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I posted this on another section in a thread but the realisation of it hit me so hard I wanted to see others' take on the subject.

I keep seeing threads from ones who are not sure if they are Celiac or not and yes, it is VERY confusing. This is my observation.

The powers that be keep saying that the incidence of family members having Celiac is around 10%. Who are they kidding? So many families are 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 Celiac Disease Center that 35% of Americans test positive for the DQ2 or DQ8 gene. That's 1 person in every 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 getting together and having a family is very high!

Another medical article pointed out that in the antibody blood tests a lower figure means a negative result. Because some 'healthy' control subjects also show the antibodies the level has to be set higher in order 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?! They are assumed to be healthy, but what if they are not? That puts a cat among the pigeons!

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 it was taken 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 and makes the whole testing procedure a heap more accurate and biopsy totally unnecessary! It would then mean that ANYONE with gluten intolerance showing ANY level of antibodies is actually Celiac.

Perhaps they do actually already have the definitive tests but just haven't twigged it yet!

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Personally, I think our family has Celiac genes. But I'm the only one who is trying to get a dx. I think part of that is that if I can get a Dx, then maybe the rest will think about it. My father has reflux, my aunt (his sister) is pretty intolerant to wheat and has a messed up thyroid... hmmm

Then her two daughters cannot eat wheat very well, but they have yet to go gluten-free. They are of the belief, everything in moderation. One has hypothyroid, dairy intolerance and soy intolerance, the other is speculated to have fibromyalgia.

My brother has more gastro problems than ANYONE I know, and has thrived on a whole food diet. Somedays he says that bread bloats him, some days he doesn't. And honestly, I'm not so sure about my other brother.

Then there's me: a case study unto itself.

Ya think there's a pattern here?????

That's pretty much everyone from my father down. Oh yeah, did I mention that my grandma has a touchy stomach too?

So, I agree with you. I think the incidence in family is far greater than 10%. When the diagnostic tool can only be used after damage has occured, it can't help but be faulty. I thankfully, caught my digestive woes early on. Do I believe I have celiac? Absolutely. Will I ever find out for sure? I don't know. But removing gluten was only the beginning, I am still working on getting my health back on track.

Statistically, this is the most common genetic disorder. But, as you said, the research is still in it's infancy. Somewhere around 98 or 99% of people with celiac disease go undiagnosed. I think that until the diagnostic criteria change, that number will remain high. I agree with you, what if the number of people with the gene who develop celiac is much higher than they think? I think that it is possible to have the gene with out actually having the disease: there are people with the gene for Cystic Fibrosis, but never actually develop it.

But given the fact that people can be asymptomatic (or what they consider to be) and have celiac disease, it would stand to reason that more people who carry the gene would actually have Celiac than not.

Ok... that's enough of my incohesive reasoning for tonight... what a great thread!!!!

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The difference between celiac and cystic fibrosis is easy:

With celiac you only need one gene.

With cystic fibrosis you HAVE to have two copies of the gene, one from mom and one from dad.

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In my family, apart from my Mum who died before it was diagnosed but was definitely Celiac, those with gluten intolerance or at least symptomatic of, include my Dad, probably his father (died at 50 of a heart attack), his three siblings, myself, my husband, our two children, our two grandchildren, their father and his mother and I daren't start on the cousins and their spouses and offspring!

And so it goes on. This is a far, far bigger problem than the 'powers that be' give credence to.

It's 5am in the morning and I have been up all night after being 'glutened' by some scrummy cookies I made last night - I used oats and I think they were contaminated! Whilst not sleeping I have just emailed Terry Leahy at Tesco's to enlighten him of my theory and to try and get him to see the scale of the problem.

I don't know about the States (although different ones are always talking about some of the yummy stuff you can get over there!), but the gluten-free choice here in the UK is abysmal. If we really are talking about 1 in 3 then it is about time that one third of their store space was devoted to gluten-free foods! :lol:

No seriously, the biggest problem is that it isn't taken seriously, and it is much bigger than they realise.

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I have always regarded any level of the antibodies as indicative of at least an intolerance, if not Celiac. It doesn't make sense to me that the immune system would be reacting at all otherwise. If antibodies to every natural food substance can be identified, then that's a different story, but until then I see no reason to think the antibody levels must reach any particular point. A reaction is a reaction, no matter how small.

To put it another way, it would be like saying you could turn down a volume control until the level got below a certain point, and then say "there's no sound at all". It's either there, or it's not. If it can be measured, then it's there.

Recently, I heard a news story about how astronomers pointed a telescope at what they thought was empty space, because nobody ever saw anything there. However, since the telescope was highly sensitive, it eventually collected enough light to prove that the area of space is actually chock full of galaxies. So the better our method of detection, the more we are able to discover.

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Another medical article pointed out that in the antibody blood tests a lower figure means a negative result. Because some 'healthy' control subjects also show the antibodies the level has to be set higher in order 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?! They are assumed to be healthy, but what if they are not? That puts a cat among the pigeons!

Yawn.....

I've been saying this for years.... does anyone listen?

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Yawn.....

I've been saying this for years.... does anyone listen?

Ah yes, but perhaps if enough of us shout loud enough they will finally start to sit up and take notice!

What we lack in health we seem to make up for in common sense - anyone who is prepared to give gluten-free a trial must have some degree of that! :lol:

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I am in Canada. My alternative doc claims that 37% of the caucasion population are gluten intolerant. The problem with a celiac diagnosis is that no one makes any money from it. The big pharma companies would rather pump out all kinds of drugs to treat the wide range of symptoms. Sickness is big business.

I have talked to all of my family members. Tons of cancer, diabetes, short stature, reflux, constipation, mental illness and alcoholism. Both my husband and I tested positive through enterolab. I am waiting for son' results. We will test older daughters this summer as they are away at school. Family members just kind of look at us as though we are out to lunch. Who wants to give up all of that garbage food that they are all addicted to. We have also talked to friends who have all kinds of arthritis and other problems and people just aren't interested. I think it is only the ones who get really sick and desperate are the ones who will try this diet. People like us. It is so frustrating.

Thanks I needed to rant!

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Gluten Intolerance is 100% in my family & that goes back a couple of generations also. Although, I am the only one that is gluten-free. Everyone else does not mind being sick & taking their chances on picking up more autoimmune illnesses or colon cancer that my mother died from.

We are mostly all double DQ1 genes, my sister tested positive via blood work but was only gluten-free about 3 months, she is also casein intolerant.

I see walking textbook cases of celiac but are they interested in checking it out or giving up gluten and dairy. NO, is the answer. Among my friends & acquaintances I do know 5 families that have diagnosed celiac.

I am not sure what will happen once people really catch on that gluten is slowly killing them. They think their doctor would know if they had a problem...

I think the 30% of the population that I have read about is really a little low, I think it is closer to 60% ( or more) at least that is what I am seeing. I think very few people can eat gluten & not suffer the effects. I have seen very few. But I did talk to a woman that was 82 looked 56, she was working out at the gym, has never been sick, takes care of all her "old" 60 & 70 Year Old friends, now I think there is a woman that does not have a gluten problem - I was so amazed by her, I forgot to ask about her diet. She talked about driving her friend to the grocery every Friday so I think that she cooks all her meals...

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I think the 30% of the population that I have read about is really a little low, I think it is closer to 60% ( or more) at least that is what I am seeing. I think very few people can eat gluten & not suffer the effects. I have seen very few. But I did talk to a woman that was 82 looked 56, she was working out at the gym, has never been sick, takes care of all her "old" 60 & 70 Year Old friends, now I think there is a woman that does not have a gluten problem - I was so amazed by her, I forgot to ask about her diet. She talked about driving her friend to the grocery every Friday so I think that she cooks all her meals...

She may well be a 'Carbohydrate' metabolic type whose body can cope with grains perfectly well. Those people seem to be in the minority! Perhaps she recognised early on which foods suited her better and has continued on the path.

On another tack - in the paper today was yet another situation of a dog attacking a child. I did read somewhere that dogs should not be given grains and I would not be at all surprised if the gluten-based cereal dog biscuits that these carnivorous animals are being fed in huge amounts is not frying their brains and causing them to act out of their normal character!

Not surprising then if people act the same way on a gluten-based diet!

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Ah yes, but perhaps if enough of us shout loud enough they will finally start to sit up and take notice!

What we lack in health we seem to make up for in common sense - anyone who is prepared to give gluten-free a trial must have some degree of that! :lol:

The problem however is cyclic....

IMHO what is important is the fact that the current "normal ranges" for antibodies are taken from a sample which includes a large percentage of undiagnosed gluten intolerants/coeliacs....

This basically makes the "normal range" worth nothing... I have yet to see any publication of RAW data... the ranges and distributions or for instance one GROUP of people being tested over time... what is one persons natural variability? What levels should a 2 yr old have or a 6 yr old?

All we ever get told is "the normal range is XX".... without seeing the distributions of where people lie OR where an individual may vary. Perhaps one day we have one level and a month later a different one? Who knows unless they actually measure!

Whilst this is the case the actual basis for much of the research is just wasted! When this is combined with the biopsy as a golden test it just clouds the picture further....

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I have always regarded any level of the antibodies as indicative of at least an intolerance, if not Celiac. It doesn't make sense to me that the immune system would be reacting at all otherwise. If antibodies to every natural food substance can be identified, then that's a different story, but until then I see no reason to think the antibody levels must reach any particular point. A reaction is a reaction, no matter how small.
Being new to this, I did not realize that a negative response did not mean zero antibodies. I totally agree with RiceGuy here. If there are antibodies at all, the body must be producing them in response to something, and to ignore whatever that is is foolhardy. Why are people not taught to think logically? Where is Sherlock Holmes when we need him?

Sigh.

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I live in a rural neighborhood where everyone lives on at least 15 acres. My closest neighbor,me, possibly my daughter and son, my other neighbor and possibly her son are all gluten intolerant. There are 12 of us in my area. So out of 12, 3 definately are gluten intolerant, and possibly 3 more. So if those 3 are then that is 6. Six out of `12. That is 50% At least it is 25%!!!!!

My one neighbor is positve for celiac with blood tests and biopsy. My other neighbor figured it out from diet elimination(barley soup was making her sick). She is awaiting results on her son from enterolab. I did diet elimination and enterolab afterward.

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What if it is even bigger than 1 in 3? What if it is everybody with a DQ gene? I am seeing people here with DQ1, DQ5-6-7 and DQ9 (and probably 3 and 4 too, for all I know.) And what if it is really everybody? What if nobody can really "stomach" gluten?

I am diagnosed, and have the DQ6 and 7 genes. When my parents saw my results and understood that meant they each had a gene too, they went gluten free to see what would happen. There were noticible positive results in one week for both of them. After about a month of being gluten-free they ate some tempting home made rolls and they both got very sick. Those will be their last gluten rolls. Are they celiac? Are they just "sensitive"? And does it really matter?

What if human beings made a tremendously collossal blunder when we decided we could eat wheat (and the BRO too)? And then to go and set up a whole culture based on wheat! It does make you want to write Oprah or the New York Times.

But notice what happens to people who try to point out discoveries of this scale. If they are doctors they get drummed out of the medical profession at worst or laughed at (in the best case). Remember the poor guy who discoved that ulcers are caused by H. Pylori? They practically stripped him of his medical license. There are whole lists of people who were ridiculed for being right. So Ali B and gfp (I always think of you as the gluten free prince) you are in very good and quite distinguished company.

And there it is lying in plain sight. Wheat-eating societies are getting sicker and sicker... cancer, diabetes, autoimmune problems up the wazoo..... and the cultures that convert to a wheat based diet? Well....

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This makes sense to me. I did have a negative celiac panel test. I have a little sister that was diagnosed as a celiac at a year old. She went down to Florida to visit my Mom. She noticed that my Mom had bad gas and told her that it smelled like celiac. This was after toast for breakfast and a sandwich for lunch. I also wonder about my father, he was immediately in the bathroom after he ate. I did have a couple biopsies because I had horrible itching. One came back eczema and the second was spongiotic dermatitis (they don't know what it is). This is what brought me to this site. I really think it was DH. I can remember many itchy bouts in my lifetime. I went gluten free January 1, 2007. In a matter of a few weeks, I had symptoms disappear that I had complained about for years. I did notice if I got gluten when I was in the learning stages that I reacted quicker.

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I think lots of people are gluten intolerant, but not necessarily Celiac. That's just my opinion. I tend to not be so convinced about so many people having celiac because I was TEXTBOOK (I screamed Celiac) but I did NOT get better on the diet. I'm still on a strict gluten free diet, and I still get very sick from gluten, so I have no plans on eating it any time soon.

But for me, gluten intolerance might be caused by Lyme Disease and other infections that come along with Lyme. Maybe if the diet had worked miracles I'd be more convinced.

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The acid test comes to - whether those who are gluten intolerant can ever eat gluten again. How do you quantify that? If some who are Celiac never display obvious symptoms whether they eat it or not, until it finally rears its ugly head - how can you tell?

There are many out there who display 'textbook' symptoms. Some of them may get picked up. My Mum did but she never was. My Dad did, but he never was. If they can't even diagnose those with 'textbook' symptoms how are they ever going to pick up those who don't display them, or don't display any?

The 'gold standard' test looks for gut damage. But we all know there are thousands out there who never display any gut or stomach symptoms. The only test that might pick them up is an antibody test. Again, if at that time they are not reacting enough to produce antibodies yet, under the current process they will not be picked up.

Certain symptoms are listed as 'textbook'. But what if the textbook is wrong? The diagnosis of so many children is being missed because they don't fit the 'textbook' symptoms. The longer their diagnosis is delayed, the more likelihood that certain health issues will never be redeemable.

The problem with having a textbook is that it puts blinkers on the viewer. That is the unique thing about Celiac. There are NO 'normal' symptoms. The reaction solely depends on the individual and their genetic weaknesses or vulnerability. As I see in my family and many, many others will testify within their own, even siblings can display totally differently to each other.

I emailed Marios Hadjivassiliou who is Consultant Registrar (neurology) at the Royal Hallamshire Hospital in the UK. It was his argument that perhaps the control subjects have Celiac, in his article from 2004. His reply?

"My views remain the same. The presence of enteropathy does no longer define gluten sensitivity which we know can exist without overt bowel abnormalities on histology. The manufacturers of the testing kits are only interested in enteropathy rather than the whole spectrum of gluten sensitivity. Therefore the thresholds are set up at a high level so that they do not have too many so called "false positives", something that may annoy the gastroenterologists. The truth is that these false positives also have gluten sensitivity with other manifestations such as neurological problems or other extraintestinal manifestations".

It comes back to the fact that if the antibody test threshold starts at Zero for non-celiacs and any level is positive then a biopsy becomes totally unnecessary.

I have just started reading 'Dangerous Grains' by Brady and Hoggan. The foreword mentions that over the last few decades it has been noted that gliadins can cause symptoms and diseases in nearly any area of the body, yet not involve the gut at all! Of a list of major auto-immune diseases linked to Celiac the only one that isn't, is Celiac itself! What causes Celiac? Gluten. Could it not then also be responsible for all those other diseases that are linked to Celiac.

I would not hesitate to draw a pretty logical conclusion that at least 80% of people who are visiting a Doctors' surgery at any one time are there because of gluten. If you are one of the few who are not intolerant of it then you are probably one of those very annoying people who lives to 100 without ever having had a days illness in your life!

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I think lots of people are gluten intolerant, but not necessarily Celiac. That's just my opinion. I tend to not be so convinced about so many people having celiac because I was TEXTBOOK (I screamed Celiac) but I did NOT get better on the diet. I'm still on a strict gluten free diet, and I still get very sick from gluten, so I have no plans on eating it any time soon.

But for me, gluten intolerance might be caused by Lyme Disease and other infections that come along with Lyme. Maybe if the diet had worked miracles I'd be more convinced.

If you react to gluten then you are obviously intolerant of it so dropping it was the best thing to do. But if you did not get well on the gluten-free diet then it may be that your gut is still not healing for some reason. Sometimes it is easier to pare your diet right back to basics and avoid anything processed or commercially made and slowly introduce other foods. Many find that once the gut has finally started to heal properly they can often re-introduce the 'antagonists' on an occasional basis without any problem. If you are Celiac, then you obviously can never do that with gluten.

I can see you are already on a very limited diet, but somehow I suspect that the fact you are still reacting to other foods might just indicate that something is interfering with the healing process. It could be Lyme, but it might just be something else. The symptoms do seem to mimic each other.

I thought I was gluten-free but have recently realised that I have been getting gluten from what I thought to be a safe source. Because, until now my immune system was so depressed I did not react as I should and thought I was reacting to something else or it was because my gut was still healing. Now I am reacting properly, and boy do I know it!

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I just posted about my doctor's visit today. The doc told me that they do believe Celiac to be hugely underdiagnosed, simply because it DOES manifest itslef in so many ways. He said many of the people he's diagnosed had no GI symptoms at all, but were severely anemic, had terrible headaches, etc. I would say though, compared to the first guy I went to, he seemed light years ahead. He obviously takes the time to stay ahead, but I'm not so sure that many doctors take the time to do the same.

He took one look at my negative Celiac panel and told me they were worthless, because he knew what to look for. The last dr did not. But many people see that first GI I saw and stick with what he says. It's a shame, because there is so much information that relates Celiac to a whole host of issues, but unless you have "classic, textbook" symptoms, you are left out in the cold. Until the "textbook" changes, this epidemic will remain undiagnosed for many.

It comes back to the fact that if the antibody test threshold starts at Zero for non-celiacs and any level is positive then a biopsy becomes totally unnecessary.

I agree. If the Ttg test is supposed to be specific to Celiac, it would only make sense that ANY number would be indicative of Celiac. It is like we say all the time: either you are pregnant or not. There is no inbetween. I think it should be the same with Celiac. If it's detectable, then you are positive. End of story. Which then leaves people like me: IgA deficient. What to do with me???

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Not ignorant at all!!!!!

http://www.naspghan.org/user-assets/Docume...e_2004_jpgn.pdf

"In individuals with known selective IgA deficiency and symptoms suggestive of

celiac disease, testing with TTG IgG is recommended."

Also: http://www.celiacdiseasecenter.columbia.ed...C05-Testing.htm

"Alternatively, one may screen with IgG anti- EMA or IgG anti-tTG, though these are not widely available."

And: http://www.questdiagnostics.com/hcp/topics....html?gastroent

"tTG Antibody, IgG-performed (at additional charge) when total IgA is low"

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If the Ttg test is supposed to be specific to Celiac, it would only make sense that ANY number would be indicative of Celiac. It is like we say all the time: either you are pregnant or not. There is no inbetween

Actually tTG is not 100% specific for Celiac.....other conditions can cause tTG to be positive.

I had negative bloodwork, negative biopsy (textbook perfect villi) and I do not have Celiac genes. I did have a ton of symptoms which could be linked to Celiac/Gluten Intolerance...including very bad malabsorption, bloating, and significant weight loss....however, my neurological symptoms were far more worrisome.

Enterolab results were positive across the board....including tTG. The malabsorption score was very high.

I did feel better as I started the diet but at the same time I was trading processed foods for whole foods. Even though there was some improvement (most likely because I'd eliminated so many chemicals from my diet) my problems did not resolve.

I was gluten free for nearly 3 years without significant improvement and still suffering numerous food intolerances.

I was diagnosed with other conditions and am now getting better little by little. I've been off the gluten-free diet for close to 6 months now with no significant problems....and no increase in symptoms. This does not mean that I can eat *any* gluten containing food.....I still have to avoid preservatives, food colorings, additives, etc.

I'm quite certain that I do not have Celiac....so at least in Enterolab's stool test the tTG is not specific for Celiac. I do know that other autoimmune conditions can cause tTG to be elevated.

I do know that other conditions can cause a person to become intolerant to gluten....not necessarily Celiac and not necessarily requiring a life-long gluten-free diet.

I tend to not be so convinced about so many people having celiac because I was TEXTBOOK (I screamed Celiac) but I did NOT get better on the diet.

I tend to agree with this. My experience was similar and personally, I dont think that everyone who reacts to gluten has Celiac...its a genetic autoimmune disease which requires a trigger. Even if 1 in 3 carried a Celiac gene its not likely that every person will have their gene triggered.

The incidence of non-celiac gluten intolerance is far greater...and this can be caused by other factors/conditions occuring in the body.

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My doctor actually ordered the celiac disease blood panel for my youngest daughter two and a half years ago. Government insurance won't pay for it (the idiots), so we had to pay $130.00 for it. They called and told me it was negative. I asked for number, and they said they didn't have them.

My daughter refused to try the gluten-free diet, because she said it was negative, so it was now proven that she didn't have a problem with gluten, end of story. I knew that wasn't true, but you can't force a fifteen year old teenager to stop eating gluten outside the house, even if you won't give her gluten at home.

A year later I had her tested by Enterolab, and of course she tested positive, and actually had pretty bad malabsorption.

When I talked to the nurse at the doctor's office again a few months ago, I asked if they could please somehow get the exact numbers for Susie's tests, and she told me they had been there all along! I was mad, as you can imagine.

One of the numbers was a 9, with a 10 being positive. That is awfully close to being positive! In fact, that would have been enough evidence for me to insist on a biopsy if I would have known.

She is so much healthier now that she is off gluten. She is getting excellent marks in school, while before she went gluten-free she was failing every subject for a year and a half. She couldn't retain anything she learned (brain fog from gluten very likely).

And she stopped having diarrhea and stomach cramps as well as headaches.

I believe the kid has celiac disease, period. And so do her four siblings and almost all their children. And so do my six brothers and my sister, and quite a few of their children. In fact, one of my nieces was actually officially diagnosed at the age of eight, after being unwell all her life until then. Her mother and her dad (my brother) are both on the gluten-free diet as well, and it is obvious both of them have celiac disease, too.

I am positive that my mother died of celiac disease, (liver cancer), as did her mother (stomach cancer). And my dad had stomach issues all his life as well, and he died of liver cancer eleven years after my mother (and no, neither one of them drank any alcohol).

So, looking at my family, I think that just about everybody has celiac disease. And I see so many people with it, and NOBODY is listening!

A friend of mine is losing all her hair (she is a little younger than me). One of her sons has schizophrenia, and her four other sons are very weird. Her husband has terrible stomach problems. He has skinny legs, no bum and a huge belly. I explained to her that every one of them has symptoms of celiac disease. She sort of listens, but then it is too much trouble to try the gluten-free diet to see if it makes a difference. Or to get tested.

It is very frustrating.

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AliB thanks for those great posts.

Rachel, I feel that with all your health issues that eating gluten is going to lower your immune system. You may not think that you have any symptoms now, but wait, six months is not a long time - & the longer you keep giving your body a little gluten here & there the sooner the "cup is going to run over".

& also if you are younger you might be able to fight off the outward symptoms better - but you know you also cannot feel cancer if you get it...

I can say this because I have been there & done that - when I did not know any better I was wheat light for 10 years thinking I had an allergy & yes I have been allergic to barley & oats since I was 25 - I am now 61, & I could not eat any bought wheaty things because everything has barley in it. So I cooked wheaty chemical free things at home for all those years... Did it help - NO - I have health problems & handicaps that will never be healed - when something happens you cannot go back... think about it, if you can hear with both ears, see with both eyes, walk with both legs & think with all of your brain - I would not be risking any of that by eating gluten. Just think about what you could live without the easiest the loss of part of your abilities or gluten.

I mean, OMG even Oprah (at 50YO) is gluten-free now & meat free & caffeine free & alcohol free...

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