MsCurious

I don't blame you for not taking IBS as a diagnosis. They tried that on me too. As for the ribbons yup been there done that right before being diagnosed with Celiac. Since I've been gluten free 3 months and a few weeks, I've gone through the run of them all and now to fairly normal (I think! what is normal when you've been sick mildly all your life with annual bouts of bizarreness!!)...

Glad to see that there are others who refuse to accept IBS as a diagnosis. I've said this before, and its how I feel.... Its like they just want to toss everybody into the "we know you have digestive issues, but we don't know what's wrong with you so you have IBS" pool. To me, IBS is just a bunch of symptoms...what I want to know is WHAT is causing them! For every action, there is a reaction. I know what the REACTION is...and it isn't pretty... so what is the ACTION... that is causing the reaction? I think there are a lot of us, just searching for answers. I'm still in the testing phase with my doctors, but if they can't figure it out... I'll just do elimination diet until I figure it out myself.

As far as ribbons... yep, very common for me.... mostly just in the last 3 months or so... and I have NO idea why! It's very strange and concerning.

Hi again,

Sorry for posting so many questions... but I have so many questions, and this seems to be the best place to ask. I think it was CassP that said TTg is just one of the tests they do, but I was wondering, why would my doctor ONLY do that one and not the others? Just seems odd to me. Are they trying to save money and just "send me on my way" with a negative result?

The other thing is... sometimes (if I have a "good" day) I think maybe I'm just making more of this than I should. You know, justifying living with this for so long I guess. But I came across a symptom checker thing that scored answers based on gluten, fructose, lactose, yeast, and allergy indicators. I filled it out just for fun, and I wasn't surprised to see that gluten was way up there, but VERY surprised to see that yeast was almost as high and lactose was high as well. The gluten, I suspected obviously, and the lactose I knew about... but the yeast thing really surprised me. Allergy and Fructose were still higher than "normal but relatively low compared to the other three results.

This made me really curious. I thought, they probably skewed the questions so that the general population would score high on it, so I decided to find a comparison. My husband has no digestive issues EVER, but he does have allergies to dust, pet dander etc. I thought it would be interesting to have him take the same test. He scored a TOTAL of 4 on two columns and 1 each on the others. PFfffffft! That blew my theory that it was a skewed test. I was scoring 17, 15 and 16 on Gluten intolerance, Yeast sensitivity and Dairy Intolerance. This wasn's a "scientific" test, but probably a good indicator of the truth. Sometimes I feel like I must be just "normal" and I should just "live with it"... but then I KNOW this can't be normal. I remember ... feeling more normal than this years ago. So, long story short, I've decided I'm not crazy! Now if I could just get the doctors to tell me whats wrong!

I am interested in this topic. Can you give a link to the study?

I wish I could. I was on a forum site similar to this one... don't remember the name of it. I had googled something and just clicked the link so I didn't really pay much attention to the name of the site. Maybe it was Health.com? But I'm not certain. I didn't see the study... just the quotes from it that I posted.

Dr Joseph A Murray is a gastroenterologist at Mayo Clinic, Rochester, MN ... but he is also either the lead or one of the lead researchers there on Celiac. He's from Ireland, where they are much more advanced in the awareness of Celiac, as that is one of the hotspots for genetics linked to Celiac, from what I understand.

You could probably google: Dr Joseph A Murray Mayo Clinic refractory sprue. If you can't find it that way, you could probably call Mayo Info line and ask how you could get a copy or a link. Good luck... hope this helps you!

Does anyone feel good after being gluten free?

I have been gluten-free for almost three years and still have a super sensitive digestive system and generally feel fatigued most of the time. Tired of feeling tired.

:'-(

I just found this little tidbit on another celiac site and thought it might be helpful to you. Maybe you could ask your doctor about it:

"The second thing I wanted to mention is that there is a condition called refractory sprue....this is very rare, fortunately! Refractory sprue is celiac disease that does NOT improve on a gluten free diet."

"Here is a quote from an article on refractory sprue:

"It is interesting to note that in a recent study of patients with "unresponsive" celiac disease, Dr. Joseph Murray and his colleagues (of Mayo Clinic, Rochester, MN) found that of 49 patients evaluated, only nine actually had refractory sprue

Ugh... I'm sorry, Nancy. I was right where you are...yesterday. I pretty much gave up, shed a few tears, and decided to take matters into my own hands and just go gluten-free and get better. Oddly, first thing this morning I got a an email from my doctor, saying that he had consulted with GI department, and they will be giving me a call to schedule an appointment.

The other poster reiterated what I've said before. I read that UK/Ireland etc are leaps and bounds ahead of us and on average, they diagnose in under a year (which is still a long time) BUT in the USA the average for a diagnosis is 11 years. Eleven years of fighting tooth and nail to get the doctors to listen and believe their patients.

I understand if you give up and just go gluten-free. The end result is, you probably would do just that anyway. And honestly, if I get the same runaround with the GI dept... if they don't do the tests right away, I'm going to just go gluten-free too, and the heck with 'em. I know how frustrated you are, and you're probably shedding the same tears of frustration that I did yesterday. Hang in there, and good luck with getting better on the gluten-free!

Hi all,

I was just diagnosed with Celiac Disease by blood test (anti-tTg 60 when >20 was positive) and biopsy. At my appointment today, my doctor gave me a copy of the endoscopy procedure notes and the biopsy results. I'm very new to all of this and would like to know if the results mean anything to anybody. Is this early Celiac Disease or is this likely something I've had for awhile (I am 25). I ask because I was sick for most of my life from stomach problems, but was told it was IBS. Is it possible I had this as a young kid or is my damage not enough? Maybe you can't tell, but I was just curious. I can't complain though, I'm sure there are people out there with a lot more damage than me, but you always are curious as to what stage your in before you reverse it. Thanks a lot!!!

ENDOSCOPY

----------------------

POSTOPERATIVE DIAGNOSIS:

1. Normal examination of esophagus and stomach.

2. Diffuse flattening of villi, multiple biopsies taken

BIOPSY

------

Small Intestine Biopsy: High levels of intraepithelial lymphocyte counts with moderate villi atrophy.

Stomach Biopsy: Antral and body-type mucosa show signs of mild inflammation and gastritis.

Helicobacter pylori negative.

Well, they are telling you that the villi atrophy (damage from Celiac) in your small intestines is moderate. Moderate is not the worst, not the best. They also say that it can take anywhere up to 3 years for the damaged villi to repair itself. I have NO IDEA if this would be how they would look at it, but if best case healed fast, moderate case healed in about half the total time (ie: 1.5 years) and worse case healed at 3 years... maybe that is how it works. I have no idea... just seems like that might be logical. You could ask your doctor.

On the celiac lab tests, each lab has ranges for the results (which are measuring antibodies). To give a hypothetical example, let's say that under 7 is definitely negative, 8-15 is mildly positive, and anything 16 and over is celiac. If you score an 8, you are neither negative nor positive. Same if your score is 14. But if you hit the magic 16 number, you are celiac. And what do these numbers represent? Specific markers in the blood for a specific autoimmune reaction to gliadin. Sometimes, if you wait long enough and then are retested, you will score high enough to be called celiac But do you really want to ace this test? Well, it doesn't really matter to the patient whether they pass the test or not, because the patient is still being affected by gluten whether they pass or not, but it seems to matter to the doctors that you have to score the magic 16. Many of them will tell you, if you don't pass the test, to go away and eat gluten and be happy. The smarter ones will tell you to try the gluten free diet and see if it makes a difference for you. Because, as OP's have said, the research is in its infancy and they really don't know a lot about gluten intolerance

Those... in a nutshell... are some very wise words!

Hi! Yes, he said he took two biopsies. One for bacteria (which was negative) and the other which came back as "Chronic Gastritis." I will call and ask for the exact results- I only knew of my diagnosis because he MAILED (didn't even call) a letter stating the pathology results as: "Chronic Gastritis" and then it listed possible causes- one of which is an auto immune disorder. I received the phone call to say I was being referred for my gallbladder and to also tell me blood work would be a waste of my time (after I called and requested it based on Biopsy) b/c the doctor does not feel I have Celiac. But, I just feel SO MANY things are pointing to it. He also seemed very against it to begin with saying it was "trendy." WHAT?!

Is there hope that my gallbladder will settle down and 'repair' due to gluten-free diet?

I think the biopsies Raven was referring to are 5 to 6 biopsies done of the small intestines specifically to examine for villi atrophy, which would give you a positive Celiac diagnosis. Oh, and as far as that "trendy" comment! BLEH! Its too bad that there are people out there touting the gluten-free diet because its a new cool thing to do for the "health nuts" ...when in fact there is a segment of the population who's lives and well being truly depend upon it! I'd tell that doctor, "Its NOT a trendy thing. Perhaps you're hearing more about it because there has been a mini explosion of groundbreaking research that is causing a bigger segment of the population to be aware of it and to be diagnosed properly!" SHEESH... that was so wrong of him to say that, and to dismiss your concerns!

By the way, DGP stands for Deamidated Gliadin Peptide.

Thanks Mushroom... I fixed my note that I'm taking to the doctor.

Exactly, MsCurious! I am in no rush to have it removed, that's why I am pushing for blood work. I have read on here that there are a few things to specifically test for the lab work, but I do not know them and can't find where I read it. I guess that was my question: What should I be sure they test for my blood work? I want to be sure they are thorough.

Seems like you are in the same boat as me- I hope you get answers soon

Oh, I just asked the same thing! I'm sort of in your shoes... just trying to get the right tests done. Here is what two of the vet members gave me just about an hour ago. This is from a poster named Marlie:

The tests that you should ask for are:

tTG IgA

EMA IgA

AntiGlidian IgA and IgG

Deamidated Gliadin Peptide IgA and IgG is correct, according to poster Mushroom. ( NOT:Deaminated Gliadin Protein IgA and IgG)

and also the Total IGA because if you don't make enough IGA that will cause a false negative on the IGA tests

If there are other things he should be asking for, or if this isn't right... somebody, please chirp in!

Not really. When the others say it's not a well understood disease, they aren't kidding.

After diagnosis it's standard to get a bone density scan to test for osteopenia or osteoporosis. When I went for mine, both nurses who performed it

As long as they look for the other markers...some only look for those 2 and that's it plus new ones are being discovered everyday. To confuse things even further some genes are considered celiac associated in one country but not in another, like mine.

Yeah, I've read that Ireland and places like UK are far ahead of us in diagnosis of Gluten Intolerance/Celiac. They usually diagnose in under a year and here in the USA it takes an average of eleven years. That just goes to show what people have to go through to get the RIGHT diagnosis...sadly. I know the head Celiac guru at Mayo Clinic in Rochester is from Ireland or Scotland area. I'm sure they pulled him over for his expertise, since they are so far ahead of us.

The sad truth is too many doctors don't understand this disease. I think yesterday I had a doctor tel me you are born with it and it's an allergy.

OMG... I'm pretty new to this and in the week worth of research I've done, even I know that's a false statement... on TWO counts! Thanks for all your help, and information, Marlie. It is sooooo much appreciated!

Just 2 minutes after I posted this, I got a call from my doctor's office. I assumed it was the GI department calling to schedule an appointment, since my doctor told me this morning that they would be calling. Nope it was RN... she wanted to know if I had gotten my HLA-DQx results, and I told her "no, doctor said they would be mailing them out to me today"... She said, well there are no results here...was it an outside lab? And I said yes, it was Quest Labs. She said, I don't know what this DQ test is anyway. It's odd that an RN wouldn't know anything about the tests. Seems like they should have crossed her path once or twice before? I'm getting scare of the incompetence... or lack of current training I'm dealing with here. Especially since, I am depending on them to know what they are doing.

Unfortunately your doctor is misinformed. Many have those genes and never develop celiac and there are celiacs that don't have those genes. Gene testing is a relatively new science and much is being learned every day but not all doctors keep up with the research.

Yeah, I think that's exactly what I'm facing, which is why I sent him that video from the Mayo Research doctor. (I found it and sent it to him after the blood tests were already drawn) If nothing else, I'll know what my two DQ markers are so I can kind of watch as research unfolds.... and have an idea how it might apply to me. That's just a side bonus to the disappointment, I guess.

Not all celiacs have skin issues and not many vomit. The symptoms you are listing are typical celiac symptoms.

One of the other posters, Marlie gave you the tests that you should ask for. They are

tTG IgA

EMA IgA

AntiGlidian IgA and IgG

Deaminated Gliadin Protein (I think that's what the DGP stands for) IgA and IgG.

and also the Total IGA because if you don't make enough IGA that will cause a false negative on the IGA tests

Thank you! I'm sure they were posted somewhere, but honestly, my head is sort of spinning with all this new information, so it probably just didn't sink in at the time. I've copied it to my desktop and will take it with me to the doctor. Thanks again to both you and Marlie!

Hi all

This is my first post, but have been reading for about a week now and am so encouraged by y'alls compassion and KNOWLEDGE. It has been such a blessing to me in this extremely frustrating time.

First, I should say I have had issues my WHOLE LIFE, but things have become worse since having children.

For the past 8 weeks, I have been having a burning/stinging pain in my upper right abdomen. After about two weeks of it, it radiated to my back, causing me to be seen in Urgent Care. I was told I had GERD and a back spasm and to Google a GERD diet but they also referred me to a G.I Dr.

I researched GERD and I just do not believe I have it--but while researching, it also said, "If you have been misdiagnosed with GERD, IBS, have anemia, reflux, you may have Celiac." YES, YES, YES to all of the above! This was the second time in the past year that Celiac has crossed my mind and so at my appointment with the GI Dr., I mentioned my history and asked to be tested. He suspected an ulcer but said he would order an Endoscopy and we'd go from there. I also just had a HIDA scan with CCK on Monday.

I just got the results (which is really just a letter with the diagnosis) from my Endoscopy and the letters says: CHRONIC GASTRITIS (inflammation and irritation of the stomach) special stains for Heliobacter are negative.

It then goes on to list the possible causes for Chronic Gastritis: pernicious anemia, autoimmune disorders, and chronic bile reflux.

I called the doctor's office and spoke with the nurse, requesting blood work to determine/rule out Celiac. She said it would be a waste of money and that the endoscopy is the most accurate and based off the report, my doctor says I do NOT have Celiac. I told her I would like it anyway, just for peace of mind. Then, she calls back and tells me the doctor just reviewed my HIDA scan and it is "abnormal" so I am being referred to another doctor to discuss gallbladder removal.

I am 25 years old. I do not believe my gallbladder would just fail on me, especially given my history. I feel something ELSE is the culprit. And seeing as how my endoscopy results are "Chronic Gastritis" which can be caused by autoimmune disorder (which Celiac is) how can the doctor be so sure that I do not have Celiac? I feel like I am being written off, rushed for gallbladder removal, without knowing WHY.

The nurse is mailing me a form for blood work, so I am not all sure what they are specifically looking for but I want to be sure they do EVERYTHING. What all should I be sure they do?

I am just so confused and I want to be as informed as possible before meeting with the surgeon. Also, depending on my gallbladder functionality (I do not know what my injection percentage was)--do I HAVE to have surgery? Has anyone been here and know what I should do next?

Thank you for any advice you may have for me. I am just SAD, MAD, FRUSTRATED--it goes on and on! Ha! I am tired of crying over it and just want to be INFORMED. Seems impossible when I feel doctors do not even have answers for me.

Chas

-I have ALWAYS been underweight (can eat and eat and EAT, and not gain a thing)

-am anemic

-have skin irritations on scalp, upper arms, and recently thighs--and even flaky skin in my eyebrows

-hair always sheds like CRAZY--it's always been kind of a joke, since I have very thick hair- but now I realize: It's NOT FUNNY!

-Stomach bloating, cramping- randomly--can never pinpoint WHAT causes it

-hospitalized in 2004 for a week due to severe vomiting/diarrhea--had colonoscopy (results fine)--had no diagnosis other than "colitis"

-Random bouts of alternating constipation/diarrhea

-all of a sudden lactose intolerant in the past year--drank whole milk and was an ice cream lover my whole life--switched to soy, but it broke me out

-an overall feeling BLAH--lack of energy- have never been able to pinpoint WHY I feel this way- I sleep fine but never have the energy that I SHOULD

-Most recently Gallbladder pain---seems to be worse after eating breads/bisquits/etc.

-Have lost about 8 lbs since the gallbladder pain started

-have been diagnosed with IBS/GERD/ Acid Reflux in the last 5 years

Wow, I'm pretty new here...still working on getting things sorted out and getting a diagnosis, but I had to toss my 2 cents in, if even just from a logical and sensible standpoint. I would NEVER let someone do surgery on me, if there was something else that could be tested for, that didn't require surgery and the symptoms all were in line with it. I guess it would depend on if they have firm evidence that your gallbladder is bad and you need immediate surgery. If its something that can wait, I'd push really hard for celiac tests first.

My local hospital uses Quest any time blood needs to be analyzed that they can't do in-house. I have no problem with that. I have no clue what genes I have...only that I have celiac.

ETA: Gene tests are not diagnostic.

My Doctor said if my DQx's came back and didn't show DQ2 or DQ8 we could rule out Celiac, which is why he did that test. If it could be ruled out ...that door would be closed. If it came back that I had the markers, then there "could be" a possiblity that I either have or could develop celiac disease.

Hello,and welcome.

It certainly sounds like you have come to the right place. Your symptoms have a familiar ring to them. And even your current hives outbreak is all too familiar. It happened to me too. I will try to give a brief synopsis of what I think is happening.

Gluten intolerance causes us to develop what is called a leaky gut, where larger than normal food particles are able to pass into the blood stream. These larger particles are not recognized by the body's immune system as something that should be there, so they are treated as "enemy" and the body sets off a response to them just as it would if it encountered a cold virus. Except that the body cannot "conquer" this food particle. If it keeps encountering it it keeps reacting to it and it becomes an autoimmune response whenever it comes across it. This may be a large particle of corn, it may be potato, it may be beans, the possibilities are endless. So unfortunately, because of the gluten that we are intolerant of, we also become intolerant of some other foods. And the body has varying ways of exhibiting these intolerances. Sometimes you will get a gluten-like reaction with diarrhea and bloating, sometimes you will get a rash, sometimes you will get hives.

I was too late in understanding this and didn't realize that I still had a leaky, unhealed gut, so I developed many additional intolerances. I was already intolerant of corn and soy (by skin testing) before I quit gluten. After quitting gluten corn gave me bloating, soy gave me skin redness and rash, potatoes and citrus gave me hives. So (and I am very sorry to have to tell you this) you work is not over yet

The best advice I can give is to revert to a very simple diet of whole processed (unlikely-to-provoke-a-response) foods and stabilize on that diet. Then add back in one food at a time and see how you react over 3-4 days. If no response try something else. Keep a food and symptom diary while you are doing this. Eventually, you should find your trigger foods. A sample beginning diet might look like chicken and turkey, veggies (not the nightshade family of potatoes, tomatoes, peppers and eggplant), rice, fruit, seeds, nuts, When you add foods, leave the top allergens until last (and these ten to be a little different - although not a lot) from the general population.) Avoid soy, corn and dairy (especially) since most new gluten-freers do not tolerate this because it is digested by an enzyme made in the small intestine. The idea is to expand your diet as quickly as possible by adding in those things you are most likely to be able to tolerate.

I hope this all makes sense to you. Ask any questions you have.

It makes sense to me... and is very good information that I will keep in mind when I finally get to go gluten-free. Your post grabbed my attention because of the hives thing. My dad (who I think might have gluten issues) has hives that almost seem chronic and he is on meds for them, but once again, meds treat the symptom and do not get to the cause and resolution to the problem. Did you have hives often before you were diagnosed? Also, if you get leaky gut, does that get healed up after you go gluten-free? Or is that just a chronic problem that you have to live with now? See how much I don't know? There's just soooo much!

Thanks for the thoughts.... very valid and wise. Just hope "self diagnosing" wouldn't overlook cancer or something that I have no medical knowledge to diagnose.

THANK YOU!

My advise is to not buy a lot of gluten free processed food. You might not like them.

Here are a few things my staples:

Eggs

Fresh Meat

Fresh Fish

Fresh Veggies

Fresh Fruit

Boar's Head Meats and Cheese

Hellman's mayo

Smithfield Bacon

All Chex Cereals

Mission Corn Tortillas

Coffee

All Classico Red and White Sauces (pick up some gluten free pasta)

Lumberg Rice Cakes

Unflavored rice

Yoplait Yogurt (except for the cookies/granola kind)

LaChoy Soy Sauce

Lea&Perrins Worchestershire Sauce

Hunts/Heinz Catsup

JELLO

Cheetos

Fritos

Lays Staxx - all varieties

Dove Promisses

Life Savers - Wintergreen

All Butter

Daisy Sour Cream

Kraft Dressing will clearly label all gluten

Smucker's Jelly - all

Jiff peanut butter

***There are many other brands that are generally gluten free, but these are the ones that I frequent. Hope this will give you a start.

Thank you! I'll use this as a basic start to my shopping list when I go gluten-free. Reading this makes it all seem so painless! Fresh fruits, veggies, and unprocessed meats, along with bisquick gluten free ... just about covers everything.

Hi!

I had the Gene test done in the similar Lab. I paid for it $386,-. My doctor used at first Quest Diagnostic for my gene test- three times. Each time it came back negative. Then I went to The Celiac Center at Columbia University Hospital in New York. My new doctor had ordered the gene test (the cheek swab) at Kimball genetics division of LabCorp. It came back positive. I have only a half of the gene DQ2. I have a small chance to get the celiac disease, but the posibility is there. Finaly I heard something positive because I had the symptoms, but nobody believed it that I was sick.

The lab did the detailed report on every alleles they found.

I heard that Enterolab was better then Quest and they, as you said, will give you the more detailed report which can help you to avoid allergens.

I also want to mention that I had my common allergies checked at my allergologist office. She did the prick test for them. I saw the reactions imediately. It was cheeper than stool tests.

I don't know which test is more reliable, but I hope I helped you in some way.

And one last thing: My husband was also tested for the celiac disease. His blood work came back positive. He had : tissue transglutam Ab 39 ref. range <5 and Gliadin AB IGA 76 ref. range <11. His doctor told him that he don't need to have endoscopy because his results are high and that was enough for the diagnosis.

WOW... I'm so amazed at what I'm learning here! Half a DQ2 gene? I know there are some places that are up on the research and some (like mine) that are still back in 1970. I know my gene test was sent to Quest, which doesn't reassure me much. I've not read much good about them. And when I got the results call from my doctors assistant, she couldn't even tell me my two DQx markers. She didn't even really know what I was talking about. Thanks for sharing... it gives me hope.

Since 2008, I have been dealing with the most ridiculous health issues, blue hands, joint paints, numbness, fatigue, canker sores (my entire life)feeling puffy, and gross, never feeling full, and extreme stomach pains that would leave me in horrible pain. I've seen so many specialists and doctors and it seems they only care about curing the symptoms and not trying to find out the problem! I've been tested for everything and in 2008 I did the celiac blood test and it came back negative. I felt hopeless. During the summer and fall I experienced the worst pain of my life that left me unable to move for an entire day. When I went to the doctors I was told to stop eating any diary, and anything that could hurt my stomach for example, no coffee, no sauce, no orange juice, no salsa I basically was left eating pudding and pretzels and didn't even lose any weight.

I had an endo scop surgery, and the results came back as gastrisis, but when going over the stuff on the phone the doctor mention something about sprue and then said that it didn't seem serve enough for me to do the diet, really how is this possible! Its been frustrating and upsetting I just want to feel good, so 17 days ago I started my gluten free diet, and then last week I started to break out in hives, and my elbows have become extremely dry. I am itchy all over and I can't take it anymore. I am frustrated with no answers and at times I feel like giving up. I feel bad for my loved ones, and my mom and boyfriend especially. I just feel like all I do is complain and that they must be so sick of hearing it. I just wish I had a doctor who actually cared and that someone would be willing to help me.

I made an appointment with a dermatologist today to see about my skin, I am thinking I will probably just vent to her about my issues because at this point, I have exhausted all my resources and I feel like throwing in the towel. I just feel like no one that can help actually cares. This forum has been very therapeutic so far and I am hoping someone can help me!

So sorry you're going throught all this... not fun! I have no idea, but it sure sounds like celiac or gluten intolerance. You know, sometimes I think doctors and researchers would be leaps and bounds ahead if they'd read sites like this, with real people that have real, and consistent issues that are all sounding the same, over and over and over again. You'd think they'd realize that the tests they have so far aren't giving all the answers, and they should stop dismissing these very real issues that patients have. Hope your doctor will take you seriously and you will get well soon.

First off they didn't do all the celiac blood tests you should have had done. Also the tests have a 20 to 30% false negative rate. My doctors not acknowledging this cost me many many years of my life. I had to get close to death before I finally got diagnosed. I am a firmly diagnosed celiac and gene testing 5 years after diagnosis showed I don't have either of those two genes, I have a double DQ9 instead.

In the end though it really doesn't matter if you are considered celiac or NCGS, both are autoimmune and both require you to be just as strict with the diet.

Your plan to do a good strict trial of the diet is a good one after you have had all the tests done.

Raven, do you know which tests are the ones they "should" do? I'm thinking I need tests that are not necessarily celiac tests, but gluten intolerant... because that's what I think I am. I don't have the dermatitis stuff, nor do I have vomiting, mostly the GI stuff and fatigue, headaches, low vitamin D, low cholesterol (which is great..but can be caused by this stuff I guess) joint aches, etc. I "thought" I had figured out my problem once I identified my lactose intolerance, but realized recently that I "can't" be messing up this much! I'm sick every day! After looking up IBS I kept coming across gluten issues and started reading and realized.... omgosh that's it! I thought back to the times when I felt better, and it was always when I'd made a pot of homemade soup that contained zero gluten, or when I'd make a rice dish, or just have meat, potato, and vegetable ... no gluten. So I started doing little mini tests with my diet, intentionally and it sure hit home! I have another question for you guys... when you were eating gluten, did you notice getting sicker if you ate more gluten (as opposed to just a tiny bit) or didn't it matter related to the severity of your symptoms and discomfort? Thanks so much for taking the time to answer my never-ending questions.

I wouldn't 100% discount it yet. My teens results negative Gene Testing, tTG IgA, EMA IgA, antiGlidian IgA and IgG but positive on the DGP IgA and IgG. You really need all the tests.

Oh, wow... really? Thank you so much for telling me that. There's so much I don't know...and obviously so much THEY don't know.

I wonder how I go about getting the right tests.