Getting Confused! RePost! Results Only! What Exactly Do I Have? Yes/No?

Jmg · January 22, 2017

3 hours ago, casuallythere said:

I believe most people on this forum just want to play it safe and say hey, if my gut is under attack, whether you eat gluten and have an intolerance or celiac, get off gluten.

Most people on this forum have celiac disease. This is an immune mediated disorder:

Open Original Shared Link

Please note lifelong and strict adherence and the absence of the word optional

Some people, such as myself, have what's currently termed 'Non celiac gluten sensitivity' - this is less well understood and is to some extent a diagnosis of exclusion, once celiac is excluded then those patients who demonstrate a reaction to the gluten free diet may be deemed NCGS. One researcher in the field, Open Original Shared Link others will doubtless disagree.

These people do not show the atrophication of the villi associated with celiac but they can show a variety of other reactions, often neurological. Open Original Shared Link suggests these people also undergo an immune mediated response to Open Original Shared Link. I really wish I could be more definitive, as this is the box I'm currently in but the condition remains subject to debate and there is also ongoing discussion about whether this condition is in fact not caused by gluten and perhaps by another component of grain, see the Open Original Shared Link for more.

Finally there are people who may have decided to cut down on gluten, perhaps because of IBS or other symptoms. Some may find their digestion improves and thus avoid gluten without eliminating it.

The people on this forum are almost entirely from groups one and two. They aren't playing it safe, they're dealing with a problem whereby gluten (definitely in celiacs, possibly in NCGS) triggers an immune system reaction. The immune system doesn't care about quantities or the level of villious atrophy in the intestines. That reaction may present on the skin where it can last for many months, or the brain where a horrible depression or brain fog may appear, or the eyesight, or via chest pains, or rheumatoid pains or heart palpitations. The quantity ingested could be tiny. The sensitivity of the immune system to gluten can rise the longer gluten is excluded.

Of course there's a third group of people listed above and for those people there may be scope for gradually reintroducing gluten over time. To the best of my knowledge, the first two groups do not have that luxury.

Hope this is of help.

Matt

casuallythere · January 22, 2017

1 hour ago, Jmg said:

Most people on this forum have celiac disease. This is an immune mediated disorder:

Open Original Shared Link

Please note lifelong and strict adherence and the absence of the word optional

Some people, such as myself, have what's currently termed 'Non celiac gluten sensitivity' - this is less well understood and is to some extent a diagnosis of exclusion, once celiac is excluded then those patients who demonstrate a reaction to the gluten free diet may be deemed NCGS. One researcher in the field, Alessio Fasano, estimates that up to 6% of the population may fit this category, others will doubtless disagree.

These people do not show the atrophication of the villi associated with celiac but they can show a variety of other reactions, often neurological. Open Original Shared Link suggests these people also undergo an immune mediated response to Open Original Shared Link. I really wish I could be more definitive, as this is the box I'm currently in but the condition remains subject to debate and there is also ongoing discussion about whether this condition is in fact not caused by gluten and perhaps by another component of grain, see the Open Original Shared Link for more.

Finally there are people who may have decided to cut down on gluten, perhaps because of IBS or other symptoms. Some may find their digestion improves and thus avoid gluten without eliminating it.

The people on this forum are almost entirely from groups one and two. They aren't playing it safe, they're dealing with a problem whereby gluten (definitely in celiacs, possibly in NCGS) triggers an immune system reaction. The immune system doesn't care about quantities or the level of villious atrophy in the intestines. That reaction may present on the skin where it can last for many months, or the brain where a horrible depression or brain fog may appear, or the eyesight, or via chest pains, or rheumatoid pains or heart palpitations. The quantity ingested could be tiny. The sensitivity of the immune system to gluten can rise the longer gluten is excluded.

Of course there's a third group of people listed above and for those people there may be scope for gradually reintroducing gluten over time. To the best of my knowledge, the first two groups do not have that luxury.

Hope this is of help.

Matt

This helps tremendously, thank you for your time.

I believe I fall into the category of NCGS, but I will not know that for sure until I get a Biopsy, however, I will never know because I am not doing that unless my circumstances change.

I am curious, are you personally eliminating gluten on a very strict diet or do you eat gluten?

If you are eating gluten, have you had a Genetic Test to check to see if you have the Gene to get Celiac Disease? See this is where I would caution you. My Father believes he has Celiac Disease and he believes he developed it in his late 40's or early, 50's. But he can't know for sure because he never got a Biopsy, however unless he tested positive for all of the blood tests maybe.

My theory on this is, if you have the Gene, go 100% gluten free regardless because you do not want to develop this Disease ever. I would say unless you are part of the other 70% of the population that doesn't have the Gene, you would be in the clear.

Like I have stated in the past, I am just wondering if you heal your system can you go up or down between stages. I believe there are at least (3) different stages known today.

1. Gluten Intolerance, NCGS, non celiac gluten sensativity

2. Celiac Disease

3. Refractory Celiac Disease Type II

I believe the hardest part of this process is wondering just when does Celiac actually trigger in your system. As I'm sure everyone knows 1. Environment 2. Genetics 3. Microbiome. Here is an excellent video talking about this:

Open Original Shared Link

That is why since I have the Gene's and my Father pretty much has it, I'm not rolling the dice and taking any chances. I am getting my gluten 100% under control. I will research more later in life.

Here is my list that I feel is good information that I have recently come upon.

Links:

Open Original Shared Link

This is pretty much where I have been on the net. I have had several blood tests in the past five years, and have had a Genetic Test. I have also told everything to my Primary Doctor and GI Doctor. I have not performed a Biopsy, because I am convinced I need to go Gluten Free Regardless the outcome.

I believe I have research enough material that if gluten doesn't agree with your body, you should not eat it. There are over 200+ symptoms and things that can affect you if you eat it. I am not going to push my body harder than I need to.

The only thing left for me to research in a few years, is the fact can you eat a little gluten here and there, after you fully restore your system. Will see.

I just still feel that my IgA = 680 meaning that my system is still fighting, and my Peptide IgA being 20, to me can mean a number of things, I do not feel based on what I have read that only one weak positive is "Conclusive" diagnosis for Celiac. Especially when absolutely everything else is Negative on all of my results. However, if more blood tests were positive and my system had crashed this would be entirely a different story. I would probably do an Endoscopy to see what is going on. But I believe my results are showing that I have a gluten sensitivity at this time.

I have also notified my sister to have her blood work taken and check for her on possibly being a Silent Celiac. That scares me a little bit because she seems a bit underweight. Will see.

I am still curious on your stance on currently eating gluten and rolling the dice on possibly getting Celiac in the future because you probably have the Genes for it if you are already sensitive to gluten.

Jmg · January 22, 2017

34 minutes ago, casuallythere said:

I am curious, are you personally eliminating gluten on a very strict diet or do you eat gluten?

I will never knowingly ingest one particle of gluten from this point on till I shuffle off this mortal coil. I know that NCGS does not come with the intestinal issues that many here suffer and I'm consequently reluctant to say too much, because others here have it worse, but I wouldn't want you to underestimate just how serious it can be.

All of those symptoms I mentioned in the last post are just some of the ways gluten affects me. Living with various unexplained physical and neurological conditions cost me dearly. Some of it was mundane, grinding backpain every day, unexplained and unsightly rashes, endless depression and brain fog. Some of it was terrifying, acute left sided chest pains that mimic the symptoms of a heart attack, loss of eyesight for minutes at a time. Anyone who reacted like I do to gluten and willingly ingested it should in my view be committed to a secure institution.

Hope that clears that up

In regard to the spectrum and the ladder that you mention:

40 minutes ago, casuallythere said:

I am just wondering if you heal your system can you go up or down between stages. I believe there are at least (3) different stages known today.

I can see your reasoning, but I'd suggest you don't actually have the data or the background to formulate a pathology for a subject this complex and as yet opaque. My own view is that there's a very complex interaction taking place within individuals, some of whom will present as 'classic' celiac, others with DH and those like myself without the villious atrophy.

I think we'll eventually find out just what genetic, lifestyle or other factors impact on this and eventually there will indeed be a broad recognised spectrum - but not neccesarily a spectrum that people will move up and down on based on their lifestyle choices. They could be 'hardwired' to react in the way they do. I don't know the answer and I don't think I've come across it definitively stated yet - because, as above, the science on this is very much ongoing.

40 minutes ago, casuallythere said:

The only thing left for me to research in a few years, is the fact can you eat a little gluten here and there, after you fully restore your system.

I've tried to restore my system but never with the objective of reintroducing gluten. I have sufficient first hand experience to put me off that idea. Besides, I'd never enjoy it again in the same way even if there were no immediate symptoms given that I'd always be wondering in the back of my mind if they were going to return.

Another complication is that the immune system can become more sensitive to gluten once its excluded. About a year after going gluten free I took a 'crazy risk' and bought some cornflakes from a supermarket here in the UK. They'd previously been listed as safe in a UK guide and the levels of barley malt in those cereals are generally low. A little while later I started getting a very itchy rash on both my elbows. It didn't take long for me to realise something was amiss and I checked the latest guide and found they no longer appeared on there. Was the rash DH? I'd never had it before going gluten-free and I didnt get it on my challenge, but once I binned the cornflakes it thankfully disappeared. I think my reaction was far more acute than it would've been only a few months before. Purely anecdotal of course, but ultimately all my data these days is

GFinDC · January 23, 2017

Hi CT,

I think it is good that you are going to try going gluten-free. You keep saying you want to try gluten in a few years? Maybe you want to try eating pizza and donuts again in a few years? Or drinking a beer?

The thing is, You don't have to wait a few years to try those things. There are gluten-free pizzas, donuts, bread, beers, and cereals available now, and have been for several years. It seems like there are more gluten-free food options every year. So there is no need to wait a few years, go out and get some of those gluten-free goodies now and live it up!

Ennis-TX · January 23, 2017

20 hours ago, casuallythere said:

I did want to thank you and everyone else. I really appreciate it. I can be a little stubborn. I am sure you and everyone else is right and I am wrong. However, right at this moment our agreeing to disagree actually doesn't matter because I am going on a 100% gluten free strict diet for a few years.

When I get to the point in a few years about "thinking about" re-introducing gluten, hopefully there will be a cure, major break through, or a lot more information. Will see.

Again I have seen you post all over this website and I am sure we are all very thankful. I wish you and everyone else the best. I'm sure will keep everyone posted!

God Bless.

^WRONG Quote (site will not seem to copy the quote that was intended as I meant to do GFinDCs above this one)

I Pm'ed him a bunch of options will post here for others to see there are sources with links, along with a few updates of places I forgot, you can ask local grocery stores to stock them and check the where to buy on the sites. Few of them you can order directly like the spices, gerbs, teas, etc. But there are many more gluten-free options now days then back when many of us started.

As for Pizzia, I went to the last gluten-free Expo in my area.....there were over 6 different gluten-free Pizza makers there some had great reviews so do follow up on that. Most are only in certain areas, but you can order them normally.

Open Original Shared Link

^Ians gluten-free options you will find sides, baked/fried snacks, onion rings, chicken strips, cheese sticks, fish sticks, pizza bread. etc from them that are good subs you can find where to buy them or even have your local grocer stock them on request. Best thing about Ians is you can go to their site and adjust the filter to find stuff free of other ingredients.

Open Original Shared Link

^ Whole lot of food staples from this company (none safe for me) but all gluten-free alternative you can have, udi is like the cheap bargain gluten-free brand alot of there stuff seems lacking but they have a little bit of everything. From microwave dinners, pizzas, granola's, and cookies.

Open Original Shared Link

^CHOOSE the Wheat and Gluten Free buttons to get a list of soups, bone broths, stocks etc these are great for making alot of your own dishes

Open Original Shared Link

^ go to breakfast guys, I keep there cereal in stock for when I have a friend come over.

Open Original Shared Link

^ this is the only ones I can have the soft cookies are great, love their baking mixes, Free of Pretty much all allergens including corn.

Open Original Shared Link

^Love the dried fruit, and pumpkin seeds from these guys, they also have other grains, granola, seeds, etc.

Open Original Shared Link

^Great source for flours, baking ingredients etc. all you basics

Open Original Shared Link

^ I bulk buy oats for my cooking business from these guys only gluten-free oats I trust and the best in the industry for testing, even other companies like Gerbs source from them for the oats

Open Original Shared Link

^ Salt free spices, and pretty much the only spice company I trust, they have many certifications not just gluten-free pretty much the works.

Open Original Shared Link

^Great tea company, all gluten-free certified teas, both bulk and bags.

Open Original Shared Link

^The soups from this company can be a good option for batch soup mixes, I use the dip mixes with coconut yogurt and a few additives to make gluten-free, and Dairy free Veggie dips. They also have some flours and noodles that are gluten-free.

Open Original Shared Link

^ great rice ramen noodles if you need your ramen fix, also have rice, and rice crackers but I prefer lundburg for this.

Open Original Shared Link

^Go to rice guys, WHOLE bunch of instant rice dishes, every cuisine you could want, all gluten-free, they also sell some of the best rice options, rice crackers, rice cakes, even rice chips

These are just some options I prefer grain less options myself I cook for others often as a gluten-free chef and have learned about these over the years of doing so. I personally use kelp noodles, Miracle noodles and Miracle rice as they no carbs for my fix, then just eat a bunch veggies and fats like nuts, seeds, egg whites, and Vegan protein powders protein.

If anyone else needs help finding ingredients or condiments I spend most my days cooking and shopping for side jobs so I know where to find near everything. I can also point you at places to purchase these and other specialty diet needs like soy, dairy, corn, peanut free options and at the best pricing for you area if you want.

TonyDexter · January 23, 2017

a nearby topic has an interesting post

On 22.07.2014 at 3:36 AM, LauraTX said:

Welcome, Robbo!

Your total IgA is low, therefore the tissue transglutaminase (ttg for short) IgA result is invalid as it will not be accurate, in this case it is a false negative. Your ttg IgG is definitely a positive.

Overall, this means you have positive blood antibodies for Celiac disease, so your next step is to get a referral to a GI specialist (unless you already have one) and they will want to perform an upper endoscopy to cement a probable Celiac diagnosis. Keep eating gluten until this step is completed. Many people, including me, don't have obvious outward symptoms of Celiac disease, but the disease is hanging around causing damage. Some people don't realize what their symptoms were until they go away! So there is definitely a possibility your psychological health is being affected by untreated Celiac disease.

His test results are:

IgA 91 - 414 mg/dL 80

Tis Transglutaminase IgA 0 - 3 U/mL <2

And later in the thread other people agreed with this line of thinking. So I'm pretty new here, but if I understand this correctly, overall IgA levels influence the TTG IgA levels. Which essentially means: if overall IgA levels are lower than normal, lower than threshold levels of TTG IgA can be considered positive (in his case). And vice versa: if overall IgA levels are higher than normal, higher than threshold levels of TTG IgA can be considered negative. Now, I understand that Gliadin Peptide IgA test is more reliable than TTG IgA, but since the OP's(*) IgA levels are so much higher than normal shouldn't the same line of thinking apply here as well, at least somewhat? I mean, the average for the range of 68 – 379 is 223,5 which is 3,09 times less than OP's IgA levels (690). If you reduce 20 by 3.08 you'll have around 6.6 which sits incredibly comfortably in the normal range.

Also, about the genes results. It says that 39% of US population carries those type of genes. Using probability theory

1- (1-0.39)*(1-0.39) = 0.6279 ie 62%

62% of the US population carries at least one of the genes associated with the celiac disease. That's HUGE. Coupled with the above line of thinking, which kind of puts the OP's blood tests to negative, it means that if we conclude that he needs to go gluten-free based on the data we have, then 62% of the whole US population should go on a gtuten-free diet as well. Which is rediculous.

CT,

I'm not trying to persuade you. But you might be misinterpreting the data you've got and I would hate if you made your decision based on that.

* - OP means opening poster, if anyone is wondering

edit: typos

kareng · January 23, 2017

25 minutes ago, TonyDexter said:

a nearby topic has an interesting post

His test results are:

IgA 91 - 414 mg/dL 80

Tis Transglutaminase IgA 0 - 3 U/mL <2

And later in the thread other people agreed with this line of thinking. So I'm pretty new here, but if I understand this correctly, overall IgA levels influence the TTG IgA levels. Which essentially means: if overall IgA levels are lower than normal, lower than threshold levels of TTG IgA can be considered positive (in his case). And vice versa: if overall IgA levels are higher than normal, higher than threshold levels of TTG IgA can be considered negative. Now, I understand that Gliadin Peptide IgA test is more reliable than TTG IgA, but since the OP's(*) IgA levels are so much higher than normal shouldn't the same line of thinking apply here as well, at least somewhat? I mean, the average for the range of 68 – 379 is 223,5 which is 3,09 times less than OP's IgA levels (690). If you reduce 20 by 3.08 you'll have around 6.6 which sits incredibly comfortably in the normal range.

Also, about the genes results. It says that 39% of US populations carries those type of genes. Using probability theory

1- (1-0.39)*(1-0.39) = 0.6279 ie 62%

62% of the US population carries at least one of the genes associated with the celiac disease. That's HUGE. Coupled with the above line of thinking, which kind of puts the OP's blood tests to negative, it means that if we conclude that he needs to go gluten-free based on the data we have, then 62% of the whole US population should go on a gtuten-free diet as well. Which is rediculous.

CT,

I'm not trying to persuade you. But you might be misinterpreting the data you've got and I would hate if you made your decision based on that.

* - OP means opening poster, if anyone is wondering

edit: typos

"Any level of IgA above 20 mg/dl should make the tTG-IgA test valid, regardless of age."

Open Original Shared Link

GFinDC · January 24, 2017

2 hours ago, TonyDexter said:

a nearby topic has an interesting post

His test results are:

IgA 91 - 414 mg/dL 80

Tis Transglutaminase IgA 0 - 3 U/mL <2

And later in the thread other people agreed with this line of thinking. So I'm pretty new here, but if I understand this correctly, overall IgA levels influence the TTG IgA levels. Which essentially means: if overall IgA levels are lower than normal, lower than threshold levels of TTG IgA can be considered positive (in his case). And vice versa: if overall IgA levels are higher than normal, higher than threshold levels of TTG IgA can be considered negative. Now, I understand that Gliadin Peptide IgA test is more reliable than TTG IgA, but since the OP's(*) IgA levels are so much higher than normal shouldn't the same line of thinking apply here as well, at least somewhat? I mean, the average for the range of 68 – 379 is 223,5 which is 3,09 times less than OP's IgA levels (690). If you reduce 20 by 3.08 you'll have around 6.6 which sits incredibly comfortably in the normal range.

Also, about the genes results. It says that 39% of US population carries those type of genes. Using probability theory

1- (1-0.39)*(1-0.39) = 0.6279 ie 62%

62% of the US population carries at least one of the genes associated with the celiac disease. That's HUGE. Coupled with the above line of thinking, which kind of puts the OP's blood tests to negative, it means that if we conclude that he needs to go gluten-free based on the data we have, then 62% of the whole US population should go on a gtuten-free diet as well. Which is rediculous.

CT,

I'm not trying to persuade you. But you might be misinterpreting the data you've got and I would hate if you made your decision based on that.

* - OP means opening poster, if anyone is wondering

edit: typos

Hi Tony,

You may be thinking of the total IgA reading. The total IgA test is kind of a grouping test showing the total amount of IgA antibodies of any kind. Some people don't make normal amounts of IgA antibodies at all, so the total (or serum) IgA test is done to determine that IgA deficiency condition. For someone who is found to be IgA deficient, the IgG anitbody tests are looked at. IgA deficiency is more frequent in the celiac population than the general population. Basically, if you are IgA deficient, the IgA tests are no good. The serum IgA test determines that.

deb-rn · January 24, 2017

WOW! For research also look at Leaky Gut and Zonulin. Gluten is bad for EVERYONE. Some people just react in a more obvious way. After going gluten-free 3.5 yrs ago because of some abdominal issues and a negative basic test... husband's IBS got better and we more recently started to look at some other options for living more healthy. We've been dairy, coffee, chocolate and soy free for a while now too. Much research went into all of our decisions. Now we are also egg and pepper limited, no white potatoes, low carb, moderate protein and high fat. If you would have told us 4 yrs ago we would eat this way... we would have said you were crazy! It's all about the research and what different components do to your body over time. Some people have better tolerance for certain foods, but it doesn't mean those foods contribute to health. My husband recently got off most of his medications with this last tweak of our diet! At 72, he feels better than he has in 50+ yrs! Knowing smoking contributes to lung cancer, YOU then have the choice to stop smoking or not. WILL you get cancer... no one can say that for sure. People that don't smoke RARELY get lung cancer. Gluten is really no different. I'd say you're lucky if you have symptoms of anything that leads you to stop exposing yourself to that substance that harms you. So many people have no signs until the cancer, MS, Parkinson's, Lupus... etc appear. Gluten is linked to them all. We have amazing choices in this age. Sometimes we just have to let go of past habits and move on to what will heal us. It's all a choice.

Debbie

casuallythere · January 25, 2017

On 1/22/2017 at 4:28 PM, Jmg said:

I will never knowingly ingest one particle of gluten from this point on till I shuffle off this mortal coil. I know that NCGS does not come with the intestinal issues that many here suffer and I'm consequently reluctant to say too much, because others here have it worse, but I wouldn't want you to underestimate just how serious it can be.

All of those symptoms I mentioned in the last post are just some of the ways gluten affects me. Living with various unexplained physical and neurological conditions cost me dearly. Some of it was mundane, grinding backpain every day, unexplained and unsightly rashes, endless depression and brain fog. Some of it was terrifying, acute left sided chest pains that mimic the symptoms of a heart attack, loss of eyesight for minutes at a time. Anyone who reacted like I do to gluten and willingly ingested it should in my view be committed to a secure institution.

Hope that clears that up

In regard to the spectrum and the ladder that you mention:

I can see your reasoning, but I'd suggest you don't actually have the data or the background to formulate a pathology for a subject this complex and as yet opaque. My own view is that there's a very complex interaction taking place within individuals, some of whom will present as 'classic' celiac, others with DH and those like myself without the villious atrophy.

I think we'll eventually find out just what genetic, lifestyle or other factors impact on this and eventually there will indeed be a broad recognised spectrum - but not neccesarily a spectrum that people will move up and down on based on their lifestyle choices. They could be 'hardwired' to react in the way they do. I don't know the answer and I don't think I've come across it definitively stated yet - because, as above, the science on this is very much ongoing.

I've tried to restore my system but never with the objective of reintroducing gluten. I have sufficient first hand experience to put me off that idea. Besides, I'd never enjoy it again in the same way even if there were no immediate symptoms given that I'd always be wondering in the back of my mind if they were going to return.

Another complication is that the immune system can become more sensitive to gluten once its excluded. About a year after going gluten free I took a 'crazy risk' and bought some cornflakes from a supermarket here in the UK. They'd previously been listed as safe in a UK guide and the levels of barley malt in those cereals are generally low. A little while later I started getting a very itchy rash on both my elbows. It didn't take long for me to realise something was amiss and I checked the latest guide and found they no longer appeared on there. Was the rash DH? I'd never had it before going gluten-free and I didnt get it on my challenge, but once I binned the cornflakes it thankfully disappeared. I think my reaction was far more acute than it would've been only a few months before. Purely anecdotal of course, but ultimately all my data these days is

Yes I agree that NCGS or Celiac does present major issues. One of my articles above mention that "slient Celiac" or NCGS is actually worse than Celiac because it can be left UN-daignosed leaving the person exposed. I personally kind of feel like I am in this category. My body has been fighting something for 5 years or more. None of my Doctors really had a clue, then did nothing. Only when I brought my Dad in the picture, did they wake up. Also my Dad had to research it himself. His Doctor had no idea.

This is sad.

I do think if your body has massive stress on it without you really being aware of it, it can leave you open to other problems because it is to busy fighting i.e. Gluten.

In regards to my ladder theory, you are correct, I have no medical background or any evidence. I am just dealing with a gut feeling, no pun intended. I just find it hard to believe if I was to heal my system 3-5 years from now, and my villi is 100% healed. I believe you can ingest a small amount of gluten if your body does not overreact to it, whether you have Celiac or NCGS.

For example my dad was screaming on the ground in pain, he got off gluten and was healed overnight, been off for years, eats small amounts of gluten and is perfectly fine. I wish someone to explain this? This is my smoking or drinking theory. However, if you are allergic like peanut allergy to gluten you do not have this option.

I will have to see if my body has the same reaction as you when I go back on gluten accident or not. I do not think I will have a bad reaction but you never know.

On 1/22/2017 at 9:46 PM, GFinDC said:

Hi CT,

I think it is good that you are going to try going gluten-free. You keep saying you want to try gluten in a few years? Maybe you want to try eating pizza and donuts again in a few years? Or drinking a beer?

The thing is, You don't have to wait a few years to try those things. There are gluten-free pizzas, donuts, bread, beers, and cereals available now, and have been for several years. It seems like there are more gluten-free food options every year. So there is no need to wait a few years, go out and get some of those gluten-free goodies now and live it up!

Yes you are 100% right, I was at the grocery store before you wrote that and we do have a rather large gluten free section in our grocery store. I got cereal, pizza, all kinds of deserts and even cup cakes. Yes you are are correct, there is much, much more gluten free stuff out there because this must becoming a much more bigger problem than people expect. Like one of the comments above, maybe the population is 32 or 64 percent and the scientist know that his is a world wide problem but besides of having mass panic everywhere and a food shortage they are keeping this quiet letting people get sick.

I'll need to find those donuts and beers. lol.

Definitely like the idea of living it up now. I have been gluten free for like a month and have been buying all kinds of stuff. Life doesn't seem like it will change to much, but restaurants and random food being offered has been kind of tough.

But I will say one thing. I wouldn't mind any of this because I feel night and day different. I mean I feel like a new person. Usually when I skip food I get a pounding head ache. I mean as soon as I stopped eating gluten every single symptom I think I have had has gone away 100 percent. I haven't had 1 head ache.

On 1/23/2017 at 5:28 AM, Ennis_TX said:

^WRONG Quote (site will not seem to copy the quote that was intended as I meant to do GFinDCs above this one)

I Pm'ed him a bunch of options will post here for others to see there are sources with links, along with a few updates of places I forgot, you can ask local grocery stores to stock them and check the where to buy on the sites. Few of them you can order directly like the spices, gerbs, teas, etc. But there are many more gluten-free options now days then back when many of us started.

As for Pizzia, I went to the last gluten-free Expo in my area.....there were over 6 different gluten-free Pizza makers there some had great reviews so do follow up on that. Most are only in certain areas, but you can order them normally.

Open Original Shared Link

^Ians gluten-free options you will find sides, baked/fried snacks, onion rings, chicken strips, cheese sticks, fish sticks, pizza bread. etc from them that are good subs you can find where to buy them or even have your local grocer stock them on request. Best thing about Ians is you can go to their site and adjust the filter to find stuff free of other ingredients.

Open Original Shared Link

^ Whole lot of food staples from this company (none safe for me) but all gluten-free alternative you can have, udi is like the cheap bargain gluten-free brand alot of there stuff seems lacking but they have a little bit of everything. From microwave dinners, pizzas, granola's, and cookies.

Open Original Shared Link

^CHOOSE the Wheat and Gluten Free buttons to get a list of soups, bone broths, stocks etc these are great for making alot of your own dishes

Open Original Shared Link

^ go to breakfast guys, I keep there cereal in stock for when I have a friend come over.

Open Original Shared Link

^ this is the only ones I can have the soft cookies are great, love their baking mixes, Free of Pretty much all allergens including corn.

Open Original Shared Link

^Love the dried fruit, and pumpkin seeds from these guys, they also have other grains, granola, seeds, etc.

Open Original Shared Link

^Great source for flours, baking ingredients etc. all you basics

Open Original Shared Link

^ I bulk buy oats for my cooking business from these guys only gluten-free oats I trust and the best in the industry for testing, even other companies like Gerbs source from them for the oats

Open Original Shared Link

^ Salt free spices, and pretty much the only spice company I trust, they have many certifications not just gluten-free pretty much the works.

Open Original Shared Link

^Great tea company, all gluten-free certified teas, both bulk and bags.

Open Original Shared Link

^The soups from this company can be a good option for batch soup mixes, I use the dip mixes with coconut yogurt and a few additives to make gluten-free, and Dairy free Veggie dips. They also have some flours and noodles that are gluten-free.

Open Original Shared Link

^ great rice ramen noodles if you need your ramen fix, also have rice, and rice crackers but I prefer lundburg for this.

Open Original Shared Link

^Go to rice guys, WHOLE bunch of instant rice dishes, every cuisine you could want, all gluten-free, they also sell some of the best rice options, rice crackers, rice cakes, even rice chips

These are just some options I prefer grain less options myself I cook for others often as a gluten-free chef and have learned about these over the years of doing so. I personally use kelp noodles, Miracle noodles and Miracle rice as they no carbs for my fix, then just eat a bunch veggies and fats like nuts, seeds, egg whites, and Vegan protein powders protein.

If anyone else needs help finding ingredients or condiments I spend most my days cooking and shopping for side jobs so I know where to find near everything. I can also point you at places to purchase these and other specialty diet needs like soy, dairy, corn, peanut free options and at the best pricing for you area if you want.

You have been a tremendous hep with amazing resources. Thank you very much. I will definitely organizing these and figuring it out when I have more time. I don't think I will ever get to your cooking level because I don't cook and hate it. But maybe I will have to now. Thanks so much for all of your help.

On 1/23/2017 at 5:49 PM, TonyDexter said:

a nearby topic has an interesting post

His test results are:

IgA 91 - 414 mg/dL 80

Tis Transglutaminase IgA 0 - 3 U/mL <2

And later in the thread other people agreed with this line of thinking. So I'm pretty new here, but if I understand this correctly, overall IgA levels influence the TTG IgA levels. Which essentially means: if overall IgA levels are lower than normal, lower than threshold levels of TTG IgA can be considered positive (in his case). And vice versa: if overall IgA levels are higher than normal, higher than threshold levels of TTG IgA can be considered negative. Now, I understand that Gliadin Peptide IgA test is more reliable than TTG IgA, but since the OP's(*) IgA levels are so much higher than normal shouldn't the same line of thinking apply here as well, at least somewhat? I mean, the average for the range of 68 – 379 is 223,5 which is 3,09 times less than OP's IgA levels (690). If you reduce 20 by 3.08 you'll have around 6.6 which sits incredibly comfortably in the normal range.

Also, about the genes results. It says that 39% of US population carries those type of genes. Using probability theory

1- (1-0.39)*(1-0.39) = 0.6279 ie 62%

62% of the US population carries at least one of the genes associated with the celiac disease. That's HUGE. Coupled with the above line of thinking, which kind of puts the OP's blood tests to negative, it means that if we conclude that he needs to go gluten-free based on the data we have, then 62% of the whole US population should go on a gtuten-free diet as well. Which is rediculous.

CT,

I'm not trying to persuade you. But you might be misinterpreting the data you've got and I would hate if you made your decision based on that.

* - OP means opening poster, if anyone is wondering

edit: typos

I like the way you think.

I believe you are probably more right than a lot of people think. Lets not forget about the Chaos Theory, many outcomes and many random things can occur. Also the healing power of Spiritual Belief and prayer.

However, besides that, I believe you are right. I believe this is an epidemic that the medical society is brushing under the rug until enough people get sick, they are slowing ramping up gluten products but they are profiting off it first like computer hardware. They don't release everything at once, they stagger it a little bit at a time and make tons of money of it before it becomes common.

Also maybe our bodies as a society will always reject certain things as a common whole over time like antibiotics.

I know all this sounds crazy but it is fun to think about different theories/conspiracies .

In any case.

I agree with you. I do not believe I have Celiac, nor a high probability of getting it. However, my personal story with my Father in pain it is enough for me to stay off gluten. I will 100%. I do not want to develop it because I have the Gene. However at the moment I am in full disagreement with most people on this forum.

I believe if you heal your villi 100%, stay of gluten for years, and then after you heal, in my case I believe you will not die having a piece of pie, a hamburger, or what not. I even believe if you have Celiac, you can do this. The difference is that 99% of gluten will be out of my system. I mean like I have stated before I ate a lot of gluten, I mean truck loads. That is why my system was over taxed. However, if I eliminate all this will dramatically heal my system.

I do feel each person will have to decide for themselves. However, they will have a tough time, because I have 5 years worth of information, very good health care and Doctors in a large city, and a Father who has gone through it and I feel like I know nothing.

It is to knew or they are keeping it under the rug. I feel my next move is that I will have to contact a Specialist that deals only in gluten. show them all of my results or have them pull fresh ones. However, this is probably the best route.

I will probably not do this though because I know I need to stay of gluten. I feel to amazing to do anything else.

Bottom line I agree with you, my Dad was on the floor screaming in pain, he needed to go Gluten free. I am not. I believe everyone whether they have gluten intolerance, mild celiac, regular celiac, advance celiac, everyones intolerance will be different. You need to know your own body. This is not a life threatening disease. If you manage it you will be fine. Yes I know some people say that you can die from it, however that is if you grossly leave it unchecked. Anyone who has the symptoms will not do that if they have common sense.

I deal with this every day, people always over exaggerate to make a point because they know people will break all the rules. People don't understand grey areas. They only understand black and white.

In regards to the other posters IgA level being really low, I personal believe this is the classic example of a crashed system. After the body fights and fights for so long it eventually gives up and crashes. This is a classic sign of true celiac I believe and that your system has given up. System needs to be healed and all gluten needs to be exited. I believe my system was heading in that direction, I just hope I caught it before it went all the way.

Thanks for the different angle. I really appreciate it.

On 1/23/2017 at 6:16 PM, kareng said:

"Any level of IgA above 20 mg/dl should make the tTG-IgA test valid, regardless of age."

Open Original Shared Link

Yes. I believe however high means your system is fighting and low means it has given up.

On 1/23/2017 at 7:57 PM, GFinDC said:

Hi Tony,

You may be thinking of the total IgA reading. The total IgA test is kind of a grouping test showing the total amount of IgA antibodies of any kind. Some people don't make normal amounts of IgA antibodies at all, so the total (or serum) IgA test is done to determine that IgA deficiency condition. For someone who is found to be IgA deficient, the IgG anitbody tests are looked at. IgA deficiency is more frequent in the celiac population than the general population. Basically, if you are IgA deficient, the IgA tests are no good. The serum IgA test determines that.

Yes. My Doctor also said that people can have outliers, like in my case. I have no major health problem buy my IgA is 680. So on a bell curve you will have outliers. The other person could just be lower and normal. It is a possibility. These results are for millions and millions of people. That is why a weak positive could mean absolutely nothing.

The only way to know for sure is to have like 4 to 5 samples per each of 2 to 3 Biopsy's. Not just one Biopsy.

11 hours ago, deb_rn said:

WOW! For research also look at Leaky Gut and Zonulin. Gluten is bad for EVERYONE. Some people just react in a more obvious way. After going gluten-free 3.5 yrs ago because of some abdominal issues and a negative basic test... husband's IBS got better and we more recently started to look at some other options for living more healthy. We've been dairy, coffee, chocolate and soy free for a while now too. Much research went into all of our decisions. Now we are also egg and pepper limited, no white potatoes, low carb, moderate protein and high fat. If you would have told us 4 yrs ago we would eat this way... we would have said you were crazy! It's all about the research and what different components do to your body over time. Some people have better tolerance for certain foods, but it doesn't mean those foods contribute to health. My husband recently got off most of his medications with this last tweak of our diet! At 72, he feels better than he has in 50+ yrs! Knowing smoking contributes to lung cancer, YOU then have the choice to stop smoking or not. WILL you get cancer... no one can say that for sure. People that don't smoke RARELY get lung cancer. Gluten is really no different. I'd say you're lucky if you have symptoms of anything that leads you to stop exposing yourself to that substance that harms you. So many people have no signs until the cancer, MS, Parkinson's, Lupus... etc appear. Gluten is linked to them all. We have amazing choices in this age. Sometimes we just have to let go of past habits and move on to what will heal us. It's all a choice.

Debbie

I agree with you 100% Debbie. This is my conclusion. I will be going gluten free just because its horrible, and my system hates it, regardless of I have Celiac or Not. I'm just not going to never have it again. If someone has a lemon pie with normal crust lying around I'll probably eat it. However I say this now, but after going gluten free for like a month, its like a game to me now. I just want to eat everything that doesn't have gluten. Maybe I'll just stay this way.

I even bought Lactose free milk by the gallon x2, and with gluten free I feel like a million bucks. Truly amazing.

I agree. I have read that a lot. You can eat like crap and go on meds, or you can change your diet and get off meds. The choice is really up to you. Doctors will give or do anything you want. They are in it for the money.

Exactly, I am lucky that I had enough symptoms that got me to get off of it. Whether I have celiac or not, well I have my Dad as well. But I could have lived my whole life will all the symptoms that I have had in all of my threads, but I can honestly say for a month now I have had zero symptoms and feel amazing.

I also agree that "Silent Celiac" is very dangerous and that is why I had my sister schedule an appointment with the Doctor next month to get herself checked out for Celiac.

emma6 · January 25, 2017

1 hour ago, casuallythere said:

I believe if you heal your villi 100%, stay of gluten for years, and then after you heal, in my case I believe you will not die having a piece of pie, a hamburger, or what not. I even believe if you have Celiac, you can do this. The difference is that 99% of gluten will be out of my system. I mean like I have stated before I ate a lot of gluten, I mean truck loads. That is why my system was over taxed. However, if I eliminate all this will dramatically heal my system.

I think this demonstrates that you still don't have a proper understanding of how celiac disease works. you can't just make up a theory and decide that's how it works. having a small amount of gluten now and then is still going to trigger an autoimmune reaction, make a person's antibody levels rise and attack their body. which can take weeks or months for them to go down. that is why cross contamination is such an issue.

just because someone isn't screaming in pain doesn't mean damage is not being done inside their body. people can have no symptoms and damaged villi.

if anything I would think eating gluten after years of not eating it would result in a stronger reaction for example how many people feel worse doing gluten challenge after not having it for a while.

Jmg · January 25, 2017

9 hours ago, casuallythere said:

n regards to my ladder theory, you are correct, I have no medical background or any evidence. I am just dealing with a gut feeling, no pun intended. I just find it hard to believe if I was to heal my system 3-5 years from now, and my villi is 100% healed. I believe you can ingest a small amount of gluten if your body does not overreact to it, whether you have Celiac or NCGS.

Emma above has already made this point but forgive me if I repeat it as its really important.

You are confusing two very different things, the physical damage to the gut which celiac can CAUSE and the immune reaction to Gluten which is inherent in the disease itself.

Your right that years on the gluten-free diet can and hopefully will help heal the villi, and that in turn will hopefully improve your health in many ways, for example allowing reintroduction of dairy or improving your absorption of nutrients.

What it won't do is affect the way yr immune system identifies gluten as a threat. This is the process which begins the harm in the first place. This is the process which you are planning to restart once the healing process is well underway in the erroneous belief that healing the villi will in some way affect your immune response.

Apply this reasoning to any other medical symptom. Does having a cancerous lung removed make it OK to resume smoking? No, because just because the damage is no longer there does not mean that new damage cannot be caused.

There is a lot out there concerning healing yr gut and a lot of progress you could make in improving the barrier, reducing permeability etc. Number one of which of course if removing all gluten from yr diet for life, but other things which may help. None of which changes the fundamental truth of celiac.

Your celiac diagnosis means that your immune system sees gluten as a threat. Removing it from yr diet could well make your system even more reactive to small amounts. Going back to it once healing is done may be intuitively consistent with your beliefs, but your beliefs are just that, your beliefs. They don't coincide with the science, they don't coincide with best practice, they are not consistent with sound reasoning. Bad beliefs should be challenged and so please take note of what has been said here. There are many grey areas in this subject but there are also things which are known. Look again at the quote I included above and follow the link back to read the report it's based on. That's cold objective science at work. Not intuition.

Best of luck

deb-rn · January 25, 2017

I think the fact that his Dad eats occasional gluten purposely and "has no reaction" is clouding the issues here. Also from the very beginning has been the idea that he could get people to verify this idea that he can and should one day eat gluten containing foods again. That notion is for another forum, not here where people come for real help for a real physiological problem. The scientific facts prove that gluten causes problems in humans... ALL humans! Some of us just suffer outward symptoms and others inward. I thank GOD I had symptoms that led me down this path of healing.

The analogy of smoking after having a lung removed due to cancer is spot on!

Debbie

casuallythere · January 25, 2017

10 hours ago, emma6 said:

I think this demonstrates that you still don't have a proper understanding of how celiac disease works. you can't just make up a theory and decide that's how it works. having a small amount of gluten now and then is still going to trigger an autoimmune reaction, make a person's antibody levels rise and attack their body. which can take weeks or months for them to go down. that is why cross contamination is such an issue.

just because someone isn't screaming in pain doesn't mean damage is not being done inside their body. people can have no symptoms and damaged villi.

if anything I would think eating gluten after years of not eating it would result in a stronger reaction for example how many people feel worse doing gluten challenge after not having it for a while.

2 hours ago, Jmg said:

Emma above has already made this point but forgive me if I repeat it as its really important.

You are confusing two very different things, the physical damage to the gut which celiac can CAUSE and the immune reaction to Gluten which is inherent in the disease itself.

Your right that years on the gluten-free diet can and hopefully will help heal the villi, and that in turn will hopefully improve your health in many ways, for example allowing reintroduction of dairy or improving your absorption of nutrients.

What it won't do is affect the way yr immune system identifies gluten as a threat. This is the process which begins the harm in the first place. This is the process which you are planning to restart once the healing process is well underway in the erroneous belief that healing the villi will in some way affect your immune response.

Apply this reasoning to any other medical symptom. Does having a cancerous lung removed make it OK to resume smoking? No, because just because the damage is no longer there does not mean that new damage cannot be caused.

There is a lot out there concerning healing yr gut and a lot of progress you could make in improving the barrier, reducing permeability etc. Number one of which of course if removing all gluten from yr diet for life, but other things which may help. None of which changes the fundamental truth of celiac.

Your celiac diagnosis means that your immune system sees gluten as a threat. Removing it from yr diet could well make your system even more reactive to small amounts. Going back to it once healing is done may be intuitively consistent with your beliefs, but your beliefs are just that, your beliefs. They don't coincide with the science, they don't coincide with best practice, they are not consistent with sound reasoning. Bad beliefs should be challenged and so please take note of what has been said here. There are many grey areas in this subject but there are also things which are known. Look again at the quote I included above and follow the link back to read the report it's based on. That's cold objective science at work. Not intuition.

Best of luck

50 minutes ago, deb_rn said:

I think the fact that his Dad eats occasional gluten purposely and "has no reaction" is clouding the issues here. Also from the very beginning has been the idea that he could get people to verify this idea that he can and should one day eat gluten containing foods again. That notion is for another forum, not here where people come for real help for a real physiological problem. The scientific facts prove that gluten causes problems in humans... ALL humans! Some of us just suffer outward symptoms and others inward. I thank GOD I had symptoms that led me down this path of healing.

The analogy of smoking after having a lung removed due to cancer is spot on!

Debbie

See this is where all of you are missing the point. Since you say smoking and cancer is just a great analogy well here you go. This is the exact point that I have been making all along. Please see article and link below.

SMOKING - Alone can ...

It may also turn the immune system against the body’s own cells. Some smokers which experience severe or chronic lung disease may be suffering from an autoimmune response, meaning their immune systems are attacking lung tissue.

However! Just like we all know. Some people can smoke, and smoke, and smoke till their 90 and never develop cancer, and die from other causes. This is the exact same thing with Celiac or Gluten Insensitivity and no one here can prove otherwise.

Gluten you say turns your system against you? Well so does smoking. Look at it this way. If a row boat with two guys is attacking your country with a few pistols, are you going to send your entire national guard, warships, and launch your nukes? No! You are going to send out a few cops, maybe a couple of soldiers, something small. Now, on the other hand, if that row boat turns into a FLEET of ships of your coast, then you might sound the national alarm and activate your military and go on full defense and attack.

This is like gluten. If you ingest massive amounts of gluten with no regard to your condition you will in fact be like that Fleet on your coast of your country, and you will lose, and eventually your IgA will plummet. However, if just a row boat is attacking once you are fully healed, your entire system is not going to to be launched, just a few troops here and there.

The difference is someone who does not have either of the genetic genes, gluten can just walk right into the country and hang out right in the middle and no one would ever care. However, according to Debbie, gluten could be an "Assassin" and have a one shot kill on you, and you would never know it.

I have asked a lot of people about this on other forums and no one can give me evidence otherwise.

Of course its common sense, a Doctor is going to tell you ... Smoking can kill you, don't smoke, you have a problem with gluten, stop eating it. I mean we don't even have to go to the Doctor for that information.

Yes the big reason I am thinking this is because my Dad eats a little gluten here and there and he was in much worse condition than me. He just doesn't even care enough to research near like I do. He has had this condition for like 10 years, and I have researched more than he did in 10 years, in 2 months.

Bottom line is, its your call, this is a new problem that Doctors have no clue about, and everyone should see a specialist in regards to it. A specialist that deals with Gluten ONLY! I will do this when I have more time. However all I know is that like I have said many, many times, I feel so much better and I love being gluten free.

Open Original Shared Link

How Smoking Affects the Immune System

The negative effects of smoking are well documented, with medical researchers all agreeing that tobacco products are bad news when it comes to overall health. Heart disease, lung cancer, COPD, stroke – these are just a few of the conditions linked to tobacco use.

There are other health consequences to smoking that you may not equate with using tobacco products. While having a heart attack or being diagnosed with lung cancer are obvious consequences of smoking that would immediately get your attention, there are more subtle health issues that may already be manifesting themselves in your everyday life.

Smoking and the Immune System

That cold you just can’t seem to shake might actually be hanging around due to your smoking habit. Not only does smoking cause serious health conditions like cancer, but it also lessens your body’s immune response, making you more susceptible to infections. You may also find it harder to shake everyday illnesses that are no big deal to most healthy adults. Tobacco products damage virtually every system of the body, and the immune system is no different.

Ways Smoking Affects the Immune System

Smoking may negatively affect the immune system in a variety of ways:

Higher risk of respiratory infections: It’s no surprise that smoking increases one’s risk of developing respiratory illnesses, such as bronchitis or pneumonia, according to Open Original Shared Link. This is due to tobacco smoke’s immune suppressing effects, as well as smoke entering and damaging delicate lung tissues.

More frequent infections and prolonged illness: Smoking damages and destroys antibodies in the blood stream. Antibodies normally help fight off infectious illnesses, but since smokers have fewer of these antibodies available, they may experience more severe infections and they may remain sick longer than non-smokers. Wounds and sports-related injuries also take longer to heal for smokers than for non-smokers.

Fewer available antioxidants: Smoking destroys antioxidants in the body, such as vitamin C. Antioxidants help kill free radicals, or cells responsible for causing cancer.

Autoimmunity: According to Open Original Shared Link, and the University of Cincinnati, smoking not only weakens immune response when it comes to fighting off infections. It may also turn the immune system against the body’s own cells. Some smokers which experience severe or chronic lung disease may be suffering from an autoimmune response, meaning their immune systems are attacking lung tissue.

Preventing Immune System Disorders

Despite the risks, there are things smokers can do to reduce the risk of these negative outcomes.

Eat right: Eating a healthy diet to replenish lost vitamins and minerals may help keep you healthy

Exercise: Exercising improves oxygenation of the bloodstream and benefits cardiovascular function, both of which keep the immune system stronger

Get outdoors: Vitamin D helps boost immune function, and getting 10 to 15 minutes of sunlight per day helps the body create its own stores of this vitamin.

Supplement: In some cases, supplementation with vitamin C and other immune boosting vitamins may be beneficial.

Avoid exposures: Stay away from areas where infectious disease are known to spread as much as possible, especially during outbreaks. If you know someone who has been sick, avoid that person until they are no longer contagious if possible.

Quit: This is the best way to improve immune function. Quitting is now more possible than ever with smoking cessation aids being available to those who want to stop smoking for good. Luckily, the body’s immune function will begin to improve right away after quitting.

kareng · January 25, 2017

I haven't been able to get a straight answer about his dad. so what if he eats glutened and has no issues? He hasn't been diagnosed with Celiac from what I can gather from all these posts. So I don't think that's a real good reason for others to follow this's guys belief system or " theories" of Celiac disease.

We have given him our opinions and links to reliable info about Celiac disease on 2 recent threads and in his previous incarnation as Astrongtower. He can read and decide what he wants to " believe". I doubt anything else we say will change his mind.

casuallythere · January 25, 2017

41 minutes ago, kareng said:

I haven't been able to get a straight answer about his dad. so what if he eats glutened and has no issues? He hasn't been diagnosed with Celiac from what I can gather from all these posts. So I don't think that's a real good reason for others to follow this's guys belief system or " theories" of Celiac disease.

We have given him our opinions and links to reliable info about Celiac disease on 2 recent threads and in his previous incarnation as Astrongtower. He can read and decide what he wants to " believe". I doubt anything else we say will change his mind.

Like I have said in all of my previous posts.

I am not a medical doctor.

I am probably wrong.

Yes my Dad never received a Biopsy so we can not know for absolute certainty.

This is purely my opinion.

I may be in denial.

There are probably a hundred of other things I haven't thought about.

I have never asked for anyone to follow my beliefs or theories.

I mentioned before that I am stubborn.

...

My main point is, that a lot of people are saying listen to your body, that is what I want to do. If I feel that if I heal up a 100% and everything is going well. I might try a little gluten and if I don't die, that will be great. My body might seem to be okay, by listening to it, I might proceed to have a lemon pie with gluten crust.

squirmingitch · January 25, 2017

And I agree with Karen. You're a troll. I am un-watching this thread.

To my fellow celiacs and NCGS on this board:

This is only my opinion but continuing to answer or reply to this person will only exacerbate his/her continued arguments. This person wants to cause disruption. I will not be a party to it & I advise none of the rest of you to either.

casuallythere · January 25, 2017

18 minutes ago, squirmingitch said:

And I agree with Karen. You're a troll. I am un-watching this thread.

To my fellow celiacs and NCGS on this board:

This is only my opinion but continuing to answer or reply to this person will only exacerbate his/her continued arguments. This person wants to cause disruption. I will not be a party to it & I advise none of the rest of you to either.

WoW. Troll?

I think not. You are just trying to provoke me to get me banned. If that's how you guys feel then just ban me.

Some support you are anyhow. You can clearly see my results and what have I have gone through. I have REAL proof that I have gone through all of this, with my Dad and myself. Not just results that I retyped on here. I have the ones actually from the Doctors and Labs.

I just said I might be in Denial. Obviously you don't know anything about the human mind and how deep it can go into a rabbit hole.

So yes, please unsubscribe and no longer post in my thread again. One less UN-thankful supporter to a new possible person who has gluten problems. Whether I am wrong or right.

Just like everywhere else on the net. If you challenge anyone's ideas, they get all upset and start being mean calling you names. How childish.

TonyDexter · January 26, 2017

On 24.01.2017 at 5:00 PM, deb_rn said:

WOW! For research also look at Leaky Gut and Zonulin. Gluten is bad for EVERYONE. Some people just react in a more obvious way.

Thanks, I didn't know that. I think this idea kind of explains the source of some miscommunication at least in this thead. Using the smoking analogy:

Lets suppose there is a genetic condition, which causes people to have an autoimmune reaction to smoking. The reaction is delayed or hidden (or both), and can be hard to pair up with smoking itself, but its there. And there is the rest of the population, without this condition, who have a normal consistent small negative reaction to every episode of smoking. Though both groups would benefit from abandoning smoking and watch their health improve over time (lets assume if its not the case), the second group can go back to smoking occasionally and not notice any immediate changes, while the first group would suffer greatly.

So this is why it is extremely important to have a proper testing done before commiting to a gluten-free diet. Not only one will know for sure what exactly will be the consequences of relapsing. But it also makes sure that people who are not celiac do not identify themselves as such and not spread potentially very harmful misinformation about this condition here, and in the real world.

TonyDexter · January 27, 2017

On 24.01.2017 at 5:00 PM, deb_rn said:

WOW! For research also look at Leaky Gut and Zonulin. Gluten is bad for EVERYONE. Some people just react in a more obvious way. After going gluten-free 3.5 yrs ago because of some abdominal issues and a negative basic test... husband's IBS got better and we more recently started to look at some other options for living more healthy. We've been dairy, coffee, chocolate and soy free for a while now too. Much research went into all of our decisions.

gluten- soy- and dairy- free kind of looks like a low FODMAPs diet. Coffee can cause a number of issues, I personally got rid of it since I was feeling it was behind my gastritis problems. Whats the deal with chocolate though?

deb-rn · January 27, 2017

Chocolate has caffeine for one thing and isn't tolerated by my husband for another. It is rather empty in terms of benefit/calorie ratio. There is also a problem with the source and quality of the beans. If not cured/stored properly there is a mold toxin issue. We've done without and will probably continue to do so. The same mold toxins are responsible for a lot of coffee beans too.

Debbie

Posterboy · January 28, 2017

casuallythere,

Thank you for your ideas.

As far as whether you have NCGS or Celiac disease one word - time is all that is needed to explain your test results.

Or maybe better said you may not have Celiac YET but in time if you keep eating gluten you will if it continues to be undigested in the stomach and reaches the villi in your small intestine.

You seem to be a good researcher.

This is new research that explains the best I have seen about the difference between a NCGS diagnosis and a Celiac diagnosis.

Open Original Shared Link

I summarized why I think this is so in this link from another poster Fyremaker that had a similar question as yours in this topic thread.

Quoting from the thread (read the whole thread for yourself) as quoted form the care2 site reporting this new research.

"People with suspected celiac are Open Original Shared Link that looks for anti-gluten antibodies. The disease is then diagnosed with an intestinal biopsy showing this damage. However, celiac patients do not have an associated spike in their blood markers indicating high immune activity.

This is where NCGS patients differ. While these patients don’t show the same kind of damage when they’re given a biopsy, their blood panels tell a completely different story. This group showed a spike in blood markers associated with intestinal damage unlike anything seen in the celiac or control group. They also showed a systemic immune reaction after consuming wheat, which is a major difference from the more limited immune reaction of celiac patients."

If you continue to eat gluten and it is undigested in the stomach then celiac disease will develop in time in your small intestine.

So why wouldn't you remove it now before there is enough damage to get a "biospy confirmed" celiac diagnosis.

It is my opinion waiting for a biopsy to prove what the blood serology is telling you is playing with fools gold.

Though controversial on this site and not without controversy among doctor's some doctor's now at least realize and advocate for serology confirmed diagnosis' as the best way to ward off future and more complicated disease manifestations associated with a full blow "biopsy proven" celiac disease diagnosis.

For my money NCGS is enough to confirm a diagnosis by that I mean in the absence of a "biopsy proven" diagnosis.

Research indicates that as a NCGS there is a 90+ percent chance in time (how long we do not know) you will develop a "biopsy proven" celiac diagnosis.

See this link https://www.celiac.com/articles/24448/1/Gluten-Definitely-Triggers-Symptoms-in-Some-NCGS-Patients/Page1.html

Dr. Mark Hyman over 5+ years ago concluded "positive is positive" even in the absence of a biopsy proven diagnosis.

Here is the huffpost article where he discuses this.

Open Original Shared Link

quoting Dr. Hyman from the article " Intestinal biopsy (rarely needed if gluten antibodies are positive—based on my interpretation of the recent study) . . .

Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be “false positives.” That means the test looks positive but really isn’t significant.

We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease. If your antibodies are elevated, you should go off gluten and test to see if it is leading to your health problems."

Dr. Whitney Ford concludes the same thing when he says "Biopsy is not the Gold Standard" (my words it once was).

See where he talks about this extensively at this link.

Open Original Shared Link

Also so this link where Dr. Ford talks about the "Masking of Celiac" that is very informative.

https://www.celiac.com/articles/23853/1/The-Masking-of-Celiac-Do-Not-Ignore-the-Smoking-Gun/Page1.html

Many of these same issues are talked about in this thread and are summarized when you have more time to do research read the whole post it a 40+ post thread and I think it will help you (and it is a kind of heated thread like this one) but remember we spend our time on this forum to help others who come along behind us. See this link about the Starfish by Loren Eisley Open Original Shared Link

I actually think it (NCGS/Celiac) could be being misdiagnosed in as many as 50 percent of Celiac's according to research I have done.

Here is a link to the International Journal of Celiac Disease (IJCD) that indicates Pellagra is Co-Morbid often in Celiac patients.

Link provided Open Original Shared Link

Where the IJCD notes concerning Pellagra and Celiac Disease

Quoting "The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies ^{[Open Original Shared Link, Open Original Shared Link]}. Alternatively, Pellagra was described in celiac disease ^{[Open Original Shared Link}

Indicating to me at least that there is a 50/50 chance that taking Niacinamide might help your NCGS.

Prousky proposed this possibility 15+ years ago and no researchers have followed up on his limited study of the topic.

I usually on provide the abstract but will provide the whole citation here for your research casuallythere

It is about a 10 page article if your print it out.

Open Original Shared Link

If you want to read more about this topic/possibility celiac.com recently published an article about this topic in their 2017 Winter Issue that discuses this in more detail.

https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html

It doesn't mean you have Pellagra or that it will help your GI problems but it seems plausible to me that it might help.

And that is what we all trying to do on this forum/board though it might seem we all have strong opinions. It is just those opinions that have helped us get to where we are in life.

We are all on a journey . . . some of us just are in a different spot along the way.

good luck on your journey casuallythere and I hope this is helpful.

Sorry for the long post. . . I can't seem to write a short one enough to not make it kinda long.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

posterboy by the grace of god,

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