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Celiac - The Autoimmune Connection


veggienft

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veggienft Rookie

In the "14th Day" thread someone asked what rheumatoid arthritis (RA) genetics has to do with celiac genetics. The answer deserves a separate thread.

It's becoming apparent that antibody cytokine chain reactions are autoimmune causative facts. The question before medical science is where on this cytokine chain to make a stand.

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(July 17, 2008)


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ravenwoodglass Mentor

Thanks for posting this. I have seen the relationship in my own body and in my remission from many autoimmune mediated issues. In my case gluten free was the real key, not multiple drugs for minimal relief. I do so hope the medical community wakes up soon.

Ridgewalker Contributor

This is extremely interesting, obviously!

Celiac genetics can create intestinal celiac disease, seemingly unrelated autoimmune diseases like RA, or a combination of both. The autoimmune diseases are just as commonly the result of microorganism attack, and attack by non-gluten proteins. But the presence of these large attackers in the bloodstream is the result of gluten in the gut.

Environmentally triggered latent celiac is a causative factor in most autoimmunity.

I understand what you said about zonulin causing permeability. I've never heard that before, but I'll go with it for a moment. :lol: But according to what I've read, the idea that autoimmune diseases can be caused by microorganism attack is not a certainty- and in fact is quite controversial right now. I'm not saying I don't believe that's true. I haven't formed an opinion yet.

Please correct me if I'm wrong.... I read this through several times, and this summarizes the impression that I'm getting: All autoimmune disease is caused by leaky gut due to Celiac Disease. Everyone with an autoimmune disease has Celiac, they just might not know it. Celiac is the root cause of all other ai disease. Is this the gist of it?

I think this would seem to make sense, as long as you accept the possibility that the presence of microorganisms is what causes ai diseases.

Ridgewalker Contributor

So I did some reading on zonulin. That was discovered years ago... I totally missed it- hadn't heard of it. Thanks for mentioning it. I can't believe it's not talked about more here.

Rachel--24 Collaborator
So I did some reading on zonulin. That was discovered years ago... I totally missed it- hadn't heard of it. Thanks for mentioning it. I can't believe it's not talked about more here.

Actually zonulin has been discussed here quite a bit. You can do a search and you'll find some good info./discussions. :)

veggienft Rookie
This is extremely interesting, obviously!

I understand what you said about zonulin causing permeability. I've never heard that before, but I'll go with it for a moment. :lol: But according to what I've read, the idea that autoimmune diseases can be caused by microorganism attack is not a certainty- and in fact is quite controversial right now. I'm not saying I don't believe that's true. I haven't formed an opinion yet.

Please correct me if I'm wrong.... I read this through several times, and this summarizes the impression that I'm getting: All autoimmune disease is caused by leaky gut due to Celiac Disease. Everyone with an autoimmune disease has Celiac, they just might not know it. Celiac is the root cause of all other ai disease. Is this the gist of it?

I think this would seem to make sense, as long as you accept the possibility that the presence of microorganisms is what causes ai diseases.

The short answer: Yes, I'm down with that.

The long answer:

Keep in mind, my contributions essentially represent stuff I've read which I think I can support.

Antigens are usually foreign attackers in the form of undigested harmful proteins and microorganisms. The immune system works by identifying and attacking:

1. Antigens.

2. "Self" tissue which has been compromised by antigens.

By definition autoimmune diseases are diseases of "molecular mimicry". They exist in two forms:

1. The immune system attacks "self" tissue which it mistakenly identifies as having been compromised by invading antigens.

2. The immune system is so compromised by antigen attack that it fails to identify attacking antigens, or fails to identify compromised "self" tissue.

Recognized autoimmune diseases are systemic. They exist in areas fed by the blood and lymph system. There are few ways for antigens to enter the bloodstream. Overwhelmingly, the most common way is through digestion. The presence of large numbers of antigens in the bloodstream means the intestinal wall has lost its filtration capability. Call it permeability or "leaky-gut" syndrome.

Leaky gut can be caused by deformation, medication, yeast infection and celiac disease. Yeast infections and gluten can be immune system-linked. In other words, some celiac immune systems recognize yeast and gluten as the same invader.

People with celiac genetics recognize gluten as an antigen, an invading body. People with intestinal celiac disease are merely the tip of the celiac iceberg. They are the people who's immune systems attack and damage their intestinal walls, chemically thinking they've been compromised by gluten.

Many other people with celiac genetics either have intestinal tissue which is resistant to the attack, or have immune systems which respond in "latent" ways. In other words, gluten doesn't destroy their intestinal tissue, but causes the zonulin response shown in the above videos.

The intestinal walls open, and allow the contents, including ingested proteins and microorganisms, into the bloodstream. The blood's immune system takes on the responsibility of food digestion .....a process it was not designed for, and is not competent at.

Zonulin, now in the bloodstream, opens cell walls, capillary walls, lymph membranes, organ membranes, and antibody membranes to permeation by the ingested antigens. The immune system attacks the antigens, and attacks the tissues which it recognizes as compromised. Because some of the antigen proteins mimic the body's own tissue, the immune system also attacks "self" tissue which it mistakes for antigens.

The only thing worse would be for the immune system to lower the threshold for identifying antigens, and allow the antigens to attack tissue. Well that happens too, and sometimes the result is cancer.

This process is fact. Much of the medical community refuses to recognize it because the best available treatment is diet ......not high priced doctors and medicines. Many doctors are successful at dissociating autoimmune diseases from digestive causes because they appear separate. AT-1001 is about to use a NON-DIET digestive treatment, and treat autoimmune diseases.

After that, there will be no room for disagreement. The genie is about to come out of the bottle.

Don't think that suppressing zonulin, either with diet or with medicine, will eliminate autoimmune disease in any of us. For most of us membrane permeability is part of the aging process.

Given: A person who's untreated membranes become permeable enough to pass antigen "x" when he/she turns 50. That person gets treatment. That person's treated membranes will become permeable enough to pass antigen "x" again at some future age.

I figure the average age difference to be maybe 10 years. Ten more years of life may not seem like much to most people right now.

Get back to me when you're facing the end of your life.

..

Ridgewalker Contributor
Actually zonulin has been discussed here quite a bit. You can do a search and you'll find some good info./discussions. :)

Thanks, I'll do that. :)

Leaky gut can be caused by deformation, medication, yeast infection and celiac disease. Yeast infections and gluten can be immune system-linked. In other words, some celiac immune systems recognize yeast and gluten as the same invader.

That's interesting. There's a big difference between yeast problems simply being common in Celiacs, and saying that yeast and gluten are actually equal triggers/invaders. Where did you read that? (I'm not challenging-- I want to read more about it.)

The only thing worse would be for the immune system to lower the threshold for identifying antigens, and allow the antigens to attack tissue. Well that happens too, and sometimes the result is cancer.

Yes, I've been hearing stuff lately about how closely tied together ai disease and cancer look to be. If you have any links to good articles about this, I'd be very interested!


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Rachel--24 Collaborator
That's interesting. There's a big difference between yeast problems simply being common in Celiacs, and saying that yeast and gluten are actually equal triggers/invaders. Where did you read that? (I'm not challenging-- I want to read more about it.)

I'm someone who believes that pathogens have a strong link to the onset of autoimmune disease.

Check these for a possible link between Candida Albicans and Celiac Disease.

https://www.celiac.com/articles/695/1/Does-...ease/Page1.html

Open Original Shared Link

Personally, I feel that candida is a likely trigger. Its opportunistic and may overgrow during times when the immune system is compromised. This can occur during infection, while taking antibiotics or other drugs, during pregnancy when hormones are changing, during times of stress, etc.

Celiac requires a trigger.....it is typically triggered during periods of stress...either physical or emotional.

tipnpat Newbie
In the "14th Day" thread someone asked what rheumatoid arthritis (RA) genetics has to do with celiac genetics. The answer deserves a separate thread.

Hi,

I was the one with the "RA" question. When you said RA gene I was thinking along the lines of DQ and I thought RA was another gene locus or something like that. Now that rheumatory arthritis is spelled out I'm thinking - duh!

This was a very interesting and fascinating post. It was timely as I had just gotten my glutenfreeindy newsletter by e-mail and there was some research excerpt that mentioned the role of cytokines. I've been looking for the source of the article. If I find it I'll post it here. The study was seeking out different responses of the body to non-celiac gluten sensitivity and celiac disease. There were some variations in cytokine expression and intestinal permeability that defined the two different disorders but recognized that they are both ultimately immune-mediated. That seems to just say to me that it's just part of the many paths that lead to the main road.

veggienft Rookie
Hi,

I was the one with the "RA" question. When you said RA gene I was thinking along the lines of DQ and I thought RA was another gene locus or something like that. Now that rheumatory arthritis is spelled out I'm thinking - duh!

This was a very interesting and fascinating post. It was timely as I had just gotten my glutenfreeindy newsletter by e-mail and there was some research excerpt that mentioned the role of cytokines. I've been looking for the source of the article. If I find it I'll post it here. The study was seeking out different responses of the body to non-celiac gluten sensitivity and celiac disease. There were some variations in cytokine expression and intestinal permeability that defined the two different disorders but recognized that they are both ultimately immune-mediated. That seems to just say to me that it's just part of the many paths that lead to the main road.

I too think the implications of this research, that all autoimmunity has a common, treatable cause, are interesting and fascinating. I thought it quite significant that Dr. Feldman said TNF-alpha cytokine blockers would "provid(e) therapeutic targets for all unmet medical needs"

However, it makes me cringe to see posts which insist that celiac disease can only be defined by some set of positive test results, results which confirm an immune attack against the intestinal lining. Such posts, intended or not, define an exclusive social club with intestinal damage the price of entry. The thread which prompted this thread saw people willing to cause physical harm simply to gain access.

Intestinal damage is not the defining symptom of celiac disease. Celiac disease is a MANY-faceted disease characterized by zonulin-initiated cytokine chain reaction, and characterized by autoimmune disease ......ALL autoimmune disease.

TNF-alpha blockers are extremely expensive drugs. The people in the structure surrounding TNF-alpha blockers are living well. I'm sure AT-1001 will produce similar wealth patterns. Don't get me wrong. These pioneers are curing the plague of humanity, and deserve whatever the market will bear. But the drugs are out of the reach of most autoimmune sufferers. Those of us who can't afford these drugs need to understand how they work, and the treatment implications.

Treatment of autoimmune disease for common people doesn't include joining the exclusive private drug club. It simply means cutting out the ingestion of 1)sugar, and 2)wheat. However, one of the biggest obstacles in the way of distributing this information is the private social club of people with test-confirmed intestinal celiac disease.

Yeast infection may or may not be a connected cause in any one individual. Everyone with autoimmune symptoms should try a sugar-free, wheat-free diet. If, over a year, the symptoms abate then re-challenge with sugar. Either way, you have celiac disease.

..

Lockheed Apprentice

you are what you eat.. it's such a profound statement to me now and even more so when I see research like this. When I think about the food I'm eating being treated like a virus in my body, it's much easier to not eat that food.

Lockheed Apprentice
Treatment of autoimmune disease for common people doesn't include joining the exclusive private drug club. It simply means cutting out the ingestion of 1)sugar, and 2)wheat. However, one of the biggest obstacles in the way of distributing this information is the private social club of people with test-confirmed intestinal celiac disease.

Why are you implicating sugar here? I understand the wheat. I also have a problem with the statement "private social club of people with test-confirmed intestinal celiac disease". I am test confirmed with MRT but negative on the blood test and ELSA test but biopsy "that is consistent with celiac but ambigious for diagnostic purposes" (in short I wasn't eating enough gluten when I got scoped to be a positive because no one told me I needed to load it on my system). I don't think I would ever encourage anyone that is not diagnosed to not be aware of this topic or any benefit or research from the celiac community? I spend quite a bit of time relaying information to my local mom's group because I am certain that there are moms with infertility issues and health issues and weight issues (on both sides) that can benefit from a gluten free diet and awareness of celiac disease. So why wouldn't I relay this information? Just curious. Not offended. I guess I'm trying to figure out what you mean with that series of statements.

veggienft Rookie
Why are you implicating sugar here?

Read the links rachael-24 provided.

https://www.celiac.com/celiac-disease/does-candida-albicans-trigger-the-onset-of-celiac-disease-r687/

Open Original Shared Link

The study is actually more important than it looks. It was a large pier-reviewed study, published in the British journal Lancet. The implications, as we stated, start with immune systems identifying and attacking candida yeast. But gluten is very similar to protein on the face of candida yeast. Many immune systems mistake gluten for this protein. The result is celiac disease.

To these people, candidiasis and celiac disease are one disease.

This would be unuseable information except that candida survives on sugar. For a dietary cure to work, the people who's autoimmune symptoms are caused by candida and wheat must refrain from eating both.

......Simple

I guess I'm trying to figure out what you mean with that series of statements.

Open Original Shared Link

I don't remember reading from you that celiac disease is only truly defined by test-confirmed active intestinal attack. I wouldn't knowingly damage anyone's health to try and associate autoimmune symptoms with intestinal damage.

Diet is a better test, because the digestive tests are too narrow to catch NON-intestinal celiac disease .....I.E. autoimmune disease.

I'm saying the people who push the use of tests which confirm INTESTINAL celiac as the only reliable tests for celiac disease are excluding people from treating their NON-intestinal autoimmune diseases.

Celiac disease is the disease defined by the body attacking itself upon the ingestion of gluten. The studies in my title post confirm that ALL autoimmune diseases may be different manifestations of celiac disease.

Celiac patients include autoimmune sufferers who don't have INTESTINAL celiac disease.

..

Lockheed Apprentice
This would be unuseable information except that candida survives on sugar. For a dietary cure to work, the people who's autoimmune symptoms are caused by candida and wheat must refrain from eating both.

......Simple

Oh good grief you're really going to make me give up sugar aren't you?

I'm saying the people who push the use of tests which confirm INTESTINAL celiac as the only reliable tests for celiac disease are excluding people from treating their NON-intestinal autoimmune diseases.

Thank you so much for that clarification. You just reaffirmed my want to push food sensitivity testing on everyone I know just to make them aware of what they are eating and how it affects their body. I'm sure it's not the only way to get people thinking about food and health and how food and it's digestion impacts your overall well being, but it's a place to start.

This has been very informative.

tipnpat Newbie
However, it makes me cringe to see posts which insist that celiac disease can only be defined by some set of positive test results, results which confirm an immune attack against the intestinal lining. Such posts, intended or not, define an exclusive social club with intestinal damage the price of entry. The thread which prompted this thread saw people willing to cause physical harm simply to gain access.

I'm not sure who your post was directed at. I'm not offended if it was at me because I agree with you. I don't think we're trying to join a private social club. I think we're trying to be taken seriously. So far, the only people who have taken me seriously have been people on this forum. That's just the reality and since I need people to take me seriously in order to get appropriate care for my children I have to play the game a little. I can keep them on a gluten free diet but I need for their health to be monitored appropriately and to say to the pediatrician that I want him to be checked routinely for Type I diabetes just because "of some literature I've read," is going to be one of many battles. When my own spouse is not even on my side I need some concrete ammunition. People throw out words like Munchausen-by-proxy and hypochondria and you second guess yourself. It is hard in the real world to keep kids gluten-free when their buddy sitting next to them is eating a box of Pringles or some other piece of junk. As far as the high-priced drug goes I too think it undermines a society that needs to wake up and realize what they're putting in to their bodies and demand better. Not everything will be cured by refraining from gluten, casein, and processed foods but a WHOLE lot would. When I refrain from grains and sugar I am awake, clear, and my waistline shrinks. When I eat grains my waistband gets tight. Visceral fat is the dangerous fat which is a whole other body system discussion but it all ties in to one point - our bodies are falling apart because we fill them with junk and we seek treatments rather than cures. As for me, I'm interested in a cure. I don't accept that my son has ADHD just because. I think parts of his brain don't work because of toxic overload. I want to cure him, not treat him.

That was a bit of a tangent but I'm feeling passionate today I suppose from the harm I'm inflicting on myself.

veggienft Rookie
I'm not sure who your post was directed at. I'm not offended if it was at me because I agree with you. I don't think we're trying to join a private social club. I think we're trying to be taken seriously. So far, the only people who have taken me seriously have been people on this forum. That's just the reality and since I need people to take me seriously in order to get appropriate care for my children I have to play the game a little. I can keep them on a gluten free diet but I need for their health to be monitored appropriately and to say to the pediatrician that I want him to be checked routinely for Type I diabetes just because "of some literature I've read," is going to be one of many battles. When my own spouse is not even on my side I need some concrete ammunition. People throw out words like Munchausen-by-proxy and hypochondria and you second guess yourself. It is hard in the real world to keep kids gluten-free when their buddy sitting next to them is eating a box of Pringles or some other piece of junk. As far as the high-priced drug goes I too think it undermines a society that needs to wake up and realize what they're putting in to their bodies and demand better. Not everything will be cured by refraining from gluten, casein, and processed foods but a WHOLE lot would. When I refrain from grains and sugar I am awake, clear, and my waistline shrinks. When I eat grains my waistband gets tight. Visceral fat is the dangerous fat which is a whole other body system discussion but it all ties in to one point - our bodies are falling apart because we fill them with junk and we seek treatments rather than cures. As for me, I'm interested in a cure. I don't accept that my son has ADHD just because. I think parts of his brain don't work because of toxic overload. I want to cure him, not treat him.

That was a bit of a tangent but I'm feeling passionate today I suppose from the harm I'm inflicting on myself.

Yours is the type of situation I was referring to when I posted:

"It's apparent that many people who get sick from gluten can't get away with cutting it out of their diets.

To you people, my heartfelt condolences. I hope, after proving that gluten gives you a recognized, named disease, you can get away with cutting out gluten. It seems like the skeptics in your lives, if they cared about you, would have enough compassion to capitulate after they see you in agony, or wretching your guts out."

.....on the other thread.

We have those types in our family too, although separated from responsibility. I'd be passionate too. I see a conspiracy between the medical establishment deniers and people who don't want to be bothered, or don't want the stigma of being branded "funny" .....the stigma of family members being branded "funny".

.....peer pressure. It would help to at least have allies in the medical profession.

mushroom Proficient

I emailed the url for this thread to my naturopath (new for me here in Nevada) and received this response, which gives me hope that we may get somewhere with my treatment:

"This is a very good simple explanation of what links autoimmunity and some conditions with gut permeability and food allergies. This is a highly complex field of food allergens and their results, because for a long time the medical community only recognized immediate immune responses (mediated by IgE antibodies) as 'true' allergies (such as peanut allergies or other immediate reactions to foods). In fact there are a large amount of latent food allergies and a wide range of conditions that can be related to the foods we eat, including migraines, autoimmune disease, skin conditions, IBS, allergies, etc.

If you are really interested in this topic, I recommend reading the book "Food allergies and food intolerance" by Broston and Gamlin. It explains in great detail the theory as well as identification of food intolerances, even latent ones. This was one book that was our recommended reading of the subject in school, but also OK for layperson.

If you are feeling much better overall without gluten, I would definiely stick with it - I am generally of the belief that, especailly now with the hybridization it has gone through, wheat is not very healthy for anyone. Also, given the complex immune response, that becomes a hyperresponse as it attacks the antigens in food, it can take a while for the immune system to calm back down again and stop producing such inflammatory cytokines. So, even though you are avoiding gluten, you may not see your immune system respond as quickly even if it is a large part of the cause.

Just as those medical drugs can affect cytokines like TNF-alpha, we have many herbs that can also affect this balance and reduce tnf-alpha. Mushrooms are a great example of a natural substance that can reduce those molecules - as is quercetone that I recommended. When we see what is happening digestively fo ryou, we can more appropriately assess the level of inflammation currently in your GI tract, to help with how much this cycle needs to be interrupted. There ARE natural ways though to reduce the inflammation and gut permeability, as well as calm the immune response down and have it behave more normally again over time. These are our current goals for your treatment, working along with the medications and other conditions that you currently have."

  • 3 weeks later...
land-turtle Newbie

Someone somewhere needs to get the word out that once you test positive for celiac disease it is "almost" too late to avoid getting other autoimmune diseases. For me, age 8, thyroid disease, 21, was carpal tunnel, psoriasis at 28, then finally arthritis at 42, but not before years of aches and pains. I am sure that I am not atypical of most who did not get diagnosed until a lot of damage. What I am also saying is if you have one autoimmune disease then I think the core problem is eating the gluten, I think it is fundamental to all autoimmune diseases. I think that testing for inflammation in the body would be very useful in preventing diseases. The gluten producing grains of today have been genetically modified, they are not natural, heck, even our corn's been modified, in my opinion you put something in your body that is not natural and voila it thinks there is a foreign invader, hence the inflammation, hence the diseases. Our food is the enemy, but with the large corporations running the show, I don't think there is a dang thing we can do about it. Oh and for those who have celiac and arthritis (even rheumatoid) there is hope, I went into remission after eating for 2 years gluten free and avoiding all of the foods that I had become allergic to, but got gluttened by mistake and went back into it, so must wait another 2 years I guess to go back into remission. Hopefully....

Nancym Enthusiast

TNF suppressors are not the cure for celiac disease. They're awful. You can die from a simple infection if you're on a TNF blocker that wouldn't even phase you if you weren't. They're a drug of last resort for people suffering from terrible pain from RA and AS because the raise your risk of death in a lot of ways.

I think of pharmaceuticals as poison with occasionally beneficial side-effects. Anything that can be treated with a dietary change, doesn't need a pharmaceutical IMHO.

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      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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