MsCurious

You did it again. Great Post!! Your post help me answer what I should be doing after I have my biospy. I have a positive DGP IGG test.

I felt I was in limbo until I had the results of the test. (I know you have the same feeling). Now I feel I can proceed forward with my healing process what ever my biopsy results are. Your post really help me find the answer I needed. Big Thanks!

Igg, YOU JUST MADE MY DAY! It's so nice to know I could have helped even one person in some small way! This is a long journey... feel like I've been in the "pre-diagnosis forum" forEVER, and I'm sure you do, too! LOL But, I'm learning a lot and it feels good to know I can make even a teensy difference in relieving someone's frustration level. Thanks for letting me know it helped!

I wonder what her take is on DH. Having DH is considered a firm diagnosis of celiac disease and is not referred to as gluten sensitivity or intolerance instead. But many times folks with DH have no intestinal symptoms or villi atrophy for years if at all. So much we still don't know.

Hey Raven,

I looked it up for you... Dr. Crowe responds...

The ABCs (and TTGs) of Celiac Disease Testing

First, by definition, a diagnosis of celiac disease requires abnormal microscopic findings in small intestinal biopsy specimens. One exception to this rule occurs when a patient has a skin condition known as dermatitis herpetiformis, in which case a characteristically abnormal skin biopsy result can substitute for checking intestinal biopsies.

You make an interesting point though... in these cases... there need not be villous atropny to make a diagnosis! Rather inconsistent with the "gold standard" isn't it?

Still here, lurking, and playing the waiting game. Hopefully, will have EMA results Monday, provided the lab didn't screw things up (should have been back by now). I have no idea if test results will be positive or negative... no idea if I'm celiac or NCGS.... but regardless, after reading endless posts of frustration, and sometimes heartwrenching stories, I can empathize with all of you. I found this article very validating... no matter WHAT is going on with you, and the doctor admittedly agrees that there is a huge need for massive research, and they really know next to NOTHING about the different gluten sensitivities, and the "journey" of gluten sensitivity people have to endure to reach the "golden ring" of a celiac diagnosis. Personally, I think there are several "kinds" of gluten sensitivity that manifest different symptoms, but the result is all the same... we are sick, and gluten makes us sick. They seem to have no research to "validate" us so they make us feel crazy. Well, this article made me feel better, just by virtue of doctor admitting that they really can't diagnose something for which they have no hard scientific proof. I guess that's why when they can't diagnose celiac disease, they just say, try the gluten-free and if it works, great. I have a feeling its going to be a LONG time before there are difinitive answers for a lot of us. Thank goodness for this forum.

Here, Dr. Sheila Crowe, a professor in the division of gastroenterology and hepatology in the department of medicine at the University of Virginia, responds to readers who asked whether you can be intolerant to gluten, the way some people might be intolerant to milk, without having full-blown celiac disease.

Intolerant to Gluten Without Having Celiac Disease?

Q.What is your take on non-celiac gluten intolerance? There are some medical professionals who say that without the definitive markers of celiac disease (blunt villi, positive blood work), there is no reason to ever change to a gluten-free diet.

Could it be that the markers only become evident after a certain degree of damage and ill heath has been attained, and that celiac is really part of a spectrum of disease relating to the body

From Mayo Clinic: Open Original Shared Link

"Gluten-challenge testing requires adequate gluten intake for long enough to develop gut lesions. Four slices of whole wheat bread daily for 4 weeks usually suffices. However, it will make patients ill and they can become quite symptomatic. There are some patients who are delayed responders and if a patient has had no symptoms develop by 4 weeks, I will usually perform serology. If it becomes positive at that point, we

We're waiting for blood test results for ourselves and our daughter has been diagnosed with celiac disease.

What are the benefits of being "officially" diagnosed through the biopsy? I mean, if our blood results have high Ttg numbers, that means we are reacting to gluten to some degree, so the diet will help - right? Are there any advantages to being officially diagnosed with celiac disease versus assuming that you either have it or have sensitivity to gluten, and just choosing the diet?

It is a myth that if you have celiac disease, all you need to worry about is avoiding gluten.

Even when they're completely gluten-free, people with celiac disease need to be concerned about their cholesterol levels, their vitamin status, and their weight. In addition, people with celiac disease need to be aware that a variety of symptoms and medical conditions can be related to celiac disease.

If you are diagnosed, your medical provider will be more likely to monitor and watch for things that could develop related to celiac disease. Also, I think it gives you necessary "ammo" to get schools to comply with gluten-free diet restrictions for your child, and in some countries, an official diagnosis allows for benefits to help offset added expense of gluten-free diet. Hope this helps.

Hmmmm... this is just my opinion, but if you and your doctor are not a team... if your doctor talks "at you" and not WITH you... you should probably find another. They need to listen to you, and give you time to tell them ALL of what is going on. If you like your doctor, make another appointment, and be prepared when you go in. By that I mean, make a list of EVERYTHING that is bothering you and go through the list with Dr.

Some things we don't think are related, in fact really ARE related... in the diagnostic world, and your doctor needs all your symptoms and time frames, etc, to make a good diagnosis. Start at the beginning and make a "timeline" list, and don't stop talking until you've voiced all your concerns, and then ask the doctor, "if it was your body, what would you do? " That usually jolts them back into reality, that you're a REAL person...not just another number. Good luck to you! Feel better soon!

LOL MsCurious- u r so thorough

i was about to reply untill u answered your own question. ya, my ttg was really really weak. if it wasnt for my EMA, i would have probably dismissed it all. i honestly dont think my "gluten challenge" was long enough.. especially since the previous 8 years i was mostly wheat free.

our bodies are so complicated- and this disease is so mysterious. my symptoms have changed thruout the years... and i never even got DH untill after i went gluten free. i had had SEVERE excema in my 20's.. SEVERE i cannot even describe it- and that went away when i went on atkins/bloodtype. (not even 100% gluten free). im sure our levels of antibodies and their locations change a great deal

now, im just blabbing

Hehee... yeah thorough after going through this for DECADES with no answer! I'm so ready to have a result! I wish they would have just done the whole panel instead of a test here a test there, but I suppose they're trying to save coins if they don't have to do them all, I dunno. I've never had eczema but my sister and brother both have it. I also have been anemic, had multiple miscarriages, practically non-existant vitamin D level, all the "fun" tummy troubles... blah blah blah... So, yep, really trying to make sure this time they figure it out! Hope like heck I'm not driving you all bonkers... you've all been so helpful! This waiting game is so hard... but I'm getting to the end of it I hope. I think this EMA is the last thing... unless they decided to go ahead with the biopsy ... but I don't think I'll need it if EmA is positive. If its negative. pffffft.... I'm going gluten-free...at least for a month and then I'll know with or without Doc's. ;P Honestly, without my "thoroughness" ... they would have just said IBS and that would have been the end of that.

And you're NEVER ... babbling! Everything you share helps someone along the way. So... for that I say... "Thank you for babbling!"

Been poking around on the forums, because I'm sure somewhere along the line, someone has addressed this question. I found a post by cassP that looks "kind of" like my situation. That gives me a little light ... Thanks cassP ... your previous post just helped me out again.

cassP: "u know (of course i only had a 2 week gluten challenge- not enough)- but my Antigliadin were SOLID negative. and my TTG Iga & Igg were only like an 8 on the 1st test & a 7 on the 2nd (weak positive).. the only part of my test that was a solid positive was the Endomysial Antibody. my docs didnt know what to do with that... they simply said- if i feel better eating gluten free, then i should.

2 years later i ordered the gene test (im double DQ8), and after going gluten free i got DH. so, u see- these test results can be very misleading..

you only got the TTG done. and you've got a DQ2.5, right? sounds like Celiac is not off the table yet."

This waiting is so hard. Still planning on going gluten-free when the tests are DONE...either way... to "test" for myself if its negative. TOo many symptoms not to.

Sorry to pester you all again, but I'm just curious if anyone has actually had the experience of a negative tTG IgA (Tissue Transglutaminase IGA) and then had a positive IgA-EmA (endomysial antibodies)? Thanks! Really curious about that. I have had Positive DQ2.5 genetic marker, oodles of symptoms, negative tTG IgA and still waiting for IgA-EmA... but not sure that's even a possibility at this point.

They did a bunch of allergy tests on me... all negative for the most part. Pretty allergic to birch trees, but I don't plan in ingesting one of those anytimes soon! Other than that, just slight allergic reaction to oak trees and shrimp. So really they can't attribute my symptoms to allergies, unless its something they didn't test.

So, still playing the waiting game, but just curious if anyone has ever had negative tTG IgA and positive EMA. THANKS!

PS: Really looking forward to graduating from the pre-diagnosis portion of the forums... LOL!

Speaking of nightshades, if you're allergic to one or two for sure...are you allergic to the rest? Or is that a random thing too?

Ditto what Raven said. DON'T stop eating gluten until you have been tested. Painful as it is... keep lots of it in your diet until the blood tests and/or biopsy are done, or your test results will possibly be a false negative. You have a LOT of the same symptoms that I have, and I know how uncomfortable/painful and NOT FUN it is to keep eating things that you suspect are making you ill, but it will soon be over. Once the tests are done you can stop eating gluten.

I have a few more days to go, and then hopefully I am off the hook, and I can't wait! In the mean time... I'm putting up with the headaches, fatigue, tummy aches, bloating, gas and all the fun digestive issues but it will be worth it to have an answer. They suspect food allergies with me as well, so I have tests in progress as we speak. Hopefully, results tomorrow. Have they done any of those for you?

I have a ton of allergies that run in my family, and I have the genetic DQ2.5 marker for Celiac, so I really have no idea at this point exactly what is causing the issues. So they are testing for both. I read yesterday that the two highest risk factors for celiac are 1. if a first degree family member has it (diagnosed) 2. if you have DQ2.5 marker, then it goes on from there, but who knows. They are still doing research and finding new information all the time.

I think like people say on here.. get tested. If positive ... GREAT .. you know what to do.. gluten free diet. If negative... give gluten free diet a good try and if you feel better... that's your answer... you're gluten intolerant. If that doesn't seem to do the trick for you... you probably have other food intolerances or allergies that you need to track down. Like my husband says, its like opening up a big puzzle box of 2000 pieces of a picture of the ocean ! LOL Not an easy task, but just keep at it and dont' get discouraged. This forum is a great source of support, suggestions and resources. Good luck! And hope you feel better really soon!

Have you ever been tested for Celiac? You have enough symptoms that I would ask doctor about it for sure. I'm still trying to figure out whats wrong with me, and a lot of your symptoms sound like mine. The instant bloating, pain, etc after eating...etc. BUT having said that, I'm thinking you should also see an allergist, because food intolerance and allergic reaction are quite different. Often food intolerances show up hours or a day or two after ingesting something your system doesn't tolerate, but allergies will give an almost instant reaction... usually instant up to an hour or so after ingestion from what I understand. So it would be prudent on your part to investigate both of those options, based on how quickly you're affected. Good luck, and hope you get answers and feel much better soon!

Note that Dr. Alessio Fasano who was basically the father of endoscopy as being the gold standard is now less certain. He gives 5 diagnostic criteria and says you need to meet 4 to be diagnosed with celiac. Thought folks might find this abstract interesting.

Celiac disease diagnosis: simple rules are better than complicated algorithms.

Catassi Carlo; Fasano Alessio (Profiled Author: Alessio Fasano)

Mucosal Biology Research and Center for Celiac Research, University of Maryland, School of Medicine, Baltimore, MD 21201, USA.

The American journal of medicine 2010;123(8):691-3.

PubMedAbstract

Celiac disease is the only treatable autoimmune disease, provided that a correct diagnosis is achieved and a strict, lifelong gluten-free diet is implemented. The current diagnostic algorithm for celiac disease includes initial screening serological tests, followed by a confirmatory small intestinal biopsy showing the autoimmune insult typical of celiac disease. The biopsy, considered the diagnostic gold standard, has been recently questioned as a reliable and conclusive test for every case. Indeed, the wide variability of celiac disease-related findings suggests that it is difficult to conceptualize the diagnostic process into rigid algorithms that do not always cover the clinical complexity of this disease. Instead we find clinically useful the shifting to a quantitative approach that can be defined as the "4 out of 5" rule: the diagnosis of celiac disease is confirmed if at least 4 of the following 5 criteria are satisfied: typical symptoms of celiac disease; positivity of serum celiac disease immunoglobulin, A class autoantibodies at high titer; human leukocyte antigen (HLA)-DQ2 or DQ8 genotypes; celiac enteropathy at the small bowel biopsy; and response to the gluten-free diet.

Thanks for posting this. I have postponed my biopsy until additional serum tests are completed, and then 4 of the five will have been met. I was thinking if they came back positive, I wouldn't do the biopsy. I think reading this just sealed the deal for me. No need for cutting when its evident without. At this point in time, for me its still possible that it is other food allergies or intolerances, so I'm just waiting for results.

Update: Regular doctor got allergist involved, and they BOTH ordered new tests. The most recent ordered by my doctor is IgA way out of whack high, and he sent EMA IgA to Quest Labs so that will take a while. Not sure exactly what that will do, but time will tell.

I asked allergist what he though about biopsy, and he said, lets postpone that until lab test results are back and I said that I'm ALL FOR THAT! Hopefully, if/when that gets rescheduled, I can figure out a way to have a different doctor (other than "G I Jerk") do it. Things are definitely looking UP! So much more hopeful now! They actually have a documented IgA test that is elevated ...and now they have to figure out why.. so FINALLY the wheels are in motion for a concrete reason... not just me telling them how I feel!

Side note: Even though... my "best guess" from my silly layman's research was apparently "off" LOL... with my suspicion of IgA deficiency... it sparked something with my doctor, that caused him to consult with the allergist, and after they both talked, they BOTH ordered new tests. SOoooo, even though I wasn't exactly right... my inquisitive nature and asking questions is getting results. In this case 2 (or 3 if you count me LOL) are better than one!

I used Enterolab. That was back when they were allowed to ship to NY state, they aren't now. I didn't have it done as part of my diagnosis. I had it done 5 years after because my blood and biopsy positive daughter, who had great success with the diet, decided to get retested in college. She was tested at a very well respected hospital where she went to school and was told her diagnosis was false and that she couldn't be celiac because she doesn't have DQ2 or DQ8. That prompted me to test. That was when I found that I don't have those genes either although I have a firm celiac diagnosis. I did a great deal of research and discovered my genes are considered RA associated here but are celiac associated in other countries. Interestingly many RA patients have also been diagnosed with 'IBS' and some like myself have seen their RA go into remission with the diet. Thus my urging of folks not to accept the 'you can't be celiac because you don't have those two genes'.

So it is your DQ test that you were referring to? I just wondered if there was a "Gluten Intolerance test" out there that I wasn't aware of. And yeah, from what I'm reading, there seem to be connections with RA and at the very least the antibodies and immune system. Its probably all related. They're still finding those things out.

My doctor got allergist involved and now I'm starting to get the tests that will probably diagnose me. Persistence seems to pay off. Its not a popularity contest... I'm sure my doctor thinks... okay... okay... lets just get this done and get you out of my hair! LOL

Long story short there are the test results in the order they were done, but I can't really figure out what the tTg IgA and IgG and the last IgA and IgG mean. Thanks in advance for your input!

Edit: removed test results since nobody really had any input on this. Sorry... if I could I would remove topic, since it really has no helpful use for anyone.

Hi zebaldwin,

Just wanted to tell you ... I was feeling really hopeless and frustrated two days ago, so I know what you feel like. It seems overwhelming and endless, but it will get better. I took an active approach and I'm really getting things hopping on my end. Got the IGA deficiency test I wanted to determine if that's what caused first tTG to be negative. That will answer a lot of questions. I have approval for biopsy and that is postponed for these test results, and hopefully I can reschedule with someone other than "G I Jerk"

BUT ... none of this would have happened without my proactive approach, and tons of reading and research and connecting the dots and self advocating with the doctors... Being persistent! AND.... AND .... AND... last but not least... the WONDERFUL support and kind words and wise advice I've received from the wonderful members of this community.

Keep that in mind. Don't give up... and keep trying! Best of luck to you ...it will get better!

Hey Raven,

What test is this specifically? Gluten Sensitivity Gene Test Aug 2007

I saw that on your sig and wondered... Thank ya!

UPDATE: Reg doc just called and said he scheduled a phone appointment for me with an allergist!? Hmmmm...

I did speak to him again about the IgA deficiency possibility and the alternative tTG for people that have that. He said he would do more research and if I couldn't get the tests I want with allergist... then he would order them. I'm thinking the HMO admonishes the doctors for doing "outside" lab tests and he probably got his hands slapped for doing the DQ test on me or something...so now he's afraid to do more tests...and is trying to get the allergist to do it so it falls in his statistics and he'll be the one reprimanded for it.

I should have said...don't give up on me now...we're just about golden!

Okay, I need more input from the "people in the know"! After all the tears, then anger, and frustration after my GI episode yesterday, I decided to roll up my sleeves and do what they won't! Step one: the facts:

1. I know my symptoms and they point to celiac disease... NOT IBS!

2. I have a postive genetic marker for celiac disease DQ2/2.5

3. tTG IgA IgG came back negative (false negative she asks?)

3. Idiot GI doctor refused to listen, refused to do any more tests,and scheduled a biopsy Monday "just to show me how wrong I am"

4. I DON'T trust GI.. PERIOD!

Those are the facts as we know them... so I start from the top WHY was my tTG negative? So I look for answers and find that this particular test is very very accurate..... for 90% of the population! So, there's 10% who test false negative, and I think to myself ... well somebody's got to be in that 10% ...it could be me. SO, I read further and find that IgA deficiency (quite common and something that is overlooked MOST of the time because it causes such mild reaction) can cause negative test result.

Hmmm.. okay I think to myself... what does IgA Deficiency mean? SOooo.. I google it and find that it is directly related to issues of chronic irritation/infection that goes generally unnoticed and unreported...and affects mucosal membrane in mouth, THROAT, lung airway, digestive tract...etc. DING DING DING! We have a winner here! Its almost a family joke ... how often I have either a low grade or full blown sore throat. I'd say realistically its probably 70% of the time at least! GOOD GRIEF..and I told BOTH doctors about my chronic sore throats! SO, I'm thinking .... if I get the Total Serum IgA and that shows an IgA deficiency, and they do the alternative tTG test what works for people with that issue rather than the one they ran on me.... and it shows positive.... If you were me, would a positive tTG and a Positive DQ2/2.5 be enough for you without a biopsy? I'm thinking if I can get him to confirm that much... I'm good!

Now, about the GI doctor... when I spoke with my regular doctor this morning, I told him that the GI doctor was "not my favorite person... that he disregarded me, wouldn't listen to my symptoms and insisted that I have IBS.... really based on NOTHING! He said he had this guy do some GI test (internal) to figure out bleeding in his mother in law and he did a good job. I said, well, do you have another name for me? Then he said phone appointment time was up and he would research the tests I asked about, and call me back today. He had already spoken to the GI guy, btw...not sure who called whom... but they have spoken.

Then, my regular doctor said... have you tried gluten-free diet? And I said, yes for about 4 - 5 days, and he said did it help? And I said yes. THen he said, so why do you want to do biopsy then? Result is the same... gluten-free Diet! I said, well for one thing, if I DO have celiac disease... there are other things to monitor...and make sure I don't get some other related thing from it. He said, you'd have symptoms and we would test that at the time. Then he said... if I were you I'd just do gluten-free and if it works for you ...great! If not, let me know. Then he said, its better if you DON'T have celiac disease diagnosis on chart for insurance purposes (pre-existing condition..blah blah).... SOOOOOOOOOOOOOOOOOOOOOOOOOO What do you experts think of all this? I still want the blood tests... but beyond that.. I don't think I'm gonna do the biopsy ..even though it is scheduled for Monday...and my doctor trusted this guy to do his Mother in Law.... EEEKS! MOTHER IN LAW..... maybe that is PRECISELY why he let him do it! LOL

I agree that you definitely need a new doctor.

And I was another Celiac with big weight gain (60 pounds overweight). Less than 5 months gluten-free and the 60 pounds is gone.

Now THAT is encouraging! Thanks for sharing that shopgirl!

I would strongly suggest you write out a detailed account of your interaction (or lack thereof) with your doctor during this visit, and how rudely and disrespectfully you were treated. Ask them if this is really what they are paying their physician members to do. Bring some sh*t down on this pompous &%%hole who knows nothing - maybe it will force him to sharpen up his game. At least it will affect his standing amongst his fellow practitioners and with the HMO, who I am sure will be very solicitous of the way you were treated. Every patient deserves respect!! You might send along with your letter some recent info about celiac disease symptoms and statistics to back up your position, because the HMO probably won't know either. You will need something to support your position. But do do it. Type it out right away, and then wait a week or so until you simmer down and go back and edit it so you don't come off like a looney (because everyone is all too ready to dismiss you as such) and you can bring a pile of horse manure down on this dude. I am so sorry you had to suffer through one of these visits. They are so belittling and demeaning. The Doctor God syndrome run amok.

P.S. I waited longer before I did it because I was afraid of jeopardzing my care with the HMO but from their response I found out I should not have, they will take care or you because they do want to find out about dudes like this.

Thanks, so much Mushroom for your support and sound advice. I was thinking about doing just that! I wrote a post to you...the phone was ringing... carpet cleaner came, and husband called... when I got back to the screen ... I couldn't tell if I posted it or not! Hoping it shows up on page two! LOL I have more info from the conversation with my regular doctor... will post that in a bit, but I DO NEED everybody's sound input on it! Kind of at a decision point here, critical to diagnosis. Doctor suggested something strange.

GAH! This is an edited in comment... I went and looked and my first BIG OLE informational post to all of you vanished! SO, I will try again. More fun and adventures in the life and "bad" times of celiac patient trying to get the doctors to even remotely do their jobs!

Ms Curious, I know how you feel.

Also,I was FAT for years--and always sick with "IBS" ...BULLONEY. So, celiacs are large and small in size.

This guy is Freakin ClueLESS!! You--we--deserve better treatment.

Yeah, he was beyond CLUELESS! Thanks for words of support!

MsCurious:

DEFINITELY get a NEW doctor- this one is a huge A$$.. and u dont want to waste ur time & money on the scope- we all guarantee that he'll take ONE biopsy then stamp u a negative... what an a$$... so so annoying.. i wish i could have been with u at ur appointment, i would have taught him a thing or two

your last four lines of gene numbers are the alpha & beta parts to your 2 genes... the one i can translate to a DQ2.5 (the most classic celiac gene).. but i cannot translate your other gene.. sorry.. hopefully another member can help u with that... but its not a DQ2 or a DQ8.. its definitely at least a "gluten sensitive" gene.. and can possibly contribute to celiac.

Thanks for the support and helpful thoughts, cassP.

Keep in mind that you cannot fail out of med school. Once you're in, you're in. This means your doctor could have failed every class three times, but would be allowed to stay and keep taking them as long as he's paying. This means that any physician could be one of the ones that should have been thrown out.

My personal assumption is that the more pompous you are, the closer you were to the bottom of your class.

Report him and find a new doc.

The bottom of the class was my exact thoughts...and I told my husband that very thing. He thinks I should find a different doctor, and so do I!