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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Celiac Vaccine? Not For Me
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notme!    287

hey grodey - i read your link to a blog quoting an article about a study.  ya got me.  gimme the shot.   oh, wait.  there isn't one........

 

eating gluten free is the best shot we have so far?  no?  who knows how long one was going to live if they didn't die.  pesky death   <_<

 

and everybody on this board is going to heal up juuuuust fine, because we're less than 10% of all celiacs  :)

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Wow what a gross generalization about many doctors and scientists working together for the ultimate benefit of society. That's not how it works at all.

You think Big Pharma wants to cure disease? Think again.

There may be a few altruistic doctors out there, but Big Pharma isn't going to fund their research. The goal is to produce a drug that the patient becomes dependent upon for life. And that is exactly what this drug is about. People will come to depend on it, and Big Pharma milks the cash cow.

Maybe you should get new glasses. The rose-color tint in the lenses might be affecting your thinking.

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Lisa    457

I have enjoyed reading this thread. I love a good healthy discusion.

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grodeylocks    8

So we shouldn't invest in alternative therapies?

hey grodey - i read your link to a blog quoting an article about a study.  ya got me.  gimme the shot.   oh, wait.  there isn't one........

 

eating gluten free is the best shot we have so far?  no?  who knows how long one was going to live if they didn't die.  pesky death   <_<

 

and everybody on this board is going to heal up juuuuust fine, because we're less than 10% of all celiacs   :)

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grodeylocks    8

You clearly have no understanding of how Pharma works, and this is coming from someone who as a Biochemist knows the field in and out. I'm assuming you are also one of those people that believe MSG is the devil and that all vaccinations are bad. You can make your broad generalizations without any backing what so ever because of you're own pessimistic view of the world but however don't ruin it for the rest of us that would like to have a cure or at least some sort of protection from cross contamination.

 

You think Big Pharma wants to cure disease? Think again.

There may be a few altruistic doctors out there, but Big Pharma isn't going to fund their research. The goal is to produce a drug that the patient becomes dependent upon for life. And that is exactly what this drug is about. People will come to depend on it, and Big Pharma milks the cash cow.

Maybe you should get new glasses. The rose-color tint in the lenses might be affecting your thinking.

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Adalaide    361

You clearly have no understanding of how Pharma works, and this is coming from someone who as a Biochemist knows the field in and out. I'm assuming you are also one of those people that believe MSG is the devil and that all vaccinations are bad. You can make your broad generalizations without any backing what so ever because of you're own pessimistic view of the world but however don't ruin it for the rest of us that would like to have a cure or at least some sort of protection from cross contamination.

 

Pharmaceutical companies pay doctors to promote their drugs. This is a fact which is supported through the fact that there is complete visibility of this. I have seen my (previous) doctor's kickbacks on this. When he made it clear that he was interested in prescribing only name brand drugs, not things there were even generics for, for a medical condition he couldn't diagnose, it was obvious there was a problem with the way things were working. Many here have similar stories. I see the same damn thing with my husband. High cholesterol? Did his doctor ever tell him to change his diet? No, they prescribed a pill. High blood pressure? Did they advise a lifestyle and diet change? Nope. THERE'S A PILL FOR THAT!

 

Why the hell should we take medication for things that don't need to be medicated? The idea is beyond preposterous. I've said before, but because you don't care to read that part of what I wrote, protection from occasional CC is a good thing. For dining out, for traveling, that sort of thing. But a day to day pill for something that is easily remedied by lifestyle change is, in plain English, complete bulls$#& and moneygrubbing.

 

Once a drug is on the market the pharmaceutical company has one interest alone, making back the money they invested developing it. They run a business, they aren't philanthropists. I don't give two craps what industry you're in, you can't change the simple fact that they're in it for the money. That is what running a business is all about. Otherwise it would be called a charity.

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grodeylocks    8

Pharmaceutical companies pay doctors to promote their drugs. This is a fact which is supported through the fact that there is complete visibility of this. I have seen my (previous) doctor's kickbacks on this. When he made it clear that he was interested in prescribing only name brand drugs, not things there were even generics for, for a medical condition he couldn't diagnose, it was obvious there was a problem with the way things were working. Many here have similar stories. I see the same damn thing with my husband. High cholesterol? Did his doctor ever tell him to change his diet? No, they prescribed a pill. High blood pressure? Did they advise a lifestyle and diet change? Nope. THERE'S A PILL FOR THAT!

 

Why the hell should we take medication for things that don't need to be medicated? The idea is beyond preposterous. I've said before, but because you don't care to read that part of what I wrote, protection from occasional CC is a good thing. For dining out, for traveling, that sort of thing. But a day to day pill for something that is easily remedied by lifestyle change is, in plain English, complete bulls$#& and moneygrubbing.

 

Once a drug is on the market the pharmaceutical company has one interest alone, making back the money they invested developing it. They run a business, they aren't philanthropists. I don't give two craps what industry you're in, you can't change the simple fact that they're in it for the money. That is what running a business is all about. Otherwise it would be called a charity.

A vaccine wouldn't be something you take day to day. Oh yea pharmaceutical companies are horrible, why don't you tell that to all the cancer patients who are only alive today thanks to the development of modern drugs. Yup you're right. We secretly actually gather around in our labs and come up with ways to make you sick first. Then we purposely come up with drugs that don't cure you only keep you alive enough to keep you buying our product. Yup that's exactly how it works. This reminds me of a great saying, "never argue with an idiot, they'll drag you to their level and beat you with experience."

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kareng    1,992

All right, Kids!  This is not a forum to debate the evils or benefits or politics of "Big Pharma".   I think we know where everyone stands on the original question.

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GFinDC    609
Gemini    785

For those of you interested this is a real good breakdown of why being gluten free simply is not enough. http://scdlifestyle.com/2012/03/the-gluten-free-lie-why-most-celiacs-are-slowly-dying/

Actually, it is enough for those of us who study this disease and how it works so we can make informed decisions on what and how we eat.  The amount of people who do not return to a normal, functioning life after a diagnosis of Celiac Disease are small, overall, or they have multiple issues/diseases or they haven't learned enough to make good choices regarding gluten free food.  You can't argue this nonsense with me because I came very close to dying 8 years ago and now live a normal life and am very active. If I can do that, most people can too.

 

Besides, because of the overlap in the small intestine, we have a back-up for parts that may not function as well, long term. It's God's little beautiful design built in to prevent starvation, when sections of the small intestine become damaged and may not heal.  Not many people take the time to learn that.  I don't care about all this as I am too busy living to waste any time on what Big Pharma is doing.  I have no desire to eat any other way so it's not an issue for me. Medication is never cheap and I can only imagine how much they would charge for that.

 

But keep on trying to make people even more paranoid that then already are about the gluten-free diet...that seems to be the object around here nowadays.

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nvsmom    332

For those of you interested this is a real good breakdown of why being gluten free simply is not enough. http://scdlifestyle.com/2012/03/the-gluten-free-lie-why-most-celiacs-are-slowly-dying/

 Those numbers looked alarming but I started checking us against the norm:

 

Where is says 56% of celiacs have poor vitamin status... well, somewhere between 40-75% of people are deficient in vit D, that would put as at about typical.

 

It says we have 72% increased chance of death in the first year if we have intestinal inflammation. A healthy middle aged woman would have a 5% chance of dying in the next 10 years. I'm not a math person, but I'm guessing that means I have a 0.5% chance of dying this year - if I assume that I have inflammation, then I have about a 0.6% chance of dying in my first year gluten-free.... Well "had" since I made it through my first year. ;)

 

Yes, it sucks that we got this disease, and yes it would be great if we could fix some of the permanent damage that we are left with, but it could be so much worse. For starters, we could be one of the majority of celiacs who are undiagnosed!

 

I would be interested in some drug that could repair me. I am not interested in some drug that could make it so I could eat gluten again - gluten has no nutritional value so why bother. It would be nice to have protection against accidental glutening during those times when I have less control over my food, like when travelling, but I don't need it for eating at home most days.

 

I don't see how a celiac vaccination would work... I had symptoms from babyhood, they would have had to vaccinate me as a newborn. And I am one of "those" who doesn't agree with vaccinations for babies or all at once. I have heard wayyy too many first hand "coincidental" medical stories from people who vaccinated against various diseases only to end up with that sickness (like chicken pox) or developed other health problems from it. I honestly don't think they help all individuals.

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Gemini    785

The vaccine thing.......someone with babies told me that kids in the US get something like 28 vaccines in their first 2 years.  That is insane.  Vaccines can be hard on the immune system, if given in many batches at once.  I really believe that's why we have a proliferance of mental problems with kids today.  The assault on their immune systems must be hard.  I think the ones like polio, diptheria, tetanus...things like that are good but 28 different vaccines?   :blink:  Between this and the messed up diets of kids today, no wonder autism has skyrocketed.  If you hadn't noticed, the overuse of vaccines in this country and explosion of Celiac has also coincided with the explosion in autism and other behavior that is not entirely normal.  I think there is a connection somewhere but proving that is going to be difficult. 

 

I think if you want to use a celiac vaccine, as an adult, you have choices. I think it brave of you to be the guinea pigs..... :)

 

And I apologize for high-jacking this thread but it was about a vaccine to begin with..... ;)

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grodeylocks    8

First point. There has never been any proven link that vaccines cause autism. That is a myth. In fact if it wasn't for the extensive vaccination campaigns our life expenctancies would be drastically different. In all honesty I would be more trustworthy of xenobiotics coming out of pharma then I would of herbal supplements coming out of your local health food store as at least the big pharma drugs have to go through extensive testing of which 99 percent of all drugs fail.

 

Second point. The enzyme based therapies would be cheap, and not unlike the digestive enzyme supplements. They would protect against cross contamination and would make it safer for us to eat out.

 

Third point. The vaccine is interesting because it is the first such vaccine being developed for an autoimmune condition and may hold promise in preventing the development of other autoimmune disorders in addition to potentially calming the cycle of inflammation and repair that continues to go on in our gut long after we adopt a gluten free diet.

 

I'm not saying lets get these drugs and eat unhealthy stuff again. I'm saying that this can become another tool in our fight against the disease in terms of protecting us against cross contamination or accidental glutenings. Will the vaccine have major side effects? I can't answer that now, but it doesnt mean that we shouldn't be conducting research on it. Can you really argue though with having a safety drug on you to protect when you eat out or from unseen accidental glutenings? And yes there are many people who take years to heal from this disease. I am a year and a half strictly gluten free and I am still not back to normal. Also, the zonulin modulating drug larazotide acetate shows promise for a multitude of autoimmune disorders and not only celiac disease and could be an amazing breakthrough. For those of you who aren't aware zonulin seems to play a major role in the triggering of celiac disease and regulates the intercellular tight junctions between epithelial cells. It has been shown to be spiked not only in celiacs but is also seen to spike prior to the development of other autoimmune disorders. It may also be the cause of leaky gut which we all know can cause us to be intolerant to all other sorts of foods other than gluten. It is possible that drug could be used to help speed up the repair of leaky gut.

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aeraen    24

It seems that pumping ourselves full of drugs to allow us to tolerate gluten is a bit like injecting everyone with a substance to make them glow so we can find them in the dark... rather then just turning on a light. 

 

We found a very simple solution... don't eat gluten.  Why do we need drugs in our systems?

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Gemini    785

First point. There has never been any proven link that vaccines cause autism. That is a myth. In fact if it wasn't for the extensive vaccination campaigns our life expenctancies would be drastically different. In all honesty I would be more trustworthy of xenobiotics coming out of pharma then I would of herbal supplements coming out of your local health food store as at least the big pharma drugs have to go through extensive testing of which 99 percent of all drugs fail.

 

Second point. The enzyme based therapies would be cheap, and not unlike the digestive enzyme supplements. They would protect against cross contamination and would make it safer for us to eat out.

 

Third point. The vaccine is interesting because it is the first such vaccine being developed for an autoimmune condition and may hold promise in preventing the development of other autoimmune disorders in addition to potentially calming the cycle of inflammation and repair that continues to go on in our gut long after we adopt a gluten free diet.

 

I'm not saying lets get these drugs and eat unhealthy stuff again. I'm saying that this can become another tool in our fight against the disease in terms of protecting us against cross contamination or accidental glutenings. Will the vaccine have major side effects? I can't answer that now, but it doesnt mean that we shouldn't be conducting research on it. Can you really argue though with having a safety drug on you to protect when you eat out or from unseen accidental glutenings? And yes there are many people who take years to heal from this disease. I am a year and a half strictly gluten free and I am still not back to normal. Also, the zonulin modulating drug larazotide acetate shows promise for a multitude of autoimmune disorders and not only celiac disease and could be an amazing breakthrough. For those of you who aren't aware zonulin seems to play a major role in the triggering of celiac disease and regulates the intercellular tight junctions between epithelial cells. It has been shown to be spiked not only in celiacs but is also seen to spike prior to the development of other autoimmune disorders. It may also be the cause of leaky gut which we all know can cause us to be intolerant to all other sorts of foods other than gluten. It is possible that drug could be used to help speed up the repair of leaky gut.

First point...there never will be any research to suggest or even prove that there is a link between vaccinations and autism because then the AMA and drug companies would be open to massive lawsuits.  Just like there are no warnings to women that long term use of the birth control pill "can" increase your risk of certain cancers later in life.  We have had an explosion of breast cancer in the past 30 years and what has been the one constant in those 30 years?  Women are pumping themselves with hormones, long term, to prevent pregnancy (which is a good thing in many cases) and there are downsides to that.  Doctors are not going to bring that up, just like they downplay the side effects of numerous Rx drugs.  I am not saying that all drugs are bad because sometimes the risks do not outweigh the benefits so you have to research carefully and make really informed choices.  I am also not against vaccines.

I though I made that clear but obviously you need to have it re-iterated a number of times for it sink in.  I am just against the number of vaccines that kids are pumped with today.

 

Second point....You really think enzyme based therapies are going to be cheap?  Really?  OTC enzymes, the good ones, are not cheap.  It's all about profit.  They may not be outrageously expensive but cheap?  I am not that naive.

 

Third point.....I have already calmed my immune system down by following a strict gluten-free diet.  I have 4 autoimmune diseases in total and have not developed another one and it's been 8 years gluten-free.  You seem to think this is impossible to achieve without pharmacological intervention.  I disagree.  If someone wants to use any Celiac vaccine, that's fine with me.  I probably won't but why is that a concern to anyone else?

 

Last point.....when you stop behaving like a victim, then you might heal.  What is this pervasive BS that so many people do not heal and lead normal lives?  You act like we cannot do this on our own and live to tell about it.  I was 94 pounds at diagnosis and had no medical intervention when diagnosed. I walked away and did my recovery myself and got further than I would have if I had been scrutinized by the AMA.  Many people are capable of this.  I know about zonulin, leaky gut and all the rest.  But I want to let others know that with persistence and a strict gluten-free diet and, most importantly, a good, positive attitude, you'd be surprised at what you can achieve.  Yes, it does take a long time, but it's the norm.  We live in a society that has taught us to go to the doctor and get a pill and be better in 2 days.  Real health and recovery does not work like that. It's normal for it to take a long time.

 

When you get futher down the road in your healing and knowledge of this disease, you will be able to go out to eat and not be cc'd.  I do not eat out often but when I do, I never get sick anymore and there are many reasons for that.  I think a pill, not a vaccine, for travel would be useful but I would not rely on it all the time because I don't have to.  I have learned not to rely on pharmaceuticals because it's rarely a win-win situation.  If you get all excited about a vaccine, that's fine and I hope it works out for you but don't get all bent out of shape because others have no interest in it. 

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Coeliacblog    2

This subject divides opinion between Celiac's.

 

For me it's a no if I have to take the vaccine every day of my life. I enjoy my gluten-free diet now, why would I want to go back to quick processed foods??

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The safety and efficacy of vaccines in general has been thoroughly studied: http://www.health.ny.gov/prevention/immunization/vaccine_safety/science.htm

 

Low vaccination rates lead to an increase in death from preventable diseases.

http://www.cdc.gov/vaccines/vac-gen/whatifstop.htm

http://scienceblogs.com/insolence/2011/05/16/vaccines-and-infant-mortality-rates/

 

Whether or not people want to get a vaccine for celiac disease is up to them.  It is not contagious so it shouldn't make much difference to others.

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GFinDC    609

Here is a link to a video on the planned celiac disease vaccine.  Dr. Bob Anderson explains how it is planned to work.  It's a long video but is worth watching if you are curious about the vaccine project.

 

 

 

https://www.facebook.com/pages/Support-Dr-Bob-Anderson-Celiac-Vaccine-Under-Development/112855685492141?ref=stream&hc_location=stream

 

 

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frieze    114

The safety and efficacy of vaccines in general has been thoroughly studied: http://www.health.ny.gov/prevention/immunization/vaccine_safety/science.htm

 

Low vaccination rates lead to an increase in death from preventable diseases.

http://www.cdc.gov/vaccines/vac-gen/whatifstop.htm

http://scienceblogs.com/insolence/2011/05/16/vaccines-and-infant-mortality-rates/

 

Whether or not people want to get a vaccine for celiac disease is up to them.  It is not contagious so it shouldn't make much difference to others.

so, we need to get our kids vac. for things that rarely lead to mortality/morbidity?

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MissyBB    3

I going back to reply to the original post. I am new here so just got to reading this thread.

 

Vaccine? I think this speaks to exactly what is wrong with our world and why so many more people have celiac or NCGI these days. We are thinking the wrong way as a society. A vaccine just covers up a problem; it doesn't deal with the real problem. And the real problem is one, we have bastardized wheat to such an extent that our bodies have not evolved enough to keep up with the changes in wheat, and two, that we have become a wheat/processed carbohydrate dependent society.

 

We need to get back and look at the real issues here. A vaccine, while handy to some, is not the answer. It's like a band-aid solution. What's next? Will be need a vaccine in the future due to GMO corn, tomatoes, fruit......all because we think we are smarter than the innate Universe that originally designed REAL, honest-to-God food. 

 

More big-pharma and GMO crops are not the answer - they are the problem.

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    • Plumbago et al, Thanks for letting me know  about the "artan" drugs being ARBs. I think Cyclinglady was right the Losartan research is not free and thus not public. I saw the link with no abstract but wanted to read it to confirm as you noted in your ETA that it was another "Artan" drug Losartan causing the problem. I believe it is. I found a great (after more digging) review of all the "artans"/ARBs or most of them about whether they can contribute to sprue symptom's in addition to Benicar. here on wiley as studied by the alimentary pharmacology and therapeutic journal (AP&T) for short. http://onlinelibrary.wiley.com/doi/10.1111/apt.14176/full I wish I knew how to post the able alone it is very informative.  Please scroll over the table to the end of it since it even tells how long to expect before your sprue symptom's/conditions improve IF the "artan" drug is causing your symptom's which I find the most helpful thing about the table.  They also note histological feature (degree of villi blunting) to expect on biopsy. They note Losartan can cause "total atrophy of duodenal villi" by their reporting. I also recently had an issue with my potassium levels so I feel sure it is the Losartan. I remember reading a study about how losartan was better at the "chronic cough" I had developed using Lisinopril so I changed to Losartan a few years ago . . . now I find I could of been making my GI symptom's worse. But to answer  your other question since I began taking Folic Acid a few months ago my BP numbers went down to a healthy level of 120/80 or less sometimes . . . but with medicine. I had already been thinking I wanted to try get off the BP medicine (for good) so this is more motivation. C0q10 worked well but it is too expensive for me to take all the time! I called my doctor to have them put me back on Amlodipine/Norvasc and I can't remember why I changed off that medicine to begin with now.  I do remember needing two medicine's back then to control my BP so maybe we stopped the Norvasc instead of the Linsinopril. But now that they have put me back on Norvasc I hope my potassium levels will correct themselves. I just don't feel safe anymore taking Losartan after learning it could be making my GI symptom's worse or causing the to be unreliable. I first thought my touch of D. was from an antibiotic round but when kefir didn't get me back on track I suspected something else when my Vitamin D levels showed up low too again! Thanks everybody for ya'lls great suggestions and good research on my behalf. I also recommend this verywell article if you are still having GI problems and you suspect an "artan" like ARBs BP medicine and looking for a medicine that might have less severe  or more manageable symptom's for your lifestyle because it comprehensively list's the medicine's by drug types. https://www.verywell.com/hypertension-drugs-1745989 no medicine is without a side effect as (I) am learning but I never thought sprue would be one for my BP medicine and why I prefer Vitamins when I can find out which one too take. Now that I have the Norvasc approved as a replacement for the Losartan I might see if my BP goes up again if I stop my medicine all together as I was hoping the Folic Acid might help me with it (without medicine) and it explains why I was low in Folic Acid to begin with again. posterboy,    
    •   Ironic, We went entirely gluten-free in our home after 2016 for how bad my neurological , joints, mood gets now in addition to my former gi, skin, and other issues . My son shows signs of my early symptoms and voluntarily went off gluten, corn, and milk like me as he did his own food like diary symptom tracking. My daughter continues on gluten outside the home. We warn her of our concern for at times in toddler hood she was constipated and would bloat.  We asked their Dr to test them as I was undergoing my testing and she said no until I had my diagnosis. As we know these things take time and my son went gluten-free . He said after watching mom on my gluten challenge that he will not go back on it .  We await technology further research and we silently watch our soon to be teen girl for we know even if tested negative it can show up one day.  She says I know mom I know. The more Whole Foods here in the home we notice she actually craves gluten / processed foods less and is slowly transitioning as well.  Does your child also naturally eat less gluten and processed as well away from home? I wonder if the taste buds / craving change as the parents diet changes food options.  Thoughts?
    • Funny though, my brother and I were just discussing this. He has celiac and both his son and him are gene positive. Both were TTG/EMA negative but never tested for DGP. My brother had damage on endoscopy. They have not scoped his son. He feels his son is symptomatic but not his daughter.  I have conflicting positive and negative DGP, recent damage on biopsy and negative TTG/EMA. Two years ago my son had negative TTG and DGP. No EMA. I plan to have him gene tested and full antibodies screened again.  My brother has opted to have his children follow a gluten-free diet. I am currently allowing my son a normal diet.  But my own chaos with diagnosis, and my brother's too because he was TTG negative, makes me ultra sensitive to the possibility.  My son's ped doc has a  daughter who was recently diagnosed with celiac.  it was in the family so her mom, my son's doctor, suspected it as soon as she started getting digestive issues and losing weight.  she pretty much told me that she was glad that they didn't put her on a gluten-free diet as a child so she can enjoy eating the things she wanted to Throughout her life.  I have to say I agree to a large extent. There are many diseases that we could get At anytime. we cannot change our lives for that reason alone.  However that being said, my family has both thyroid disease and multiple sclerosis as well.   I know all too well the naive statements and assumptions that doctors can make in the face of science still working to find conclusions.  There are other types of TTG the doctors don't typically test for.  I am well aware of this, and sensitive to it. As a parent, I'm going to allow my son to continue on a normal diet for now, but we are going to pursue testinG  And I'm going to watch it very closely.  
    • It might generate based on traffic searches  or posts etc. My guess. I read them and respond because I wasn't on here as a member in 2012. I only use to visit then. So it's new to me V. happy friday   😋  
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