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Is It Really A Disease?


Vykt0r

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Centa Newbie
Is a salad that hard to make, though? I mean...after all, vegetables are naturally gluten free. So are all tubers, lots of grains and pseudo cereals(quinoa, rice, corn), all legumes, and all meats. I personally don't bake. Most of the food I eat I boil myself. I dunno, I find that my own food tastes better than junk food, but that's me, so I won't impose my view of things on you.

I get the impression that most people feel obligated to cook meats in an oven or on a grill. You can boil those too.

EDIT

------

By the way, if we're going to talk about healthy foods, we really should exclude fruits. Fruits are nature's candy, and while they're a good alternative to what we call "junk food", they're still not particularly healthy as they're mostly sugar. Of course, it also depends on what fruit we're talking about. I mean, nutritionally, the avocado is superior to, say, an apple, but most people don't walk around with a Hass avocado in their pocket, now do they.

Hello VyktOR

Well, there seems to be a trend in your comments that you don't consider your celiac a disease, merely a biological abnormality that you have to deal with seriously, to prevent a condition of disease occurring. Your comments on cooking read to me to have the same undertone: it's not all that hard for you to control your diet: you've researched it, made your food selections, prepare at home and boil things.

Both attitudes are positive: you're understanding yourself as not ill, except when you put yourself in danger particular to your body's genetic profile, and you have found satisfactory ways to avoid danger.

However thoughtful, your use of the term "disease" to yourself doesn't take care of the meaning of the word among other people.

A lot of people on this site need to talk with doctors fairly regularly and use a medical term which the medical community itself labels a "disease", not a condition. For example the NIH and the Mayo Clinic, but there are also lots of pages and articles by research physicians which do the same, identify celiac, or celiac sprue as a disease. So there's a widespread understanding of celiac as a disease, one of the autoimmune diseases, maintained by the medical community.

It's a bit too much aiming to control people's language to joust against that medical decision about celiac...one does have to talk with doctors about a term that refers to a blood profile, a pathology profile, and a correlation with symptoms from a list. Doctors will likely keep talking about and writing about celiac as a disease. When I talk with them, if they say disease, I certainly won't correct them. We will be talking about a cluster including conditions, frequent symptoms, frequent blood profile and frequent genetic profile.

Second, as has been brought up in this thread, but evidence of it is also all over this site as well, celiacs vary in the difficulty of their struggle. You may be able to keep your wellbeing through thoughtfully choosing and boiling things. That's great if that's the extent of what you have to do to keep yourself symptom-free.

But some stories I've read on this site are not "all in their writers' head" about response to shampoos and cosmetics (by the way I read the backs of my bottles last night; yup, I found wheat in a hand lotion and in a hair conditioner; given how sick I felt at the worst of it, and how easily I can register wheat in my system, it's worth a check, tossing them out, to see if anything improves). It's not "all in their head" about eating something at a restaurant that swore it was gluten free but it wasn't, and then getting very sick. Nor is the worst situation easily controllable, going for years on a prescribed program of treatment by a doctor who refused to acknowledge symptoms. Perhaps you haven't had that experience, but it's a mind-bender...doctors are supposed to be able to match symptoms to....whatever you want to choose to call it, but they call it celiac disease...and I can tell you that people can be sick as dogs for years in that situation. I was. In other words, what you label for yourself is not what everyone on the sites labels for themselves.

As for cooking, I agree with you (but I'm agreeing with you about your life and mine, not about other people's) that cooking at home solves a lot of problems. I thanked my lucky stars that my mother taught me to cook from scratch when I was a kid in the 50s, and that I was mostly cooking from scratch when my celiac manifested. I would have been a considerably sicker puppy if I had been on a diet of prepared foods with all those lousy additives in them, or had been eating out more.

You don't appear to be having to prepare food for people in your family who do not have celiac, or for children, who have different nutritional needs for you. You're not having to deal with children who inadvertently eat something with gluten in it (crumbs, ingredients or a poor food choice) at school. So count yourself lucky that you're missing having to put in some of the effort that some posters are. I'm in your situation, not that of a parent-cook taking care of other people. Yes, it's easy, if you know for a fact that that spoon has never been in wheat, or that the toaster isn't full of crumbs of something that you don't know.

I generally think the same way you do about food ingredients, but your globalization about fruit is inaccurate qua fruit, because it thinks about fructose but not about other nutrients. I've read the books and sites about the Western high-sugar diet, too, but the claims about sucrose and fructose being "the same" are part of a campaign, not a description of fruit.

I'm trying to live as "normal" and "unpilled" life as I can, and need things like cranberries and bananas in my diet. I'm going as "natural" as I can, with an appropriate balance of natural nutrients. Welcome to a very long haul. Maintaining a full nutritional profile over the next few decades will be one of your challenges. A multivitamin is part of the solution, but it's been very amply demonstrated and written up in the news that a multivitamin doesn't cover all the bases. But you will make your choices.

A friendly suggestion for the road: I also do other things than boil things, coming from a background of Mediterranean, Middle Eastern, Indian and Asian cooking. Once you get time, look around in those cuisines...I think you'll find a lot of possibilities that satisfy your decision to avoid fruits and choose fresh things. Don't think restaurant fare...Asian restaurants, in particular can be heavy into fried and battered things...go to cookbooks written by people from the country whose cuisine you want to try. You can go as vegetarian as you want, by the way, especially in the Indian and Asian cuisines.

You can saute without breading. You can roast (why skip the roasting, b y the way? It tends to intensify flavor...boiling can be so bland). You can stew. You can thicken with a little rice flour or cornstarch.

I commend you on your beginning however: choosing good foods without additives, and cooking from scratch at home.

And I also appreciate what you've chosen for yourself, which is to decide just to go do things, and not make it a big deal to yourself.

We all look for our way to live well.

---------------

;) It's not over 'til the fat lady sings, Scotty. And I'm not fat, so she hasn't sung yet.

:) It's the discussion of details that often sheds most light


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Centa Newbie
:) Let me restate that: it's not over until the last aria is sung. My, I miss Pavarotti...
2kids4me Contributor

Actually this thread has provoked some deep thought on this side of the keyboard. I never thought that anyone was trying to say gluten / celiac did not cause incredible damage to the body.

The direction my mind has gone - is:

Were humans meant to eat wheat /grains? Is that why so many people respond badly to ingesting them?

If we were never meant to eat them - then the response to gluten as if it were poison is more normal than those that tolerate gluten. Perhaps it is the gluten tolerant that have the "disease".

regardless - the term "disease" is appropriate (IMHO) when talking celiac - because a person diagnosed with it - has damage done by gluten and their body is affected. That is what 99% of people think of as disease - something that makes them sick. Even if there is treatment - diet or meds or it goes into remission - the affliction does not disappear. (be it diabetes or celiac or MS).

I got thinking because farming as we know it today - did not exist until recently (in the evolutionary scale). Local prey animals (fish or mammal) / berries/ local fruit / were staples in the diet.

That's my rambling thoughts for today.

Sandy

Vykt0r Rookie
Hello VyktOR

Well, there seems to be a trend in your comments that you don't consider your celiac a disease, merely a biological abnormality that you have to deal with seriously, to prevent a condition of disease occurring. Your comments on cooking read to me to have the same undertone: it's not all that hard for you to control your diet: you've researched it, made your food selections, prepare at home and boil things.

Both attitudes are positive: you're understanding yourself as not ill, except when you put yourself in danger particular to your body's genetic profile, and you have found satisfactory ways to avoid danger.

However thoughtful, your use of the term "disease" to yourself doesn't take care of the meaning of the word among other people.

A lot of people on this site need to talk with doctors fairly regularly and use a medical term which the medical community itself labels a "disease", not a condition. For example the NIH and the Mayo Clinic, but there are also lots of pages and articles by research physicians which do the same, identify celiac, or celiac sprue as a disease. So there's a widespread understanding of celiac as a disease, one of the autoimmune diseases, maintained by the medical community.

It's a bit too much aiming to control people's language to joust against that medical decision about celiac...one does have to talk with doctors about a term that refers to a blood profile, a pathology profile, and a correlation with symptoms from a list. Doctors will likely keep talking about and writing about celiac as a disease. When I talk with them, if they say disease, I certainly won't correct them. We will be talking about a cluster including conditions, frequent symptoms, frequent blood profile and frequent genetic profile.

Second, as has been brought up in this thread, but evidence of it is also all over this site as well, celiacs vary in the difficulty of their struggle. You may be able to keep your wellbeing through thoughtfully choosing and boiling things. That's great if that's the extent of what you have to do to keep yourself symptom-free.

But some stories I've read on this site are not "all in their writers' head" about response to shampoos and cosmetics (by the way I read the backs of my bottles last night; yup, I found wheat in a hand lotion and in a hair conditioner; given how sick I felt at the worst of it, and how easily I can register wheat in my system, it's worth a check, tossing them out, to see if anything improves). It's not "all in their head" about eating something at a restaurant that swore it was gluten free but it wasn't, and then getting very sick. Nor is the worst situation easily controllable, going for years on a prescribed program of treatment by a doctor who refused to acknowledge symptoms. Perhaps you haven't had that experience, but it's a mind-bender...doctors are supposed to be able to match symptoms to....whatever you want to choose to call it, but they call it celiac disease...and I can tell you that people can be sick as dogs for years in that situation. I was. In other words, what you label for yourself is not what everyone on the sites labels for themselves.

As for cooking, I agree with you (but I'm agreeing with you about your life and mine, not about other people's) that cooking at home solves a lot of problems. I thanked my lucky stars that my mother taught me to cook from scratch when I was a kid in the 50s, and that I was mostly cooking from scratch when my celiac manifested. I would have been a considerably sicker puppy if I had been on a diet of prepared foods with all those lousy additives in them, or had been eating out more.

You don't appear to be having to prepare food for people in your family who do not have celiac, or for children, who have different nutritional needs for you. You're not having to deal with children who inadvertently eat something with gluten in it (crumbs, ingredients or a poor food choice) at school. So count yourself lucky that you're missing having to put in some of the effort that some posters are. I'm in your situation, not that of a parent-cook taking care of other people. Yes, it's easy, if you know for a fact that that spoon has never been in wheat, or that the toaster isn't full of crumbs of something that you don't know.

I generally think the same way you do about food ingredients, but your globalization about fruit is inaccurate qua fruit, because it thinks about fructose but not about other nutrients. I've read the books and sites about the Western high-sugar diet, too, but the claims about sucrose and fructose being "the same" are part of a campaign, not a description of fruit.

I'm trying to live as "normal" and "unpilled" life as I can, and need things like cranberries and bananas in my diet. I'm going as "natural" as I can, with an appropriate balance of natural nutrients. Welcome to a very long haul. Maintaining a full nutritional profile over the next few decades will be one of your challenges. A multivitamin is part of the solution, but it's been very amply demonstrated and written up in the news that a multivitamin doesn't cover all the bases. But you will make your choices.

A friendly suggestion for the road: I also do other things than boil things, coming from a background of Mediterranean, Middle Eastern, Indian and Asian cooking. Once you get time, look around in those cuisines...I think you'll find a lot of possibilities that satisfy your decision to avoid fruits and choose fresh things. Don't think restaurant fare...Asian restaurants, in particular can be heavy into fried and battered things...go to cookbooks written by people from the country whose cuisine you want to try. You can go as vegetarian as you want, by the way, especially in the Indian and Asian cuisines.

You can saute without breading. You can roast (why skip the roasting, b y the way? It tends to intensify flavor...boiling can be so bland). You can stew. You can thicken with a little rice flour or cornstarch.

I commend you on your beginning however: choosing good foods without additives, and cooking from scratch at home.

And I also appreciate what you've chosen for yourself, which is to decide just to go do things, and not make it a big deal to yourself.

We all look for our way to live well.

---------------

;) It's not over 'til the fat lady sings, Scotty. And I'm not fat, so she hasn't sung yet.

:) It's the discussion of details that often sheds most light

Thank you for your suggestions -- I'll take them into consideration. You're absolutely right about the fact that I don't have to take care of anyone and how that makes life easier. I won't know what it's like until it's my turn to experience it.

scotty Explorer

you're right, i'm out of this--you people have intelligence thats through the roof!! about this; beyond me; and i have more immediate concerns if you know what i mean; and i wish you luck--one thing that baffles me though and maybe all of you can clear it up: if this condition is genetic, then how come over 100 to maybe 200 or maybe more of my immediate blood relatives on both sides, ones i know closely, but how come they have no gluten intolerances; my only concern however, is my son, i think he has some allergies if not a Celiac.

2kids4me Contributor
you're right, i'm out of this--you people have intelligence thats through the roof!! about this; beyond me; and i have more immediate concerns if you know what i mean; and i wish you luck--one thing that baffles me though and maybe all of you can clear it up: if this condition is genetic, then how come over 100 to maybe 200 or maybe more of my immediate blood relatives on both sides, ones i know closely, but how come they have no gluten intolerances; my only concern however, is my son, i think he has some allergies if not a Celiac.

It can be due to genetic mutations or environmental damage to genes. The DNA sequence is complex and it gets altered by means I dont think science will ever truly discover. Babies are born without brains (only the brain stem), born without immune systems or with albinism ...and with no family history of such disorders. Babies are made form the combination of 2 sets of DNA and sometimes its just a bad mix that brings genetic flaws to the surface. Recessive genes can "hide" within families for generations and only declare themselves when two people "breed" and two recessive genes now manifest.

In my family - there was little to indicate the problems that would arise in both myself and my two children. Hubby is healthy but research shows a history of celiac in 2 cousins of his, none in my side of the family, my siblings and their children are free of autoimmune disease...but ..as you see from my signature - my hubby and I were a bad match genetically - but had no clue til we had children.

If I had lived a century ago, I would not have survived to have children since type 1 diabetes was not treatable - you peed yourself to death :o

In the last century - more diseases are treatable and curable and so many go on to have children ...wheras they physically would not have been able to conceive and/orcarry a baby to term in the past. Thus, more "flaws" are being passed on thru generations.

Not a geneticist or scientist...just my rambling thoughts...

Bit of totally off topic info - just for fun - My husband and I joke sometimes that we are a terminal cross. That is what mules are - a mix of donkey and horse - but they cannot breed.

Trying to add humour to our situation ...can't imagine what would happen if our kids had children - with another person with celiac or diabetes..yikes!

The sterility is attributed to the differing number of chromosomes of the two species: donkeys have 62 chromosomes, whereas horses have 64. Their offspring thus have 63 chromosomes which cannot evenly divide. There are rare cases of fertile mules

scotty Explorer

It can be due to genetic mutations...

see--my brilliant brain fogg totally could not come up with a simple explanation like cross-breeding. i have always thought though my parents had weak genes so to speak...overevolutionized say; you know when two nerds just seem too right for each other--and here my brother came out an architect; go figure


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Fiddle-Faddle Community Regular

Scotty, there is also the possibility that many of your relatives have undiagnosed or misdiagnosed gluten problems.

For example, if they have ever been diagnosed with:

thyroid disease (Hashimoto's or Graves, underactive or overactive)

rheumatoid arthritis

diabetes

fibromyalgia

IBS (inflammatory bowel syndrome)

Crohn's (which IS a real disease, but celiac is frequently misdiagnosed as Crohn's)

Polycystic Ovarian Syndrome

lymphoma

autism

ADD/ADHD

MS

Bipolar syndrome

epilepsy

alopecia

then gluten intolerance is very likely a factor.

Ann1231 Enthusiast

very interesting thread. I have celiac, rheumatoid arthritis, fibromyalgia, hypothyroid, hypoglycemia and yet I never think of myself as having a disease and neither do my doctors. Even my rheumotologist says I'm very healthy except I have some chronic conditions that must be treated either dietarily or by medicines. My father's family (aunts, uncles, most of my cousins) have tested positive for celiac and there is MS, cancer, diabetes etc. that we feel is a result of many years of undiagnosed celiac. I am on the side of feeling like this is a condition that we must stay on top of so that we don't get certain diseases which we are more prone to get. Same with my RA, I have to stay on top of the inflammation so that I don't get things like heart disease and other complications.

I don't know that it really matters what we call it. Basically whether we call it a condition or disease, the treatment is the same.

Guest Doll
Actually other people DO have these same issues. The majority of the people who are suffering from leaky gut do NOT have Celiac. Its the leaky gut that will open up the door for increased autoimmunity....and this is going on in a much larger group than the 1% with Celiac Disease.

Autism is an example of this...leaky gut is a part of this condition....most of these kids do not have Celiac Disease...however, there are some that do.

Anyone who suffers from leaky gut will have a stressed out immune system. I dont know if I'd call it a "screwed up" immune system....but definately one that is heavily burdened by toxins, bacteria, viruses, fungi, undigested food particles, etc. This sets the stage for autoimmunity...in *anyone*...Celiac Disease or no Celiac Disease.

I agree that this does not go away on a gluten free diet alone.

Hey Rachel, yes I agree that there are those with a leaky gut who react to gluten who are not Celiac. I think I did point out though in my post that I was only referring to *Celiac* because 1) there is not much (published?) research on non-Celiac gluten intolerance, and also I know much more about Celiac 2) this topic was referring to "Celiac Disease". I am fully aware that many here have NO autoimmune diseases or genes for Celiac, etc. but still react to gluten severely. I don't think "gluten intolerance" is fully understood yet.

I have mentioned in the past that those with autoimmune diseases seem to ALL share a leaky gut in common. This may have no outward symptoms such as multiple food intolerances, etc. The gut is now thought to be the point of entry for the trigger(s) of autoimmune diseases, or at least for some of them. I DON'T think though that the average Joe who develops a leaky gut due to say Mercury toxicity will develop autoimmune diseases though, unless they have the *genes* for it as well. There are certain genes linked to the various autoimmune diseases and increase the risk for them. It seems like the leaky gut, trigger(s), AND genes are needed for an autoimmune disease to develop.

There is likely a genetic "defect" in some people with the leaky gut, which seems to be tied into those with the genes for autoimmune diseases. It has to do with excess Zonulin production, which may exist independent of any outside cause. That said, external factors may make it worse (i.e. a gluten containing diet). Autism does seem to be found more in families with autoimmune diseases, although not in every case. Autoimmune diseases are often linked into families with Down's Syndrome, a genetic defect (trisomy 21). So, I *personally* suspect that those with both the genes for autoimmunity and a predisposition to a leaky gut (through excess zonulin production) all likely share common genes to some extent.

As *autoimmune disease* by definition means the body's immune system attacks it's own tissue like a virus, which is why I chose to use the term "screwed up". ;) Now, granted, a leaky gut MAY cause that in people without the genes for autoimmunity, but I *personally* do not think so. I think people with a leaky gut and NO genes for autoimmune diseases of any kind will react to gluten (gluten sensitivity), but will NOT develop autoimmune disease without the genes needed for those diseases to develop. This is my *personal* opinion based on what research I have seen (relating to how autoimmunity develops) and how I process what I have read.

I use the example that only 1 in 600 kids will develop Type 1 diabetes for example, even if all of those 600 kids are exposed to the same trigger all day long. This happens because (in theory) you need specific genes for autoimmune diseases to develop. Say the inital trigger is a reterovirus.

I *personally* think there are 3 categories for "gluten intolerance" (All are valid reactions to gluten, but different pathology).

1.) Celiac Disease. The ingestion of gluten in someone with Celiac triggers an IgG/IgA immune system response, which triggers a (usually but not always) delayed "allergic like" reaction and intestinal damage. The "allergic like" response likely happens due to the partially digested gluten protein (gliadin) being absorbed whole into the gut. The intestinal damage happens because of those "extra" genes that predispose to an autoimmune attack. A "disease".

2.) In people with a leaky gut (either genetic disposition or acquired) and genes for autoimmune diseases (but not necessarily Celiac), their body may respond to gluten in a similiar way as above, but will not have intestinal damage. The gliadin being absorbed into their system MAY trigger other autoimmune diseases or MAY promote the gut to be leakier, letting in the actual triggers of those other autoimmune diseases (i.e. viruses or other food proteins). There is also a subtype of people who have positive antibodies and a negative biopsy who can be included in this group. These people may actually have misdiagnosed intestinal damage, or be at high risk for it, so should be gluten free as a Celiac, in *my opinion*. A "prelude to disease".

3.) Lastly, there are people who react to gluten and have no Celiac genes, no positive Celiac tests, and/or no genetic tendency for autoimmune diseaes. If they do have autoimmune diseases or a history of such in their family, I would include them in Group 2. Many of these people react to gluten with the same "allergic like" response as the above 2 groups, but do not have intestinal damage nor any risk for autoimmune damage. They may have an acquired leaky gut induced by candida, bowel infections, metal poisoning, etc. or have a familial (runs in families) enzyme deficiency similar to lactose intolerance in which they cannot break down gluten properly. Another factor is that genetically engineered wheat is causing these problems in the population at large, along with the highly processed food "junk food" diet people more often eat. I think people with "gluten intolerance" DO have a serious reaction to gluten and need to avoid it, but I DO NOT think they are at risk for developing Celiac or any autoimmune diseases if they simply do not have the genes. A "condition" (acquired) or "genetic variance".

The absence of autoimmunity even with a leaky gut and exposure to gluten is a good way for me to separate those with a "disease" over a "condition' or "intoelrance".

I have excluded IgE wheat/gluten allergies, as "true" allergies are totally different immune process. However, there may be a good number of people here who also have this or have an actual wheat allergy and not Celiac. I am a lucky duck and have both. ;) Thanks mom and dad! Hehe...

Either way, while I do think Celiac IS a disease, I can understand why a treated Celiac does not and prefers the term "condition" or simply considers themselves to be a "genetic variant". ;) I have to agree with the fact that a treated disease does not make it go away, though. If you see autoimmune diseases like an "allergy to self" with outside antigens as triggers, then yes, Celiac is NOT really a disease. But for all current purposes, from what research into people with autoimmune diseases have shown is that there IS at least *some* kind of abnormal immune response that occurs. This can be shown by the studies that show that certain cancer types and some neuropathies are still much more common in those gluten free. There is something else going on in the immune responses of Celiacs.

Most people when exposed to those same triggers do not have this. So it may be a genetic variant, but it goes against the "wild type" and increases the chance of death and not survival. So it is really no better than being "diseased", genetic variant or not.

This is what I think right now, but as more research is made into autoimmunity, opinions may change. I have heard the terms "disease" and "condition" used to have the same meaning. The point is, people are going to call themselves what they will, and I can see both sides of the argument.

However, my concern is that if the term "disease" is not used, Celiac will not be taken seriously. And it should be. There are many of us here who could become *severely* ill someone does not. Also, we know that many of us still go on to develop autoimmune diseases even gluten free. The gluten free diet is not a cure. In order to justify Celiac research, we need to have a disease first.

P.S. Sorry for such a long post! :)

Guest Doll
I dont believe that there is any scientific evidence that all of these conditions are *caused* by gluten. In most of these conditions (Autism, Fibro, IBS, rheumatoid arthritis, etc) heavy metals, pathogens and environmental toxins are common triggers. In studies up to 90% of the people suffering these conditions have underlying causes such as Borrelia infections (Lyme), elevated mercury levels, fungal overgrowths, viruses, etc.

All of these triggers are associated with the development of Leaky Gut Syndrome. At that point gluten becomes a problem because its triggering an immune response once it passes through the leaky gut. If gluten were the *cause* for all of these conditions they should not persist when gluten is removed from the diet.

Removing gluten does not *cure* autism....it reduces symptoms by taking stress off of the immune system and the child is able to process things better by not having to suffer from the effects on the brain.

In these conditions gluten is more of an effect rather than a cause....the problems with digesting gluten originate from another source and the result is a gluten intolerance...which may or may not be Celiac (depending on genetic suscptibility).

I tend to agree with those who feel that Celiac is more of a genetic condition rather than a "disease".

Agree with you 100% here!

Guest Doll
Actually this thread has provoked some deep thought on this side of the keyboard. I never thought that anyone was trying to say gluten / celiac did not cause incredible damage to the body.

The direction my mind has gone - is:

Were humans meant to eat wheat /grains? Is that why so many people respond badly to ingesting them?

If we were never meant to eat them - then the response to gluten as if it were poison is more normal than those that tolerate gluten. Perhaps it is the gluten tolerant that have the "disease".

regardless - the term "disease" is appropriate (IMHO) when talking celiac - because a person diagnosed with it - has damage done by gluten and their body is affected. That is what 99% of people think of as disease - something that makes them sick. Even if there is treatment - diet or meds or it goes into remission - the affliction does not disappear. (be it diabetes or celiac or MS).

I got thinking because farming as we know it today - did not exist until recently (in the evolutionary scale). Local prey animals (fish or mammal) / berries/ local fruit / were staples in the diet.

That's my rambling thoughts for today.

Sandy

I think people are entitled to think what they want, of course. But I have to point out that *it's not only grains* that seem to be a problem. Soy, lechtins, nightshades, etc. have also been linked to autoimmune diseases. I think the *problem is the leaky gut* seen in those diseases (seemingly due to zonulin excess), the genes for autoimmunity, and the "initial" trigger, such as a virus. Bascially, it's back to an abnormal response in the select few that eat seemingly "normal" food selections and develop an autoimmune disease. It could be a reaction to one food protein, or almost all of them. But unless we close the leaky gut (i.e. Alba Therapeutics AT-1001 in trials now), fix the defective immune response, or cut virtually all foods out of our diet, we are still reacting to a food that most people can eat "normally" or without any serious affects.

What do others think????

Guest Doll
you're right, i'm out of this--you people have intelligence thats through the roof!! about this; beyond me; and i have more immediate concerns if you know what i mean; and i wish you luck--one thing that baffles me though and maybe all of you can clear it up: if this condition is genetic, then how come over 100 to maybe 200 or maybe more of my immediate blood relatives on both sides, ones i know closely, but how come they have no gluten intolerances; my only concern however, is my son, i think he has some allergies if not a Celiac.

Autoimmune diseases are NOT strictly genetic. They need an environmental trigger like a virus, exposure to a food protein, etc. to develop. Which is one of the reasons that some of us see Celiac as a disease and NOT a "normal genetic variance". One identical twin may have it, one may not.

Also, remember that autoimmune diseases are considered polygenetic, which simply means you need more than one *set* of genes to get it. That is why just having (one or one pair of) the "Celiac genes" in and of itself means nothing. You have to have the other genes involved and have them triggered to actually get the disease. Search Pub Med if you want to find out more about the other genes found to seemingly be involved with Celiac. It is unlikely that each and every relative in a family with inherit all the genes needed for Celiac AND be exposed to the needed triggers.

That said, about 20% of people with autoimmune diseases have a strong family history (i.e. autoimmune polyendocrine failure or multiple autoimmune cases). Some of these people may have a 50% risk of passing any or all of those disorders on, even if their partner has no family history himself (autosomal dominant). These people should probably meet with a genetic councellor to decide if they plan to have children. For reasons unclear, some families have a higher risk than others. There may be different genes involved leading to the same diseases, or a different inheritance pattern.

Autoimmune diseases do tend to cluster in some families in various forms, but in most, there is not a strong inheritance (i.e. usually only 1 in 20 people with a Celiac relative are affected themselves).

whitball Explorer

I also refer to Celiac as a disease, especially when I am trying to explain this "disease" to others. It is an aweful problem to have and it is often a progressive disease. Most are not diagnosed until significant damage has occured. My mother was not diagnosed until she was 60. The disease has damaged her thyroid, caused osteopenia, DH,. She can no longer wear makeup, her hair has mostly fallen out to the point where she must wear a wig. So, if you think about it this is a disease.

JNBunnie1 Community Regular
I have (finally!) learned to wash, dry, and chop salad greens and keep them in a Tupperware container in the fridge. I also wash and chop green onions and red peppers, dice cucumbers, and I buy pre-shredded carrots, and keep them all in separate containers in the fridge. They stay fresh in the individual containers for several days, so I only have to wash and chop about once a week.

Then, before I leave for work in the morning, it's like I have my own salad bar. It takes me about 2 minutes to assemble a salad in a large plastic container, and I have a separate small container for dressing. I also keep sliced deli gluten-free lunch meat (usually turkey) and shredded cheese.

I put the salad in a lunch bag with a freezer pack and a bottle of water and a piece of fruit, and it lasts 6-8 hours.

Completely off-topic comment- Fiddle, I learned from my chef daddy that if you tear instead of chop greens, they'll last a good bit longer for you. Obviously, you're not having a problem with that, but if you ever find you need to keep lettuce longer, just a hint from the chef. Of course, tearing takes longer too.......

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    • Wheatwacked
      Hello @Midwesteaglesfan and welcome. A result greater than 10 U/mL is considered positive. Some labs use 15 as the cutoff, but 34 is in the positive.  The endoscopy and biopsy is looking for damage to your small intestine.  I don't don't think 5 days is enough to repair the damage. This comment is effectly your answer, regardless of your biopsy results.  The endoscopy has been the Gold Standard diagnostic, and most healthcare providers won't diagnose celiac disease until your intestinal lining Marsh Score reaches stage 3. You don't really want to wait for the damage to get worse, especially since only five days mostly gluten free gave you relief.  Yes, migranes is one of the 200 symptoms that may be caused by Celiac Disease. Malabsorption Syndrome is often comorbid with celiac disease.  The western diet is deficient in many vitamins and minerals.  That's why gluten processed foods are fortified.  Gluten free processed foods are not; Vitamin D deficiency is a virtual given.  40 to 60% of the industrial population is deficient in vitamin D, Damage to the intestinal lining from celiac disease can decrease the number of vitamin D receptors.  So now you get no vitamin D from the sun (skin cancer scare) the major source of vitamin D, plus absorbtion from food is poor because of intestinal damage.   Low iodine intake is getting more of a concern because the major source of iodine used to be bread (dough conditioner with iodine was stopped in the US in the 1970s), dairy (lactose intolerance from eating quick pickles with vinegar instead of fermented pickles which supply lactase excreting lactobacillus to improve Lactose intolerance. Commercial Dairies have wheat, barley and rye added to the cow feed. Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein causing the problem.  And people use less iodized salt.  In the US intake of iodine dropped 50% from 1970 to 1984. Switch to Grass fed only milk and consider supplementing Liquid Iodine drops to your diet.  The omega 6 to omega 3 ratio of commercial milk is 5:1; Organic milk is 3:1 and grass fed milk is 1:1. The typical western diet is around 14:1, optimum for humans is 1:1.  Wheat flour is 22:1 omega 6:3.  Choose vegetables lower in omega 6, it is inflammatory.                               Eat fermented foods and switch to Grass fed only milk.  Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein.   
    • Midwesteaglesfan
      At 41 years old I have been fighting fatigue and joint pain for a couple months.  My family doctor kept saying nothing was wrong but I was insistent that I just didn’t feel right.  Finally after running several blood labs, one came back showing inflammation in my body and I was referred to a rheumatologist.  He was extremely thorough and sat with me and my family for a good hour asking questions and listening. He ordered X-rays of all my joints and more bloodwork.  He suspected some sort of reactive inflammatory arthritis.  My TTG (Tissue Transglutaminase) came back at 34. he told me to try going gluten free and out me on Salfasalzin to help the join inflammation.  Over the next couple days going gluten free and doing a lot of research and talking to people with celiacs,  we found that I should have an upper endoscopy for insurance purposes in the future.  I reached back out to my rheumatologist and expressed this concern and he got back to me stating I was correct and resume regular gluten diet and stop the medication until after that scope.     They were able to schedule me in for 2 days later.  I had been gluten free, or as close to it as I could be for about 5 days.  I know I ate some brats with it but wanted to use them up.  My symptoms had gotten slightly better in those 5 days.  I felt less fatigue and joint pain was slightly better(it had gotten really bad) so for these last 2 days I’ve gone crazy with wheat bread, pasta and such.  I’m hoping those 5 days didn’t screw this endoscopy up.  I can’t imagine after a life of gluten, my intestines healed in 5 days and after eating gluten again for these couple days,  my stomach hurts, joint pain is coming back up so I know the inflammation is there.   Hinesight after this diagnosis, I have had chronic migraines since my late teens.  Has that been a lingering symptom of celiacs all these years?  I’ve never really had the stomach issues, for me it came in heavy these last couple months as the fatigue, just always feeling tired and exhausted.  And the joint pain.     So getting in the car for the 2 hour drive to the hospital for this scope now.     Wish me luck!
    • marlene333
      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
    • Mari
      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
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