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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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      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
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