went off gluten.

[ravenwoodglass]

Just by your example of changing your health for the better so radically and talking about your experience will convince more people than you know. Eventually even your relatives might start putting two and two together when they are keeling over and you are enjoying radiant health after a lifetime of the opposite before you went off gluten.

This was the case for me. After I had been gluten-free for about 6 months my family saw a different person. Not just painfree and able to move but also even tempered and happy. A person my children had never met. It took little encouragment after this to get my family to test. For us inheritance was 100%.

For the diabetic Mom who is reluctant to test, type 2 diabetics who are gluten intolerant are able to achieve much better control of their blood sugar gluten free. It is not a cure by any means but some with the gluten free diet and more excercise (very possible once gltuen related fatigue and pain resolve), and if needed weight loss are able to achieve almost normal BS reactions.

[happygirl]

Keep in mind that 30-40% of the American population has one or both of the Celiac genes. 1 in 133 Americans actually has the disease.

[JNBunnie1]

Wow! This was really a revelation. I am reeling.

Thank you so much. I have really learned a lot tonight! And I really appreciate you taking the time to explain this to me.

Perhaps I will have the gene testing done-- that way we will have more information on the table and we might be able to figure out where it is exactly and help somebody I love not have a bad, premature ending or a painful life.

In those eight years I really suffered and it is sad if it that didn't have to be the case. I saw multiple doctors and on my record no fewer than 4 different physicians suggested I might have celiac sprue. I just recently saw the record and their notations. But nobody-- not once-- ever told me to try going gluten-free. In that time I lost my gallbladder, suffered infertility and irregular cycles, had a hysterectomy, had extreme daily D, got migraines 3-4 times per week, had nerve pain, muscle spasms, recurring yeast infections, joint pain, arthritis, depression, fatigue, insomnia, malabsorbtion, DH in many places, sores in my mouth, autoimmune conjunctivitis, borderline cardiomyopathy, blood pressure spikes and I investigated going on disability for IBSD. And I was given a lot of meds I didn't really need.

Might these all have been avoided? My IgA levels were +60 units. They really could do so much better.

It took a very smart dermatologist who finally said, "you know.... that doesn't look like shingles to me." Bless that man. Almost everything is gone or much better-- in just 4 months! Unbelievable.

And now... trying to help my loved ones. I can see it so clearly now.

This disease is really a neverending battle, isn't it? How much needless suffering it causes. And worst of all I know my story is hardly unique here. And I know what is waiting for my family....

Lisa

You know, if this had been a failure to diagnose cancer this doctor would be screwed. I wonder where malpractice starts and ends for what a doctor is liable for? Maybe just one lawsuit from someone who's been treated this poorly would help keep doctors from ignoring something they know is real but don't make any money treating. Or, more precisely, the American Medical Association.

Seriously, my doctor (GP) is one of the most openminded men I've ever met, and it didn't even occur to him. I figured it out on my own, and when I told him, he said 'Great! I don't want to see your for a year, I hope you stay healthy.' He didn't even suggest testing, he just told me to do whatever made me feel better. But the AMA is NOT teaching doctors what they should know about this disease! I swear, these are the people who used to teach us that the world is flat.

[Ursa Major]

Lisa, that is just unbelievable! It is already bad enough that you had a positive blood test eight years ago, but that your doctor IGNORED four notes from doctors suggesting celiac disease really should be considered malpractice.

Actually, that is why I demand to get a copy of every note from specialists I see that are sent to my doctor. I want to know exactly what they said.

That is how I found out what the stupid, arrogant (not to mention completely incompetent) endocrinologist I saw last month said to my doctor. I am still thinking about reporting her to the college of physicians and surgeons.

Not only did this doctor do the tests all wrong and has no clue as to how to interpret them correctly, she made me sound like a crazed, paranoid hypochondriac to my doctor, who really has no problem and 'doesn't need any of those hormonal supplements at all'. Plus, she twisted every word I said, and claims I said things I never did. She outright lied to make me look bad!

Of course, she never expected me to read those notes. Too bad that I always get a copy of everything for my own files. Including every single result from tests performed.

And that is what I suggest everybody does. I bet if you would have seen those notes that were suggesting celiac disease, you would have long been on a gluten-free diet.

[YoloGx]

But the AMA is NOT teaching doctors what they should know about this disease! I swear, these are the people who used to teach us that the world is flat.

Unfortunately docs with head in the sand these days is all too true. Its so great you got a good doctor Bunnie. This last bit about the world is flat made me laugh!

[Lisa16]

And the terrible thing is that it might actually result in cancer for us-- that is the pattern so far. I am stuck in a HMO and the doctor I am assigned to is not famous for having an open mind. The notes were from his colleagues-- specialists or on-call doctors I saw! I am going to see if I can change plans or something. I can really understand now why people get so mad. I think I need a different guy. I still haven't gotten a referral for a dietician-- I am relying on this site for info.

I have another question about the genes-- if I understand correctly, there is a potential for 4 DQ celiac genes to occur (not counting the new ones that fedora talked about.) So if you hit the jackpot and get all four celiac genes, does that mean you will get the disease as a kid? Does it mean the disease advances more quickly? Or does it just kill you outright?

And if you get three, is it less severe than getting four (and so on for two or one....) And if you only have one, does that mean late onset or, perhaps, slower progression? Do the number of genes you get affect your odds of developing the illness?

Thanks!

You are wonderful and supportive and kind and I really appreciate it-- I especially appreciate knowing that I am not alone.

Lisa

[psawyer]

The number of genes you yourself have makes no difference to your chances of having the disease triggered, as I understand it. It does, however, affect the chances of your children eventually developing celiac disease.

Celiac disease requires three things:

1. 
   At least one of the genes (two are definitely known, there may be others);
   Gluten in the diet (unless you take specific action, you'll be eating it somehow);
   Something to stress the immune system to trigger the disease (this can happen at any time, and for many people with the genes, it never happens)
   

The triggers vary, and can include emotional stress (divorce, loss of a job, pregnancy) or an infectious disease (mononucleosis is commonly reported as a trigger).

[fedora]

Hi lisa,

first, I am sorry for your suffering. Sadly, many of us understand. I am 32 and have had symptoms for 22 years!!! I luckily had some better years in there. I also had some hellish years. I was just totally dismissed by doctors as a kid. oh well. I choose now for this to be a part of my life, something meant to be there for others to learn from. Now my children will not suffer as I did!!!!

About the genes.......There are only 2 openings for the DQ genes to be, not four. If you have celiac genes in both openings, some call you a superceliac. It is impossible to have more than 2 genes on this chromosome(or any chromosome for that matter).

For example

my two genes are:

DQ2,2 (DQ2 subtype 2)- gluten intolerant gene.

DQ1,5 (DQ1 subtype 5) - a gene some researchers have linked to gluten intolerant neurological problems.

So those are my two genes.

Somebody else could be

DQ8(DQ3,subtype 2) AND DQ2(DQ2, subtype 1)

This person also has 2 genes, but they are both recognized world wide as the Celiac disease genes.

Someone can be gluten intolerant without developing celiac disease. I am sure many people are who do not get the damaged villi. Also, just because someone has the genes does not mean it has been triggered to make them gluten intolerant. But for those that are triggered and became gluten intolerant, two celiac genes may make it worse. There are people out there with celiac genes who do not have celiac.....lucky them.

I hope this is not confusing.

Let me know if you do get the testing done. I have been thinking about doing a project on it. I just do not like that some places(Chicago) do not recognize that people can get celiac who do not have the DQ2 or DQ8 gene.

good luck!!!!

[YoloGx]

Just wanted to add that when I went to Kaiser and told them I figured out I had celiac given my sympotms and the fact I was so much better off wheat, rye, barley and oats. They said not one word about it. The deal was that I tried but didn't know enough about it from reading the Merck Manual. I was way better but still had all kinds of problems since I wasn't avoiding trace glutens except where the bottle said wheat etc. I still thought it was some kind of allergy. But the vagaries of the celiac condition never entered the dialogue even though as it turns out they already knew (even though I didn't) that my mother and brother with Down's were actually tested by them to have celiac too.

Now my mother has depression and obvious DH but still the docs at Kaiser don't think its celiac related! She told them how she had this condition monitored by scientists at the Univ. of California at Berkeley as a child which is why she had herself and my brother tested, especially since he got D all the time til I changed his diet. How dense can Kaiser get? She thought she was over the symptoms, she always thought it was something you could grow out of like she supposedly did but actually didn't. It went underground and affected her nervous system and eyes though the celiac symptoms aren't as severe as when she was a child of four.

So my best suggestion if you are working with Kaiser is to do your best to educate them, nicely. Buy some books and show them what is what. Try and adore them so they will listen to you however. Make it seem somehow its their idea and you are just the lowly patient. I didn't and didn't get anywhere; for me it was just a waste of money. They wanted to put me on antidepressants when I had joint problems that wouldn't go away.

To top it off just the other week my mother told me I was first diagnosed with celiac as an infant when I was failing to thrive and sick with pneumonia after being introduced to gluten. Then was put back on gluten at age 4--and sick ever since til I figured out more and more of the shape of the elephant over the years.

For this reason I laugh. What else can one do? Plus am working on a book on healing herbs, supplements and other strategies and recipes for making celiac easier to live with.

[fedora]

yolo,

ugh. doctors can be annoying.

I agree that symptoms can go underground. Mine changed. I had D, vomitting, joint pain, mood problems. There were times I was so sick I thought I might die. The doctors told my mom and I that I had growing pains and the stomach bug. My mom tried to take me to an endocronologist, but none of them would see me since I was just 12. Then I went through a teenage change. I still had issues but not nearly as severe. My digestion got better, only had mild joint problems, but still moody. Then at 19 I got rashes, itching , joint pain again., and eventually some years later I got C and IBS and a severe rash. I am not sure why the symptoms can change, but suspect hormones.

fedora

[Welda Johnson]

Hi,

I have had Celiac symptoms since the age of 8, and now, at 63 I have been on a great gluten-free diet for quite a few years, and have excluded all grains, all milk and dairy, egg whites, yeast and meat. My grandson was born with Celiac almost five years ago, which really got our family's attention. I ordered a test online from Enterolab.com and through a stool sample we learned that he was intolerant of all grains, milk and dairy. I bought all my family members the test for grains only, at about $100 each, though the full spectrum test for my grandson was over $300. Some used the test, some set it aside. My sister learned she has Celiac and my brother learned he doesn't, but my sister has never gone on the diet, though she has experienced Thyroid cancer and was suspected to have cancer of the colon, which thank God she didn't (even though the doctor said the chance was over 90% that her polyp would be cancerous, she was blessed to have learned it was benign). My three grown children have never carried through with the test.

I have learned that a lot of people do not like to change that easily. As we know, this diet involves a great deal of dedication and, at its basis, a love of ourselves, to the point that we can ignore the oftentimes blatantly rude comments from others about this long and frustrating journey with our health that we have traveled.

I am amazed to be telling you this, because I used to be so adamant about spreading the news of the Celiac diet, but I am learning to "Live and let live." I feel better than I ever have in my entire life, and I will hope that this will serve as an example for others, so that when they ARE ready to change their diets, I can be the person to help them through. I'm also putting together a Celiac cookbook, so hopefully that will be my contribution to helping my family members when they are open.

I wish you well on your journey toward health. Each day gets better! Welda Lou

[YoloGx]

Hi,

I have had Celiac symptoms since the age of 8, and now, at 63 I have been on a great gluten-free diet for quite a few years, and have excluded all grains, all milk and dairy, egg whites, yeast and meat. My grandson was born with Celiac almost five years ago, which really got our family's attention. I ordered a test online from Enterolab.com and through a stool sample we learned that he was intolerant of all grains, milk and dairy. I bought all my family members the test for grains only, at about $100 each, though the full spectrum test for my grandson was over $300. Some used the test, some set it aside. My sister learned she has Celiac and my brother learned he doesn't, but my sister has never gone on the diet, though she has experienced Thyroid cancer and was suspected to have cancer of the colon, which thank God she didn't (even though the doctor said the chance was over 90% that her polyp would be cancerous, she was blessed to have learned it was benign). My three grown children have never carried through with the test.

I have learned that a lot of people do not like to change that easily. As we know, this diet involves a great deal of dedication and, at its basis, a love of ourselves, to the point that we can ignore the oftentimes blatantly rude comments from others about this long and frustrating journey with our health that we have traveled.

I am amazed to be telling you this, because I used to be so adamant about spreading the news of the Celiac diet, but I am learning to "Live and let live." I feel better than I ever have in my entire life, and I will hope that this will serve as an example for others, so that when they ARE ready to change their diets, I can be the person to help them through. I'm also putting together a Celiac cookbook, so hopefully that will be my contribution to helping my family members when they are open.

I wish you well on your journey toward health. Each day gets better! Welda Lou

Hi Welda,

I guess I am still at the "spreading the word" stage due to it still being such a shock, after getting rid of all or most trace glutens, to no. 1) discover I could at age 58 finally get rid of joint pain that continued to plague me and 2) that I was less anxious when it comes time to maker order out to disorder with my personal stuff and 3) how difficult it nevertheless it is to adjust to not being able to eat out at all or eat at other people's places without bringing my own food--or suffer the consequences of getting really ill from CC as I have recently. This last makes me feel like I am from some strange planet or must appear as if I am completely neurotic to others even though I know I am not at all and that in fact it is quite the opposite.

Nevertheless I am starting to get it that I need to calm down a little and just do what I have to do without making such a big production out of it. Its just food after all anyway when you boil it down and for a lot of people it just isn't such a big issue. It just feels big because not only have I had numerous physical ailments brought on by celiac that I have had to overcome without knowing what I was dealing with exactly, but also once again I am the "abnormal one" through no fault of my own by having to now be so seemingly overly careful with diet etc.--so that re-stimulates old issues no doubt since I have always been slightly "odd" in part exacerbated by having celiac so young. For instance as a child I began to see visions and had other neurological issues as well as weird skin and constant sore throats. Most of my life I would wake up feeling like a train ran over me etc. I always got sicker faster and longer than almost anyone else I knew from as I recall at least age 8 on if not a lot earlier. And later almost lost my kidneys due to the same beast celiac and was starting to get skin cancer until I began to change my diet etc. etc. Its no wonder being an artist and writer became a necessity for me.

However your point is well taken. People can really get turned off from too much proselatizing. Its better to show by example than tell. Plus there is a lot more to life than diet.

So once again the need to express about this subject of diet etc. is strong which is why I too am working on a book. Good luck with your book too by the way. The more the better I figure. I went over to the local Barnes and Noble book store and saw not one thing on celiac. Maybe we can keep each other posted.

[ellen123]

So my best suggestion if you are working with Kaiser is to do your best to educate them, nicely. Buy some books and show them what is what.

Well, I agree with this suggestion. In fact, in reading this today and thinking about this stuff all month, I'm planning on writing a nice, direct letter to my family doctor, with a copy to each other doctor there, informing them about how I diagnosed my own gluten intolerance (don't know for sure if it's celiac disease, but it doesn't matter to me), the tremendous benefits I've experienced, the possible ramifications for me if I had continued eating gluten, and suggesting that they might want to make it part of their consciousness when encountering the kinds of symptoms typical of celiac patients. Because whether they've read about it in some medical journal, it is obviously not on their radar. In fact, I'm also going to send a copy to the idiot neurologist who briefly examined me and told me my intense 30 year war with pain didn't "seem like a neurological problem." I agree, these letters shouldn't be mean or nasty but direct and to the point -- not like a lecture, just informative.

Because until the so-called "experts" start agreeing that it is within the expected standard of care for a physician presented with typical celiac symptoms to test for celiac disease/gluten intolerance -- or that ignoring that inquiry is below the standard of care -- it will not be considered malpractice for doctors to ignore all the signs, and their patients' pleas, even if their ignorance leads to serious but avoidable consequences for the patient.

[Lisa16]

I just got a phone call from my father telling me that my cousin (his sister's daughter) has severely abnormal liver tests and they suspect a cancer/tumor. (This is the mother of the little boy with arthritis.) He wanted to know if celiac could cause liver damage and I believe he is starting to come around. He was going to call his sister tonight and tell her what I read him from the Green book and from the celiac.com articles.

Please let it be in time.....and please let it not fall on deaf ears.