Celiac Testing

[Rachel--24]

I don't know where you gleaned your understanding that Celiac is an auto-immune disease but as is pointed out in 'Dangerous Grains', of the diseases that ARE linked to it, it is the only one that ISN'T auto-immune. The gluten triggers so-called 'auto-immune' reactions, but it is not an auto-immune disease in itself.

Celiac Disease is considered to be an autoimmune disease....I didnt just pull that out of a hat.

The definition of Autoimmunity:

Autoimmunity is the failure of an organism to recognize its own constituent parts (down to the sub-molecular levels) as self, which results in an immune response against its own cells and tissues. Any disease that results from such an aberrant immune response is termed an autoimmune disease. Prominent examples include Coeliac disease, diabetes mellitus type 1 (IDDM), systemic lupus erythematosus (SLE), Sj

[Rachel--24]

Perhaps in your case it didn't work and you feel confident enough to assume that you do not have Celiac, and that is fine, but there are an awful lot of people out there who do not have the benefit of your mental clarity or ability to do research and gather enough understanding.

I understand that very well because at one point I was one of those people without the ability or the mental clarity to help myself....and I'm thankful for what I was able to learn from people on sites such as this one.

Now I would like to pay-it-forward. Some people will appreciate the info....and others will not. Its here for those who are interested.

That is dangerous. We already know that a huge section of those with Celiac are being missed - that it takes an average of 11 years for people to get a diagnosis, and that many people are dropping dead every day undoubtedly due to undetected and undiagnosed Celiac Disease.

It takes an average of 11 years to get diagnosed...not because the tests are completely useless...but because the doctors are not ordering them. Thats why it takes so long for some people to be diagnosed. This disease was never mentioned to me by any Dr. while I was presenting with weight loss and complaining of multiple symptoms and "reactions" to foods. It was never mentioned when I complained of "floating stool" and malabsorption issues.

Its the same story you hear over and over on this board...the Dr.'s arent considering Celiac Disease and they arent running the tests. I heard of Celiac from a friend and I was the one who requested the tests...and I was the first patient my doctor had ever tested! He told me that Celiac Disease is on their top 10 list of diseases which are "missed". Well....yeah...of course you are going to miss it if you arent actually testing anyone for it. Duh!

So again, I dont feel that its the tests that are the problem as much as the doctors just not being aware.

But following a gluten-free diet, even for life, is not the worst thing that can happen to us! Saying that people don't need to be on it if they are not Celiac is like the Doctors saying "it's too restrictive" or "you can't be vegetarian because you can't eat meat". People have the right to eat the foods they choose or that their body dictates.

My point is not whether or not someone should follow the diet....its obviously a personal choice. Personally, I feel that the majority of people with these ongoing problems *should* reamin gluten-free until they can resolve their issues and until they can determine whether or not gluten is a major factor.

What I think is dangerous is to blame every problem on gluten in the absence of positive tests. There is no harm in the diet itself (its healthier!)....the harm is in making the assumption that everything going on is caused by gluten intolerance....when in fact it is often more complicated than that. I dont agree that we should assume everyone has Celiac as you've mentioned in previous posts.

In my opinion there is good reason for having the tests done...because often people are wondering why they havent recovered after they have been on this diet for awhile. I see lots of recommendations that we need to wait at least 2 years to see if things improve. If the tests arent indicating Celiac Disease and there are ongoing problems I think its not wise to "wait"...if the body is communicating that something is wrong (symptoms) then it might be important to find out what that *something* may be.

If it is true that 35% of the population carry the genetic markers then it is quite logical to assume that they all, at some point, could potentially go through a situation in their life that would trigger Celiac out of hiding.

Yes...its true that anyone carrying the genetic marker can have this disease triggered at any time. However, most people do not develop the disease despite having the genetic markers.

We can assume that *every* one of these people does have Celiac....we can say that the tests just arent good enough to identify them....however, I dont feel that its very realistic. We all have genetic predispositions for certain conditions....autoimmune or otherwise....it doesnt mean that we are going to develop everything that we may be predisposed to.

[ShayFL]

If you look at all of the major diseases, you can find a laundry list of "possible symptoms" related to each disease and they ALL overlap each other!! My theory is that there are MANY things that can go wrong with these bodies, but there are a finite number of possible symptoms. I saw a cartoon the other day that showed a doctor and a patient and the doctor said, "Ms. Smith, you have come up with a symptom that doesnt exist."

My point is, that whenever you have a disease, it is easy to correlate your symptoms to that disease, especially if you get better with treatment (whatever that treatment is). Then you start looking around you at your friends and family and you think....I wonder if they have the same disease I do??? They have some of the same symptoms or other symptoms related to (fill in the blank disease). When in fact there are a thousand other diseases that will have those same symptoms. This is natural.

When I first got Dx Hypothyroid, I joined "Stopthethyroidmadness" and they all believed everything wrong in their lives related to thyroid. In a year there, I never saw one mention of Celiac or gluten. And research supports very strongly a link between thyroid disease and Celiac. But they were focused on one disease process. And Celiac is also "one disease process". Their is very likely to be a "tier" above Celiac that leads to disfunctional bodies.

We are always learning........

[Rachel--24]

My point is, that whenever you have a disease, it is easy to correlate your symptoms to that disease, especially if you get better with treatment (whatever that treatment is). Then you start looking around you at your friends and family and you think....I wonder if they have the same disease I do??? They have some of the same symptoms or other symptoms related to (fill in the blank disease). When in fact there are a thousand other diseases that will have those same symptoms. This is natural.

When I first got Dx Hypothyroid, I joined "Stopthethyroidmadness" and they all believed everything wrong in their lives related to thyroid. In a year there, I never saw one mention of Celiac or gluten. And research supports very strongly a link between thyroid disease and Celiac. But they were focused on one disease process. And Celiac is also "one disease process". Their is very likely to be a "tier" above Celiac that leads to disfunctional bodies.

We are always learning........

I agree with everything you posted. I've said it many times and I'll say it again, I think one of the biggest mistakes some of us can make is to focus ALL of our attention on *one* condition....and to blame every symptom on that one condition.

Our bodies are all very unique and MANY different things can go wrong. Often I will see someone post something like "I have symptom A and symptom B....does this mean I have Celiac?" Next you will find responses assuring that person that they most likely DO have Celiac....nevermind the fact that 100 other conditions could cause those same symptoms.

This is why testing can be very important in making that determination.

We are all capable of focusing on the one thing that we might know alot about...or have personal experience with. I have to constantly remind myself not to get into that "tunnel vision" type of thinking....and it is very natural to do this.

In figuring out my own problems its been important for me to keep an open mind as there are SO many possibilities. Testing has been the most important part of the process.

Dietary changes have been an important part of my recovery process as well but to determine underlying problems testing has been 100% necessary. Had ALL of my problems resolved on the gluten-free diet....obviously I would not need additional testing.

When I was dx'd with Graves Disease and joined a thyroid board...of course ALL of my problems were related to my thyroid condition. Later, when I joined a candida board...everything was caused by yeast. If you go to a Lyme Disease board....all of your symptoms are most likely caused by lyme. Its no different on this board....its easy to look all around us and to believe that every person is being affected by gluten. I was guilty of this myself at one time.

As you mentioned....every one of these conditions (plus so many more) have overlapping symptoms. I think if we get stuck in the mindset that everything is caused by one disease...we may miss some opportunities to improve our own health and we may also miss an opportunity to help someone else.

As you said..."We are always learning".

[AliB]

Yes, but..................

What I see is self-help groups and discussion groups and support groups, et al, for all these different diseases. They are all completely focused on their 'own' disease, like this one is for Celiac, and few of them, if any are looking at the 'wider' picture.

The difference is, that it is increasingly appearing apparent that there may well be a link between many of them. So, some people have thyroid disease, some have diabetes, some have MS, etc, etc. Ok, maybe they aren't all due to the same thing, but why are so many people finding remission and relief from their physical and mental problems when they adopt a gluten-free diet?

How come Roger MacDougall put his MS into complete remission way back in the 50's by adopting a gluten and dairy-free diet? How come Dr William Kelly cured his Pancreatic Cancer by adopting a gluten and dairy-free diet? How come many hundreds of people are gaining relief from their illness and disease by adopting a gluten-free diet?

I am not saying for one minute that they are all Celiac. But gluten is a huge problem for a huge percentage of the population. Ok, say Celiac IS only 1 in 100, but the other presumably N-CGS people - the number of which is a totally unknown factor must at least make up to that 35% if not a considerable lot more.

We are only a very small bit of the Celiac and NCGS community. There are thousands, nay, millions out there. Many who have gained that relief have gone off to enjoy their lives. There are a few generous souls who are here to help those who are still floundering and having problems, but sadly, as I have seen from other sites and topics, once they are better, apart from an occasional word, if we are fortunate, they no longer contribute.

Yes, there are some who have not gained the benefit they hoped for, for whatever reason, but there are thousands who have. In any case, do we really want to hear from those who have recovered and are well when we are still feeling so crap?

Back to the Auto-immune 'thing'. I still beg to differ on that one.

Autoimmune disease: An illness that occurs when the body tissues are attacked by its own immune system.

The American Celiac Disease Alliance states that "Celiac disease has been known by many different names in the medical literature over the years, including gluten-sensitive enteropathy and celiac sprue (to differentiate it from tropical sprue). CELIAC DISEASE can be defined as a permanent intolerance to the gliadin fraction of wheat protein and related alcohol-soluble proteins (called prolamines) found in rye and barley. CELIAC DISEASE occurs in genetically susceptible individuals who eat these proteins, leading to an autoimmune disease, where the body

[Rachel--24]

Whatever certain 'so-called' experts say, it is not an auto-immune disease in its own right. Unlike many other diseases it does not have an unknown cause. The body is not attacking itself, it is attacking the gliadin and glutenin, wherever it may be within the body and the body gets damaged as a result. Remove the gluten and the immune system calms down.

Well, I suppose we can make up our rules as we go along...we can say 1 out of 3 has Celiac even without positive test results, we can say that gluten is the main reason for most people's ailments and we can NOW say that Celiac is not an autoimmune disease...despite all of the evidence that it is autoimmune....and despite what every Celiac expert in the nation has to say.

We can say whatever we want....but it doesnt make it so.

The immune system does not launch attack on "self" for no good reason. In every case of autoimmunity *something* is triggering the immune system to launch an attack which results in damage to "self". For example there is evidence that links cows milk to the onset of Type 1 diabetes. Toxins, viruses, bacteria, fungi, parasties heavy metals....all of these things have been linked to autoimmunity.

We may not know what the trigger is in every case where the body is launching an attack...but there definately is a trigger. The body just doesnt attack itself without reason....*something* is triggering that response from the immune system.

So just because we know that gluten is what is causing the immune response in Celiac...that somehow means that its not an autoimmune disease?? Sorry, but its really not any different from other autoimmune diseases.....something provokes the immune system in every case. If cow's milk is responsible for antibody production in Type 1 Diabetes...does this now mean that we should no longer consider Type 1 Diabetes as an autoimmune disease??

Did my Graves Disease just develop for no reason?? No...it did not...something triggered it. Both mercury and copper have been associated with Graves Disease....and I'm sure there are other "culprits" which we dont know about.

In most autoimmune diseases the cause of antibody formation is unknown.....but this does not mean that there isn't a cause...because there IS....we just dont know what they are.

As ShayFL said..."We are always learning"

but why are so many people finding remission and relief from their physical and mental problems when they adopt a gluten-free diet?

Because unfortunately, leaky gut is a MAJOR problem nowadays. A healthy gut is crucial in maintaining good health. Once we damage that environment and once the integrity of the intestinal lining has become compromised we lose our health. Gluten may not even have a role in it from the start...however, once its able to pass through the gut it can cause major problems...which is why so many who have gut issues do MUCH better on a gluten-free and casein free diet.

Those two food proteins are the most problematic when they pass through the gut undigested. Incompletely digested peptides from gluten and casein have demonstrated opiate or "morphine-like" activity in the CNS. Naturally people will experience relief of symptoms by removing them. Also, some people who adopt the diet TRUELLY do have Celiac Disease....and obviously they will improve by removing the gluten.

I use Autism as an example because this is where most of the research is....and remember that the vast majority of these kids show remarkable improvements while on the diet. However, most of them do not have Celiac Disease...nor is the autism itself caused by gluten.

Another popular intervention for autism is the gluten-/casein-free diet. Thousands of parents throughout the world have placed their children on this restricted diet and have observed dramatic improvements. As a result, many recipes have been published in specialized cook-books, newsletters, and on the Internet.

Leaky gut:

Many autistic individuals have permeable intestinal tracts, and this is often referred to as

[Rachel--24]

Maybe, just maybe, these parts of the body get damaged as a result of the body attacking gluten. It is where the gluten travels within each of us that the immune system is attacking. So mine ends up in my pancreas, my daughters ends up in her brain, my husbands ends up in his joints.

Gluten doesnt just "travel" around the body and get into the brain....or the joints...or the thyroid....or anywhere else...UNLESS the gut is leaky. Increased permeability...the "gateway" for autoimmunity.

If gluten is CAUSING the leaky gut....then the "cure" is pretty darn simple. Just remove gluten and the gut is no longer leaky...right?? Unfortunately, its not usually that easy....and thats because the gut can be leaky for reasons *other* than gluten.

[AliB]

Yes it is about the fact that we are all exposed to the same things, well, in certain parts of the earth we are, anyway. But our individual reaction depends on our individual genetic weakness or vulnerability.

Taking gluten away does not necessarily remove the leaky gut, but it does remove the gluten antagonist. So problems that were occurring due to the gluten, such as brain-fog, migraines, joint pains, whatever, will improve.

As I said before, there are other antagonists, and if those are a problem, unless they are removed too, then the leaky gut will not resolve, but if the problem is due to gluten, it will. Unfortunately, when it comes to our health we want it sorted yesterday, but sometimes it can take years to repair the damage whatever the cause. It has undoubtedly taken years to get to the state it is in at the time, and will not repair overnight.

It is said that the villi replace themselves every 3 days. Yes, but that is only a part of the gut lining. The permeability can take a lot longer to rectify.

I think we both have a very different view of 'experts' and their so-called expertise - the only 'experts' I have known have done a lot of damage to me and mine so please forgive me if I don't see them the way you do. I have a close friend visiting at the moment who has been tested for Celiac. She is absolutely classic. Raging Rheumatoid Arthritis, Sjogrens, terribly continuously bloated like she is 8 months pregnant, poor brain function and memory, reflux so bad she almost died one night when she inhaled bile from her stomach.

She's had the blood tests. First the doctor said she is a 'maybe'. Then he changed his mind and said that she isn't. So that is that. Unless she herself pushes for further tests, as far as her doctor is concerned she is not Celiac, full stop. Meanwhile she continues to take a whole carrier bag full of tablets just to exist, any one of which could kill her, like the evil Methotrexate. The 'experts' had years to figure it out, and plenty of signs to tell them yet missed my Mum's Celiac and she died because of it. So please don't tell me how wonderful the experts are and that because they ALL say it's auto-immune, it must be.

When they ALL start picking up 100% Celiac instead of just 2% is when I might start to believe them. Sadly ALL the experts have the wrong understanding of Celiac and it is only, as is the case with so many of these things, the few lone voices crying in the wilderness, who are the few who really understand. If the true experts were in the majority instead of the minority Doctors would be actively looking for it, but they aren't.

My own Doctor recognises that I know more about this than she does, yet she is supposed to be the expert, and she is only supporting me because I am pushing for it! I believe there is only one true expert that will shortly sort it all out. Man knows nothing - he only thinks he knows everything............

This is my last post on this subject, my opinions (and that is all they are) are contradicted and counteracted at every turn and I do not have the time or inclination to argue in the face of such superior knowledge and understanding.

[Rachel--24]

But our individual reaction depends on our individual genetic weakness or vulnerability.

Taking gluten away does not necessarily remove the leaky gut, but it does remove the gluten antagonist. So problems that were occurring due to the gluten, such as brain-fog, migraines, joint pains, whatever, will improve.

As I said before, there are other antagonists, and if those are a problem, unless they are removed too, then the leaky gut will not resolve, but if the problem is due to gluten, it will.

Well this is the same thing that I've been posting all along....so it seems that we are on the same page here. I dont see how your statement differs from anything that I've said in my previous posts.

When the gut is leaky, gluten becomes a huge antagonist. Its also one which would be constantly passing through the gut....due to the high prevelence of wheat in our food supply....so we're not talking about small exposures. Its the same with casein.

And yes...if gluten is the cause of the problem then removing it will resolve symptoms and healing will begin.

The body does not repair itself overnight but it also doesnt take years. Healing can take place in a reasonable amount of time and it very often does. There are biopsy proven Celiacs with total destruction of villi who make a full recovery in a reasonable time. They may have been undiagnosed for decades but the healing process is not nearly as long once the main problem has been addressed....and in the case of Celiac that means removing gluten from the diet.

Once gluten is removed healing can begin and it is continuous....so long as nothing else is interfering with that process. Our bodies are very capable of healing when nothing is standing in the way of that. Obviously if you have ongoing infections (or some other undiagnosed condition) then healing can take forever...because the inflammation is still present in the gut and until that situation is addressed healing cannot take place.

By the way....one of my previous Dr.'s told me that in all the years he's been treating gluten intolerant patients for leaky gut....the ones who are not healing (after the diet) *always* have some type of gut infection which is preventing healing. He looks for those infections and he finds them in every case when the patient is not resolving their problems from the removal of gluten alone.

I think we both have a very different view of 'experts' and their so-called expertise - the only 'experts' I have known have done a lot of damage to me and mine so please forgive me if I don't see them the way you do. I have a close friend visiting at the moment who has been tested for Celiac. She is absolutely classic. Raging Rheumatoid Arthritis, Sjogrens, terribly continuously bloated like she is 8 months pregnant, poor brain function and memory, reflux so bad she almost died one night when she inhaled bile from her stomach.

Ok...this could easily have been me 4 years ago. Absolutely "classic"....raging Fibro. symptoms, Graves Disease, constipated and bloated like I'm 8 months pregnant, VERY poor brain function and memory, 25 lb. weight loss, malabsorption, migraines, gassy, joint pain, etc. etc. Reflux was only an occassional (and not very bothersome) symptom for me....but I had too many others to list here.

Anyways...the Dr's said I didnt have Celiac!

Can you believe it...they were actually RIGHT about this!

I have to admit that these Dr.'s were pretty horrible....it was definately a nightmare for me dealing with some of the worst Dr.'s imagineable. The fact that in 3 years I'd seen up to 50 different Dr.'s and about 47 of them were complete idiots was wearing me down...and I was actually getting much worse just from the stress of it all.

I am truelly sorry that all of your experiences have been bad but certainly *most* of us have been down that same road and have felt the same feelings towards the doctors. I did plenty of "venting" about my experiences in my earlier posts (3 years back)....I had alot of anger but thankfully, I've now been able to put that behind me (for the most part).

When I say "experts" I'm not speaking of the doctors who are out there not even knowing how to order a celiac panel, or how to interpret the results, or the ones who think that a person having Celiac has to "appear" malnourished, or the ones who say its OK to start the diet before the tests are run...etc. etc.

I'm not talking about your friend's doctor, or yours, or the clueless ones that I was seeing when I first became ill. I'm talking about the well known Dr.'s in this country who have researched this disease for many years. The ones who are seeing patients with Celiac Disease on a daily basis. The ones who have written books on Celiac.

I'm quite sure that most people on this board will know more about Celiac than their own Dr. will. I dont even have this disease and I know more about it then any of the Dr.'s I've seen.

In my opinion the experts are few and far between...BUT the few experts that we do have in this country are all in agreement that this disease is autoimmune. So that was my point. I cant see any logical reason to even consider that its not an autoimmune condition. It is an autoimmune disease which can potentially lead to a situation of leaky gut....which in turn "opens the gates" for an even higher risk of autoimmunity in other areas of the body.

For every disease there are people out there who have an extensive amount of knowledge on that particular disease....and who have studied that disease/condition for many years. So even if you have never met someone who is an "expert" on Celiac Disease....it does not mean that there arent some people out there who truelly DO have an understanding of this disease.

Again, I'm sorry for your bad experiences....and like I've said....I can relate to all of it. However, now that I've moved past all of that I am able to see that there really ARE some wonderful doctors out there. There are doctors who KNOW their stuff (whatever their expertise may be). There are doctors that I can LEARN from. There are doctors who will do everything in their power to HELP a person recover. There are doctors who CARE.

Unfortunately they dont always find us....sometimes we need to find them.

Also, if I had spent all of my time trying to prove that I have Celiac to a GI doctor...I wouldn't have gotten very far in these last few years. If I dont have the disease....theres not much else that can be done about it. In the end it doesnt matter how "classic" the symptoms may appear to be....if its not Celiac...then its something else.

The BEST part about Celiac Disease is that unlike every other disease...Celiac is easily treated with a diet change....no drugs, no surgery...just a diet change. You dont need a Dr. to diagnose Celiac in order to treat this disease. Anyone can go gluten-free and at any time. If you are 100% certain its Celiac and the Dr.'s wont agree...you dont need their permission to begin this diet. You can get on the diet and see where it takes you.

If I had experienced a complete resolution of symptoms and complete healing while on the diet I would have had no problem considering myself Celiac...regardless of the test results. Its really all about regaining our health. If health problems persist while on the diet and the tests dont indicate Celiac Disease...then chances are its not Celiac.