MsCurious

I have a follow up visit, I'm not sure if he is going to re-test me or not.

I guess i need to ask about periodic testing to ensure compliance.

I believe i said i wasn't trying to eat small amounts of gluten.

I am just the type of person who needs to know every detail about something.

I'm not crazy OCD, but I'am a "need to know" person.

i grew up hearing "because i said so" and as an adult I refuse to accept that, so I need lots and lots of specifics for me to be okay with something.

I appreciate you wanting me and my family to be healthy. I do as well!

I am slowly coming to terms with this, but that doesn't make it suck any less

If it makes you feel any better, people have posted on here that they don't give up anything. They have stuffing and gravy at Thanksgiving, and pumpkin pie, and birthday cake on their birthday, and waffles for breakfast, etc... So, just think of it that way... you don't have to give up everything, you just have to learn how to cook differently... with different flour. They say eating a crouton will put you in a tailspin, as far as undoing months of healing... to put it into perspective, so nope you can't cheat! But if you feel like you need support, there are wonderful people here who will remind you why you're gluten free. Good luck and be well!

Can the small bowel be inflamed just by a gluten intollerance? Or are there other reasons it could be inflamed? I asked what else could cause inflammation and he didn't answer me. Also, how does one find out if they are lactose intolerant? Is there a test for that?

The answer to those first two questions is ... yes and yes. Inflamation could be caused by NCGS (non-celiac gluten sensitivity) or there are other things that could be going on.

There is some breath test thing they can do (used to do) but it was a day long test, and very costly for doctors to perform, apparently, so I don't think they do it much anymore. At least that's what my doctor told me... but someone else may have different info for you on that. You can pretty much just eliminate dairy completely (including box mixes with milk powder in it, etc) for a week, and then reintroduce it. If you feel better when it is removed from your diet, and feel awful again when you reintroduce it,that should give you your answer about the lactose intolerance.

Hope you feel better real soon, and like raven said... maybe you could get a diagnosis by having the tissue next to the rash biopsied. Good Luck!

When I was 6 months old I was diagnosed with lactose intolerance (vomiting,diarrhea, poor weight gain, irritability, gas,etc), went on soy formula and did fine....Had a lifetime of bowel troubles. I had an EGD one year ago for a possible weight loss surgery but decided not to have it done (cause of the bowel issues).

I have had alot of strange problems......hypogonadic, b12 defiency, Vit D defiency, anemia in my early 20's, alterating constipation and diarrhea, feet numbness, hand stiffness and now recently hand numbness bilaterally (RA ruled out). When I was 14 I had my first outbreak of shingles. I have had almost 30 of them now to the left side of my face.....I believe this was Dermititis herpetiformis.....My doc ordered the TTG bloodwork which was negative.

I had an repeat EGD today for small bowel biposy.....but the doc said my bowel looked fine and didn't do a biopsy....I am kind of ticked off because my doc ordered biopsies.........Should I take the GE advice and not purse celiac anymore? My one aunt had 20-30 colon polyps removed and my other aunt (her sister) died recently from an aggressive colon cancer. I am being unreasonable to think the doc should have done biopsies?

Thanks for any input

OMG! ... The doc didn't do biopsies because with the naked eye... "it looked fine"? I'd get a hold of the head honcho and let them know what happened, and tell them you expect a biopsy at NO additional charge, to do what he was supposed to do in the first place, and that you want a different doctor of your choice to do it. That's just nuts! Sorry... I get a little upset when doctors don't do what they should.

The truth is, you can't see partial villous atrophy without microscope. You could have Marsh 1 or 2 which is nearly impossible to see with the naked eye... if not totally impossible. Doc "might" have been able to detect total villous atrophy but obviously that was not the case. Sheesh... Isn't that what you had the Endo for? Or was he/she/it looking for something else and the biopsy was an after though? Still, with your history, they should have done the biopsies.

Hi all,

I have celiac disease and have one celiac gene and one gluten sensitive gene (or allele I guess to use the better term).

So I had my son tested (he's seven) and his results are identical to mine, right down to the specific string of numbers for both alleles.

I have two questions:

1. Would you immediately get your son off gluten AS IF he had celiac disease because even if we don't see symptoms we can assume gluten over the long term will lead to inflammation? Does anyone address this issue in the literature or research?

2. Would you interpret these results to mean that my husband and I have one or both of these alleles in common? Since I only contribute one allele, then one of these two that my son has had to come from his dad even if it's the same as mine, right? Partly, I'm trying to figure if my husband needs to be tested too in the potential situation that I contributed the gluten sensitive gene and HE contributed the celiac gene to our son. I don't really understand how this stuff works and I read someone on here mention that Enterolab doesn't give the whole result, that there would be FOUR alleles to report. So is it possible the results they've given us are only the alleles I'VE contributed and we actually each contribute two and not one?

Thanks for any insight you all might have!

Hi Flor,

I might be able to shed some light on your genetic question but FIRST... I would address the issue of your son and gluten-free diet. First, you didn't say if he was showing any symptoms, and if he is I would DEFINITELY get him tested before going gluten-free. Secondly, I would NOT take him off gluten before having him tested by a physician who is familiar with celiac disease. I'm sure you know that once off gluten, it is very difficult to get an accurate positive test (or set of tests is a better way to look at it).

Most importantly, though... you need to understand that not all people who have the genetic markers get celiac disease, or gluten sensitivity/intolerance. If you take your family entirely gluten-free because its easier, with someone in the house that has Celiac, it won't hurt him.

Now... regarding genetic markers... Each parent passes down one pair of alleles that make up a HLA DQ marker. Generally it works like this:

Mom = HLA-DQA1*05/DQB1*02

Dad = HLA-DQA1*01/DQB1*0302

These are just EXAMPLES of how two genetic markers would look. I don't know what yours or your sons or his fathers look like, but son may have gotten ONE genetic marker (one pair of alleles) from mom that BOTH are associated with celiac, or he may have inherited one allele from each parent that is associated with celiac disease, OR... he may have only inherited one allele from one parent, that is celiac disease related. OR he could have inherited two DQ markers that have both pairs of alleles associated with celiac disease. There are lots of possibilities. The chains are sub-units a and b, so he could have an a and b, or two b's, or two sets of a&b that fall into the pool of people who have the possibility of getting celiac disease. Of that pool only a very small percentage of them will develope celiac disease. So basically genetic testing tells you NOTHING... other than he is excluded from the population likely to develop celiac disease, or he is included in that pool, and may possibly develop celiac disease.

Now that I've totally confused you.... If you post the test results ... it might tell more.

First of all, the 'normal' range for TSH changed in 2003. So the new range is .3 to 3.0, rather than .5 to 5.0. Many docs (esp. endocrinologists) prefer the top number be more like 1.5. So consider what range your doc uses.

Secondly, you need to consider several thyroid tests, such as free t4, free t3, total t4 and total t3, as well as thyroid peroxidase antibodies, which indicate Hashimoto's antibodies. If you have Hashimoto's your TSH, T3 and T4 scores can be normal, while your Hashimoto's antibodies are very high.

Consider seeing an endocrinologist, if your current doc won't give you the full panel of thyroid tests.

Yikes! burdee, I read this post of yours with interest the other day, and since then have looked up a few things, including tests my doctor has scheduled, and my last TSH. I'm thinking I need to find a new internal medicine doctor. My new GI is the one who scheduled the new tests! My TSH from a year ago last fall was 3.85. According to what you're saying above... that's a bit above the "new" normal range, yes? What the heck does this mean? Sheesh, my regular GP is a nice guy, but I have found like FOUR tests that are out of normal range...and he just let them slide! With all that's going on with me, I think I'll go in tomorrow morning and request the rest of my lab test results. I haven't really paid much attention to the thyroid threads ... until this one, but I guess it is commonly linked to celiac disease? Sheesh, so much to learn! Is 3.85 anything to be concerned about? If not ... GREAT! I have enough to worry about.

I have my appointment on Thursday morning, so I am hoping I get a bright, fresh and REASONABLE doc. But just in case I don't get what I am hoping for, I want to make sure I have all my ducks in a row. Right now my plan is:

Ask for genetic testing first, so I A) don't have to do a gluten challenge right away and B)it gives me some information that may help my mom, who despite having her colon removed (because of supposed UC) is still having lots of problems. We looked through her med records and from what we could find none of her docs ever looked at Celiac as an option, even though many of her symptoms matched it.

I have decided that no matter what, I do want the scopes, just so I can rule out anything serious. I don't really believe in invasive testing if it can be avoided but I think that in this case it will put my mind at ease regarding UC, Crohns and other things. I will be doing a GC before this happens and I will do both the colonoscopy and endoscopy.

My question to you all fine people is, do you have any advice if she starts telling me that there is no way I could have it? Do you think it would be a good idea to print off some research articles to take with me or should I just be pushy? I don't want to look like a hypochodriac or one of those people who go to the doc for attention. I asked her the last time "why do you say that?" And her response was "just from the tests", which I only had a Ttg, IgG and IgA done all while gluten lite. She acted like it didn't mean anything that I was GL at the time or that she didn't believe me.

I know I can't let the nerves get to me and that I just need to do whats right for me, no matter how pushy I need to be but I sure could use a confidence boost before I head in there!

Thanks guys for being so great and supportive. Other than a few homeopathic friends I have, you guys are the only ones who get it.

I think its a great idea for you to take some solid research from a well respected medical research team or journal, specifically if it relates to you and your symptoms. I made a list (sort of a timeline) of all my symptoms over the years, and took that with me. That way I didn't forget things that were important, and it kept me on track. The first idiot I saw, didn't care... my efforts were pointless, so he lost the gig.

I found a better doctor who DID listen and was interested in all that I had to say. He also asked me many questions, explained a few things (that I already knew from my endless research...but nice to know he was willing to tell me). If you go to Mayo Clinic's site and type in celiac, you will find a list of things you should ask your doctor, and things your doctor should ask you. That would be very helpful as well, at least for you to look over before you go. Good luck! I hope you end up with a fantastic doctor, who knows what this is all about.

Now this makes it unclear again, as 05* in the alpha chain means DQ2,5.

The first posting here said 02* in alpha and 0202 in beta, which is DQ2,2

It's really a non-issue, regardless this person is DQ2 positive.

Okay, that makes more sense. What does it really mean for me to have a low grade reaction like that to ALL of those things? Lord am I glad milk came back okay. I may be eating meat, veg and cheese for the rest of my life...doesn't sound so horrible actually! Does a wheat IGE have any correlation to celiac?

Allergy to wheat and intolerance to gluten are two entirely different animals. You can have zero wheat allergy and be gluten intolerant or celiac. You can also be allergic to wheat and be celiac or gluten intolerant. And, yeah that doesn't sound all that bad, at least you can have cheese! I'm jealous!

Thanks for the warm welcome! I'm honored to be a part of such a smart, well informed, caring community and I know we can make this a well known disease!

This is a tough question, and one that I'm currently grappling with. In the hospital, J ( my amazing fianc

I agree and in general i would be inclined to do that (diet and not procedure) but the new GI guy I saw (whom i really like), was highly suspicious of cleliac (he's an md at an adult celiac center at rush) but with my symptons is doing an endo where he is also going to look at other options (if it's not celiac).....i would like to definitly ruled in or out at this point, but am not dropping the hashi's thing. i have found what i hope is a good integrated health MD who will treat my hashis and thus, hopefully, get my symptons down. I actually am more inclined to think my gi symptons are related to hashi's than i am for celiac so am being a bit more proactive about that one, but not dropping celiac until i know for sure (basically i do not want to accidentily leave one untreated, as untreated - either can wreak havoc on your body and trigger other autoimmune problems - just another reason that if anyone is celiac and thinks about cheating they should consider the fact, that they may end up with more problems than another celiac episodes: they could trigger hashi's or graves!)

At the end of the day: hashis/graves/celiacs are something you should be on the look out for if you suffer from any of them. If they rule out celiac now, i will still request the yearly bloodtest to keep an eye one it. I will aslo run yearly tests for hashi's, graves to make sure one isn't about to swing out of wack.

I'm thankful for this board b/c i wouldnt have even known how to test to see if i had hashis! and bam: i finally have something to go on!

Immuniology is so complicated! my biggest time killer has been researching and seeking out docs who dont waste my time....After over a year, I am finally getting somewhere

I think you're in very good hands at the celiac center, nuttmegs17. I would trust that they know what they are doing, and as long as you tell them about the 3 weeks gluten-free, they will know how to test and what to have you do to make sure they get a true diagnosis for you. Sounds like you're really on the right track with a good doctor now!

I'm really trying to get my grandmother tested, as she's had IBS and fibromyalgia my entire life, along with chronic constipation and a whole host of other issues that could be gluten- and other intolerance-related.

My doctor told me that only those who have digestive problems and celiac symptoms should get tested...

but if insurance covers it and there's a chance that someone's a silent celiac, why not test 'em?

Her symptoms don't sound very silent to me... IBS is miserable. I think lots of people that get diagnosed with fibromayalgia and IBS are really celiac, and don't have those two issues once they go gluten free. It seems since doctors didn't know a THING about celiac ten years and more ago.... they "tried" to put other illness labels on people who are just now being diagnosed and their "other illnesses" go away. Pretty compelling reason for her to get tested, I'd say! It IS genetic after all.

I'm so sad reading this. First of all, I'm new to the forums. But they may have saved my life. I am a doctor of emergency medicine at a well known "research" hospital. I just spent over a month in the hospital with every type of horrific test you can imagine. I was getting so much worse in the hospital that my Fiancee and I were forced to do our own research and diagnoses. I'm so sad to say I almost died bc of the doctors', including three different GI docs, absolute lack of knowledge about this disease. I cannot understand why it's so hidden from the world when it's more common than HIV, breast cancer and skin cancer put together. It makes no sense. You HAVE to find an MD who knows about this and specializes in it. The others know nothing and most aren't willing to do a little research to learn.

Welcome, Doctor... and I hope you're feeling much better! First...thanks for joining our discussion and telling us you're a doctor. Quick question for you... Do you have any suggestions for how we can get our "uninformed" doctors to read up, or learn or take us seriously? It seems many of them are insulted, or just make people feel like they're crazy rather than doing the job they are paid to do. What would be the best approach? Any thoughts?

I've come to the realization that I am the only one that is going to be the most expert on all things me. I don't need the validation of an opinion, test etc to tell that dairy, soy and gluten make me feel unbelievably horrible. I can be responsible and just direct my health. It's working so far!

BRAVO annegirl!!!!!! That's exactly right! Good for you... you keep making yourself better! I posted a couple of articles oth the "prediagnosis" forums and when I found them I wanted to SHOUT THEM FROM THE ROOFTOPS! Please PLEASE please... read them... they were written for YOU! Enjoy the read... it will validate you!

University of Maryland School of Medicine Researchers Identify Key Pathogenic Differences Between Celiac Disease & Gluten Sensitivity

Thursday, March 10, 2011

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Dr. Alessio Fasano directs the Center for Celiac Rsearch.

"Scientists at the University of Maryland School of Medicine

This is how it is setup:

Celiac Disease HLA DQ Assoc.

Test Result

DQ2(DQA1 0501/0505, DQB1 02XX) Positive

DQ8 (DQA1 03XX, DQB1 0302) Negative

Yep if what you originally posted is correct, you would be DQ2.2 positive.

I have no idea how to go gluten-free and I am worried about that. A LOT. 2. If the blood test comes back negative, what do I do? Do I try for an endoscopy even though I had one less than a month ago? He did not biopsy then so it would be for a different reason. Or do I just try to give up gluten?

I don't know what to do. It's been a rough few months, and the past 11 weeks have been hell. I have gone from a healthy 24 year old who competed in triathlons to walking with a cane due to debilitating pain. I am feeling defeated.

Hi sprklechica07,

First off... welcome to the forums. Secondly, you have showed up here like probably 98% of us... terrified, or frustrated, or confused, or scared, or all of the above, and THAT is completely normal.

I would say this... fear is compounded by the unknown, so I would suggest reading as much as you need to, so that you understand as much as makes you feel comfortable. There are some really good books out there, and the people on these forums are FABULOUS resources for information, as well as amazing moral support! I can't say enough good about them! (And you all know who you are... YES, I mean YOU! )

Having said that, I would ask you if you feel confident in your GI? (If no... find a good GI that you trust.) If yes, have them run a FULL celiac panel...which isn't always easy to do. I have had one test at a time since January... BUT I noticed you said your blood test (singular)... and as you probably have read, many come back false negative... so a few is better. There are also some people who are IGA Deficient, and that can mess up your blood test results if you're one of them. If it comes back negative, ask for more blood tests.

I was considering just saying "screw these idiot doctors" and going gluten free on my own... until I did some serious thinking after reading "Celiac Disease A Hidden Epidemic" by Dr Peter Greene. That one really made me think twice about trying to diagnose myself, and its a good thing I didn't. I have an endo biopsy scheduled for mid April, but my GI is also running a bunch of other tests ... and thinks I might have some thyroid issues too. I wouldn't have known that. There are other related issues with celiac disease that you might miss, if you don't get a professional diagnosis. That's just my opinion. Get it diagnosed if you can. If you can't (as some people here have not been able to do) then consider going gluten-free if you feel it might help, and you will get an answer from your body. Its just that celiac disease can have other things going on that need to be treated aside from just going gluten free. Hope you get the answers you're looking for, and that you feel better soon!

As far as not knowing how to go gluten-free... again, the people here are a great source of help and encouragement! They will give you links and resources that will make it much easier! Like I said they are great! Again, welcome and hope you have good results real soon! And keep eating gluten if you're going to get the biopsy...which I would recommend talking to your doctor about ASAP!

hey- my lab/docs didnt have the DGP test yet either... it is fairly new.

and keep on top of everything till u get the answers you need-

also- the hair falling out is more thyroid related (i guess it could be celiac related if you had really bad vitamin deficiencies). and the DH rash only occurs in 20% of Celiacs- so you dont have to have the rash either.

but then of course- Psoraisis & Excema, Acne, and Dandruff are all very very common in those with Wheat/Gluten Intolerance- regardless of whether u have celiac or NCGI.

its real fun isnt it- this journey to some sort of diagnosis... our med. system is so far behind on the gluten connection. and i just read yesterday that 97% of Celiacs in this country are undiagnosed. AND 47% of those with Thyroid Disease are undiagnosed. meaning- we kind of have to do all the legwork, huh

I kind of don't think I have thyroid issues... but then again I have NO CLUE what kind of symptoms that causes. Ugh... I guess more research and studying is in order. I have never had eczema, but my brother and sister both do... one of them also has other celiac related issues.

Yeah, that figure was 98% undiagnosed... now its down to a whopping 97%... and truthfully, I would bet 96% of them have been tossed into the ... "we don't know what's wrong with you, so you have IBS" pool... and half of those have thyroid issues. Every medical institution should REQUIRE every doctor to attend a day long seminar of intense training on celiac disease and gluten intolerance in general!!! It should be a LAW~ ! You're such a day brightener cassP...

i know, what is it with docs not running the tests you specifically ask for and blowing you off?

as for the lipid panel, I think there is some link between fat and cholesterol and it indicating either hashi's or graves...however I'm getting fuzzy....its good to see your doc is thinking outside the box a bit though!

i saw my gi guy at the celiac center today. I am already impressed. 1. HE LISTENED! 2. he knew more than i did (Which as snobby as it sounds, feels like a first) and 3. he had a great bedside manner. I did not feel talked down to or blown off. he even had a sense of humor. He took into account my history of graves, the hashi anitbodies and taught me a few things

He has me scheduled for a procedure in April He would have actually squeezed me in tomorrow (he was very eager and even asked the desk lady to find a spot for me asap) but unfortunately my work schedule is the problem. I think it's the endo procedure everyone mentions on here. He talked about varying levels of damage, and mentioned looking for bacterial overgrowth in addition to something else i never heard of. I actually feel like i am in good hands to have it ruled either in or out (and if it's out, he is already way ahead of me in thinking about what else it could be). he mentioned that the blood test i had doesnt really tell us anything at the end of the day at least as far as I am concerned (talked about varying levels of celiacs basically).

I am also set up to go for the integrated health guy on the 31st regarinding my thyroid and have an appt on the books with another one mid-april in case this guys stinks.

My celiac guy today actually paid attention to my Vit D and Ferratin levels and even told me my B12 was low for someone who isn't vegan (i didnt even catch that, haha despite all my research!)

Nice to be taken seriously.

I feel worse than every -the dizziness feeling inflammed/bloated, puffy is just getting worse, so I hope this all pans out!

nuttmegs17, I'm SOOOOOO happy that you found a good GI!!!!!!! YAY! Finally something is going right for someone with a doctor that knows more than the people here! That's very good news for you! Thanks for sharing your positive experience! And, yes, hopefully you'll be feeling FABULOUS real soon!

um, i dont know how to break up the quote anyways- YES- i would love for all our docs to read these posts- they have no idea sometimes...

and your tests:

Lipid Panel= Cholesterol (should be HDL, LDL, and total #) and whatever else your lab includes

TSH is Thyroid Stimulating Hormone. i forget- either your pituitary or hypothalamus makes this- and when the thyroid isnt working properly- it makes more to signal the thyroid to work.

and

T4 free is T4 (Thiroxiine <-sp?)... its the precursor hormone your thyroid makes which should be turned into T3.

i REALLY think it's important for your labs to also include the T3 Free on every test too- this is a very important number- it indicates so much!

the other test- i have no idea what that is.

you might also want to ask your doctor to test ALL your Thyroid Antibodies!!! very important to see what's going on there!

keep us posted

Thanks cassP, I have no clue about anything related to thyroid.... and *crossing fingers* ... hope I really never need too learn much about it, at least relating to me! Apparently, my GI thinks there's a reason to check things, though. Personally, I think I'm gluten intolerant, and most likely NCGS. (not sure if I have celiac, but I know I don't have severe things like hair falling out, and rash, etc.... so I'm not sure about the celiac disease)... but I guess I'll find out mid-April about that. I sure wish I could get the doctor to do DGP test, but he said... its TOO NEW! OMG he actually said, they're only using that in the testing phase. I had to tell him, no, actually places like Mayo Clinic use that on a regular basis, and it has replaced the older tests. He sort of blew me off, but I think he was a little embarassed. Anyway, he didn't order it...said he didn't think it was available in their lab yet... pffffft. Why is is like pulling teeth to get these guys to do a full panel? I have had 2 tests and HLA, so I guess they think that's enough, but the two I had are often negative, so I'm still pretty much in limbo. Thanks again for the info, cassP!

I hate waiting for medical news.

ME TOOOOO! My testing starting end of January and won't be over until mid April... at least IF its celiac disease or NCGS. Keep us posted on your progress! Good progess reports always give me hope.

6% is a pretty large number of people. That should get some attention from researchers.

LOL... Sorry for laughing but ... IMO the only money for research will come from gluten free food companies! The big pharmaceutical companies have zero interest in Gluten Intolerance and Celiac, because it is not treated with drugs, and people already know it can be successfully treated with diet.

University research, and independent research hospitals are the ones that have made attempts, but that has been limited, and certainly the findings are not reaching the general physican population. Sadly, that's the biggest gap right now... uneducated doctors. Hopefully, they will start taking more notice now!

Bleh... hiccup! Please removed if/when you see this, kind moderator. Sorry!

Howdy everyone. I am quite confused - I received the results of bloodwork in the mail today. The "transglutaminase IGA ABS" (7), IgG (1130), IgA(233), and IgM(105) tests were all normal. The bloodwork was ordered in the wake of a positive biopsy result for celiac. The endoscopy was due to acid reflux symptoms, so this whole affair was quite surprising. I hope to talk to the GI doc early next week. After 3 days gluten-free I my appetite is suddenly back to normal and the reflux has nearly vanished. Also I was definitely not gluten-free before the blood work. I had it done immediately after the meeting w/ the GI doc.

So what's the deal: positive biopsy means positive for celiac, no matter the blood test results?

There are a few other things that "mimic" villous atrophy in the small intestines, and it could take an expert lab tech to tell the difference, but having said that... if you do have symptoms of Celiac, that could very well be what it is, without positive serology.

Hopefully, you have a good doctor, and good lab that can make the distinction for you. I know there is a condition that looks similar to villous atrophy that can be treated with a drug that resolves the issue. I do have a video source for physicians that you could look at if you like. It could always be sent to your doctor for review.

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I got real sick last August, I was having D up to 12 times per day. After all the testing my results "suggested" I "might" have microscopic colitis. Celiac blood tests were negative.

I went on and tested thru enterolab and my results said that I DO NOT possess the main HLA-DQB1 celiac gene, however I do possess two copies of a gene that predisposes me to gluten sensitivity.

I recently seen a new GI doctor and he has me scheduled for an endoscopy April 4th, he wants to check me for celiac and he stated that microscopic colitis can go hand in hand with celiac.

My big question is: Since enterolab shows that I do not have the celiac gene, is there any real possibility that I can still have celiac? Is the endoscopy a big waste of money if I do not possess the celiac gene performed thru enterolab?

Can you post the genetic test results?

Nuttmegs17, So sorry to hear you're feeling so bad, and having such a rough time with doctors. Your frustration is echoed in so many posts on this forum, that I wish all doctors would just sit down and read through them for an hour... they would be FLABBERGASTED... and embarrassed and ashamed! Nobody should have to feel bad and worse until their lab tests are sufficiently bad... why can't doctors just believe what patients tell them. Its awful that you've had to beg for tests.

What stage of celiac disease testing are you in? Its hard to keep track!

Hopefully, you will get some answers soon, but I agree with you... sometimes the wonderful people on this forum are the only understanding and supportive resources we have. Everybody else thinks we're whining, or crazy, or just want to find something wrong for kicks or something... that's frustrating!

After reading lots of replies from the others here with thyroid problems, I felt so totally ignorant about the topic, but apparently my new GI (the one that scheduled the endo biopsy for mid April) also ordered the following tests:

LIPID PANEL

SERUM IMMUNOELECTROPHORESIS

TSH

T4 FREE

After reading through the posts, I guess he must suspect thyroid issues? Can anybody that reads this tell me what those are for, specifically? The lipid panel I think is cholesterol (which in my case is always crazy good... which is an indication of celiac disease) ... maybe he didn't believe the last one lol Its always been between 131 and 151. I have no idea what the other three tests are for. Anybody know? Thanks in advance.

And Nuttmegs, you hang in there... and keep smiling... we're here for you!

While it is nice to get confirmation that it is not all in my head, I would like to be normal and not worry about the whole gluten-free and now dairy-free too.

What has me completely confused is the gene testing. It says I have 2 copies of the DQB1-0201 and DBQ1-0302 so it that 4 genes (or maybe chromosomes) or 2 and then what is the HLA-DQ 2,3 (subtype 2,8).

I loved the genetics portion of biology but that was 20 years ago and it didn't go into this depth. Is there an Idiots Guide to Gene Testing?

Anyway, here are the actual results:

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0302

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,8)

Interpretation Of HLA-DQ Testing: HLA-DQB1 gene analysis reveals that you have two copies of the main genes that predispose to gluten sensitivity and celiac sprue, HLA-DQB1*0201 or HLA-DQB1*0302. Having two copies of a gluten sensitive or celiac gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe

Your question about your genetic testing is similar to one I just responded to yesterday in the "Celiac Disease - Pre-Diagnosis, Testing & Symptoms" forum ...the thread was "So Confused About Test". Rather than retype inserting your genetic info... take a look at that post. Your situation is a little different, in that you received HLA-DQB markers from both of your parents that are in the gene pool of "Celiac" possibility. You receive one HLA-DQA and one HLA-DQB allele (one pair) from each parent. In your case BOTH of the HLA-DQB alleles are the culprits.

From your results I don't know what your HLA-DQA1 markers are but I'll just put x's in so you can see what your two markers from your parents would look like in their entirety.

HLA-DQA1*XXXX/DQB1*0201

HLA-DQA1*XXXX/DQB1*0302

They didn't list your DQA1 alleles because apparently they were NOT Celiac related genes, but both of your DQB alleles are celiac related. As you can see you received half of a pair from each parent that relate to celiac as opposed to someone like me who received one genetic pair related to celiac disease from just ONE parent (HLA-DQA1*0501/DQB1*0201)

If you have more specific questions, send me a message and I'll try to direct you to more helpful info. good luck to you!