Why Are Celiacs Affected Differently?

[Centa]

I've been reading lots of people's stories on the site.

• I can see that different people diagnosed as celiac have different recuperation times before they begin to feel better.
  
• And depending how long they went before diagnosis and eliminating wheat and grains from their life, their GI tract state would be different from other people, as they started their recuperation.
  

That seems obvious in people's stories.

• But do people have different levels of inherited predisposition to celiac...let's say, some people would have inherited baseline GI conditions that were better or worse than others? That person A would have, through genetic inheritance, a GI tract with more ability to heal, and person B would have one with an inherited disposition to be more susceptible if wheat were ingested?
  

I suppose it would be difficult to impossible for the question to be answered, medically (since you can't subject humans to certain laboratory techniques), but if it were so, it might help celiacs manage their disease to know. Person B, for example, would know that there was less slack for falling off the diet.

[2kids4me]

Celiac is an autoimmune condition that causes systemic signs - those symptoms vary among individuals. The systemic signs are related to the intestinal damage and absorbtion of gluten.

It varies among people because - it depends on the age of onset, co-morbid conditions (other illnesses), stress levels ...you name it. Young children have growth and behavior impacted.

How long the person had celiac before diagnosis plays a role. Repair of the intestinal wall takes a few months. Outward symptoms may be due to slow healing as a result of poor nutritional status from months/years of impaired absorbtion of nutrients.... or other as yet undiagnosed medical conditions

Regardless of what genetic makeup led to celiac - once it starts - celiac is celiac. How it impacts the individual with outward symptoms varies - but ALL have intestinal damage as long as gluten is eaten.

There is no "slack" for falling off the diet. Its kinda like being a "little pregnant" ...aint no such thing. There is no such thing as a "touch of celiac" either.

My son displayed less serious outward symptoms than my daughter - he was the surprise celiac (so to speak)...daughter was diagnosed first..... yet his antibodies were higher and he had badly damaged intestine......

Outward symptoms are not a reliable indicator as to the "degree of celiac". The intestine gets damaged no matter what in all celiacs if they ingest gluten...even if they seem to feel fine.

Hope this helps

Sandy

[trents]

Well said, Sandy. 2kids4me, I am assuming you are talking about celiac disease only and not what some people are calling "gluten sensitivity" which they apply to other toxic effects of gluten that don't necessarily affect the micro villi of the small bowel.

Steve

[2kids4me]

Well said, Sandy. 2kids4me, I am assuming you are talking about celiac disease only and not what some people are calling "gluten sensitivity" which they apply to other toxic effects of gluten that don't necessarily affect the micro villi of the small bowel.

Steve

Yes, I am speaking of celiac disease only...as it is autoimmune whereas gluten sensitivity can have systemic effects and be debilitating to some - it does not involve destruction of villi or an autoimmune attack

sandy

[Centa]

It varies among people because - it depends on the age of onset, co-morbid conditions (other illnesses), stress levels ...you name it. Young children have growth and behavior impacted.

How long the person had celiac before diagnosis plays a role.

Hello Sandy...cute kids you have there in your avatar

Yes, this is what I understand as well. However, I'm curious about another matter: whether or not people inherit different intestinal tract capabilities.

That isn't conditional. Age of onset, co-morbid conditions, stress levels, and growth ..all t hat you list...are all conditional on the gut. Age can vary, stress can vary, the intersection of co-morbid conditions with the celiac can vary etc.

Instead of those matters, I was wondering whether there was any medical research out there about whether or not people inherit healthier GI tracts, or more susceptible GI tracts...which would not be a condition, but a biological inheritance. Just curious. I haven't read any medical studies that take up this question, but this discussion board is loaded with people who have read so much more than I have.

I hope that clarifies my question.

I do think it would be a difficult one for there to be medical studies about: a blood test or a genetic test wouldn't screen for a whole GI tract, which is the product of a lot of genes, and for obvious reasons there aren't gut samples taken of healthy guts (to give a baseline) and then guts with damage...

The reason why I'm thinking about this is that my grandfather, who I never met, died of stomach cancer in his 50s, I have an aunt in her 80s who has persistent diarrhea for over a year, and my sister has restless leg syndrome. These relatives haven't been tested for celiac. I'm the first person in my family who has ever researched celiac and knows anything about it. I'm finding out what the factors are in my own celiac that I will need to attend to for the rest of my life.

So I'm curious about whether or not there are "stronger" or more susceptible guts, just like there are taller or shorter people, ones with predisposition to certain heart problems or not.

Eating a mouthful of wheat for someone who has inherited a GI tract able to heal quickly and well, would be quite a different health matter than eating one if one has inherited a GI tract that takes an extremely long time to start to heal.

Of course the target is not to eat wheat and grains, but it would help especially the latter group to "stay on the wagon" if they understood their steeper risks of longterm illness.

I don't think one way or the other about myself, on the question...just don't know. But I have been deeply moved by some of the stories I've read on this site of how long and difficult the wait and effort are before wellbeing starts to return.

Thanks for writing back with such a knowledgeable answer about conditions! Pat your doggies for me.

Centa

[Jestgar]

I don't know anything specific about the gut, but I can tell you that you are a compilation of your genes, not just the ones specific to the disease or organ that you are considering. One of the proteins I study, TLR4, is used by the immune system to allow your body to respond to certain bacteria. There are a couple of polymorphisms (mutations) that exist in the population that lead to a lower immune response to these bacteria. Bad thing, right? You are exposed to these bacteria (like y pestis-the plague), you don't respond well enough to kill off the bacteria, the bacteria multiply, and you die. Pretty clear.

But then why did they find that in very old men (over 100yo) that these mutations are overexpressed? What can a protein that recognizes bacteria have to do with living for a long time, especially when that particular mutation predisposes you to die faster from infection?

So your answer is 'yes' everyone has different gi tracts, different immune systems, and different "unknown unknowns" that affect how the body responds (to any challenge).

[Guest Doll]

I don't know anything specific about the gut, but I can tell you that you are a compilation of your genes, not just the ones specific to the disease or organ that you are considering. One of the proteins I study, TLR4, is used by the immune system to allow your body to respond to certain bacteria. There are a couple of polymorphisms (mutations) that exist in the population that lead to a lower immune response to these bacteria. Bad thing, right? You are exposed to these bacteria (like y pestis-the plague), you don't respond well enough to kill off the bacteria, the bacteria multiply, and you die. Pretty clear.

But then why did they find that in very old men (over 100yo) that these mutations are overexpressed? What can a protein that recognizes bacteria have to do with living for a long time, especially when that particular mutation predisposes you to die faster from infection?

So your answer is 'yes' everyone has different gi tracts, different immune systems, and different "unknown unknowns" that affect how the body responds (to any challenge).

I agree with this. Genes are nothing without an environment to act in when it comes to the immune system. A lot of people have speculated that there was some advantage to being a carrier for the genes that predispose to autoimmunity. Much like how those who are heterozygous for Sickle Cell Anemia are resistant to malaria. Of couse if you actually develop the disease due to being homozygous (I am just assuming it is recessive or is it expressed by imcomplete dominance?), you are essentially dead, or it is a disadvantage, much like autoimmune diseases in general.

No one knows what (if any) the advantage would be to being a carrier for autoimmunity, or what the ancestors of those people survived. The Plague has been thrown out there, but no one knows.

It really depends on the environment. Having the genes for autoimmunity without the trigger may protect from something else and increase survival.

As for the original question, no one knows. People with a "double set" (homozygous) of genes that predispose to Celiac seem to have more severe symptoms. Also, there are multiple genes involved, and perhaps additional genes that modify disease expression. In my case, I also have an IgE wheat allergy on top of Celiac, and my reactions are severe. There are likely many factors and many answers. Celiac Disease seems to be a polygenetic disorder and requires multiple genes and a trigger in addition to gluten to express itself.

I do not know where "gluten intolerance" falls on this issue, since there is little scientific data on it.

[ravenwoodglass]

Yes, I am speaking of celiac disease only...as it is autoimmune whereas gluten sensitivity can have systemic effects and be debilitating to some - it does not involve destruction of villi or an autoimmune attack

sandy

I can't agree that gluten sensitivity does not result in autoimmune attack. I am living proof that it can in some people. It did take years of damage to my joints and brain before the GI problems arose, so that may be a difference between the two. In other words the systems that are most severely impacted may be different with sensitivity rather than geneticly defined celiac. But sensitivity definately can lead to autoimmune disease. I did see a remission of my autoimmune disorders after going gluten free. Many people think that gluten sensitivity is less damaging to the body. I did also until I got my gene testing results which revealed that I was not genetically the celiac I had been diagnosed as but gluten intolerant instead.

[Guest Doll]

Ravenwoodglass....you're a misdignosed Celiac....misdiagnosed Celiac! Lol! Anyway, I think some people with the genes for autoimmunity also have the related leaky gut. In those people, then yes, gluten may cause symptoms and promote autoimmune diseases to develop. But you MUST have the genes for autoimmune disease in general in the first place, even if not the particular genes related to Celiac.

The fact is, many people who react to gluten do NOT have the genes for Celiac, and do NOT have the genes for autoimmunity. Thus, they will feel like crap from gluten, but can eaten gluten to the cows come home and never get intestinal damage or autoimmune damage. There are other causes for "gluten intolerance" that are NOT related to autoimmunity. I am not saying this to you, just in general. I am glad going gluten-free has helped you.

Some people for instance have only stopped eating gluten after eating it for 50 years. Their stomach problems have gone away and they think they have Celiac. They do not currently have any autoimmune diseases nor a positive Celiac diagnosis. They avoid CC with mass hysteria thinking they must or they are going to get cancer, diabetes, etc.

Well, I think some people are a little confused and jumping the gun here. People tend to develop the autoimmune diseases directly linked to Celiac fairly early in life. Look at my sig. I was dx'd with Type 1 diabetes (the kind related to Celiac) at age TWO. Thyroid disease at age 10. Most people who have Type 1 diabetes and Celiac are diagnosed with diabetes at very young ages. Type 1 diabetes used to be known as "Juvenile Diabetes". If you go 40 years without any such diseases, I think you are well past the high risk stage (although there is Late Onset Type 1 in Adults). In addition, the GFD has NOT been shown to prevent autoimmune diseases *unless* you already have antibodies but not clinical disease. Many of us here are gluten-free and the autoimmune diseases keep on coming, as I'm sure people will tell you.

Don't get me wrong, I am all for people eating whatever the need to feel better. But I think articles proclaiming that gluten is going to give practically the entire population autoimmune diseases is sensational and misleading. But it does sell books, tests, and gluten-free foods (not that I'm complainng!). Although many people do feel better gluten-free, it does NOT mean they are automatically at risk for autoimmune diseases, or that a gluten-free diet will help them if they are.

[ravenwoodglass]

Ravenwoodglass....you're a misdignosed Celiac....misdiagnosed Celiac! Lol! Anyway, I think some people with the genes for autoimmunity also have the related leaky gut. In those people, then yes, gluten may cause symptoms and promote (but is likely not the actual cause) autoimmune diseases to develop. But you MUST have the genes for autoimmune disease in general in the first place, even if not the particular genes related to Celiac.

The fact is, many people who react to gluten do NOT have the genes for Celiac, and do NOT have the genes for autoimmunity. Thus, they will feel like crap from gluten, but can eaten gluten to the cow's come home and never get intestinal damage or autoimmune damage. There are other causes for "gluten intolerance" that are NOT related to autoimmunity.

I actually am officially diagnosed as a celiac, no doubt about it in anyones mind. My son and I could have been poster children for the disease. I developed severe GI problems again after an allergic reaction to a drug and when they had not resolved I had testing done for other intolerances and while I was at it I had the gene test. I had the gene test done mostly for my DD who is in a 'honeymoon' period and in denial about being celiac. She had gene testing done and said "See I can't be celiac I don't have the gene". Surprise I don't either. There is much to be learned about this condition, causes, genes and all. Interestingly enough the drug reaction activated an autoimmune response to soy and casien, which I am really hoping is not permanent but most likely is.

[Guest Doll]

Isn't your husband Celiac? Could you children not have gotten it from him? I am honestly not disputing that you are Celiac, but do you think you may have a wheat allergy instead?

I say this because some of your symptoms can be seen with allergies. I know, because I also have finally been dx'd with a IgE wheat allergy as well as Celiac. If you have allergies, and not Celiac (apparently allergies can cause joint pain, fatigue, etc. as well), there is a chance they can be treated.

Have you had full allergy testing????

Maybe you're NOT having an autoimmune reaction, but a treatable IgE one. Of course, there are no promises, but it's something to look into, especially if you are known to have an allergic tendency (which you seem to).

In general, most people with food allergies must avoid those foods. However, some progressive doctors are using intradermal allergy shots for foods, which seem to provide relief and little risk for reaction. Benadryl can be used for a severe reaction.

[ravenwoodglass]

Isn't your husband Celiac? Could you children not have gotten it from him? I am honestly not disputing that you are Celiac, but do you think you may have a wheat allergy instead?

I say this because some of your symptoms can be seen with allergies. I know, because I also have finally been dx'd with a IgE wheat allergy as well as Celiac. If you have allergies, and not Celiac (apparently allergies can cause joint pain, fatigue, etc. as well), there is a chance they can be treated.

Have you had full allergy testing????

Maybe you're NOT having an autoimmune reaction, but a treatable IgE one. Of course, there are no promises, but it's something to look into, especially if you are known to have an allergic tendency (which you seem to).

In general, most people with food allergies must avoid those foods. However, some progressive doctors are using intradermal allergy shots for foods, which seem to provide relief and little risk for reaction. Benedryl can be used for a severe reaction.

Doll there really is no doubt that I am celiac/gluten intolerant. For one thing I have had DH since childhood when it was misdiagnosed as poison ivy. Of course the doctors couldn't answer why I had it all year long even with snow on the ground. Also my DS is not the natural son of my DH, although I suspect his natural father may have been celiac also. I have had allergy testing, in fact it was an allegist who finally was able to 'diagnose' through an elimination diet at which point I was sent to a GI to confirm.

The gene I carry for gluten intolerance is not common in the caucasian population and is found in many people who are by nature low or non gluten eaters. It is however showing to be associated with celiac in these peoples as their diets become more Americanized. In Japan for example it is now being recognized more with a celiac presentation whereas before it was mostly associated with a rare form of adult onset Type 1 diabetes. There is some research to support that this may eventually be labeled a celiac gene but for now it is considered a gluten intolerance gene.

I do have histamine reactions to soy - hives, congestion, joint pain (my first since becoming gluten free 5 years ago), and swelling of my intestines that I can actually feel. I also have some enviromental allergies, although much less since gluten-free, and my reaction from gluten is very different from my reaction to the substances that I have a true allergy to. I appretiate the heads up if this avenue had not already been explored it would be worth looking into.

[Guest Doll]

Hey, I know how miserable allergies are! Just thought I'd mention it! So do you have a wheat allergy or just Celiac? I'm wondering because I'm curious to know if Benadryl would help my severe reactions when I am CC'd. If you do have a wheat allergy, have you tried this????

[ravenwoodglass]

Hey, I know how miserable allergies are! Just thought I'd mention it! So do you have a wheat allergy or just Celiac? I'm wondering because I'm curious to know if Benadryl would help my severe reactions when I am CC'd. If you do have a wheat allergy, have you tried this????

If you have an actual allergy in addition to the celiac benadryl (a for sure gluten-free brand) would help with the histamine part of the reaction. It would not help with the symptoms that are coming from the intolerance aspect but it would help with the allergy effects. Histamines also make most people sleepy, if you like many of us get a 'speed' effect after a glutening that could also help you to sleep. If you are also allergic it wouldn't hurt to try it when you get glutened but I would try it when I did not have classes the next day, if you haven't used it before. Some people may have a bit of a 'hangover' from it, ie some residual sleepiness, so you would not want to use it for the first time when you have something important to do the next day. Also be sure not to drive while taking it until you know how your body reacts.