Doctor Says Celiac Is Not Hereditary

[Babs83]

My sister went to a gastronalogist (sp) yesterday. She had blood tests about a year ago and they came back negative. She is suppose to have a colonostopy and he scheduled it for July 25th (I think), anyway I finally convinced her to ask him about celiac and that she wanted to be tested for it. He told her that the blood tests were about 99 percent accurate and that celiac is not hereditary !! He said he would go ahead with the biopsy since we was going to be doing other tests and that way she wouldn't have to did it later. She was not impressed with him at all; he said something about people doing self diagnoising!! She has so many health problems, anemia, fatty liver, diabetes, low blood platlets, obesity, fatigue the list goes on!! She is very anemic (8.something) he said she didn't have a low iron count, but he would do the blood work; that he thought her bone marrow wasn't making enough blood? She had her bone marrow tested recently; and she was referred to him by a cancer doctor!! I really hate some doctors!!

Thanks for listening

Barb

[blueeyedmanda]

Sorry to hear you did not like the doc, nor can I blame you. He does not seem to have much information on celiac. It is hereditary. Hope all turns out well for you.

[sixtytwo]

You need a new doctor..............it is a proven fact that celiac is hereditary, my granddaughter has it, I carry the gene and my mother just got diagnosed with it at 88. Both my mother and I were blood tested negative the first time. Run, don't walk to a new doctor until you find one that actually knows what is going on in this field.

Barbara

[Karen B.]

You need a new doctor..............it is a proven fact that celiac is hereditary, my granddaughter has it, I carry the gene and my mother just got diagnosed with it at 88. Both my mother and I were blood tested negative the first time. Run, don't walk to a new doctor until you find one that actually knows what is going on in this field.

Barbara

Agreed! Some docs are not up to date on Celiac but the knowledge that it is hereditary is not new news. Either he's not living in this century or the last one or else he's just not paying attention. In either case, I wouldn't want to count on him for my health care.

[gfgypsyqueen]

I have to say...I wouldn't want this doctor doing any kind of testing on me! Anemia he should be knowledgable about. Seriously, cancel the appt and find a new doc!

Maybe there is a local Celiac that could recommend a dr who knows a bit more about Celiacs?? Sounds like your sister needs an extremely knowledgable Gastro and Internist to start narrowing done some of those issues.

[Guhlia]

This doctor is TOTALLY wrong. Not only is it hereditary, but blood tests are NOT 99% accurate AND you can't diagnose Celiac Disease through a biopsy taken from a colonoscopy. They would need to do an endoscopy to take a biopsy for Celiac.

[rinne]

That doctor is an idiot, he should be reported if that is how little he knows.

Imagine the number of people he hasn't helped.

I hope your sister gets some real help, I know what it feels like, I have a sister who is ill and has received dreadful treatment at the hands of doctors.

She was given a diagnosis of IBS over ten years ago and then five years ago her doctor said, by the way you have celiac and so you should avoid wheat. No mention of gluten - rye or barley let alone cross contamination or..... she has gone steadily downhill these past years because she did not understand.

I think a lot of getting well is finding the energy to be proactive which is difficult because once you are ill it is hard to find the energy. I'm glad she has you to support her.

I feel badly for my sister, she lives far away and until I was ill I didn't understand about Celiac, I had only heard about her IBS diagnosis. Once I was ill and found out about Celiac we talked and she understands now but it has been ten years of continuing to consume gluten and she is very ill.

[Babs83]

My sister went to a different Doctor, and yesterday had a endoscopy and a colonostopy. They were thinking that she is bleeding in her colon b/c her blood count is 8.5 and her platelets are around 45,000. I went with her and the doctor said that she didn't look like she had celiac (this doctor was pretty sure that she had celiac) to the eye but he did take a biopsy and they were sending it off. Her colon was fine.

He said that some people just go on the diet and feel better. I wasn't diagnoised but had migraines bad, I just went on the diet and feel so much better that I will neve intentionally eat wheat or gluten again . I just need to covince her to give it a try. She goes back to the doctor for the results in 2 weeks.

[Tripletmomma2000]

Nice. Gotta love it when a doctor doesn't know what he's talking about. I was dx. with Celiac about 2 months ago. My doctor told me to tell my family members to get tested, and that I should have my children tested. So far, I'm the only one who's been diligent, and had my triplets tested. 2/3 of them tested positive after having a celiac panel done.

Karen T.

[Guest Doll]

It's well known that Celiac can run in families. It's not considered "hereditary" in the traditional sense though, since many with the genes for it don't actually get the disease, unlike something like Cystic Fibrosis. The genetic disposition for Celiac is not clean cut. Like in all autoimmune diseases, probably multiple genes are involved. You need to get all of those genes (not just one) to get the disease, and then be exposed to the initial trigger (not gluten).

I have heard that 1 in 20 people with Celiac relatives will also get it. The number may be higher in some families.

I am sorry you did not have a good experience with the doctor. The real issue here that I can see (one of them, and a big one) is her obesity. She needs to get that corrected. Type 2 diabetes (which is caused by obesity) can cause nerve damage to the intestines which resembles the symptoms of IBS/Celiac. This will not go away on the gluten free diet, and can even become life threatening in severe cases. Make sure she loses weight and controls her blood sugars. If a gluten free diet will help her lose weight (even if she checks out negative for Celiac), then that's what she should follow.

Obesity could explain the majority of her issues. Unfortunately, due to junkfood and lack of exercise, obesity is getting more and more common.

[gfpaperdoll]

You only need ONE gene to get celiac or gluten intolerance.

Although I think that if you have two - one from your father & one from your mother that you have worse symptoms...

AND by the way you can only have two at the most, one from each parent. OR just one, from one parent.

[gfpaperdoll]

Doll, would you like for us to recommend some books on celiac for you to read?

I have a bookshelf full, & am waiting on the new book that will be co-authored by Dr Fine & a few others.

[Guest Doll]

You only need ONE gene to get celiac or gluten intolerance.

Although I think that if you have two - one from your father & one from your mother that you have worse symptoms...

AND by the way you can only have two at the most, one from each parent. OR just one, from one parent.

You are not understanding the genetics of Celiac, or any other autoimmune disease. They are what is called "polygenetic disorders". It requires more than an HLA typing (which only can determine if you have a genetic *predisposition* to Celiac). There is NO such thing as "a Celiac gene". Yes, you inherit only one gene from each parent, but there are multiple *sets* of genes involved in diseases. Anyone who claims to diagnose Celiac based solely on a gene test is fooling you and taking your money. This could be one reason why so many people on this board never get better. The word "Celiac" has become a gimmack, and the gluten-free diet a cure all. I know there is a person here who is gluten intolerant (which is not the same thing as Celiac) not due to genetics, but because she has Lyme Disease (which she only recently found out). Please note that my point is that I *don't want people to be sick*. I have no problem with people thinking they have Celiac and being on the diet, but they are not ever going to get to the root of their problems and get their health back if Celiac is not what they have. Any book that makes unproven claims is questionable advice in my book. There have been many doctors who have given "questionable" advice to sell a book (the Atkins, Grapefruit, etc. diet for starters). The rest of the book may be excellent scientific research for those who *actually have* Celiac, but it is wrong to mislead people to think that it applies to majority of the population. A doctor *cannot* say that someone has Celiac because they have a "Celiac gene".

And yes, I will read the whole book now.

Taken from Pub Med:

My NCBI

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All Databases PubMed Nucleotide Protein Genome Structure OMIM PMC Journals Books 1: Eur J Hum Genet. 2007 Jun 6; [Epub ahead of print] Links

A comprehensive screen for SNP associations on chromosome region 5q31-33 in Swedish/Norwegian celiac disease families.Amundsen SS, Adamovic S, Hellqvist A, Nilsson S, Gudj

[gfpaperdoll]

I do not think that anyone says you have celiac because you have a celiac gene - just that the possibility is very great, IMO & a few of the celiac docs.

Basically I believe that no one needs to eat grains or dairy, I think that is about the thinking of Dr. Fine and a few others also. I also like the book "eat Right for your blood type" that author also mentions the dangers of wheat & dairy but not to total exclusion from the diet - I think he has that wrong but he is so right on with most of the issues I face with foods, that I forgive him that little point.

I think that if you have the celiac gene or genes or the gluten intolerance ones and symptoms that you have a "celiac" problem, that does not mean that you might not also have appendicitis or some other condition in addition to celiac. I do not think that anyone believes that to have celiac you do not have other conditions, just that a WHOLE LOT of those other conditions will improve on gluten-free/DF diet.

I think that food is the most powerful medicine that we have, just that we are so ignorant that we do not know how to use it properly. You know you take a human body & feed it junk & the body gets sick - what would you think was causing the problem besides food. It seems a very simple thing to me. You know if you took your car & put syrup in the oil tank & milk in the gas tank, it would seem obvious that when the thing does not run that you have put in the wrong things. I find it very perplexing to think that people do not see this connection to what they put in their mouth & how they feel. I do believe that the American people have bought the whole brainwashing thing from the advertisers of milk and the cereal industry etc. not to mention the fast food places.

[Guest Doll]

I do not think that anyone says you have celiac because you have a celiac gene - just that the possibility is very great, IMO & a few of the celiac docs.

Basically I believe that no one needs to eat grains or dairy, I think that is about the thinking of Dr. Fine and a few others also. I also like the book "eat Right for your blood type" that author also mentions the dangers of wheat & dairy but not to total exclusion from the diet - I think he has that wrong but he is so right on with most of the issues I face with foods, that I forgive him that little point.

I think that if you have the celiac gene or genes or the gluten intolerance ones and symptoms that you have a "celiac" problem, that does not mean that you might not also have appendicitis or some other condition in addition to celiac. I do not think that anyone believes that to have celiac you do not have other conditions, just that a WHOLE LOT of those other conditions will improve on gluten-free/DF diet.

I think that food is the most powerful medicine that we have, just that we are so ignorant that we do not know how to use it properly. You know you take a human body & feed it junk & the body gets sick - what would you think was causing the problem besides food. It seems a very simple thing to me. You know if you took your car & put syrup in the oil tank & milk in the gas tank, it would seem obvious that when the thing does not run that you have put in the wrong things. I find it very perplexing to think that people do not see this connection to what they put in their mouth & how they feel. I do believe that the American people have bought the whole brainwashing thing from the advertisers of milk and the cereal industry etc. not to mention the fast food places.

I agree 100% that people nowadays are shoving crap in their mouth without second thought. People don't think twice about having double portions, processed everything, or giving their kids a pizza pop for lunch. People eat because they're bored, stressed, unhappy, or "hungry". Regardless, people have realize that even if they *feel* hungry, they cannot keep eating for 2 hours straight. That is a choice. Fat itself has now been discovered to secrete its own hormones, which alters many other hormones in the body and contributes to more weight gain. Fat is not inert, it is an organ, and it can also cause excess hunger. So the key is to stop the cycle by losing weight or preventing weight gain in the first place. People on a gluten free diet can gain weight easily if they use replacement products, since gluten-free stuff has tons of carbs and often lacks fibre (unlike gluten containing whole grains). Many of the foods that can prevent weight gain and Type 2 diabetes are off-limits to Celiacs. Also, some people rely a lot on meats to fill the void. If a person with Celiac has nutrient deficiencies, this *may* cause overeating. However, this is easily fixed with supplements.

Note that there are medical reasons why a person can be overweight, such as autoimmune thyroid disease (common in Celiac). However, most people are overweight for seemingly no medical reason.

As for getting back on topic, we really have no "need" to eat meat either. Our bodies produce small amounts of antibodies to *any*thing we eat, since it is foreign. Many people on this board say they also react to corn, rice, etc. So it's hard to say if there is anything we can ingest that won't trigger an immune response. At some point, we'd have to cut out so many foods that we'd be malnourished and sicker than we were to begin with. I can't say at this point that healthy humans without allergies/Celiac/a leaky gut should not consume dairy or gluten (although I agree neither is necessary).

Don't forget that people can be brainwashed by "outside the box"doctors trying to push their own agenda to the masses, too. At some point, many people without Celiac can have positive stool antibodies. There is also no evidence that I am aware of that suggests "gluten intolerance" genes even exist. Is there any proof that there is a genetic basis to "non-Celiac gluten intolerance"? If there is another process as the underlying causes (such as those with Lyme Disease can tell you), then how can we say it is a "genetic" disorder? There are more questions than answers here. I also find it convenient that Dr. Fine states that the majority of people have the genes for "gluten intolerance". There is no proof of that anywhere, and he offers no studies to back this claim. He also fails to specify that Celiac Disease is linked to Type 1 diabetes (less than 5% of diabetics) and *not* Type 2 diabetes. However, since the majority of the population is overweight and often has a Dx of or a relative with Type 2 diabetes (caused usually by obesity and poor diet), they automatically think that their family must have Celiac. Very misleading, and very smart. No doctor ever writes "diabetes" without saying which type. They are 2 different diseases. There are 18 million Type 2 diabetics in the US alone. Very big market.

I am not going to get onto a debate over Type 2 diabetes and gluten. The fact is, most are overweight period, and the vast majority of those people do not have Celiac. If you Google any study on preventing Type 2 diabetes, you will find that a healthy diet, weight loss, and exercise does the trick in many cases. There was no mention of the "healthy diet" being gluten-free. A gluten-free diet may help weight loss, but it is not necessary in a non-Celiac.

There is also no evidence to suggest that being gluten-free will entirely prevent autoimmune diseases. It may (or may not) slow down the process, but it is irresponsible for a doctor to claim prevention with absolutely NO valid study results. How many people or kids with Celiac go on to still get other autoimmune diseases even gluten-free? There's many, I'll tell you.

Just be wary is all I can say. If nothing can be found wrong with you medically, then I would try the diet without shelling out money for Enterolab at this point. Perhaps in time.

P.S. Sorry for threadjacking!

[jmd3]

Barb!

Tell your sister to get away from that dr asap! Look for another, if you are close to a big city it would be well worth your families drive to locate someone new. I say "cut the cord" with that doctor!!!

[gfpaperdoll]

Dr Fine has people like me & my family double DQ1 that have been given a new life via gluten-free & DF.

The problem with some people getting other auto immune diseases is that they have eaten such hugh quantities of gluten for so long that the "problems are already in motion" & it is like trying to stop a flood with a piece of bubble gum. But better to be gluten-free & have a fighting chance against the problems that your body has in the works.

If you have villi damage, you are way far gone...

The medical community can spout studies until they are blue in the face but it is people like me & a lot of others out there that have put 2 & 2 together that do not care a hang about their studies & theories, we are sick of the IBS diagnosis, idiopathic, nervous person & it is all just in your head diagnosis that we are really just laughing at them. Like a friend of mine & her daughter & a friend of theirs that is all gluten-free & DF now & have ditched their many trips to the gastro & are now in much better health & enjoying all the extra money that they have from not spending it at the doctors each week.

It seems you are interested in the obesity aspect... Well I will tell you that I know that some of the the DQ1 people and their neurological problems have a lot of problems with overweight. Don't forget that the tiniest amount of gluten or dairy is addictive & has an opiate effect on the brain. These people do not have a chance if they do not figure it out for themselves, & some of them are so far gone that they "cannot think straight" so I do not blame them for the mess that their bodies are in.

If you are interested in diabetes in relation to celiac their is a lady doctor in Austin, Texas that is trying to get all docs to test their diabetes patients for celiac. I do not remember her name but you could probably google it & find her name...

[Guest Doll]

Dr Fine has people like me & my family double DQ1 that have been given a new life via gluten-free & DF.

The problem with some people getting other auto immune diseases is that they have eaten such hugh quantities of gluten for so long that the "problems are already in motion" & it is like trying to stop a flood with a piece of bubble gum. But better to be gluten-free & have a fighting chance against the problems that your body has in the works.

If you have villi damage, you are way far gone...

The medical community can spout studies until they are blue in the face but it is people like me & a lot of others out there that have put 2 & 2 together that do not care a hang about their studies & theories, we are sick of the IBS diagnosis, idiopathic, nervous person & it is all just in your head diagnosis that we are really just laughing at them. Like a friend of mine & her daughter & a friend of theirs that is all gluten-free & DF now & have ditched their many trips to the gastro & are now in much better health & enjoying all the extra money that they have from not spending it at the doctors each week.

It seems you are interested in the obesity aspect... Well I will tell you that I know that some of the the DQ1 people and their neurological problems have a lot of problems with overweight. Don't forget that the tiniest amount of gluten or dairy is addictive & has an opiate effect on the brain. These people do not have a chance if they do not figure it out for themselves, & some of them are so far gone that they "cannot think straight" so I do not blame them for the mess that their bodies are in.

If you are interested in diabetes in relation to celiac their is a lady doctor in Austin, Texas that is trying to get all docs to test their diabetes patients for celiac. I do not remember her name but you could probably google it & find her name...

Thanks. OK, so let me get this straight...people with DQ1 genes only are thought to have a strong immune response to gluten but not intestinal damage? And they are still at risk for other autoimmune diseases (not necessarily because of gluten)? I would assume not if they don't have the full gene set for most autoimmune diseases. If they don't have the genetic ability to get Celiac, I can't see them ever getting intestinal damage. Forgive me if my questions are stupid, I have always said that I know very little about non-Celiac gluten intolerance. Since DQ1 genes are tied to autoimmunity (although you also need others) this may explain some cases of "Celiac" like reactions. However, I would guess that most of these people would have positive blood antibodies to gliadin, but not EMA antibodies.

From what I understand, non-Celiac gluten intolerance (no Celiac genes) cannot "turn into" "full blown" Celiac. Much like people mistakenly think Type 2 diabetes can "turn into" Type 1 diabetes just because they need to use insulin (impossible, since they are different dieases).

I am glad that many feel better on the diet. I am just the kind of person who needs to see research and science to back things up, so please understand where I am coming from. I was born this way!

I'm not sure how I feel about Dr. Fine's stool testing (I personally think it's a money grab), but I am curious about his other work. Has anything been released that I can read?

[gfpaperdoll]

Dr Fine has a new book in the works. My grandson has failure to thrive & has double DQ1 he is now 11.

I have a friend that has osteoporosis (about 56 YO) & other problems that she did not go into. She is highly educated and a world traveler, she read Dangerous Grains & never took another bite of gluten. She promptly had a biobsy from an excellent doctor as she can afford to get the best & she had a positive biobsy & got a diagnosis of celiac. She then tested thru Enterolab because of my suggestion to find out her genes & if she had a problem with dairy etc. She is also double DQ1 has a problem with dairy & also according to Enterolab a huge problem with malabsorbtion via the fat score, (correlated to the positive biobsy). He gastro is now using enterolab for his other patients. She is also getting her family that lives on several continents tested... she has been gluten-free/DF about a year now. She also goes by the "Eat Right for your Blook type". She is not interested on posting to the internet - she is too busy & she is also not interested in going public to debate something that we all know.

You can read the topics on the Brain Talk Board about Gluten Sensitivity, there are a lot of us DQ1 people that post there & they post all the scientific links etc to back up the info. If we have a real problem we go there, If I just want to chit chat I post here.

I believe that gluten sensitivity is just the beginning of celiac. I know that you and the medical doctors do not see that. I do not see that as my problem, because we have just cut out the medical community because we are not getting any answers from them & have moved on.