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Why Are Celiacs Affected Differently?


Centa

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Centa Newbie

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.


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2kids4me Contributor

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 Grand Master

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 Contributor
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 Newbie
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 Rising Star

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.


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ravenwoodglass Mentor
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! :P 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 Mentor
Ravenwoodglass....you're a misdignosed Celiac....misdiagnosed Celiac! Lol! :P 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 Mentor
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 Mentor
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.

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The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
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