Just Got Diagnosed With Fibromyalgia

[jerseyangel]

Mike,

How can you say that with very few exceptions, food intolerance does not exist? As someone who is intolerant to several foods, I have to disagree.

I went on an elimination diet, suggested by my board-certified Allergist-Immunologist who told me that this was the best way to figure out food intolerance. He told me that he, himself, had intolerances to certain foods. This was after a full array of skin-prick allergy testing.

How would you explain that in the 9 months that I drank water filtered through a coconut hull water filter, I was sick every day with low level abdominal cramping and frequent nausea, and when I stopped, the symptoms abated in a day or so? Or the fact that legumes--even string beans, cause loose stools, indigestion and abdominal pain? I get gluten-like reactions from corn as well as all other grains that I've tried. Would you say that this is all in my head? Or do you have another explanation? If so, I'd really like to hear it--this has affected my life in a very negative way.

I ate all of these foods until about 5-6 months after I started the gluten-free diet. There has to be a connection.

[Mtndog]

I'm confused here. You talk about food allergies and intolerances but what you fail to discuss is that celiac sprue is not the same as a lactose intolerance, or a nightshade intolerance. It is an AUTOIMMUNE DISORDER. There's a BIG difference. If I were lactose intolerant, I could take Lactaid. If I did happen to eat dairy and have a reaction, it would pass and not cause damage.

The point you're missing is that this is an autoimmune disorder. If your gut is being destroyed, you most certainly can lose weight (I lost over 60 pounds). As you are not absorbing nutrients, fat, protein necessary for healthy physical and MENTAL functioning, it is certainly possible to get depressed.

You may want to run this argument by people on this board who are in a wheelchair due to brain damage caused by gluten ataxia.

[Scott Adams]

  Mike1972 said:

Scott,

I've read my own references and please point me to the section of my reference where it says that allergies are assosciated with depression, weight loss or fatigue. I am allergic to peanuts and if I eat them (even in some commercial food preperations which use peanut oil) I get a swollen lip, wheezing and diarrhea. I know that I've eaten peanuts almost immediately. I don't get depression, fatigue, weight loss. These symptoms cannot be caused by food allergies. Most people on this board who claim to be allergic don't complain of any of the symptoms listed in my reference (like angioedema, pruritus, dysphonia, cough, etc.) , but only that they feel "glutened" meaning depressed, confused, fatigued, etc. which are not symptoms of an allergy.

The site you referenced does not provide any scientific studies that back up anything that they claim there. I know first hand that food allergies cause depression (as can food intolerance). My son, for example, gets depressed regularly whenever he discovers, for example, that a birthday cake has nuts in it which he is allergic to. The way you quantify depression is completely missing the point--in my son's case the depression isn't caused by the actual consumption of the offending ingredient, but is instead caused by him seeing other people enjoying themselves while eating the stuff that he can't eat. His symptoms are sometimes true depression, and he's only five. Now let's ask everyone on this board, including you, if they ever get depressed about their dietary situation from time to time. Not eating all the things that they miss, and constantly being asked by even their closest friends if they "would like a piece of cake," forgetting that we can't. Please don't tell me that food allergies or intolerance don't cause depression, because anyone with common sense knows that they do--see my prior references that show that gluten intolerance does cause depression.

  Quote

When I said casein intolerance (casein allergy is a better term) doesn't exist in adults I was wrong. I should've said it's extremely rare in adults. I can see from your reference that casein allergy causes eosinophil and lymphocyte infiltration into the epithelial layer of the mucosa. So where's the damage? Villous atrophy is damage, simple infiltration doesn't equal damage. Eosinophil infiltration is more consistent with a delayed allergic response to IgE.

Casein allergy would produce immediate diarrhea, angioedmea, wheezing, cough, stridor, etc. upon ingestion of milk due to the release of histamine from the IgE response. Once again people who claim to be allergic to casein don't complain of these symptoms.

This isn't true. People with casein intolerance DO complain of these syptoms, plus more that you fail to mention. Many people with autism are now discovering that they see outstanding improvements when they eliminate casein and gluten--why do you think that is? The study of casein intolerance is in its infancy--it is somewhere like where we were 10 years ago with regard to studies on celiac disease. Not only will they discover that it is a lifelong condition, but it is also linked to leaky gut which can cause a huge number of additional problems. I refer to my prior studies posted here--so far you haven't posted any studies that support your position.

  Quote

Another point of confusion is the difference between a food allergy and a food intolerance. A food allergy is caused by IgE, and food intolerances are due to enzymatic defects or food additives. Food intolerances may cause depression. Only a couple of food intolerances exist: lactose intolerance, disaccharidase intolerance (extremely rare), and intolerances due to additives like MSG. There are no other intolerances besides these.

Here's a reference:

Food allergies and food intolerances.Ortolani C, Pastorello EA.

Istituto Allergologico Lombardo, Piazza Monsignor Moneta 1, 20090 Cesano Boscone, Milan, Italy. all@ambrosianacdc.it

You are wrong again. Just off of the top of my head I can think quite a few other food intolerances, such as to gluten, soy, corn or maltose. But don't believe me:

Here is a reference to soy intolerance:

Open Original Shared Link

See the bottom of this page:

Open Original Shared Link

and here you can get testing done for corn intolerance:

Open Original Shared Link

York Labs offers testing for up to 113 different food intolerances:

Open Original Shared Link

The reality is that you can have a food intolerance to almost anything, and you are much better off finding out what food issues you have and not eating them. Most of the people here who have continued problems after going gluten-free actually have additional food intolerance--and they do not have psychological problems.

You are also missing a huge number of other documented symptoms that can occur with food intolerance, such as migraine headaches:

Audit of Food Intolerance Supports York Nutritional Laboratories' Finger-Stick IgG ELISA Test for Relieving Symptoms Associated with Migraines

and these symptoms:

Open Original Shared Link

* Nervousness, tremor

* Sweating

* Palpitations

* Rapid breathing

* Headache, migraine

* Diarrhoea

* Burning sensations on the skin

* Tightness across the face and chest

* Breathing problems - asthma-like symptoms

* Allergy-like reactions.

Please keep studying...

Take care,

Scott

[jerseyangel]

Scott,

Thank you

[Ursa Major]

  "Mike1972" said:

Only a couple of food intolerances exist: lactose intolerance, disaccharidase intolerance (extremely rare), and intolerances due to additives like MSG. There are no other intolerances besides these.

Now that must be one of the most ridiculous, ignorant statements I've ever come across. It seems to me that your 'studying' is very selective, as in only reading what you want to read, to support your own preconceived ideas (and I guess you're in good company, as too many doctors and researchers are guilty of the same thing).

I've had celiac disease and fibromyalgia symptoms all my life. Eliminating gluten was a great first step, as it got rid of most of my gastrointestinal symptoms. But only after eliminating the rest of the lectin family, and all foods high in salicylates, did the awful joint pain, and the terrible generalized pain go away, that I had previously been on codeine for.

If you follow the links in my signature, you'll find out why these foods can be so bad for some people.

The reality is, that you can potentially be intolerant or allergic to anything at all. I've read of kids that are allergic to water!

And by the way, lactose intolerance is actually very common, not rare at all. I know lots of people (including several in my and my husband's extended families) with lactose intolerance.

[Lymetoo]

Ever feel like you're talking to a brick wall??

[Mtndog]

  Lymetoo said:

Ever feel like you're talking to a brick wall??

Tee hee

[Ursa Major]

[CarlaB]

  Lymetoo said:

Ever feel like you're talking to a brick wall??

I have a teenage son, need I say more?

[jerseyangel]

  Lymetoo said:

Ever feel like you're talking to a brick wall??

Good one!

[Canadian Karen]

  Mike1972 said:

The reason I am on this forum is because I've had celiac sprue since the age of 2 and I want to educate other people about the misconceptions regarding celiac.

Mike.

Well, considering you were diagnosed at age 2 and have not suffered years (if not decades) of intestinal damage due to undiagnosed celiac, of course life must be all peachy-kee for you and all is perfectly black and white in the celiac world for you. Perhaps those of us here who are "beyond repair" should be teaching researchers like you about the "misconceptions regarding celiac", because until the medical establishment finally opens their eyes to this epidemic, it will continue to be an uphill fight for us. No wonder it's one the the most underdiagnosed and/or misdiagnosed diseases in North America.

[Mike1972]

  admin said:

You are wrong again. Just off of the top of my head I can think quite a few other food intolerances, such as to gluten, soy, corn or maltose. But don't believe me:

Here is a reference to soy intolerance:

Open Original Shared Link

See the bottom of this page:

Open Original Shared Link

and here you can get testing done for corn intolerance:

Open Original Shared Link

York Labs offers testing for up to 113 different food intolerances:

Open Original Shared Link

The reality is that you can have a food intolerance to almost anything, and you are much better off finding out what food issues you have and not eating them. Most of the people here who have continued problems after going gluten-free actually have additional food intolerance--and they do not have psychological problems.

You are also missing a huge number of other documented symptoms that can occur with food intolerance, such as migraine headaches:

Audit of Food Intolerance Supports York Nutritional Laboratories' Finger-Stick IgG ELISA Test for Relieving Symptoms Associated with Migraines

and these symptoms:

Open Original Shared Link

It's a common misconception that you can be intolerant to anything. You can be allergic to anything, with the classic allergic reaction symptoms, but not intolerant.

Admin wrote: "Symptoms of food intolerance

* Nervousness, tremor

* Sweating

* Palpitations

* Rapid breathing

* Headache, migraine

* Diarrhoea

* Burning sensations on the skin

* Tightness across the face and chest

* Breathing problems - asthma-like symptoms

* Allergy-like reactions."

You do realize that all of these are symptoms of allergy and not intolerance. In fact nervousness and tremor, palpitations, rapid breathing, migraine are all due to release of histamine which causes vasodilation and a drop in blood pressure, which activates the sympathetic nervous system and produces these signs. Burning sensation on the skin, breathing problems are also caused by histamine because histamine activates the pain nerve endings and causes bronchospasms (hence dificulty breathing).

Ursula wrote: " Now that must be one of the most ridiculous, ignorant statements I've ever come across. The reality is, that you can potentially be intolerant or allergic to anything at all. I've read of kids that are allergic to water!"

Care to back up your opinion with scientific facts or articles? Or are you just calling me ignorant because I disagree with you? By the way, you can't be allergic to water because the water molecule is too small to be recognized by the IgE molecule. .

Mike.

[tiredofdoctors]

  admin said:

Hey, just trying to help you become a good doctor, and not another bad one. We need more good ones. Please be a good scientist from now on and provide studies to back up your claims.

Take care,

Scott

Scott: Yes, he is a doctor. However, he is not a PHYSICIAN. His degree is a PhD, not an MD. He cannot diagnose as he has done on many occasions -- he is not licensed to do that. Wanting him to become a good doctor is something that would be good. He is, however, a scientist, a researcher, but NOT a practitioner.

Mike 1972:

Funny that you said that IBS is a psychogenic condition and related it to diarrhea. There's a point to this . . . bear with me.

There are a vast number of Perkinje cells in the cerebellum of the brain. They are also located in the retinas of the eyes. Perkinje cells contain a protein which strongly mimics gliadin, as they rely on gliosis. Antigliadin antibodies mistakenly attack these proteins, causing destruction of the Perkinje Cell. Gluten "sensitivity" "intolerance", whichever you choose to call it, is a very REAL condition.

I have anti-gliadin antibodies. I do NOT have anti-transglutaminase, nor anti-endomysial antibodies. My intestinal villi are beautiful -- pink with no rubor, plump with no damage. On the cellular level, they have NO evidence of damage, nor evidence of Celiac. This was confirmed by biopsy and re-confirmed as I had a Celiac specialist review my biopsy slides.

I had a colonoscopy at that time, as well. Given that the cerebellum controls most aspects of brain coordination, I have developed autonomic dysfunction as a result of the damage to that area of my brain. In addition to a myriad of motor control difficulties, I have multiple areas of autonomic nervous system controlled functions which are impaired, as well. Due to my brain's inability to coordinate intestinal peristalsis I have had chronic, long-term constipation WITHOUT bouts of intermittent diarrhea for over two years. My abdomen is consistently tender to palpation. I do not have "rebound" -- only tenderness throughout course of the large intestine. Stool softeners, laxatives, Zelnorm, dietary changes -- all combined have done nothing to reduce the severity of this condition.

My colonoscopy found that I had polyps (non-cancerous), and inflammation throughout the bowel. Hence, "Irritable Bowel Syndrome". I have difficulty believing, while removing impacted fecal matter, that this is psychogenic. In addition, I have had several psychological evaluations, at my urging, to RULE OUT a psychogenic basis to my conditions.

I appreciate that you have joined the forum to "enlighten" all of us poor, pitiful, uninformed, lacking- intelligence members. You must feel highly superior as you disperse your information here. What I don't appreciate, however, is your highly antagonistic, even arrogant approach as you do so. As I said before, we were doing fine before you got here, and will probably be better off when you leave.

[mouse]

Way to go everyone!!. Wish I could answer Mike 1972 as well as all of you have. Since I cannot, I will say thank you to those that have responded to his remarks.

[Ursa Major]

Mike, yes, water allergy is very real. It is very rare, of course, but exists. It is called aquagenic urticaria. Here are some links to check it out:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Anyway, you can look it up yourself if you aren't satisfied with these. About 11,000 results came up with google on this condition.

[Mtndog]

  tiredofdoctors!!! said:

Scott: Yes, he is a doctor. However, he is not a PHYSICIAN. His degree is a PhD, not an MD. He cannot diagnose as he has done on many occasions -- he is not licensed to do that. Wanting him to become a good doctor is something that would be good. He is, however, a scientist, a researcher, but NOT a practitioner.

Mike 1972:

Funny that you said that IBS is a psychogenic condition and related it to diarrhea. There's a point to this . . . bear with me.

There are a vast number of Perkinje cells in the cerebellum of the brain. They are also located in the retinas of the eyes. Perkinje cells contain a protein which strongly mimics gliadin, as they rely on gliosis. Antigliadin antibodies mistakenly attack these proteins, causing destruction of the Perkinje Cell. Gluten "sensitivity" "intolerance", whichever you choose to call it, is a very REAL condition.

I have anti-gliadin antibodies. I do NOT have anti-transglutaminase, nor anti-endomysial antibodies. My intestinal villi are beautiful -- pink with no rubor, plump with no damage. On the cellular level, they have NO evidence of damage, nor evidence of Celiac. This was confirmed by biopsy and re-confirmed as I had a Celiac specialist review my biopsy slides.

I had a colonoscopy at that time, as well. Given that the cerebellum controls most aspects of brain coordination, I have developed autonomic dysfunction as a result of the damage to that area of my brain. In addition to a myriad of motor control difficulties, I have multiple areas of autonomic nervous system controlled functions which are impaired, as well. Due to my brain's inability to coordinate intestinal peristalsis I have had chronic, long-term constipation WITHOUT bouts of intermittent diarrhea for over two years. My abdomen is consistently tender to palpation. I do not have "rebound" -- only tenderness throughout course of the large intestine. Stool softeners, laxatives, Zelnorm, dietary changes -- all combined have done nothing to reduce the severity of this condition.

My colonoscopy found that I had polyps (non-cancerous), and inflammation throughout the bowel. Hence, "Irritable Bowel Syndrome". I have difficulty believing, while removing impacted fecal matter, that this is psychogenic. In addition, I have had several psychological evaluations, at my urging, to RULE OUT a psychogenic basis to my conditions.

I appreciate that you have joined the forum to "enlighten" all of us poor, pitiful, uninformed, lacking- intelligence members. You must feel highly superior as you disperse your information here. What I don't appreciate, however, is your highly antagonistic, even arrogant approach as you do so. As I said before, we were doing fine before you got here, and will probably be better off when you leave.

Well said Lynne (as always). I too have a PhD (ABD) Mike, but I'm certainly not trying to diagnose people nor telling them that it's all in their heads.

I have also had psychotherapy (years of it in fact) and it was both my PSYCHIATRIST and my THERAPIST who insisted that NONE of this was in mt head.

[Guest nini]

  Mtndog said:

I have also had psychotherapy (years of it in fact) and it was both my PSYCHIATRIST and my THERAPIST who insisted that NONE of this was in mt head.

Me too... my therapists comments were always "Why are you here?" It was obvious to them my issues were physical not "in my head"...

[nikki-uk]

  Canadian Karen said:

Well, considering you were diagnosed at age 2 and have not suffered years (if not decades) of intestinal damage due to undiagnosed celiac, of course life must be all peachy-kee for you and all is perfectly black and white in the celiac world for you. Perhaps those of us here who are "beyond repair" should be teaching researchers like you about the "misconceptions regarding celiac", because until the medical establishment finally opens their eyes to this epidemic, it will continue to be an uphill fight for us. No wonder it's one the the most underdiagnosed and/or misdiagnosed diseases in North America.

Well said Karen!!

Mike,I think you'll find a person dx with celiac disease in their 30's/40's and upwards tend not to recover so well-and are much less likely to ever regain full health compared to the outcome of a child dx'd at the age of 2yrs.

[Scott Adams]

Hello Mike,

I think you've switched to the strategy that if you say it enough times it will be true. Please see below:

  Mike1972 said:

there's a bit of a confusion regarding the terminology used to describe food reactions. If you would have cared to check the reference I provided you would have seen that any immunological response to food is termed an allergy, while any non-immunoligcal is called an intolerance.

Here's another reference: Open Original Shared Link

Soy protein intolerance is immunologicaly mediated with an IgE and a lymphocyte response hence, it's not considered a true intolerance instead it's an allergy. It occurs exculsively in young children by the way. As for corn intolerance, it doesn't exist. The only food intolerances which exist are lactose, fructose (dissacharidase), sorbitol and reactions to food additives like MSG, sulfites, benzoate, etc.

Did you miss the link to scientific testing for food intolerance (IgG testing - not food allergy) for 113 different foods? Food intolerance testing is now offered by many other labs (perhaps not down there in Uraguay, but maybe the labs down there are a bit behind):

Open Original Shared Link.

At that site it also says:

"Research shows that many people, even as many as 40%, will be affected by Food Intolerance or sensitivity at some point in their lives. This can be the cause of many different health problems, ranging in severity and can appear from two hours up to two days after eating particular foods. This is why it is very difficult to identify individual foods.

Below is a list of the most common symptoms that are triggered by Food Intolerance:

* IBS and other gastro-intestinal problems

* Migraines and headaches

* Eczema and other skin conditions

* Rhinitis

* Arthritis

* General lethargy and tiredness "

Your link simply says that the symptoms of food allergy and intolerance can be the same. The numbers mentioned there are totally incorrect "1 percent of adults and 5 percent of children have true food allergies." Heck, more than 1% of adults have true celiac disease, which is gluten intolerance--and I also know that about 12-15% have gluten intolerance or gluten sensitivity, so you are way off. What they really mean there is "only 1 percent of adults and 5 percent of children have been diagnosed with true food allergies."

But the real point here, the one that you seem to have missed completely, is that whether it is food allergy or intolerance--the symptoms appear to be very similar or the same--our sources both seem to agree on that, and people should not be eating foods that they have an intolerance or are allergic to--right Mike?

The other point is that it appears that you've found that place on the Internet where, according to your estimation, that 1-4% of people with additional food issues like to come and exchange information/chat, and it is YOU who are trying to convince people here that they instead have psychological issues and can't possibly have food allergies or intolerance (again--that stinks of what many here have been told by doctors in the past, including myself when I tried to explain to my doctor that my symtoms where consistent with celiac disease--his response was "but only 1 in 5000 people at most have that--you couldn't be one of them!"). Are you also a psychiatrist or psychologist (if not you have no business making such statements)?

Not everyone here has additional issues beyond gluten Mike, but many do and they are sharing information here to help each other--they are not sharing misinformation like you appear to be doing. Please just quit this.

Take care,

Scott

Take care,

Scott

[Scott Adams]

PS - There is evidence that other foods besides gluten will cause flattening of the intestinal villi--this post is from back in 1998, and the studies were limited to children--unfortunately not much follow up research has been done on this important topic:

"There’s a specific note in Michael Marsh’s book about food allergies causing villi damage. That’s the book "On Coeliac Disease", page 155. Table there shows that the Type 3 stage of intestinal response, "flat destructive" does occur with milk, egg, soya and chicken or fish allergies. It differs from the celiac response in that only 1 or 3 of the 5 stages of lesion connected with celiac disease occur with an allergy."

I believe you've heard of Michael Marsh, right? He's the guy that created the criteria called Marsh Lesions that the good GI's now use to document how much damage has been done to the intestines (unfortunately very few GI's actually use these new diagnostic techniques yet--but will).

So you are wrong again when you claim that other foods don't cause flattened villi--because they do and this is backed up by research and one the best and most respected celiac disease researchers around. Read more at:

Will Other Foods Affect the Villi? - by Kemp Randolph

"On Coeliac Disease" by Michael Marsh should have been required reading for someone in your shoes--please pick up a copy.

Also, you may want to learn more about the difference between allergy and intolerance:

Allergy and Intolerance by Lydia S. Boeken M.D.

The important part there is where it describes the methods to diagnose food intolerance, including:

"Another useful test is the IgG(4) antibody test. Here, the presence of IgG(4) antibodies is determined. These antibodies are the slowly occurring variety, which do not appear in the blood until 24 to 48 hours after exposure to an offending food or substance. The reliability of this test varies between 80 and 90%."

As mentioned, you can get tests for at least 114 different foods by York Labs who use the IgG method.

Take care,

Scott

[gf4life]

  Mike1972 said:

there's a bit of a confusion regarding the terminology used to describe food reactions. If you would have cared to check the reference I provided you would have seen that any immunological response to food is termed an allergy, while any non-immunoligcal is called an intolerance.

I agree that there is a lot of confusion regarding the terminology used to describe food reactions. You yourself misquoted Scott (Admin) quite a few posts back when he said that food intolerances can cause symptoms that mimic Celiac and you responded by saying:

  Quote

It's true that some people with celiac sprue have additional associated diseases, especially autoimmune diseases, maybe even food allergies. However food allergies do not cause depression, fatigue, weight loss, or glutening symptoms and they don't mimick celiac disease. Since you asked for a reference here's one: Open Original Shared Link

And the article you quote even talks about food allergies and intolerances as if they are one and the same, as do many of the medical professionals I have come acrossed in my life. Even mentions Celiac Disease and Dermatitis Herpetiformis as a non-IgE cell-mediated hypersensitivity related to celiac disease. Why would it need to be mentioned in a food allergy article anyhow, unless it were somehow related to the whole allergy/intolerance issue. If you are made ill by consuming a food, then who really cares what it is called.

  Mike1972 said:

Soy protein intolerance is immunologicaly mediated with an IgE and a lymphocyte response hence, it's not considered a true intolerance instead it's an allergy. It occurs exculsively in young children by the way.

I have to assume here that you mean the medical condition known as "Soy Protein Intolerance" (even though it is technically an allergy) occurs exclusively in young children, and not that all soy allergies are only found in children, correct? Because I am medically documented as having an IgE mediated soy allergy (found when I was 30) by blood test and have reactions everytime I consume anything with soy protein in it. I do not react to soy lecithin or soybean oils. I call it an allergy, but what you said could easily be misunderstood as meaning that no adults can be allergic to soy...

Also remember that most of us come here for help and support for getting/accepting a diagnosis of Celiac Disease/gluten intolerance, and you will not get very many people willing to be open to someone saying that there is no such thing as gluten intolerance. Modern medicine as we know it is an ever growing, learning and changing process. So what was shown in one study last year might be dispproved tomorrow, or a test might be improved or shown to be invalid, and it goes on... It is very dangerous to go about speaking as if every piece of knowledge you have is an indisputable fact. Medical information changes often and most people on this site are very up to date with current medical information that involves ANY type of reaction to gluten.

[Mtndog]

  Mike1972 said:

Unreliability of IgE/IgG4 antibody testing as a diagnostic tool in food intolerance.Jenkins M, Vickers A.

Royal London Homoeopathic Hospital NHS Trust and Research Council for Complementary Medicine, UK.

BACKGROUND: Some clinicians link chronic disease in certain patients to 'food intolerance'. This is currently diagnosed by exclusion dieting, a time-consuming and tedious technique. It has been claimed that IgE/IgG4 antibody testing is a rapid and valid method of determining food intolerance.

OBJECTIVE: To determine the test/retest reliability of IgE/IgG4 antibody testing as a diagnostic tool.

METHODS: Blinded testing of duplicate blood samples from nine patients with suspected food intolerance was undertaken by tertiary referral centre using the services of a commercial laboratory. The proportions of consistent and inconsistent results for tests of 95 different foods were analysed.

RESULTS: Test/retest reliability was low. Even though the study method systematically overestimated kappa, this value never exceeded 0.51, regardless of the statistical model used. All but one patient had a greater number of inconsistent results than had been prespecified as an unacceptable level of disagreement. In one case, 50 out of 95 test results were inconsistent on retest.

CONCLUSIONS: We found no evidence that IgE/IgG4 antibody testing as performed by this laboratory is a reliable diagnostic tool.

i'm going to put myself out on a statistical limb here (it's been awhile and my stats background is not in the sciences) but the title of the article and the conclusion both say that IgE/IgG4 testing for testing is UNRELIABLE.

Hmmm... let's see. The sample size was 9. That's pretty darn small! Wonder what would have happened if they done their homework and figured out the sample size they needed to have RELIABLE results in this study.

Nine samples for 95 different foods? LOVE TO SEE THE MODELS FOR THAT!

this study falls short of even my low stats expectations.

I don't think that Scott is saying the Mayo Clinic or Beth Israel researchers are biased (althopugh it's possible they are as we researchers must ACKNOWLEDGE OUR BIASES AND WORK TO MOVE PAST THEM). I think what he's saying is that maybe traditional medicine has not quite gotten to the point we need it to be.

The diagnosis rate for Celiac in this country is pitiful. Average time to diagnosis 11 years. In Greece, children are tested as they enter first grade.

My GI is at Beth Israel and she acknowledged that although the "'gold standard" is the biopsy, it doesn't always do the trick. She was able to definitively diagnose me via gene test and positive response to the diet. My previous GI took ONE sample for my biopsy which was not damaged and told me it was "Mind over Matter". Luckily, my "mind" didn't listen to him and i stayed gluten free anywway until I received an official diagnosis over a year later.

RESULTS: the study sytematically overestimated kappa and test/retest reliability was low.

[tiredofdoctors]

Beverly,

Excellent point. You are so right about the research validity. (As always) In my research classes, I was taught the VERY MINIMUM you must have to gain reliable statistical results was 20. I was also taught that even at 20, the results would be considered statistically "borderline" with regard to reliability. One hundred participants was the recommended number.

Alas, my educated (and smart) friend . . . you are right again!

[Matilda]

..

[georgie]

Having had Fibromyalgia and beaten it - can offer some tips. Chinese Acupuncture was great. Did wonders.

Also - get Thyroid checked. TSH, Free T3, Free T4, and Antibodies. Its the Antibodies that link it to Celiac. Autoimmune. And to make matters even harder. 10% of people with Hashimotos Thyroid don't show Thyroid Antibodies anyway.

www.stopthethyroidmadness.com explains how there is probably no modern diseases like CFS or FMS - just badly treated or undx low Thyroid. Mine was.