MsCurious

i'll have to hunt for the link later, as i am running to work.. but i had read that there were thousands or tens of thousands of proteins in wheat.. that there were more different proteins in wheat than there were in the human body... and that most animals and humans have not evolved to digest it

Good grief! No wonder its making us all so sick! (sheesh,I wonder if that's what's making our dog sick) Thanks for the info Cass.

Current testing methods miss a lot of people both for Celiac and overall Gluten Syndrome. You can get anti-gliadin tests run or find a doctor who will work with Cyrex labs and get the Ten protein test done through them. I am non-celiac gluten sensitive and had positive anti-gliadin anti-bodies when tested. I am also getting the ten protein and autoimmunity test done to see what other proteins I am reacting to in Wheat (there are 70 total).

The best and cheapest test you can do is to try the diet 100% for one month and see how you feel. IBS and feeling like crap in general are very closely linked to gluten as the culprit as are other auto-immune disorders, diabetes, heart disease and cancer.

Your body is the most sensitive test equipment out there. Give it a go and see how you feel. I'd be willing to bet you will see a vast improvement.

:hugs:

Let us know how it goes and please use us as a resource/support along the way!

Thanks Cypressmyst. A lot of the things you talk about here are things I have been trying to sort through. You said you're getting tested for more things... so does that mean you're on gluten right now? Did you have to go back to it for the testing? How did you get tested for NCGS? Did your doctor suggest it, or did you have to twist doc's arm to get the testing done? I had heard that they are making progress with finding tests to identify the non-celiac gluten sensitive people. It kind of feels like we're a lost bunch. It's amazing now that I've identified gluten as the "other" culprit how I look at things as poison, rather than something I want to eat. I'm sure that will change back again when I can figure out and learn all the flour substitutes, etc. That's another thing... guess I need to find some good cookbooks. Thanks again for your supportive words. Thanks for taking the time to share your knowledge with me.

This is actually the place to 'dump' your feelings. I know how you feel. I was literally dieing and they kept running the tests over and over and then saying 'nope your not celiac' and never told me anything about what it was they were even testing for. I was sent to one of the best hospitals in NY where they would draw up to 13 tubes of blood at a time and had every test imaginable and even when they found brain lesions (diagnostic of celiac that has attacked the brain but the neuro was clueless) and had flat line electromylograms, was up for hours every night so sick and in pain that I would almost pass out, even when I could eat nothing without getting immediately sick and couldn't walk without falling over and my arthritis was so bad I couldn't hold a coffee cup or a pen the doctors went by those darned blood tests and just pumped me full of pain pills and told me I either wanted to be sick 'it's all in your head' or I needed to learn to 'live with the pain' not a single doctor ever told me of the high false negative rate and suggested I try the diet.

Please when you are done with testing try the diet. It took a very elderly allergist who overlooked the tests and put me on an elimination diet to recognize that those were false negative tests. He immediately sent me back to my GI who demanded another challenge that caused a severe GI bleed and finally diagnosed me. Within 6 months I was a different pain free person. After being sick for over 40 years I finally know what normal is, and it is not being in pain and sick all the time.

I hope you will give the diet a good strict try, be patient with your body as it takes a bit of time to heal. You are in a great place for support and knowledge about how to give the gluten-free lifestyle a good strict try. I hope you get some relief. We are here for you.

Raven, reading this brought me to tears... For me, for you, for so many that suffer and don't know where to begin, or how to make sense out of all the medical terms and tests and things. I've been trying to figure out if I should even bother with the medical world and just go gluten-free for myself. So that's what I'm struggling with right now, but last night after I logged off from reading a zillion posts, I wasn't tired enough to fall asleep so I grabbed my smartphone and googled Gluten Intolerance, and oddly, a post came up from this same site, written October 2010. I don't remember the name of it ... Something like "I was just diagnosed as Gluten Intolerant"... and I read it. There was so much info in there that opened my eyes to some testing and things of which I was not aware. I guess I'll sort through that again and "try" to talk to my doctor about it first, but really I'm so ready to go gluten-free. I know it will be hard...at first at least, but I just want to feel better so much that it doesn't matter if its hard. I went to take my vitamins today and have a new bottle... didn't open it. Called Centrum and they said, no we can't tell you that its gluten free. My first hurdle... now I have to find a new multivitamin, and I have to take them because my vitamin D level and calcium, and iron etc are all like one point over the "minimum" and that's WITH taking vitamins religiously. Then I went to brush my teeth and thought.... ummm. I wonder if I have to worry about toothpaste? I have no idea...its all overwhelming. Do you know of a good source for changing your life over to gluten-free? Anybody? I'm struggling with how to go about this. I'm giving my doctor this week to move forward in a helpful positive direction with me. If he doesn't or is resistant, I'll do it on my own. So sick and tired of being sick and tired... Thank you again Raven for your supportive and kind words. Means so much to me ... really really helps when I feel like I'm struggling so much with this. I'm sure it will get better... I guess its just the getting educated part that seems so overwhelming. Thanks again.

Guess I was so excited to find that I didn't have celiac disease, and then it hit me... I still have the same issues to face every day. I know I've read research info that said there is a test (maybe more than one I don't know) for gluten intolerance (aside from celiac testing). Has anyone had this? If so can you tell me what test it is, or any information about it?

I'm sort of feeling discouraged and lost a little again. I didn't expect this to be such a roller coaster ride. I just want to feel better. Its like, I know how I feel, but then the doctor tells me, no you're fine. But I know I'm not fine, so I'm sort of back to square one in a way. Bleh, its like facing the same ole thing... just trying to convince myself that its "normal" ... to feel this way. After all, its been normal for me for so long, maybe I'm just not "tough enough" ... Sorry, I shouldn't be dumping here... just feeling so lost and sad about not having any answers. Maybe it would have been better to have all kinds of positives. Not sure I should be taking up your time here, if I don't have celiac disease, so Thanks for your help... and I don't think I'll bother you all anymore unless I find out something positive. Maybe its just IBS or something. Good grief... now a few tears...what's up with that? I'm TOUGHER than this!

Thanks again everybody, and I hope you all get well, feel well, stay well and happy!

Did they biopsy your small bowel? Plus I heard there are a lot of false negatives and you could be gluten intolerant; not celiac. Please get more information before you take that as the final word. The damage that gluten does for folks with disease is horrible. Make sure you are not one of the statistics.

No Biopsy...Still waiting for DQ numbers, but from what I can "guess" based on what the medical assistant said, it wasn't DQ2 or DQ8.

Sorry, I got so excited to know it wasn't the kind of sensitivity that turns your "shag carpet villi into tile" that I forgot the post was pretty much informationless. Yeah, I posted test results in a different post but here they are:

TISSUE TRANSGLUTAMINASE IGG 0.40 <0.90- Index

TISSUE TRANSGLUTAMINASE IGA 0.42 <0.90- Index

(negative)

research doctor saw my results and said its probably unlikely that its celiac disease. And that genetic tests really don't tell much, even to the experts. LOL I don't know what's what anymore!

No other tests for celiac disease except genetic DQ markers and yes, I am lactose intolerant and have been for 30 years.

and like I said before, they just simply said, the DQ test didn't indicate that I was Celiac. So that's why I think it could be NCGS. This gets all so confusing and I just really feel like I want to go gluten-free and forget all the testing. Doubt they'd do any more anyway, based on these tests. So, I'm just counting myself lucky that its not celiac disease, and hoping that going gluten-free will resolve the symptoms and all will be well. Just wasn't sure if there was anything else I was missing in the chain of events. Thanks Mushroom and Rose and everybody for caring enough to respond to my posts!

So, its looking like its NOT celiac disease! YAY! But knowing that doesn't make the symptoms go away. So, I'm thinking it still could be NCGS. Do any of you have experience with this? What is the likely next step? I'm guessing, elimination diet? Any help or insight you can give me as to how the next chain of events should unfold, would be most appreciated.

They called me today (medical assistant) and told me, "your doctor says the test doesn't indicate celiac." That was it! I said, could you give me the test results? And she sort of stammered and said, um that is the results. I told her there are two DQ markers each followed by a number from 1-9 and I would like to know what they are, because research is rapidly changing and they are finding certain DQ markers or combination of markers that seem to be associated with higher incidents of NCGS. She was clueless. So I emailed my doctor directly and asked him for the results, and asked what the next step is. I should hear back from him in the next 2 days or so.

Any thoughts? Thank you so much.. in advance. And thank you so much for all the help and support through this initial pre-diagnosis time.

Forgive me for this, but I do have to laugh. If you take out the "I've read" bits this sounds just like what the doctors spout to us. In fact half of them don't even recognize non-celiac gluten intolerance

Well, hopefully that's changing rapidly! As you can see from my post above this one... there is evidence "out there" that the doctors and researchers are finally realizing that NCGS IS real. I have soooo many questions!

Forgive me for this, but I do have to laugh. If you take out the "I've read" bits this sounds just like what the doctors spout to us. In fact half of them don't even recognize non-celiac gluten intolerance

Well, hopefully that's changing rapidly! As you can see from my post above this one... there is evidence "out there" that the doctors and researchers are finally realizing that NCGS IS real. I have soooo many questions!

Considering the complexities of the human body and the things it is expected to break down, it isn't surprising. The problem occurs when people assume that they know everything, and that if they can't quantify it, it doesn't exist.

I'm glad to see that some people are trying to break through the barriers that previous theories have put up in so many doctors' brains!!

Best of luck with your diet, I hope you feel better.

Thanks! I'm seeing more and more about NCGS (non-celiac gluten sensitivity) and I'm starting to think that's what I have. Couple more days for test results and then probably gluten-free diet, once doctor gives okay ... and yes, hopefully I'll feel much much better! I hope they figure all of this out real soon, so EVERYBODY can feel better! This is definitely not on my top billion fun things!

Apparently those two account for 90+% of the KNOWN/DIAGNOSED celiac disease.

but there is the remaining few % that are not either....and per this board there are several others being acknowledged in Europe....good luck

Did some further checking on the internet and this is part of what I found:

DQ2 & DQ8, the two major types, are present in 90-99% of people who have Celiac disease. They are also present in approximately 35-45% of people in the U.S., especially those of Caucasian race of Northern European ancestry. The prevalence in the U.S. of Celiac disease is 1% and though a prevalence of 1 in 100 is very common and much higher than had been believed for years, this is only a fraction of the genetically at risk that actually are confirmed to have Celiac disease by abnormal blood tests and small intestine biopsies. However, the number of people who report a response to a gluten-free diet is much higher.

So you're right... its not absolute... I guess nothing ever is! Thanks for the eye opener.

This was from By Dr. Scot Lewey That's a really interesting article from ezine articles.

I'm really thinking, I'm a NCGS and not celiac disease, but time will tell with a gluten-free diet. Thanks for sharing your thoughts. Everybody here is so helpful!

Mayo Clinic gastroenterologist and celiac disease specialist Joseph Murray, M.D just sent me an unexpected email, which really says a lot about what they do and don't know about Celiac.

I sent a thank you note to him, for making a professional lecture video directed to other physicians, regarding Celiac Disease. I sent it to my doctor to make sure he knew that the tests he ordered for me were outdated, and no longer used by Mayo Clinic doctors to diagnose celiac disease. Anyway, in the letter, I told him my results and that I didn't understand them, and he sent this note back:

"The tests your doc did were negative for celiac disease however if you had already reduced gluten in your diet they may not be accurate. If the testes were done on a regular diet then celiac disease is unlikely. genetics don't add much really and can be rather confusing even for experts. Your father should ask his Mayo doctor about testing for celiac disease. their Mayo doc can readily contact me.

This is not medical advice."

Joe Murray

WOW... to me that says, "we, the experts, are still unsure and still researching how genetics play a part in diagnosing celiac disease". I'm beginning to think I am one of the non-celiac gluten sensitive/intolerant people. So, I'll talk to my doctor after the results are back, but probably will go gluten-free for a month and see if it makes the difference I'm hoping it will. Very short tests (a few days at a time) of going gluten-free have really made me feel better during those times. And I feel so lousy when I eat gluten again. So... I'm probably one of the non -celiacs who suffers from the gluten intolerance that they are still trying to figure out.

It was so nice of Dr Murray to even take the time to respond to my thank you note!!! What a great guy... and a really wonderful research doctor!

My husband has kept a few of his items - Cheerios, granola bars, regular oatmeal, bread on occasion - but everything else in the house is gluten free. I'm never going to cook a bunch of special meals when one can satisfy everyone, so he eats gluten free with me when we're home and eating together. If we go out, he generally gets whatever he wants, but he'll join in gluten free with me at a place like PF Changs where we share a couple of dishes.

With a 9 month old, I'm continuing the same trend. Everything that we share is gluten free. Since, right now, ANYTHING that Daphne eats gets shared with me (either on my hands, or my shirt, or whatever), she eats gluten free. Some year, perhaps when she's 7 or 8, IF she doesn't have a problem with gluten AND can be responsible about policing her food the way my husband is, she can have the same provisions as he does. In this house, though, it's a privilege, not a right, to get evil (gluten) food.

ADORABLE BABY!

From what I've read, it does rule out Celiac. HLA-DQ2 and HLA-DQ8 are always present with Celiac, but you can have those genetic markers and NOT have celiac, but then you do have the possiblity of developing it. You can have non-Celiac gluten sensitivity/intolerance without those two genetic markers and they have associated other markers with this. From what I've read,and what my doctor said... if you don't have DQ2 or DQ8 ... that rules out Celiac.

Does it contain tocopherol acetate? Tocopherols are derived from soy and wheat germ oil, I believe. May require some investigation.

I stopped using anything with tocopherols in it because of a problem with soy and then learned about the wheat germ oil. The hand sanitizer made my hands raw!

here's a previous thread on it. Hope it helps!

Ugh! So much to learn! It seems there's hidden gluten EVERYWHERE! How did you all figure it out? Does anyone have suggestions for comprehensive lists? Thanks!

People need to be concerned about CC whether they are celiac or gluten intolerant. With both damage is being done. It is a common misconception that gluten intolerance is not as serious and that folks don't need to be as careful. They do need to be just as careful and in some cases are even more sensitive than people that are diagnosed as 'celiac'.

Oh, thanks...that's good to know! Honestly, there is so much the doctors DON'T know ...and it seems people that deal with this in their every day lives have a better handle on it. I can't believe how much research facilities are finding out that they didn't know just in the last year, from what I've read. That leads me to believe there is a boatload of very real ... very valid information that they haven't put together yet...at least "officially".

Did those blood tests include checking for Vitamin B12 deficiency? That could still be a problem, even after being gluten free for a while. As I've discovered on this forum, it can take several months for the intestines to heal and absorb vitamins properly. My levels were too low; after taking supplements for a while, they got back to normal and my doctor said I didn't need the supplements anymore. But, it wasn't a good idea to stop. A couple of months later the dizziness and D came back. More bloodwork showed that the numbers were low again, so my doctor decided that I obviously need to keep taking the supplements.

Good luck!

Did taking the supplements again resolve the issues?

After posting what I'd hoped was a good morning, it's gone downhill from there. Just sticking to the physical... my abdomen HURTS. It's tender, bloated and just downright painful (yes I had the big "D" like normal). I'm still gluten-free but I'm supposed to go back on gluten tomorrow for a hopeful upcoming test and it's not like I'm so far in that it's unreasonable to stop.

I went to Zumba class even though I felt like crap but hoping that the energetic exercise would help. Nope. Every dance move, every jump, even walking hurts. I suffered through zumba anyway (but only gave minimal effort when the instructor wasn't looking ). I have no had dinner and have no desire to eat anything because I'm nauseous. This is the same pain that I had a month ago that had all of my Doctors in an uproar thinking it was my appendix. They made me go first to the dr. then to urgent care and then to the E.R. (second E.R. because they called me on the way to the first and told me it was full and sent me elsewhere to be checked immediately). I hurt from my pelvic bone (not the "actual" bone) to my belly button.

I just want to be fixed. Please?

Ok, sorry. My whine is done.

Did you get your tests scheduled? Get back on that awful gluten diet... get the tests and soon you can go gluten-free and feel all better!

Hi, I know it is so frustrating when you just want to know which one. I was recently diagnosed as having a problem with gluten and told by my doctor to go gluten free, she ran a celiac panel and sent me to a nutritionist. The blood test was negative but by the time I found out, I had been gluten free over a month and feeling so much better. Since I had been gluten free having an EGD w/ biopsy was useless and I didn't want to start eating gluten again to have the test. I went ahead and did the genetic testing with Enterolab which came back a double DQ8 gene. Mine could be just gluten sensitivity but I wanted to know first if there was even a possibility genetically to have Celiacs. I have seen a specialist who treats over 600 celiac/gluten sensitive pts. a year and she said she feels like it is Celiacs but officially diagnosing it as such really can't be done without positive blood test/positive biopsy. It really doesn't matter in the end to me which one it is now because as I understand it both have consequences if you eat gluten. I will say I was like you in the beginning, I wanted to know because if it wasn't celiacs then worrying about CC wouldn't be as bad. The doctor did tell me once you are gluten free and you are "glutened" your symptoms can be more severe.

Good Luck and I hope you find your answers soon!

Carolyn

Thanks Carolyn for your kind words. If I had a double DQ8... I'd go gluten free so fast and never look back. If you're having symptoms and gluten-free is working... your doctor is probably spot on. Glad you at least got those results. I'd be pretty assured with that, and I wouldn't poison myself by going back on gluten to get the tests. In fact, if I have one of the markers...not sure I'll do the biopsy. The prescription is the same... gluten-free diet...and like you said, and I already know I feel so much better gluten-free. I don't know ...we'll see what the doctor says. I guess if he recommends the biopsy I would do it just to see the extent of the dmg if there is any.

My wife was diagnosed recently and has been following the gluten free diet for around 2 months now. She's also a vegetarian. Whilst out at dinner this evening she suddenly began to feel unwell and ended up passing out twice in succession.

This has never happened before even when she ate a 'regular' diet (inc gluten) for all those years.

We suspect one of the sauces at dinner may have contained gluten. Could this sudden intake of gluten after a period of not ingesting gluten have caused this fainting epsiode? Or could it be down to something else? Afterwards she felt a pain in both temples.

She had also consumed a small quantity of alcohol.

Thanks in advance.

I know how you feel. I have had unexplained fainting many times, once slicing tomatoes with a very sharp knife. Thank goodness when I crumpled to the floor the knife went one way and I went the other. Another time I fainted in church and my face hit the pew in front of me and my tooth went through my lip.

Another time I was showering... and felt the "greyness" coming on so I grabbed the bar on the sliding glass door just as I blacked out... and the weight of my body pulled the door open and I fell and I hit my face on the track and broke my nose. It was soooo odd when I started coming to.. I was thinking ... Oh, I've never been so comfortable... like sleeping on a cloud in heaven... soooo comfortable... then I heard water running and thought... that's odd why is water running when I'm sleeping... then I heard my six year old son saying, "Mommy why are you sleeping in the bathtub?" and opened my eyes, and saw blood everywhere.

Sorry...so graphic, but that's what happened. I was afraid to move, because I knew I fainted at that point, but when you don't have control of your body, things can bend in the wrong directions and I didn't know if I had broken anything in the fall. I was terrified that he had called 911... and they'd find me naked in the shower! LOL ... Okay, I'm getting off track here. I'm just really surprised to see how many others here have had unexplained fainting. I wonder if Doctors and researchers ever paid attention to that being a common thread. Oh, just for the record...nothing else was broken.. just my nose...and the lovely track marks across my cheeks. Those were a few of my fainting experiences... with no explanation.

Wondering If those of you who react to dairy have simlar symptoms as you have to gluten or if the reaction is different.

I'm on a gluten and dairy free trial trying to solve some issues I've had - mainly reflux and bloating and also thyroiditis (likely hashimotos). I'm having a hard time sorting through reactions and what causes what.

Thanks

I'm still sorting through what's what, too... but here's how those two things affect me. Lactose intolerance and gluten intolerance BOTH make me feel the same ... bloating, gas, diarrhea, cramping... all that fun stuff. The difference for me is gluten seems to make me feel really tired, brain fog, sometimes joint pain if I really had a lot. Lactose intolerance doesn't do that to me... it just makes my tummy hurt and digestive issues. Hope this helps.

I had the gene tests done 5 years after my doctors finally diagnosed me. It was a long haul because I am seronegative. Interestingly both my kids did show up positive in blood tests. I am a double DQ9 which in this country is usually considered an RA associated gene but in other countries is considered a celiac associated gene. While gene testing is interesting it should not be relied on to totally rule out celiac.

If you feel better on the diet don't let possibly false negatives on testing talk you out of doing it.

Thanks for sharing your story... I'm definitely going gluten-free, I already know I feel 100% better, but I would like to find out if it is celiac or a non-celiac gluten sensitivity/intolerance. They both are awful to live with, same symptoms, but one damages your internal body, the other just makes you feel sick. If I'm non-celiac gluten sensitive/intolerant I won't worry so much about cross contamination. If it IS Celiac, I will be religious about it.

I'm also really trying to figure out if it is celiac, because my dad has a bunch of the symptoms, too, but doesn't really think its an issue. I think if I can tell him he needs to get tested because of genetics, he will. I just read another thing from Mayo Clinic that said, there are lots of false negatives, and they are learning so much just in the last year or so about non-celiac gluten sensitivity, but they say Celiac is four times more common now than it was 50 years ago, and they are finding it in older people like crazy. So, if you have symptoms and don't get a positive result, be persistent. I'm just really ready to find out what my markers say, and if they fall into the categories that are celiac related, that's really enough for me. There's enough "unknown" in the medical world about gluten sensitivity that if I have the genetic markers (which don't mean you have celiac, but that you could have it or develope it)and based on my symptoms, and positive response to gluten-free diet, I WILL go gluten-free, regardless of other test outcomes. There's still so much they DON'T know, but I know what my body is telling me.

Oh, and another thing is, Celiac is so common in places like England and Ireland that they usually diagnose in under a year. In the USA it takes an average of ELEVEN YEARS to get a diagnosis!!! That is totally unacceptable in my opinion... not that I have an opionion or anything! LOL But that's just ridiculous. The medical community needs to educate their doctors who have been out of med school for more than five years! That's my story, and I'm sticking to it.

Just got a call from the doctor's office, and STILL no results! This waiting is killing me! I guess I'm getting a little impatient, because I KNOW I feel so much better when I don't eat gluten, but I can't go gluten-free until the results are back and we know what direction we're going in. I don't want to mess up the biopsy results if that's next. Its been two weeks since blood was drawn... I sure hope the results come soon. It will answer a LOT of questions. Have most of you had the genetic marker test? (HLA-DQ2, HLA-DQ8)?

Thanks for all the replies, and good advice, everybody! I was curious how difficult it would be to do both, but I think I know what we will do. Put all the gluten toxins on a lower shelf as suggested, and once those things are gone, go completely gluten free. My husband is supportive.. he said we'll do "what ever it takes" to make it easy for me. I do most of the cooking, and with all the wonderful recipes out there, I think we'll be fine. We do eat a lot of natural foods anyway (not processed) and that's half the battle, I think. The only stumbling blocks I really see are breads, crackers, pasta, pizza, and I'm sure there are alternatives out there that I just have to find. I've seen different gluten-free Flours for baking, etc. Hopefully, I'll get the hang of baking with those. Thanks everybody for your thoughts! They help a bunch!

Yes, that was not an idle question. I don't think it was shingles you had, I think it was dermatitis herpetiformis, the skin form of celiac disease. Hub has it, and he broke out in a line of blisters on his forehead. The blisters burst and the thing itched and burned like crazy, and when it healed it left a purple scar which has now faded to white.

Pretty possitive it was shingles. Started with HORRIFIC stabbing pain that felt like I was being stabbed through my back and a few days later it felt like stabbing through my chest. Then rash developed in a line from my back to my chest... only on one side of my body.. EXCRUTIATING pain, following a nerve path. It lasted for five weeks. Wouldn't wish it on my worst enemy.