Twilight Zone Of Cd

[debmidge]

Didn't know which area to post this.

Medical data about celiac disease says that celiacs are born with gene, gene gets triggered either at birth or later in life. I want to address topic of those whose gene gets triggered later after birth - 10 - 20- 30 years later.

During those "Twilight" years where the person has no celiac symptoms - and the gene was not triggered yet, how does the immune system handle WBRO?

Does it ignore gluten? Does it digest the gluten? If it digests the gluten properly then what is it about the triggered gene that suddenly no longer digests gluten? What was this silent gene doing all that time before the trigger? Does that mean that the person during the "Twilight" years was OK with WBRO? How does the body suddenly decide that WBRO is no longer welcome?

If we can re-create the conditions prior to the "triggering of the gene" where the body did accept gluten (if the body did accept it, and that's the question) can science reverse celiac disease?

Next question, does anyone know if researchers are examining "gene therapy" to correct celiac disease?

This topic is all theoretical and is the product of my musings about celiac disease. I got to thinking about this as for my husband's first 27 years of his life he didn't have a digestive complaint at all. At age 27 his gene was triggered and life as he knew it was changed forever. I got to musing about the gene from his ages 1- 27 and wondered all of the above.

[phakephur]

Hi debmidge,

This is something I've thought a lot about. PM me if you'd like to chat some about it.

Sarah

[tarnalberry]

I do know that they are working on gene therapies for similar conditions that would likely be applicable. But the question of reversing it is a tricky one. We'd have to have a therapy that would stop gene expression of a segment of our genetics that produces a particular molecule that starts the reaction that causes damage in the intestines. The understanding of what starts and stops gene expression is still in its early phases, with a lot more research to be done to simply understand the bio-chemistry of it.

[sweetpotatoP]

Hi. I'm new on this site (new to posting too). I'm an RN who has just recently been told I am most likely gluten intolerant and possibly Celiac (I have my biopsy this coming Tuesl) After all the reading and research I have done I am convinced this is the correct dx (I've been dx'd previously with Fibromyalgia, asthma, allergies, ADD, IBS,etc.) I also have a family hx very suggestive of Celiac/gluten intolerance. I've been suspected of having an autoimmune diosorder but never knew which one. So now I'll get to the questions you had about it suddenly coming on. It is not uncommon for autoimmune diseases to just start out of the blue-often with some known or unknown trigger. Usually the trigger causes some sort of biological distress in your body (particularly anything involving the immune system and/or inflammation.) As for the role of genes and different theories (i.e. the mistaken identity theory in which you contract an adenovirus (would feel like a cold to you) and it stimulates your immune system (there are I believe about 12 amino acids on a molecular chain that adeno viruses share with gluten. It could be that your body makes antibodies to fight the virus and there's a "mistake" in the antibody that makes it target and continue to mistake gluten for a viral particle. There is much to learn about the immune system but it seems very likely that many of these autoimmune problems are related to the interaction between genes and infectious organisms. There seems to be a great deal of concern over having an "official" dx but I'm not sure why since the treatment is a diet-you aren't dependent on an insurance co. to pay for meds,etc. There's a great book that I have that I haven't seen anyone else mention. It's called "Dangerous Grains" by James Braly M.D. and Ron Hoggan, M.A. They basically take the opinion based on their research that these proteins are harmful for most humans and that we were basically not designed to eat it. (Eating items from cultivated grasses was not natural to the human diet). They believe that many disorders are linked to Gluten -not just DH and Celiac. (It has been linked to Diabetes,Cancer,ADHD,autism,schizophrenia,bipolardisorder,lupus,MS,alcoholism,rheumatoid arthritis,sjogren's syndrome,Osteporosis,infertility,etc.) and it's not coincidental that these problems have increased in frequency at the same time our consumption of convenience foods (heavy in gluten) are at an all time high. The more people consume, the more likely they are to reach that unknown threshold (which is probably an individual quantity) that "tips them over" into having active disease. Hope that helps a little. The immune system is one of the most complex, sophisticated systems in the human body and there is far more not known than there is known. I think it's best to listen to your own voice and inner gut.( No pun intended) Mine tells me that gluten is not healthy and certainly not in the quantities the average person ingests. You can't go wrong eating the way your body was designed to eat. When people ask me about the diet I will be starting this week I tell them that basically The closer the food looks to the way it comes in nature then the more likely I am to be able to eat it. I am looking forward to getting gluten out of my body.

[Guest barbara3675]

That was very well put and should give all people pause to think about what they are putting in themselves. I am able to stick to a totally gluten-free diet, but I am so attracted to carbs, that I still eat gluten-free carbs and cannot control my weight---use sugar poorly too. I would just love to be able to say that starting tomorrow I will only eat veggies, fruits and meats which is what I think you are inferring and leave the grains and sugars alone. I would be so much better off and healthier.

Barbara

[debmidge]

I have read portions of Dangerous Grains and would concur that after reading it, I, a non celiac (my husband has celiac disease), have second thoughts about eating gluten.

[pixiegirl]

I really enjoyed reading Dangerous Grains and the book makes perfect sense to me. I really love the statement that "closer the food looks to the way it comes in nature then the more likely I am to be able to eat it".

When I was first diagnoses with celiac disease I ate only that natural way, fish, chicken, veggies fruits, I loved carbs too but after about 6 weeks of not having them at all, (refined carbs that is, breads, chips, etc, fruit and veggies have carbs in them as well) the cravings I had went away. If you truly crave carbs and sugar and are deeply interested in good health I honestly believe the only way to get over it is cold turkey.

Now I do eat them occasionally, I will make a loaf of Manna by Anna bread, or have some toritilla chips and I don't crave them as long as I keep the amounts small and don't do it very often.

Susan

[sweetpotatoP]

I really enjoyed reading Dangerous Grains and the book makes perfect sense to me.  I really love the statement that "closer the food looks to the way it comes in nature then the more likely I am to be able to eat it".

When I was first diagnoses with celiac disease I ate only that natural way, fish, chicken, veggies fruits, I loved carbs too but after about 6 weeks of not having them at all, (refined carbs that is, breads, chips, etc, fruit and veggies have carbs in them as well)  the cravings I had went away.  If you truly crave carbs and sugar and are deeply interested in good health I honestly believe the only way to get over it is cold turkey.

Now I do eat them occasionally, I will make a loaf of Manna by Anna bread, or have some toritilla chips and I don't crave them as long as I keep the amounts small and don't do it very often.

Susan

<{POST_SNAPBACK}>

[sweetpotatoP]

Thanks for your response. Is the manna bread you spoke of something you would use in a bread machine? I have been reading but I know there is nothing like being able to speak to other people who know the ropes. I feel that dealing with it home won't be too awful and most of my friends and family are in healthcare so they will be quite supportive but I've always loved to eat out and travel-I still can't figure out how I will go about that, nor do I know of any restaurants in my area (southern NJ) that have gluten free accommodations. I do have a Trader Joe's which is good. It would be nice if someone would open a gluten free restaurant. My sister thinks she has this too and ran into an old school friend who lives in California-she's a yoga instructor and doesn't have Celiac but she's been eating "all natural" for years just as a lifestyle choice (her 7 year old daughter eats this way too) and she said the woman is seems so calm and serene that her demeaner alone is enough to make my sister want to change her eating habits.

Thanks,

Jeane

[nettiebeads]

Didn't know which area to post this.

Medical data about celiac disease says that celiacs are born with gene, gene gets triggered either at birth or later in life.    I want to address topic of those whose gene gets triggered later after birth - 10 - 20- 30 years later.

During those "Twilight" years where the person has no celiac symptoms  -  and the gene was not triggered yet,  how does the immune system handle  WBRO? 

Does it ignore gluten?    Does it digest the gluten?    If it digests the gluten properly then what is it about the  triggered gene that suddenly no longer digests gluten?    What was this silent gene doing all that time before the trigger?      Does that mean that the person during the "Twilight" years was OK with WBRO?    How does  the body suddenly decide that WBRO is no longer welcome? 

If we can re-create the conditions prior to the "triggering of the gene" where the body did accept gluten (if the body did accept it, and that's the question) can science reverse celiac disease? 

Next question, does anyone know if researchers are examining "gene therapy" to correct celiac disease? 

This topic is all theoretical and is the product of my musings about celiac disease.  I got to thinking about this as for my husband's first 27 years of his life he didn't have a digestive complaint at all.  At age 27 his gene was triggered and life as he knew it was changed forever.    I got to musing about the gene from his ages 1- 27 and wondered all of  the above.

<{POST_SNAPBACK}>

[judy05]

<{POST_SNAPBACK}>

I just wanted to add to this because I have often wondered where and when my problem actually started.I don't have Celiac, at least I don't have the gene, but I have had problems all my life with allergies, fibromyalgia, headaches, migraines, but was able to function normally, perhaps I got more tired than my peers (I was a nurse for 30 years) but I didn't get really sick until about the time I was going thru menopause and developed a nodule on my thyroid which was removed surgically. The surgeon said my thyroid was actually destroying itself. I had complications after surgery, had a bronchospasm and pulmonary edema. My lungs couldn't get air so they filled up with fluid. This was very scary and I thought I was going to die. After that my symptoms got decidedly worse and it was 3-4 years before anyone could figure out that the problem was coming from food. I developed severe brain fog, the first time it occurred was after a dental exam, I think I was given something with gluten and it just got worse until I had several diagnostic tests and was sent to a Gastro doc.By that time I had developed GI problems.

I know something triggered it, probably the surgery and/or menopause. I wish we had more info on the research being done.

[sweetpotatoP]

I just wanted to add to this because I have often wondered where and when my problem actually started.I don't have Celiac, at least I don't have the gene, but I have had problems all my life with allergies, fibromyalgia, headaches, migraines, but was able to function normally, perhaps I got more tired than my peers (I was a nurse for 30 years) but I didn't get really sick until about the time I was going thru menopause and developed a nodule on my thyroid which was removed surgically. The surgeon said my thyroid was actually destroying itself. I had complications after surgery, had a bronchospasm and pulmonary edema. My lungs couldn't get air so they filled up with fluid. This was very scary and I thought I was going to die. After that my symptoms got decidedly worse and it was 3-4 years before anyone could figure out that the problem was coming from food. I developed severe brain fog, the first time it occurred was after a dental exam, I think I was given something with gluten and it just got worse until I had several diagnostic tests and was sent to a Gastro doc.By that time I had developed GI problems.

I know something triggered it, probably the surgery and/or menopause. I wish we had more info on the research being done.

<{POST_SNAPBACK}>

[sweetpotatoP]

I just wanted to add to this because I have often wondered where and when my problem actually started.I don't have Celiac, at least I don't have the gene, but I have had problems all my life with allergies, fibromyalgia, headaches, migraines, but was able to function normally, perhaps I got more tired than my peers (I was a nurse for 30 years) but I didn't get really sick until about the time I was going thru menopause and developed a nodule on my thyroid which was removed surgically. The surgeon said my thyroid was actually destroying itself. I had complications after surgery, had a bronchospasm and pulmonary edema. My lungs couldn't get air so they filled up with fluid. This was very scary and I thought I was going to die. After that my symptoms got decidedly worse and it was 3-4 years before anyone could figure out that the problem was coming from food. I developed severe brain fog, the first time it occurred was after a dental exam, I think I was given something with gluten and it just got worse until I had several diagnostic tests and was sent to a Gastro doc.By that time I had developed GI problems.

I know something triggered it, probably the surgery and/or menopause. I wish we had more info on the research being done.

<{POST_SNAPBACK}>

I just was able to get the time to log back on and receive your reply. I know you said you don't have the gene for it but there are cases in which people have gluten intolerance despite not having the gene. If your thyroid was destroying itself it sounded like some sort of autoimmune thryroid disease. It's well known that events such as surgery,illness, etc can trigger autoimmune disorders. I also read some interesting material when I looked up Zinc deficiency (since intestinal problems can lead to all kinds of malabsorption and it was amazing. There was an article written by a Dr. (can't recall the website) where she describes how Zinc deficiency can cause derangement of the immune system and in animal studies all it takes is for one generation to have the dificiency which can affect up to 3 generations forward,even if they are ingesting enough zinc. She also stated how this could become an epidemic problem with wide ranging implications because many,if not most people are walking around zinc deficient; components of many grains have interference with zinc absorption and crops are zinc deficient thanks to being grown in zinc depleted soil. It's very thought provoking and I've started supplementing with zinc at the amount mentioned in this article. I will obtain the web site when I get home-it's in my favorites section there-and post it so you can check it out.

[Guest maur]

There seems to be a great deal of concern over having an "official" dx but I'm not sure why since the treatment is a diet-you aren't dependent on an insurance co. to pay for meds,etc.  There's a great book that I have that I haven't seen anyone else mention. It's called "Dangerous Grains" by James Braly M.D. and Ron Hoggan, M.A. They basically take the opinion based on their research that these proteins are harmful for most humans and that we were basically not designed to eat it. (Eating items from cultivated grasses was not natural to the human diet). They believe that many disorders are linked to Gluten -not just DH and Celiac. (It has been linked to Diabetes,Cancer,ADHD,autism,schizophrenia,bipolardisorder,lupus,MS,alcoholism,rheumatoid arthritis,sjogren's syndrome,Osteporosis,infertility,etc.) and it's not coincidental that these problems have increased in frequency at the same time our consumption of convenience foods (heavy in gluten) are at an all time high. The more people consume, the more likely they are to reach that unknown threshold (which is probably an individual quantity) that "tips them over" into having active disease. Hope that helps a little. The immune system is one of the most complex, sophisticated systems in the human body and there is far more not known than there is known. I think it's best to listen to your own voice and inner gut.( No pun intended)  Mine tells me that gluten is not healthy and certainly not in the quantities the average person ingests. You can't go wrong eating the way your body was designed to eat. When people ask me about the diet I will be starting this week I tell them that basically The closer the food looks to the way it comes in nature then the more likely I am to be able to eat it. I am looking forward to getting gluten out of my body.

<{POST_SNAPBACK}>

I have not yet been "officially" dx but as soon as we have insurance I will go for the tests, although I don't know that a biopsy will do any good at this point since I have been eating gluten-free since May, with a couple of accidents. I want the diagnosis, because I want my family members to be tested as well. Right now they are just blowing me off saying they don't have any symptoms when I know that they do. They are just going by the digestive symptoms. I have tried to convince them that it is more than that. Depression, anxiety, asthma, respitory allergies, my mother was recently diagnosed with a thyroid problem...

And I need to know if I should have my son tested (5 1/2). He suffers from exzema, and respitory allergies. And pretty much always has. He has also had 2 UTIs. Something that boys don't generally get. But that really isn't enough to get him tested.

I also feel that an official diagnosis will make me feel validated. That I am not crazy after all these years.

And I too, have been reading Dangerous Grains, that and Against the Grain. Both good books.

Maureen

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[loraleena]

Thanks for your response. Is the manna bread you spoke of something you would use in a bread machine? I have been reading but I know there is nothing like being able to speak to other people who know the ropes. I feel that dealing with it home won't be too awful and most of my friends and family are in healthcare so they will be quite supportive but I've always loved to eat out and travel-I still can't figure out how I will go about that, nor do I know of any restaurants in my area (southern NJ) that have gluten free accommodations. I do have a Trader Joe's which is good. It would be nice if someone would open a gluten free restaurant. My sister thinks she has this too and ran into an old school friend who lives in California-she's a yoga instructor and doesn't have Celiac but she's been eating "all natural" for years just as a lifestyle choice (her 7 year old daughter eats this way too) and she said the woman is seems so calm and serene that her demeaner alone is enough to make my sister want to change her eating habits.

Thanks,

Jeane

Hi,

Living in Southern NJ you must have some of the chains that have gluten free menus. Outback Steakhouse is one. Do you have a Legal Seafoods near the ocean there? Also look for a PF Changs China Bistro.

Whole Foods is a great grocery store.