Misdiagnosis Six Years Later?

[Chuck1004]

Hi,

Not looking for medical advice, but just curious if this has come up before.

Six years ago my primary care sent me to a GI doc due to an elevated liver enzyme, trying to track down the cause.  The cause was benign, but in doing a barrage of tests, I learned I had elevated Anti TTG IGA AB antibodies.  My level was 45 with a range of 1-10.  It was suspected I had celiac disease based on that lab, and an endoscopy was ordered.  The results of the biopsy was as follows:

"A. DUODENUM BIOPSY:  
Duodenal mucosa with increased intraepithelial lymphocytes and normal villous
architecture, (see note).

Note: A CD3 immunostain demonstrates increased intraepithelial lymphocytes
throughout most of the architecturally preserved villi. Although non-specific,
in conjunction with the known positive serum IgA TTG, the findings support a
diagnosis of celiac disease. "

I was told that the minor immune response and antibody level was sufficient to diagnose me as a celiac, and the lack of villi damage just meant they caught it very early.  I went gluten free, and my subsequent antibody labs were normal.  Six years later, I underwent a followup endoscopy, and there was no indication of active celiac disease.  I was told to keep up the good work.

I returned to the original hospital with my daughter this year to see what we needed to do to check her for celiac disease.  The doctors, in reviewing my diagnosis, indicated that science has come a long was since 2012 and they don't believe I was ever a celiac.  The villi was normal, the antibody lab has been shown to trigger false positives, and I've never had difficulty eating gluten, cheating once or twice a year on special occasions.  They scheduled a followup with their office, and my primary care wants me to see someone in the local network so it may delay things for a few weeks, but in the past two weeks, I've eaten gluten daily with no adverse effects.

Just seeking feedback from those reading...does the initial diagnosis seem suspect in 2018, and more specifically would a 4 week gluten challenge be sufficient to show on lab work?  My hope is I'll eat gluten for a month, and my antibodies will still show normal when they should be elevated.

Many thanks.

[cyclinglady]

55 minutes ago, Chuck1004 said:

Hi,

Not looking for medical advice, but just curious if this has come up before.

Six years ago my primary care sent me to a GI doc due to an elevated liver enzyme, trying to track down the cause.  The cause was benign, but in doing a barrage of tests, I learned I had elevated Anti TTG IGA AB antibodies.  My level was 45 with a range of 1-10.  It was suspected I had celiac disease based on that lab, and an endoscopy was ordered.  The results of the biopsy was as follows:

"A. DUODENUM BIOPSY:  
Duodenal mucosa with increased intraepithelial lymphocytes and normal villous
architecture, (see note).

Note: A CD3 immunostain demonstrates increased intraepithelial lymphocytes
throughout most of the architecturally preserved villi. Although non-specific,
in conjunction with the known positive serum IgA TTG, the findings support a
diagnosis of celiac disease. "

I was told that the minor immune response and antibody level was sufficient to diagnose me as a celiac, and the lack of villi damage just meant they caught it very early.  I went gluten free, and my subsequent antibody labs were normal.  Six years later, I underwent a followup endoscopy, and there was no indication of active celiac disease.  I was told to keep up the good work.

I returned to the original hospital with my daughter this year to see what we needed to do to check her for celiac disease.  The doctors, in reviewing my diagnosis, indicated that science has come a long was since 2012 and they don't believe I was ever a celiac.  The villi was normal, the antibody lab has been shown to trigger false positives, and I've never had difficulty eating gluten, cheating once or twice a year on special occasions.  They scheduled a followup with their office, and my primary care wants me to see someone in the local network so it may delay things for a few weeks, but in the past two weeks, I've eaten gluten daily with no adverse effects.

Just seeking feedback from those reading...does the initial diagnosis seem suspect in 2018, and more specifically would a 4 week gluten challenge be sufficient to show on lab work?  My hope is I'll eat gluten for a month, and my antibodies will still show normal when they should be elevated.

Many thanks.

Four weeks is NOT enough time for the blood test.  Celiac centers suggest 8 to 12 weeks. The University of Chicago’s celiac site:

https://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

 Why cut it shorter?  It can only add to the confusion.   Make sure this time you get the complete celiac panel which includes the DGP, TTG and EMA.  Some celiacs are silent.  When I was diagnosed, I had no GI issues.  I was shocked when my GI even suggested it.  I did have anemia but that was always blamed on menstruation.  Looking back, I had symptoms that would wax and wane over the decades.  Celiac disease is like a chameleon, always changing.  

How many biopsies were originally taken?  If they only gave you the TTG (which was pretty high you would think for a false positive), maybe they only took one or two samples when four to eight is recommended.  Also, the small intestine is vast.  It is easy to miss damaged areas, especially if your celiac disease was just starting.  

Please research this more!  

Watch this video from Dr. Murray at Mayo.  Again, four weeks for the blood test is too cohort.  Fine for another endoscopy, but not the blood test.  

http://celiacblog.mayoclinic.org/2015/11/23/was-my-gluten-challenge-too-short/

[Chuck1004]

1 hour ago, cyclinglady said:

How many biopsies were originally taken?  If they only gave you the TTG (which was pretty high you would think for a false positive), maybe they only took one or two samples when four to eight is recommended.  Also, the small intestine is vast.  It is easy to miss damaged areas, especially if your celiac disease was just starting.  

Thanks for responding.  The reports from six years ago don't mention the number of samples.  They only state "biopsies" were taken, and describe the samples as "0.4 x 0.3 x 0.1 cm aggregate of tissue fragments. Entirely in A1."

Three months and one year following the endoscopy the TTG returned to normal, and was normal again in 2018.  The followup endoscopy in 2018 also showed no villi damage.

It's entirely possible I am a celiac, or likewise seems possible I'm not.  It seems to be based off that one TTG lab that was abnormal.  I'm curious, when you were diagnosed, also asymptomatically, did you have villi damage?

[cyclinglady]

My biopsies revealed a Marsh Stage IIIB (moderate to severe patches of villi damage).  However, I only had a positive on the DGP IgA.  If my GI had not ordered the complete panel, my diagnosis would have been missed.  I went in for a routine cancer screening colonoscopy (yep, am over 50) and during the consult, the GI looked at my file and noticed that I had anemia for years.  He ordered the blood tests and the endoscopy (based on the blood test results).  

I have never had a positive on anything but the DGP IgA either which really is weird and none of my doctors can explain.  

Besides the anemia (no GI issues with gluten) I did have osteoporosis which was found two months after my diagnosis when  fractured my back doing nothing.  I also had been diagnosed earlier with autoimmune thyroiditis.  But every celiac is different.  It makes this disease so irritating.  

What is “entirely in A1” mean?  Biopsies should be taken my many different areas in the small intestine.  Many members report having just one taken.  ?

Some people do have slightly elevated TTGs when they have something like Crohn’s Disease, but yours was pretty elevated and it did resolve on the diet.  That seems like pretty compelling evidence indicating you do have celiac disease.  Not to mention the lymphocytes.  

http://www.archivesofpathology.org/doi/pdf/10.5858/arpa.2013-0261-RA

https://www.ncbi.nlm.nih.gov/pubmed/15996156

 

 

[frieze]

CL, you know what is comming.....sounds like a money grab from current docs. i would look for other medical providers, ASAP.  and disrespectful to the doc that dx you to begin with.  the first doc was a keeper, any way to see him/her again?

[notme]

On 12/22/2018 at 5:48 AM, frieze said:

CL, you know what is comming.....sounds like a money grab from current docs. i would look for other medical providers, ASAP.  and disrespectful to the doc that dx you to begin with.  the first doc was a keeper, any way to see him/her again?

i'm with frieze - an undiagnosed celiac is a medical industry's GOLD MINE.....  i suspect that is why it's so hard to get a firm diagnosis.  alllllll those lovely symptoms that they cannot make a zillion dollars on when you get diagnosed.  i recently had a doctor say i probably don't have it, then i said "i don't care.  it'll never be a pre-existing condition, then"  so he wrote it on my chart!!!   whatttt??!! 

my brother has been to doctor after doctor about all his issues, so far, he has:  diverticulitis, diverticulosis, discussed surgery, had his throat stretched (??!!), all kinds of things - the only thing that cleared everything up was gluten free diet and when he told his doctor that i had celiac, the doctor said well then, you probably do, too....   LOLZ

my sister, bless her, has been tested and tested - she has had soooo many health problems - she will never try the gluten-free diet without a doctor's dx.  i think she may be (legit) losing her mind and i wonder if that could be the cause.  because, celiac is so systemic.

one thing that really drives home the celiac dx for me:  one of my kids has r.a.(at age 12) and the other one has type 1 diabetes.  here, kids, have some autoimmune genes ? so, if you have any close relatives who also have celiac or one of their autoimmune cousins, it would be a pretty good indicator that you carry the wonky gene.  good luck!  get a second opinion! 

[Awol cast iron stomach]

Late to the post. My 2 cents. A celiac no longer a celiac? Sigh. 

I have no documented villi damage either, Can t finish my g challenge, have a lifetime of celiac symptoms, a gold standard cousin, and have several patches of DH tonight from skin exposure Friday. My chart finally says NCGS they misdiagnosed me for decades despite numerous opportunities to "see" it. So you had damage and inflammation levels enough for someone to declare you celiac, but not enough for someone to declare "enough" for him or her? Sounds like his/her problem.

Something going on there. Otherwise it would be all clear completely normal years back squeaky clean. Null and void. Not so!

My body and little patches of DH remind me what I am. Apparently I have read those with DH can eat gluten not show gold standard villi damage. Well even if test have come a long way, most professionals have not, I find most only know basics. 

My 2 cents live like a celiac. You are. No reason to doubt that except by another's interpretation. As very few Dr's think outside of box. Inflammation came from somewhere and cleared up Gluten-Free? Enough said.

I opened up Pandora s box -wish I never had. Don't be a lab rat. My NCGS diagnosis is still meaningless to most Dr and society. Ah and more importantly it is still a misdiagnosis, but at least in ball park . It got me sicker than when I ate gluten and two years  of illness and a job loss.I did it for the official diagnosis and to help my kids. My kids Dr still doesn't believe my kids could have gluten intolerance ?

Dr's are humans, some are bias, and as many of us on the forum can attest to they make mistakes. Live as a celiac or get a second opinion as the "danger Will Robinson" vibe is pinging me for my fellow commrade.

Stay safe

Good luck

[Chuck1004]

I’m sincerely appreciative of all the responses!  Due to my primary care network trying to keep me in-house, I’m going to be meeting with my local GI doc first rather than the specialist who suggested I may not be celiac, and may get bounced to see them if necessary.

To hit a couple of the comments, I was never thrilled with the original doctors who diagnosed me.  As I’m sure is SOP, I was seen by a more junior doctor and the senior doctor came in to review things at the end of the appointment.  His view was that celiac disease compliance wasn’t a huge deal and “try not to eat much gluten,” so I was not remotely impressed.  The junior doctor did the biopsy and insisted despite the lack of villi damage nor reaction to gluten that I was absolutely a celiac because of the antibody reading conjoining the biopsy.  As I immediately went gluten free, all subsequent readings were in the normal range.

Over the years, I’ve certainly cheated.  Not much.  On vacation for a day.  On my birthday.  Maybe 1-4 times a year, once in early years and four times in later years.  I always limit it to a single day.  I figure if I am glutened, live it up.  I’ve never had a reaction.

I’ve started my gluten challenge 11/28 and have an appointment with the local GI doc on 1/17.  I want to get an appropriate challenge in before retesting my labs.  Ironically, my belly is a mess this week from all the bugs my kid brought home from daycare.  I am laying off gluten for the week, just in case, trying to limit the variables.

My thought process at this point is I had a single antibody lab be high, no villi damage, and the elevated white blood cells on biopsy.  I would not be remotely surprised if I am actually a celiac.  Given that it’s the original hospital now saying research is showing that antibody test generates false positives, that it was only positive the once prior to the gluten-free diet, it’s worth checking only so that I don’t remain needlessly on a gluten-free diet.  I figure if the antibody rises again on the challenge, that will clinch it for me.

The inherent difficulty with this is excess variables.  Does my belly hurt eating gluten?  Well, no, but if I’m cheating, I’m going to eat all the foods I can’t normally eat.  I’m grabbing a calzone from my favorite pizza shop I haven’t visited in years, Chinese takeout, a big bowl of soup from Panera.  Who wouldn’t have indigestion?  I’m hopeful, if I am a celiac, my gut will heal up quickly and now we’ll know.

Reactions and suggestions are most welcome. 

[Chuck1004]

15 hours ago, Awol cast iron stomach said:

So you had damage and inflammation levels enough for someone to declare you celiac, but not enough for someone to declare "enough" for him or her? Sounds like his/her problem.

I just wanted to followup on this point directly.  The biopsy did not show villi damage.  We’re you basing the damage comment on the antibody or the leukocytes?

[plumbago]

It must be maddening to have such vague responses.

But regarding the lymphocytosis on your biopsy, according to a Grand Rounds lecture on the pathogenesis of celiac by Dr Hasan H. Hasan: “Gluten digests into gliadin. Gliadin gets into the epithelium and destroys the epithelial cells. It causes an overexpression of the cytokines, interleukin-15, and intraepithelial lymphocytosis.”

Could other things do that? Maybe. Have you ever been on blood pressure medications? There’s one called olmesartan that provokes a very similar response as Celiac.

"I returned to the original hospital" – what original hospital?

Your positive blood test, from my cheat sheet on celiac blood tests: “The enzyme TTG deamidates gliadin (a broken-down component of gluten). In reaction to the presence of TTG, the antibody immunoglobulin A (IgA) is produced. Raised IgA antibodies indicate short-term immune response, indicating ingestion of gluten 2-4 weeks preceding the test. It is not 100% specific: there are other causes of a positive test, including diabetes, heart failure, Crohn’s and others. Also, people who have celiac disease can get a negative result with this test. It is machine-read.”

"The doctors, in reviewing my diagnosis, indicated that science has come a long was since 2012 and they don't believe I was ever a celiac. The villi was normal, the antibody lab has been shown to trigger false positives."

What very specifically has been advanced? Please tell us!

Why would you cheat? I don't mean to berate, and I'm sorry if it comes off that way. My own feeling is, either do it all or do nothing because even occasional cheating provokes an inflammatory response and it does damage. It totally defeats the purpose to cheat. But I had made sure to see Dr Fasano before he left for Massachusetts, and he said, "You walked in the front door with celiac," so there was no doubt in my case.

I'm curious about those elevated liver enzymes. I think you said benign - what does that mean? Just a bit out of range? Or was that a lab error? Did you retest and they were within range?

Finally - have you thought about the genetic test for Celiac?

Plumbago

 

[Chuck1004]

5 minutes ago, plumbago said:

It must be maddening to have such vague responses.

But regarding the lymphocytosis on your biopsy, according to a Grand Rounds lecture on the pathogenesis of celiac by Dr Hasan H. Hasan: “Gluten digests into gliadin. Gliadin gets into the epithelium and destroys the epithelial cells. It causes an overexpression of the cytokines, interleukin-15, and intraepithelial lymphocytosis.”

Could other things do that? Maybe. Have you ever been on blood pressure medications? There’s one called olmesartan that provokes a very similar response as Celiac.

I have not.

5 minutes ago, plumbago said:

"I returned to the original hospital" – what original hospital?

I was diagnosed at Massachusetts General Hospital.  My daughter was seen by MGH who referred me to the director of the MGH Center for Celiac Research and Treatment.  Several of the staff at my daughter’s office also worked there.

5 minutes ago, plumbago said:

What very specifically has been advanced? Please tell us!

I haven’t had the appointment yet.  They indicated less reliance on the antibody test due to false positives.

5 minutes ago, plumbago said:

Why would you cheat? I don't mean to berate, and I'm sorry if it comes off that way. My own feeling is, either do it all or do nothing because even occasional cheating provokes an inflammatory response and it does damage. It totally defeats the purpose to cheat.

I have no GI symptoms and have made stringent efforts not to be glutened on a day to day basis.  Because I try to restrict casual glutening (as well as the annoyance of not knowing if you’re being glutened), I cheat rarely because I can.  Life is short.  If I eat something I love that I rarely have once a year and don’t gluten myself for six months, my assumption was my gut would heal.  Assuming I am a celiac, my last endoscopy showed no evidence of celiac disease and my antibody level was normal.  It seems to be it’s not doing me harm.

Oddly enough, I recently found that a restaurant I frequented pre-endoscopy was not as celiac safe as I thought. (Shared cooking oils.)

5 minutes ago, plumbago said:

But I had made sure to see Dr Fasano before he left for Massachusetts, and he said, "You walked in the front door with celiac," so there was no doubt in my case.

I don’t remotely envy your circumstances, so please don’t read the wrong way, but knowing “Don’t eat this that or the other thing or you’ll double over” is fairly straight forward.  You know what to do and know when you didn’t do it well enough.  My first few weeks on a gluten-free diet I remember was agony because I had no way of knowing if I was contaminating myself.

5 minutes ago, plumbago said:

I'm curious about those elevated liver enzymes. I think you said benign - what does that mean? Just a bit out of range? Or was that a lab error? Did you retest and they were within range?

My ALT level hovered around 48-52 on scales that range from 1-40 to 1-50.  I was later found to have a fatty liver.  My amylase level runs slightly high as well.  It could be normal for me.  I also carry alpha 1 antitrypsin deficiency so there may be a correlation there somewhere.  The GI docs I have met with have not been alarmed. 

5 minutes ago, plumbago said:

Finally - have you thought about the genetic test for Celiac?

Plumbago

 

I haven’t had it yet.  My understanding is if I have the test and it’s positive, I am likely a celiac, and if the test is negative it doesn’t really prove anything.  I’m absolutely open to taking it, but wasn’t clear if it would be more conclusive than  retesting.

[plumbago]

I’m wondering if they are now wanting to work you up from a liver and pancreas angle. It struck me as a bit strange that you said you had fatty liver with enzymes just barely out of range. Did they say NAFLD or NASH?

Although I did “walk through the front door” regarding a celiac disease dx, Dr Fasano meant from a labs and endoscopy point of view. I do not always know, either, when I have accidentally ingested gluten, and it would be a miracle indeed if it had not happened in 8 years. It is frustrating not to know - frustrating not knowing if that warm feeling, then a bad reaction after a meal out was a passing bacteria or virus or an exposure to gluten. I can’t always tell, and that’s partially because I just assume I’m always eating gluten-free. In other words, I have never done my own gluten challenge. Before I was diagnosed, of course I was eating gluten all the time, and I did have symptoms.

Quote

My understanding is if I have the test and it’s positive, I am likely a celiac, a nd if the test is negative it doesn’t really prove anything.  I’m absolutely open to taking it, but wasn’t clear if it would be more conclusive than  retesting.

That's not my understanding, but I’ll let others who know more about this weigh in.

[Chuck1004]

9 minutes ago, plumbago said:

I’m wondering if they are now wanting to work you up from a liver and pancreas angle. It struck me as a bit strange that you said you had fatty liver with enzymes just barely out of range. Did they say NAFLD or NASH?

No one has seen me yet to make that determination.  When my enzymes were slightly out of range, my PCP sent me for an ultrasound which diagnosed a fatty liver.  Blood work showed antitrypsin deficiency and the genetic test showed I was a carrier only.  The enzyme then went as out of range as it ever got (Something like 72 on a 1-40 scale, which I believe considers elevation in factors of 40?) and sent me to MGH, who tested it at 55 on their scale of 1-55, were unwilling to proceed to liver biopsy to determine staging since it wasn’t that elevated, and then they made the celiac diagnosis while I was seeing them there for that other matter.

They told me to lose 10-20lbs.  My PCP told me the same.  I did.  My levels went back to normal for a couple of years.  Then kids.  The weight came back and I’m back in the high 40s and low 50s.  My GI doc was unconcerned as it seemed to respond to weight loss once. 

As always, it’s on my list.

Any feedback on the LFTs very welcome  .

 

 

 

Quote

Although I did “walk through the front door” regarding a celiac disease dx, Dr Fasano meant from a labs and endoscopy point of view. I do not always know, either, when I have accidentally ingested gluten, and it would be a miracle indeed if it had not happened in 8 years. It is frustrating not to know - frustrating not knowing if that warm feeling, then a bad reaction after a meal out was a passing bacteria or virus or an exposure to gluten. I can’t always tell, and that’s partially because I just assume I’m always eating gluten-free. In other words, I have never done my own gluten challenge. Before I was diagnosed, of course I was eating gluten all the time, and I did have symptoms.

That's not my understanding, but I’ll let others who know more about this weigh in.

It didn’t seem to be the silver bullet so I was waiting to see if it was suggested.  Ditto on the issues.  I try incredibly hard to stay gluten-free and still was getting glutened at one location with no clue. 

[plumbago]

The liver is a blessedly regenerative organ (up to a point), but still listen to those doctors! Losing 7-10% of weight is said to improve things a lot (assuming you are overweight), as you seem to know already.

There's the ALT which you've already given, but there's also AST, which I don't think you have listed. In any event, there is something you may already know about called a Fib 4 calculator--

https://www.hepatitisc.uw.edu/page/clinical-calculators/fib-4

Quote

The Fibrosis-4 score helps to estimate the amount of scarring in the liver. Enter the required values to calculate the FIB-4 value. It will appear in the oval on the far right (highlighted in yellow).

Also get your hepatitis vaccines.

[Chuck1004]

29 minutes ago, plumbago said:

The liver is a blessedly regenerative organ (up to a point), but still listen to those doctors! Losing 7-10% of weight is said to improve things a lot (assuming you are overweight), as you seem to know already.

From your lips!

29 minutes ago, plumbago said:

There's the ALT which you've already given, but there's also AST, which I don't think you have listed. In any event, there is something you may already know about called a Fib 4 calculator--

https://www.hepatitisc.uw.edu/page/clinical-calculators/fib-4

Also get your hepatitis vaccines.

I have never seen this calculator before!  Looks like under 1.45 is the number to have and I'd top out at 1.  My AST has always been normal.  Last two labs from 2018 had it at 27.  Last two ALTs were 44 and 50.  Continuing our discussion of what's wrong with me, I ironically have pseudothrombocytopenia, so a lot of my platelet labs were crap and I don't have the most recent correct ones, but from what I remember I'm well in the comfort zone.

[cyclinglady]

Fatty Liver?  

I follow Dr. Robert Lustig, a Ped Endo out of UC San Francisco, who several years ago gave a lecture on UC (University of California) TV titled “Sugar the Bitter Truth”.  Watching it can give you an understanding on how the liver processes sugar and how corn sugar (which is cheap and plentiful) is suspected of causing fatty liver disease).  He is advocating sugar reduction.  

http://sugarscience.ucsf.edu/the-toxic-truth/#.XCecdhqIahA

You can catch his video on You Tube (8 million views):

https://m.youtube.com/watch?v=dBnniua6-oM

Sugar may be the culprit for fatty liver disease.    I have a friend who is a little ballerina and she has a fatty liver.  She never drinks alcohol.  By simply eliminating soda pop, she reversed her fatty liver.  

Now damage from cheating occasionally on a gluten free diet.....

I have been gluten free for five years.  I have been exposed to gluten a few times (never by my own hand) and confirmed by rechecking antibodies.  When I was first diagnosed, my stomach was fine.  No H. pylori.  Five years later, my small intestine is healthy, but gastric biopsies revealed Chronic Autoimmune Gastritis and a large polyp was  removed.  I am not a doctor, but I suspect that by activating my immune system (gluten/celiac flare up) triggered an additional autoimmune disorder.  For me, avoiding gluten is critical for my health and goes beyond few damaged villi.  

 

 

 

[Posterboy]

Chuck,

They have all given you good advice.

Often eating gluten free alone is enough to cause your liver enzymes to go down.

Mine was elevated before my celiac diagnosis but went down in time.

Here is a celiac.com article about high transaminase levels in celiac's.

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/liver-disease-and-celiac-disease/high-transaminase-levels-common-in-celiac-disease-r2117/

I took Milk Thistle also for a few years that helps your liver work better.

Milk thistle is not recommended for women and be careful with meds that work through the liver . .. because taking Milk thistle can change the way certain drugs is/are metabolized.  you can google it. much like they say be careful with grapefruit for some medicines for much of the same reasons.

here is an article about the type of drugs it can effect that use the cytochrome P-450 for their metabolism.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1312247/

I hope this is helpful but it is not medical advice.

Posterboy by grace of God,

[lyfan]

I would submit that "Do you have Celiac?" is actually just an intellectual exercise for the doctor, and as a question it has little to no real meaning for the patient.

Why? Because "Celiac" has no cure, and it has no unique requirements on the patient.

If you have Celiac, or you have non-celiac wheat sensitivity, is there any difference in the treatment and the lifestyle you now have to live? Not really. If an insurer is astute, once you've had a celiac diagnosis (right or wrong) in your doctor's notes, now you have a pre-existing condition and a correlation to a rash of possible autoimmune diseases to come, so you may find an insurance problem.

But in terms of what you can or should eat or avoid? No different from the mysterious NCWS.

If you do your best to go totally off gluten for two weeks, and push that into a month, that's not so hard to do. A safe--if damned boring--gluten-free diet can mean just eating streamed vegetables, meats, fish, rice. Good news, chocolate is still OK to eat, although you might want to take lactase pills with that. And non-dairy ice cream isn't the plastic it used to be.

If the pains and symptoms go away after you've gone gluten-free...Yes, sure, there's a value in finding out whether there's still something else wrong with you, perhaps causing malabsorption or other issues. If routine blood tests show you're "normal" enough...that may be as far as you need to go.

But when a doctor gets it into his or her head that the patient NEEDS THE GOLD STANDARD and come hell or high water they are going to pursue that despite any cost, risk, or inconvenience...Time for another doctor.

But I think for the majority of folks who are questioning whether they have celiac, the most useful thing is to do what we pretty much all had no choice but to do only 10-20 years ago. Stop eating "wheat", and if it makes you feel better? OK, worry about avoiding the hidden gluten, and take your time and be picky about all the other medical explorations.

[Chuck1004]

3 hours ago, lyfan said:

If you have Celiac, or you have non-celiac wheat sensitivity, is there any difference in the treatment and the lifestyle you now have to live? Not really. If an insurer is astute, once you've had a celiac diagnosis (right or wrong) in your doctor's notes, now you have a pre-existing condition and a correlation to a rash of possible autoimmune diseases to come, so you may find an insurance problem.

I'm completely asymptomatic, so a celiac diagnosis versus a celiac misdiagnosis certainly has a socio-economic impact.  On the insurance question, would you mind expanding?  My state has strong protections for pre-existing conditions, so I'm assuming this wouldn't be a tremendous burden in the event I shifted insurances?

3 hours ago, lyfan said:

A safe--if damned boring--gluten-free diet can mean just eating streamed vegetables, meats, fish, rice.

I've never had an issue finding a gluten-free diet that's non-bland.  There's just a cost to it. Marrying a pastry chef who bakes gluten-free probably helped.  ?

3 hours ago, lyfan said:

But when a doctor gets it into his or her head that the patient NEEDS THE GOLD STANDARD and come hell or high water they are going to pursue that despite any cost, risk, or inconvenience...Time for another doctor.

The situation I had here was a followup doctor questioned the initial doctor's findings.  I had elevated antibodies on one blood test and leukocytes were found on biopsy, but there was no villi damage or blunting.  

3 hours ago, lyfan said:

But I think for the majority of folks who are questioning whether they have celiac, the most useful thing is to do what we pretty much all had no choice but to do only 10-20 years ago. Stop eating "wheat", and if it makes you feel better? OK, worry about avoiding the hidden gluten, and take your time and be picky about all the other medical explorations.

If I were symptomatic I'd be casually concerned just to know if I had to bend over backwards to avoid cross contamination, but would maintain the gluten-free diet.  Not needing to do maintain one would be a big lifestyle change.

[notme]

On 12/28/2018 at 9:06 PM, Chuck1004 said:

I haven’t had the appointment yet.  They indicated less reliance on the antibody test due to false positives.

false negatives are more common than false positives.

[Posterboy]

Chuck and Lyfan,

Chuck, Cyclinglady gave you a good link ...in case you haven't had the chance to read it.

I know I post links alot (it seems) thinking others will read them . ... but we often only have time to scan the responses.  It just takes too long to read them sometimes.

But basically IEL's are/is like (a) precursor's to Villi Blunting.

I will post link again and abstract so you can read it in the text of the response (if you have not already)

https://www.ncbi.nlm.nih.gov/pubmed/15996156
It was entitled "Pathological and clinical significance of increased intraepithelial lymphocytes (IELs) in small bowel mucosa." which sounds like what is happening in your case. 

quoting the abstract from the IEL link cyclinglady quoted earlier.

"Pathological and clinical significance of increased intraepithelial lymphocytes (IELs) in small bowel mucosa.

Chang F1, Mahadeva U, Deere H.

Author information

Abstract

Intestinal intraepithelial lymphocytes (IELs) belong to a unique T-cell population interspersed between epithelial cells of both the small and large intestine. It is becoming increasingly recognised that an increased number of IELs with a normal villous architecture is within the wide spectrum of histological abnormalities observed in coeliac disease. An increased number of IELs is the earliest pathological change following gluten challenge and a high IEL count may be the only sign of gluten sensitivity. Therefore, the finding of a raised IEL count with normal villous architecture is of sufficient clinical importance to be reported in routine small bowel biopsies. However, it is evident that not all small intestinal biopsy specimens showing increased IELs are explained by gluten sensitivity. Increased IELs in small bowel mucosa have also been associated with autoimmune disorders, tropical sprue, food protein intolerance, Helicobacter pylori-associated gastritis, peptic duodenitis, parasitic and viral infections, as well as the development of intestinal lymphoma. Histological examination of a biopsy specimen of the small bowel remains the diagnostic gold standard for coeliac disease. There will be an ever increasing demand for histological confirmation of gluten sensitivity in patients in whom the classic microscopic appearance of flattened villi may not have fully developed. The more widespread recognition by histopathologists of the pattern of injury manifested by increased numbers of IELs in intestinal biopsy specimens will certainly help in early diagnosis of coeliac disease, lessen diagnostic confusion and influence the modern practice of gastrointestinal tract medicine. This review discusses some of the recent developments in clinical pathology pertaining to increased IELs in small bowel mucosal biopsies."

Though as they note Villi Blunting can sometimes be caused by other things.  Rule it (gluten) out first.  After my diagnosis I found my Losartan BP medicine was also causing Villi Blunting for me.

https://www.celiac.com/forums/topic/119462-what-else-can-cause-villi-blunting-has-any-body-had-expereince-with-losartan-and-villi-blunting/

see also this thread that covers the question/topic well of what if any difference is there between NCGS and/or celiac clinically

https://www.celiac.com/forums/topic/116215-first-is-was-then-it-isn%E2%80%99t%E2%80%A6-which-is-it/#comment-965813

Lyfan if you don't have time to read the whole thread linked above. ... it is a summary of the Columbia research a few years ago that explains it better than anything I have read on the topic.

I will link it below for easy reference.... Lyfan do read if it you get the chance I think it explains the clinical difference well.... NCGS in time becomes Celiac disease.

https://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html

Chuck and Lyfan I hope this is helpful but it is not medical advice.

As always “Consider what I say; and the Lord give thee understanding in all things”.

2 Timothy 2: 7

Posterboy by the grace of God,

[lyfan]

chuck-

 "I'm completely asymptomatic, so a celiac diagnosis versus a celiac misdiagnosis certainly has a socio-economic impact."

 OK, but if you have no symptoms, why would you look for a diagnosis? And if you were misdiagnosed, does that mean a doctor said you have celiac, for no reason? The only big economic impact I could see is that if you were told you were celiac (or NCWS) and "had to" shift to a more expensive diet, but again, why would you suspect misdiagnosis, and if so, not get a second opinion on that as well as asking about the non-symptomatic part/

 "On the insurance question, would you mind expanding?  My state has strong protections for pre-existing conditions, so I'm assuming this wouldn't be a tremendous burden in the event I shifted insurances? "

 Insurers each have actuarial secrets, that's the basis of their business. Not knowing what your state regulations might be, or if that's private or group insurance or ACA (all of which are changing anyway) there's no crystal ball, except to say that if ANYTHING, right or wrong, gets into your medical reports and gets read by an insurer, even mistakes get into the record and then you often CAN'T purge or correct them. The insurers don't care, and the regulators don't really care, because they know that if they push an insurer hard enough, they'll withdraw from the market leaving...no insurers.

 So if your records make NO indication of celiac and only say something general like "testing for possible Celiac, IBS, or other source of nutritional malabsorption and intestinal discomfort" that's one thing. If they say you actually are tested positive for something...an insurer can say "Yeah, let's look for one that's less of a risk." You just don't know what they'll base a decision on, so it is best to tell them NOTHING.

"I've never had an issue finding a gluten-free diet that's non-bland."

What is bacon bland?(G) Last week I discovered a decent gluten-free beer company (www.glutenberg.ca) that even makes a decent STOUT. Life is less bland now.

 "Marrying a pastry chef who bakes gluten-free probably helped."
And if s/he makes a gluten-free croissant that tastes like something I'd find at a French bakery in France...I'm coming over!

Check out Dr. Mark Hyman's books on healthy dieting. It can take some wading through to get past the philosophy and all (he does some PBS shows and most libraries have the books) but if you look at the new recipe books, a lot of it is "eastern" and uses a number of spice and ingredients that are not at all boring. Not always cheap, but you can work with non-organic items, following the bulk of what he says and compromising on budget. Think outside the box.

[Chuck1004]

2 hours ago, lyfan said:

OK, but if you have no symptoms, why would you look for a diagnosis? And if you were misdiagnosed, does that mean a doctor said you have celiac, for no reason? The only big economic impact I could see is that if you were told you were celiac (or NCWS) and "had to" shift to a more expensive diet, but again, why would you suspect misdiagnosis, and if so, not get a second opinion on that as well as asking about the non-symptomatic part/

My PCP was trying to get to the bottom of a slightly elevated LFT, and the referred GI doc found a high anti ttg iga antibody.  They did a biopsy which showed elevated leukocytes and normal villi and told me I was a celiac.  My then-new GI doc followed up with an endoscopy six years later and came back saying no evidence of celiac disease, so keep up the good work on the gluten free diet.  My daughter was referred back to the same hospital that diagnosed me to see what we should do for her and gluten, and in looking at my original diagnostic materials they said they wouldn't have made the same finding today without villi blunting based on the one lab and the endoscopy the way it was.

If it turns out I'm a celiac, it'll be fine.  We've got it down to a science.  Eating gluten free is certainly more expensive, more work, requires us to keep our kitchen gluten free, requires out of the box thinking at social events from time to time (I'm presenting at a conference where brown bagging was impractical and the organizers jumped through hoops at the last minute trying to get me something gluten free...I'm a guest at a wedding...cousin's high school graduation and the family tries to order something gluten free and stresses someone will contaminate it before it gets to me...)  I've brown bagged to post-wake mercy meals, have friends who don't mind sticking to celiac safe restaurants when we eat out...have great bosses who always make a side trip whenever they surprise the office with a pizza party.   But the reality is...if you found out you weren't a celiac tomorrow, and had no symptoms when you eat gluten, wouldn't it just be easier?   If I am I am, and if I'm not, it'll be one less thing for everyone to worry about.

[lyfan]

That all makes sense. Considering that six years ago, doctors were nudging in other in the ribs and saying "Hey, have you ever heard about this celiac thing?" it very much makes sense to re-examine the issue. These days, there are even some docs with credentials, experience, and the power of rational thought. And, some of the consumer genetic tests (23&me) will test for the presence of the two most common celiac genes, meaning if you don't have them, you might have celiac but it is unlikely. Quest Labs and some of the other national blood labs also do multiple blood tests, they have a "celiac" protein test group that any doc can order, and many insurers cover all the blood tests for free.

So, getting a preponderance of indicators is WAY simpler, cheaper, more reliable these days. And if you and your daughter both have some tests, and the same doc can compare them...all the more reason to say if there is or isn't "the same" indicators or reactions from both of you.

I know what you mean about wedding cake and other issues. I waved off the cake at one wedding, looked at the piece in front of a friend sitting next to me, and while we were talking about why I wasn't having any I said "Aren't you allergic to peanuts?" We didn't know what the chunky stuff on top was, but it sure looked like bits of assorted nuts.

And I just can express my pride in elf-control when i've told a server "I have a food allergy, anything I order MUST NOT HAVE BREAD OR WHEAT IN ANY FORM" and they say, oh, ok, gluten free...then come back with the bread and cracker tray. Hello? Really? They don't know there's, uh, WHEAT IN BREAD?

But 10-15 years ago, just trying to FIND a lab that could do protein tests to see if you were reacting to a change to a glutenous diet, would have probably required visiting a major research hospital. At least now it is almost as convenient as a trip to the DMV to get your license updated.(G)

[Beverage]

Just so you know, there is someone else here (me) who does not get symptoms from ingesting gluten one time here and there.  I have done it NOT intentionally, but it did happen because I reached for the wrong package of something.  No symptoms.  I have Celiac's.  If I eat gluten for a whole month, I do not get intestinal symptoms like you would think, but I feel like I've been hit by a truck.  The damage had been going on in my intestines all that time.  And if you do get convinced that you do have Celiac's, you should be aware that gluten exposure WHETHER YOU HAVE NOTICEABLE SYMPTOMS OR NOT, if that auto-immune response gets triggered, of ONLY once a month (which is really hard to not do when you are trying really hard, much less "cheating") gives you a 4,000 times more chance of Colon Cancer.  So I hope you do not have it, but if you do, you need to not cheat ever.