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Just Got Diagnosed With Fibromyalgia


mythreesuns

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Judyin Philly Enthusiast

Thanks Scott..again, for stepping in.

I also chose to stay with my Internist of 20 who never thought to test for celiac as I was obese and struggling with my weight and constant 'd' for those years..and every year the 'd' got worse and IBS dx came and then after 5 weeks of not being able to eat, constant water 'd' that kept me house bound he tested for celiac. 16 months on gluten-free diet and help on the board for other food intollerances that have cropped up..I have my life back...and my mental health too, not because I was 'crazy' but mentally confussed by my illness from un dx celiac disease. He tells me I know more about celiac disease than he does and I'm helping him and his PA by sending them info too.

Thanks again.

Judy in philly


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loraleena Contributor

Anyone with "fibromyalgia" needs to also consider Lyme disease. They had my dx wrong all along. Found out I had Lyme, got treated and I'm doing GREAT!

[/quo

What lyme tests did you have. My elisa is always negative, but I know that test is not accurate.

rinne Apprentice

Thanks Lymetoo. :)

The test is the Western Blot for Lyme done through a lab in Palo Alto.

Two friends of mine in Colorado tested positive for Lyme NOT through all the tests that were sent away but by a lab technician in a small town who actually looked at their blood. The current tests which are the ones generally used are done by computerized equipment and if they don't see it, it doesn't exist.

Amy Tan, author of the Joy Luck Club, has Lyme and was tested by all the best doctors and in the end it was her research on the web that led her to Igenex, the lab in Palo Alto, a positive diagnosis and her recovery.

Ursa Major Collaborator
IBS is also called psychogenic diarrhea because between 70% of patients with IBS are healed after taking a placebo (like sugar pills/ gluten free diet).

Mike, are you seriously saying that the gluten-free diet is the equivalent of a placebo? Do you realize how ridiculous this claim is? I've been ill all of my life. After I changed my diet drastically, I am finally getting some relief and I am healing. BUT if I inadvertently get gluten in my diet (not purposely), I find out by getting sick. Meaning, I don't expect to get sick, it happens. Meaning, that obviously your 'placebo effect' argument holds no water at all. Because if you were right, inadvertent exposure to gluten wouldn't effect me at all, since I wouldn't know about it.

So, if a lot of people with IBS get healed by going on a gluten-free diet, that is simply because their diarrhea was caused by a gluten intolerance, not by psychological factors. And for you to insinuate that some of us are just mental cases is quite insulting, to say the least.

By the way, how about letting us know why you're here? Do you have celiac disease, or are you just trying to convince all of us that we need to see a shrink?

Kaycee Collaborator
Mike, are you seriously saying that the gluten-free diet is the equivalent of a placebo? Do you realize how ridiculous this claim is? I've been ill all of my life. After I changed my diet drastically, I am finally getting some relief and I am healing. BUT if I inadvertently get gluten in my diet (not purposely), I find out by getting sick. Meaning, I don't expect to get sick, it happens. Meaning, that obviously your 'placebo effect' argument holds no water at all. Because if you were right, inadvertent exposure to gluten wouldn't effect me at all, since I wouldn't know about it.

Ursula, I totally agree with you. When I eat gluten free, I do not expect to get sick, so when I get a reaction to something I am so totally stunned, because I am not expecting it.

I know in the beginning before being gluten free, I was beginning to wonder if it was just all in my head, and I was sending signals to my intestines to play up. But the minute I went completely gluten free without cheating, it all changed. I was still expecting to get sick, but I did not. So in a way I diagnosed myself. But I panicked as I read that after being gluten free your test results could come back negative. So I rushed down to the doctor about 4 weeks into the diet, but with a few slip ups, as I wasn't totally convinced I had coeliac, and the results came back positive.

Scott I fared a little better than you, my Doctor informed me I was the second he had diagnosed with coeilac, even though I pointed him in the right direction. I am still with him, and like you have said, it pays to educate them, so that they know what to look for.

Now I have a friend who has fibromyaligia, what should I do? Point out that there could be a co-relation between that and coeliac. She already says she does better without eating bread. I just don't want to look like I am trying to bulldoze people into going gluten free.

Catherine

CarlaB Enthusiast

Ha, even if it's all in my head, gluten-free is working!!!! :D It's amazing that my head has the ability to know when a small amount of gluten contaminates what I've been eating even when I don't!

Kaycee Collaborator
Ha, even if it's all in my head, gluten-free is working!!!! :D It's amazing that my head has the ability to know when a small amount of gluten contaminates what I've been eating even when I don't!

Carla, you are funny, but you are right the brain is such an amazing thing, and should never be underestimated.

But in all honesty, I think it is the intestines that has the ability to detect that tiny amount of gluten, and passes that info to the brain. Maybe that is why I am sick today, and my head hurts, a bit like a hungover feeling. Lol, but I did it to myself!

Catherine


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CarlaB Enthusiast
Carla, you are funny, but you are right the brain is such an amazing thing, and should never be underestimated.

But in all honesty, I think it is the intestines that has the ability to detect that tiny amount of gluten, and passes that info to the brain. Maybe that is why I am sick today, and my head hurts, a bit like a hungover feeling. Lol, but I did it to myself!

Catherine

That's how I feel with a glutening, like a very long, intense hangover.

My post was a joke, I guess the brain could make you think you have something you don't, but if you don't know something has gluten, get sick, then find out later it had gluten, then that would disprove the placebo effect. I think your honest assessment is right on the money!

ravenwoodglass Mentor
IBS is also called psychogenic diarrhea because between 70% of patients with IBS are healed after taking a placebo (like sugar pills/ gluten free diet).

So the gluten free diet is a placebo huh?

Thanks Scott for jumping in on this.

Lymetoo Contributor

loraleena.....Yes, it's the Western Blot by Igenex labs in Palo Alto, CA.

if you PM me i can give you more info

mythreesuns Contributor
loraleena.....Yes, it's the Western Blot by Igenex labs in Palo Alto, CA.

I had two blood tests AND the Western Blot. I don't have Lyme.

Mike1972 Newbie
BUT if I inadvertently get gluten in my diet (not purposely), I find out by getting sick. Meaning, I don't expect to get sick, it happens. Meaning, that obviously your 'placebo effect' argument holds no water at all. Because if you were right, inadvertent exposure to gluten wouldn't effect me at all, since I wouldn't know about it.

Yes, but at the same time when you feel glutened do you start to look over your foods for sources of gluten that you could have ingested. And if you find none do you blame it on cross-contamination, inhaling gluten, cosmetic products, microscopic gluten. IF you rule these out do you start to look for other diseases or conditions that make you feel bad? Do you blame feeling bad on other allergies? Thinking like this doesn't mean you're crazy but it will send you on a wild goose chase for years or even decades and you will be no better off than before you started the gluten free diet. You'll just invent more diseases besides celiac disease to explain your symptoms. I've heard some good ones on this forum: like adrenal fatigue, Lyme disease, Candida among others. What people need here, and I am not a doctor so this is just my personal opinion, is psychotherapy. I am not saying people are crazy on this forum, just that some people have major anxiety about diseases and things that could harm them (specifically people who tested negative on blood tests and biopsies and have multiple food allergies/intolerances). Addressing the anxiety, possibly depression will address the physical symptoms that people have.

BY the way, here are some misconceptions that I've found reading this forum:

1. other food allergies could cause celiac like symptoms. Allergies cause the release of histamine through IgE so they could cause diarrhea, but they don't cause depression, or any other glutening like symptoms. They also cause hives, edema in the throat, mouth, lips and these symptoms are life threatening. Most people who here who claim to be allergic don't have these signs.

2. there's a disease called gluten insensitivity. This disease doesn't exist, what exists though is latent celiac disease. These people would have the antibodies without the villous atrophy. Latent celiac disease can be demonstrated by taking a biopsy of the duodenum and finding an abnormal ratio of certain lymphocytes, called gammadelta lymphocytes, but no villous atrophy.

3. an overgrowth of candida can produce diarrhea, fatigue, depression, and celiac disease like symptoms. Small intestinal candida overgrowth only occurs in severly immunocompromised patients including those with AIDS, congenital defects in the immune system, GI tract cancer, steroid therapy, uncontroled diabetes or broad spectrum antibiotic use. It causes life threatening diarrhea, with rapid weight loss not to mention fever, and vomiting.

To answer you other question, I am researcher with a PHD in Immunology and I specialize in physiology of the GI tract. 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.

Scott Adams Grand Master

Hello Mike1972:

You wrote:

Thinking like this doesn't mean you're crazy but it will send you on a wild goose chase for years or even decades and you will be no better off than before you started the gluten free diet. You'll just invent more diseases besides celiac disease to explain your symptoms. I've heard some good ones on this forum: like adrenal fatigue, Lyme disease, Candida among others. What people need here, and I am not a doctor so this is just my personal opinion, is psychotherapy.

The fact that some people's problems here encompass more than just celiac disease does not discount the real possibility that people with one autoimmune disease are much more likely to have additional autoimmune diseases--in fact they are much more likely to have additional disorders than the normal population. Additional food intolerances are also quite common, such as to cow's milk (casein), corn, soy, etc. To imply that these people need "psychotherapy" is not only not helpful to them, but this type of improper advice could lead many people who are here to never get healthy--or worse. To see studies on additional disorders that are associated with celiac disease please go to:

Celiac Disease Research: Associated Diseases and Disorders

Here you go again sounding authoritative, but failing to cite any studies to back up your mistaken claims:

BY the way, here are some misconceptions that I've found reading this forum:

1. other food allergies could cause celiac like symptoms. Allergies cause the release of histamine through IgE so they could cause diarrhea, but they don't cause depression, or any other glutening like symptoms. They also cause hives, edema in the throat, mouth, lips and these symptoms are life threatening. Most people who here who claim to be allergic don't have these signs.

Not only can other food intolerance mimic the symptoms of celiac disease, but casein intolerance can also create the same type of intestinal damage that celiac disease can cause. Since you are a GI Tract Ph.D. researcher and don't know this, you obviously have some more research to do...but it's ok, I can help you... that is what I'm here for:

Please read everything at:

Casein / Cow's Milk Intolerance and Celiac Disease

2. there's a disease called gluten insensitivity. This disease doesn't exist, what exists though is latent celiac disease. These people would have the antibodies without the villous atrophy. Latent celiac disease can be demonstrated by taking a biopsy of the duodenum and finding an abnormal ratio of certain lymphocytes, called gammadelta lymphocytes, but no villous atrophy.

Yes, the current problem with the formal diagnosis of celiac disease is that it can only be made if both the antibodies are present, and the intestinal lesion (damage) had reached a crtical point, otherwise doctors will say "no celiac disease." Although clinically they may be correct, there is a much larger grey area called gluten intolerance, which may make up as much as 12-15% of the population. This groups has the genetic markers for celiac disease, and may or may not have the antibodies present, or may have some of the antibodies and some milder form of intestinal damage, or no intestinal damage. They still benefit from a gluten-free diet, and many in this group, if they continue to eat gluten, may one day end up in the full-blown celiac disease group.

I will point you again to the articles that it appears you didn't read before:

Early Diagnosis of Gluten Sensitivity: Before the Villi are Gone by By Kenneth Fine, M.D.

Celiac Disease—Gluten Sensitivity: What’s the Difference? By Ron Hoggan

Understanding the Genetics of Gluten Sensitivity by Dr. Scot Lewey

3. an overgrowth of candida can produce diarrhea, fatigue, depression, and celiac disease like symptoms. Small intestinal candida overgrowth only occurs in severly immunocompromised patients including those with AIDS, congenital defects in the immune system, GI tract cancer, steroid therapy, uncontroled diabetes or broad spectrum antibiotic use. It causes life threatening diarrhea, with rapid weight loss not to mention fever, and vomiting.

I don't claim to be an expert on candida, but you are mistaken here. Celiacs can often get SIBO:

Bacterial Overgrowth of Small Intestine Common in Treated Celiac Disease

The conclusion of this study: "The researchers conclude that SIBO affects most celiacs who have persistent gastrointestinal symptoms after going gluten-free."

To answer you other question, I am researcher with a PHD in Immunology and I specialize in physiology of the GI tract. 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.

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

plantime Contributor

I am in college right now, studying to be a Certified Public Accountant, and I know for certain that if I made claims like yours with no references and citations to back up what I am saying, I would be kicked out of college. Please, as Scott asks, give us references. We do go read them, that is how we learn.

happygirl Collaborator

Mike,

I also suggest that you read the latest book by Dr. Peter Green, a leading Celiac physician and researcher at Columbia University. His book is Celiac Disease: A Hidden Epidemic.

Please do not insult the Celiacs on this board that are still having health problems. Celiac is not the cure all for some of us. We can only wish that it was and search for a way to live our life the best.

Also, you mentioned about other allergies...In fact, most of the people on this board talk about other intolerances (IgG) not allergies (IgE).

Laura

AndreaB Contributor
Also, you mentioned about other allergies...In fact, most of the people on this board talk about other intolerances (IgG) not allergies (IgE).

Laura

Laura,

I'm one of those that just learned that IgG was intolerance and IgE was allergies. I thought the IgG was a delayed allergic reaction. Anyway, I have only one true allergy which is also an intolerance. But I always stated that is was IgG.

jerseyangel Proficient
Laura,

I'm one of those that just learned that IgG was intolerance and IgE was allergies. I thought the IgG was a delayed allergic reaction. Anyway, I have only one true allergy which is also an intolerance. But I always stated that is was IgG.

Andrea--

You were actually half right! :D I believe (and I'm no expert, here) that IgG is also called "delayed food allergy"--but the symptoms are really those of intolerance, not classic allergy. :blink:

happygirl Collaborator

Agreed....just trying to differentiate that we recognize the difference between an allergy (histamine reaction) and intolerance (various symptoms) (the difference between a gluten allergy vs. a gluten intolerance, etc)

Guest nini

Way to go Scott! You rock!

Mike1972 Newbie
The fact that some people's problems here encompass more than just celiac disease does not discount the real possibility that people with one autoimmune disease are much more likely to have additional autoimmune diseases--in fact they are much more likely to have additional disorders than the normal population.

Here you go again sounding authoritative, but failing to cite any studies to back up your mistaken claims:

Not only can other food intolerance mimic the symptoms of celiac disease, but casein intolerance can also create the same type of intestinal damage that celiac disease can cause. Since you are a GI Tract Ph.D. researcher and don't know this, you obviously have some more research to do...but it's ok, I can help you... that is what I'm here for:

Yes, the current problem with the formal diagnosis of celiac disease is that it can only be made if both the antibodies are present, and the intestinal lesion (damage) had reached a crtical point, otherwise doctors will say "no celiac disease." Although clinically they may be correct, there is a much larger grey area called gluten intolerance, which may make up as much as 12-15% of the population. This groups has the genetic markers for celiac disease, and may or may not have the antibodies present, or may have some of the antibodies and some milder form of intestinal damage, or no intestinal damage. They still benefit from a gluten-free diet, and many in this group, if they continue to eat gluten, may one day end up in the full-blown celiac disease group.

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

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

Casein intolerance only occurs in children less than 10 years of age and is caused by sensitization of the fetal immune system by the consumption of milk by the mother. I don't see any evidence in those studies that they produce villous atrophy and nor that it can mimick the symptoms of celiac disease in adults.

The antibodies and the biopsy are not needed both for diagosis of celiac disease and most doctors will diagnose it based on highly elevated antibody levels. A newer method of performing the biopsy is currently being introduced, it involves looking at the ratio of gammadelta lymphocyes in the epithelial or submucosal layer of the duodenum. This test has the ability to detect all cases of celiac disease even without villous atrophy or conclusive blood test results.

I don't claim to be an expert on candida, but you are mistaken here. Celiacs can often get SIBO:

Bacterial Overgrowth of Small Intestine Common in Treated Celiac Disease

Candida is a fungus not a bacteria and it's not involved in producing small intestinal bacterial overgowth.

JerseyAngel wrote:

"You were actually half right! I believe (and I'm no expert, here) that IgG is also called "delayed food allergy"--but the symptoms are really those of intolerance, not classic allergy. "

Food allergy is a hypersensitivity type I response which is caused by IgE, in some cases the food allergy may have a delayed response but it's not IgG mediated but due to more lymphocytes arriving to the area due to the inital release of histamine. It's simillar to the delayed response in asthma. IgG is not involved in food allergies or intolerances.

Mike

Lymetoo Contributor
I had two blood tests AND the Western Blot. I don't have Lyme.

The keyword was IGENEX.

Canadian Karen Community Regular
What people need here, and I am not a doctor so this is just my personal opinion, is psychotherapy.

Mike.

You're right, Mike, you are not a doctor, but from the sounds of it, you are right on track to fit right in with the "blinders on" attitude of so many doctors out there (you know, the ones that have had us banging our heads against the wall all these years in frustration, the same ones who told us it was "all in our head" or it was "IBS - which only stands for I'm Basically Stumped, or it is "depression" or just outright called us hypochondriacs........ meanwhile, 11 years later, finally we get properly diagnosed......). I would have expected so much more from a "researcher with a PHD in Immunology who specializes in physiology of the GI tract." who also happens to have lived his whole life dealing with Celiac Disease.

Thank God there are researchers who step outside the typical medical textbook box and take on the challenge of being on the cutting edge of research and breakthroughs in regards to this insidious disease rather than just sitting back and staying in the comfort zone of believing EVERYTHING they read in the medical textbooks. Those brave researchers are the ones who have my undying gratitude, as those researchers are going to be the ones who finally make the breakthrough that will change my life and give me my life back.

Scott Adams Grand Master
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

Do you even read your own references? On the site you posted it says:

"General surveys report that as many as 25-30% of households consider at least 1 family member to have a food allergy. This high rate is not supported by controlled studies in which food challenges are used to confirm patient histories...Severe anaphylactic reactions, including death, can occur following the ingestion of food. Typical symptoms observed in a food-induced anaphylactic reaction involve the skin, gastrointestinal tract, and respiratory tract. Frequently observed symptoms include oropharyngeal pruritus, angioedema (eg, laryngeal edema), stridor, dysphonia, cough, dyspnea, wheezing, nausea, vomiting, diarrhea, flushing, urticaria, and angioedema. Fatalities result from severe laryngeal edema, irreversible bronchospasm, refractory hypotension, or a combination thereof. Food allergy has been confirmed in approximately one third of the patients with anaphylaxis presenting to the emergency department at the Mayo Clinic."

So you are saying that someone with unexplained prolonged diarrhea, vomiting, etc., isn't also subject to depression, fatigue or weight loss? Obviously the symptoms mentioned at your reference site are "glutening symptoms" that "mimick celiac disease," so that part of your claim also looks silly on its face with just the information that you provided at this reference site.

Since the average time to diagnosis is 10-11 years, that means many people, myself included, suffer with severe, unexplained symptoms for years. This certainly led to depression in my case, and it has with many people here as well. But, just in case you don't believe me, here are some references (I gave you a link to these before but obviously you didn't bother to read it):

Depression and Celiac Disease

Schizophrenia / Mental Problems and Celiac Disease

Casein intolerance only occurs in children less than 10 years of age and is caused by sensitization of the fetal immune system by the consumption of milk by the mother. I don't see any evidence in those studies that they produce villous atrophy and nor that it can mimick the symptoms of celiac disease in adults.

Casein intolerance is not limited to children--not too long ago it was thought that celiac disease was only limited to children, and this has been shown to be wrong (although many medical doctors still haven't heard the news yet). You missed one of the studies there that does show intestinal damage due to milk intolerance:

Quantitative Estimation of Cellular Infiltration of the Small Intestinal Mucosa in Children with Cow's Milk and Gluten Intolerance

More info is at:

Open Original Shared Link

The antibodies and the biopsy are not needed both for diagosis of celiac disease and most doctors will diagnose it based on highly elevated antibody levels. A newer method of performing the biopsy is currently being introduced, it involves looking at the ratio of gammadelta lymphocyes in the epithelial or submucosal layer of the duodenum. This test has the ability to detect all cases of celiac disease even without villous atrophy or conclusive blood test results.

Candida is a fungus not a bacteria and it's not involved in producing small intestinal bacterial overgowth.

You are partially right here, but only in theory--in practice things are much different. Try to get an insurance company to pay for a biopsy for celiac disease without first doing the blood tests. The blood tests are very often inconclusive, and if the antibody levels are not elevated to certain, specific high levels in many cases a biopsy will not be ordered. Yes, there are newer and better biopsy techniques that have been developed but they are not yet widely used--in fact I would estimate that 90% or more still use the standard techniques and diagnostic criteria that they've used for the last 20 years or more. Here is more on inconclusive blood tests:

False Negative Serological Results Increase with Less Severe Villous Atrophy

Commercial Tissue Transglutaminase (tTG) Lab Screenings May Miss Many Cases of Celiac Disease

Take care,

Scott

Ursa Major Collaborator
However food allergies do not cause depression, fatigue, weight loss, or glutening symptoms and they don't mimick celiac disease.

You're right, food allergies won't cause those things. However, food intolerances are quite capable of producing all of the above.

Casein intolerance only occurs in children less than 10 years of age and is caused by sensitization of the fetal immune system by the consumption of milk by the mother. I don't see any evidence in those studies that they produce villous atrophy and nor that it can mimick the symptoms of celiac disease in adults.

Now THAT is utter nonsense. There are millions of adults who can't tolerate casein, and it has been proven that dairy can cause the same villious atrophy as celiac disease (as can soy). You apparently have not managed to look at the right studies, if you haven't come across evidence for this.

As for casein intolerance only occuring in children 10 and under, you should tell that to my husband's grandmother, who has been casein intolerant all her life. Or his cousin (who is 50 years old), who will fall into deep, dark depression within a day of consuming any dairy. Or for that matter, my youngest daughter (who is almost 15), who throws up all night if eating cheese, or who gets insanely hyper when she eats ice cream (and she isn't even intolerant to lactose, her tests showed intolerance to casein, lactose was okay).

Mike1972 Newbie
Do you even read your own references? On the site you posted it says:

"General surveys report that as many as 25-30% of households consider at least 1 family member to have a food allergy. This high rate is not supported by controlled studies in which food challenges are used to confirm patient histories...Severe anaphylactic reactions, including death, can occur following the ingestion of food. Typical symptoms observed in a food-induced anaphylactic reaction involve the skin, gastrointestinal tract, and respiratory tract. Frequently observed symptoms include oropharyngeal pruritus, angioedema (eg, laryngeal edema), stridor, dysphonia, cough, dyspnea, wheezing, nausea, vomiting, diarrhea, flushing, urticaria, and angioedema. Fatalities result from severe laryngeal edema, irreversible bronchospasm, refractory hypotension, or a combination thereof. Food allergy has been confirmed in approximately one third of the patients with anaphylaxis presenting to the emergency department at the Mayo Clinic."

So you are saying that someone with unexplained prolonged diarrhea, vomiting, etc., isn't also subject to depression, fatigue or weight loss? Obviously the symptoms mentioned at your reference site are "glutening symptoms" that "mimick celiac disease," so that part of your claim also looks silly on its face with just the information that you provided at this reference site.

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.

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.

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

Adverse reactions to foods, aside from those considered toxic, are caused by a particular individual intolerance towards commonly tolerated foods. Intolerance derived from an immunological mechanism is referred to as Food Allergy, the non-immunological form is called Food Intolerance. IgE-mediated food allergy is the most common and dangerous type of adverse food reaction. It is initiated by an impairment of normal Oral Tolerance to food in predisposed individuals (atopic). Food allergy produces respiratory, gastrointestinal, cutaneous and cardiovascular symptoms but often generalized, life-threatening symptoms manifest at a rapid rate-anaphylactic shock. Diagnosis is made using medical history and cutaneous and serological tests but to obtain final confirmation a Double Blind Controlled Food Challenge must be performed. Food intolerances are principally caused by enzymatic defects in the digestive system, as is the case with lactose intolerance, but may also result from pharmacological effects of vasoactive amines present in foods (e.g. Histamine). Prevention and treatment are based on the avoidance of the culprit food.

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      I also have food particles left on toiet paper when i wipe and my stool is light yellow not absorbing fats. I urinate about 15 times a day and have very sticky snot,dry throat.
    • kopiq
      Hi all, I was diagnosed by blood work about 2 months ago and have since went on a strict gluten free diet. I have an endoscopy in January and the GI dr said nothing about staying on gluten for it; hes aware i went no gluten. starting to heal symptoms include: (this is huge) sensation coming back to genitals and when having a bowl movement. everything has been numb for a long time down there including lower belly button area. good size (not abnormal) bowel movements once a day or every two days. small dot size wart just fell off my finger that was there for years. have not broke out with a cold sore this winter (every winter prior for years i would develop a cold sore on my lip) Ongoing issues I don't sweat. not from my hands, or armpits or feet. I do not get butterflys in stomach. my hands have been so dry for years ive been using a crack cream as they crack and bleed very severely in the fall and winter.  (since going gluten free ive not used crack cream but they are still very very dry and chapped/flaky, no sweat or moisture in palms of hands at all. I dont crave food. i have no cravings at all, not for pizza, ice cream , nothing. my cravings are dead. smell of foods kinda make me hungry, but my stomach blocks it. pins needles in feet get weak legs standing up from sitting and dizzy, things almost turn black. i cannot tolerate veggies or vitamins. Iam vitamin D deficient according to my Dr and Ive tried vitamin D pills. they give me a massive migraine for 8 hours and upset my stomach. the heat from the direct sun make me extremely tired to the point of wanting to pass out. again i don't sweat. broccoli gives me a migraine headache as well. mushrooms, bell peppers burn my stomach. fruits burn my stomach, fats (peanut butter, any oil or fat from meats make me sick to my stomach for a couple hours or longer. salt and pepper burns my stomach. all these issues cause pain at my belly button area and expand to the rest of my upper stomach and sides the more i ingest through out the day. I currently eat bland basmati rice, chicken, pork chops (fat trim), boiled russet potatoes no skin for three meals a day. my snacks are gluten free ground buckwheat flour pancakes. (just water, no oil , salt, dairy.) how am i to get vitamins in my system if i cannot tolerate them in my stomach? i mentioned epidermal vitamin patchs but dr said no. why cant i stand the heat from the sun ? why cant i sweat? thanks for any info.                
    • trents
      Because you have significantly reduced your gluten intake over a considerable amount of time, it is likely that you will test negative on the antibody tests. However, if the $112 for the Quest test is not a burden, it wouldn't hurt to try. It tests for total IGA (to ascertain if you are IGA deficient) and tTG-IGA. If total IGA is deficient, it can result in false negatives in other IGA tests. The tTG-IGA is the single most popular test ordered by physicians. The Quest test is not a complete celiac panel by any means (refer to the linked article above) but it might be a good place to start. Personally, I think you know enough to conclude that you need to get serious about avoiding gluten, whether you have celiac disease or NCGS. Human nature being what it is, however, many people seem to need an official diagnosis of celiac disease in order to stay on the bandwagon. Otherwise, they seem to rationalize cheating on the gluten-free diet. And there is this misconception out there that NCGS is inconvenient and uncomfortable but not harmful so it's okay to cheat. The more we learn about gluten-related disorders the more they seem to not fit into our neat little black and white categories. By the way, celiac disease is not a food allergy. It is classified as an autoimmune disorder.
    • More2Learn
      These responses are all extremely helpful, ty.  Really good reminder about omega 6.  I also know I'm low in zinc; I took the zinc test where I drank it on a spoon and couldn't taste it.  To that end, I try to eat a lot of oysters.  I do think it would be a good idea to get the blood test.  Two questions: 1-  Is there any reason you wouldn't recommend that I just buy and take a test like this as a first step? 2- I've been somewhat gluten free since ~Jan 2023 (technically organic, gluten free, soy free, light on dairy).  I eat a lot of meat, vegetables, rice -- a common breakfast for me is three eggs and a sausage link, and I can't remember the last time I had a sandwich or bread.  However, because in my mind I didn't think I had an allergy, and I more was doing gluten free to avoid artificially iron-enriched foods, I do make exceptions.  I'll eat breaded calamari.  When my Dad visits, I split mozzarella sticks with him because he loves them so much.  I'll eat the "gluten sensitive" items at a restaurant and if they asked, "is cross contamination ok?",  I always said yes.  Based on that, since I never probably fully eliminated gluten, but it was significantly reduced... is that good enough to take the blood test?  Because the pain in my side gets SO bad (really sometimes I can't function, and I absolutely thought I was dying), I am hesitant to do the gluten challenge.  Would it make sense to take the test, and if it's negative, then consider doing the challenge and seeing if I can deal with eating the bread every day? Thanks again!
    • Yaya
      For me, with osteoporosis, Celiac and more than 1 heart condition, the slower, safer route is preferable.  I'm on 5 meds per day.  Too much of anything can disturb absorption of this or that. Have a Happy Thanksgiving.  I'm gone for a few days.  
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