Misdiagnosis Six Years Later?

[Chuck1004]

9 minutes ago, Beverage said:

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.

Can you please reference your source?  I’ve discussed celiac disease extensively with three GI practices over the years, as well as my own reading, and I never saw the statistic that accidental gluten increases your risk of colon cancer by 4,000%. 

[Beverage]

Hi. It was in an article in the celiac.com newsletter.  I am on my mobile now.   I will try to look for it later when I get home.

[Chuck1004]

Much appreciated!

[lyfan]

I'd also be most curious to see a source cited for that. It goes against anything I've heard. Can't even find any objective actuarial stats that shower a lower life expectancy for celiacs. And a 4000x increase in colon cancer certainly should nudge that.

[Beverage]

I apologize. I cannot find the article. Searching past articles on this site is not as easy as I thought. I am 99% sure it was in the newsletter, about a year or so ago.  I just remember I was totally shocked about the risk of getting glutened regularly.  It talked about getting gluten once a month regularly...NOT for celiac's that adhere to a gluten free diet, so nobody go off that deep end.  I about fell off my seat when I read the percentage.  I will continue to look for it, but we have just had 2 deaths in immediate family this week and I don't expect to be able to have time to do that soon.

[cyclinglady]

I think that getting lymphoma is what is attributed to celiac disease.  The risk is higher than the general population for untreated celiac disease.  

https://www.beyondceliac.org/research-news/View-Research-News/1394/postid--12545/

We all know that celiac disease can impact many organ systems, so there is always a risk of other cancers.  

https://celiac.org/about-the-foundation/featured-news/2014/09/celiac-disease-and-cancer-risk/

1 hour ago, Beverage said:

I apologize. I cannot find the article. Searching past articles on this site is not as easy as I thought. I am 99% sure it was in the newsletter, about a year or so ago.  I just remember I was totally shocked about the risk of getting glutened regularly.  It talked about getting gluten once a month regularly...NOT for celiac's that adhere to a gluten free diet, so nobody go off that deep end.  I about fell off my seat when I read the percentage.  I will continue to look for it, but we have just had 2 deaths in immediate family this week and I don't expect to be able to have time to do that soon.

I am so sorry for your loss.  

[lyfan]

Cyclinglady-

 I think the consensus of the truly scientific [read: objective and not mistaking coincidence for causality] resaerch that has only been done in the past 10? years on Celiac, is that at this point in time no one KNOWS if it is actually a CAUSE of problems, or rather, the canary in the coal mine. The allergic response to wheat may simply be a symptom of a greater and more complex issue. And that greater issue, whether it is a gut microbiome imbalanace, or a leaky gut problem, or whatever, is behind the number of sometimes fatal auto-immune diseases and other "effects of celiac" that have traditionally been claimed.

 I was told by my parents that when I was an infant the doctor said I had celiac, prescribed some diet changes, and said don't worry they grow out of it. Which I apparently did for forty odd years--at which point no one knew what was biting me. But as Jack Nicholson said in The Shining...."I'm Back!"

I've seen a lot of supposition that the post-WW2 steady increase in celiac may or may not really be an increase, because the associated diseases simply people in their 50's and 60's by then. Now, there's a good chance (i.e. colon cancer screening) that some of the "associated" problems can be managed.

But direct causality between celiac and any other problems? Yes, malabsorption (again, bearing in mind the celiac may be an effect as well, not a cause), skin problems, a host of things...but I still don't find anything "fatal enough" so it is published as being a killer. Suspected, yes, but that's like the argument over butter-versus-margarine.

Or have I missed a good source of solid stats?

[AIMama]

I don't think this has been mentioned yet, but I asked a panelist at a Celiac conference about the changing of reactions in Celiac disease over time and he explained that it is actually like a roller coaster.  Just like those of us who have psoriasis, eczema, etc--sometimes these go into remission and we don't react to things the way we did at other times.  Then for some inexplicable reason, we are triggered and react again.  The problem is that with Celiac we cannot visually see that this AI disease has been triggered or has gone into remission.  So, if you cheat and don't see a reaction, someone may be tempted to question their diagnosis.  It could be that your immune response is not being triggered at that moment.  But then, maybe it will get triggered if you push your luck, and you will suffer silently as the damage is done on the inside before you finally start showing the obvious symptoms again.  To me, lifelong adherence to a gluten-free diet (without knowingly cheating) is a no-brainer.  It's the most important thing you can do for yourself.

[Chuck1004]

10 minutes ago, AIMama said:

  It could be that your immune response is not being triggered at that moment.  But then, maybe it will get triggered if you push your luck, and you will suffer silently as the damage is done on the inside before you finally start showing the obvious symptoms again.  To me, lifelong adherence to a gluten-free diet (without knowingly cheating) is a no-brainer.  It's the most important thing you can do for yourself.

The only issue (and I have my first appointment next week to pursue this) is I have never had a reaction, never had  evidence of villi blunting, and after six years of rare cheating and likely more frequent accidental contamination, showed no evidence of celiac disease on labs or in biopsy.  All I have is a single positive antibody test from seven years ago and elevated leukocytes on biopsy seven years ago.

I’d be fine being adherent to a gluten free diet for life if it came to that, but I’m in a strange situation where the diagnosing hospital is questioning their own diagnosis.

[plumbago]

Chuck,

Was that a normal endoscopy you had in 2012?

From another post you made at https://www.celiac.com/forums/topic/121153-six-years-after-diagnosis-2nd-endoscopy-results/?tab=comments#comment-990090

you mentioned the results which I've copied below:

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.

Plumbago

[Chuck1004]

1 minute ago, plumbago said:

Chuck,

Was that a normal endoscopy you had in 2012?

From another post you made at https://www.celiac.com/forums/topic/121153-six-years-after-diagnosis-2nd-endoscopy-results/?tab=comments#comment-990090

you mentioned the results which I've copied below:

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.

Plumbago

Correct.  Elevated antibody, increased leukocytes, no villi blunting and normal architecture in 2012, no evidence of celiac disease on followup biopsy in 2018, no evidence of elevated antibodies on followup labs, no notable reaction to gluten at any time.

[Chuck1004]

16 minutes ago, plumbago said:

Chuck,

Was that a normal endoscopy you had in 2012?

From another post you made at https://www.celiac.com/forums/topic/121153-six-years-after-diagnosis-2nd-endoscopy-results/?tab=comments#comment-990090

you mentioned the results which I've copied below:

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.

Plumbago

And just to clarify from my initial post when I threw my situation out there, I've been under the impression for six years that I was diagnosed early prior to intestinal damage.  A followup GI doc raised the point that research at MGH-Boston is showing that false positives are more likely than initially thought on the antibody lab and the IEE count in itself is not conclusive as well.  To put it to rest, I'm going five weeks into a gluten challenge.  If I show evidence of damage or heightened labs after not seeing them for years, that will be evidence enough for me.

[plumbago]

12 minutes ago, Chuck1004 said:

And just to clarify from my initial post when I threw my situation out there, I've been under the impression for six years that I was diagnosed early prior to intestinal damage.  A followup GI doc raised the point that research at MGH-Boston is showing that false positives are more likely than initially thought on the antibody lab and the IEE count in itself is not conclusive as well.  To put it to rest, I'm going five weeks into a gluten challenge.  If I show evidence of damage or heightened labs after not seeing them for years, that will be evidence enough for me.

I can imagine you may be tiring of our skepticism, but one more: are you curious what this was due to?

 CD3 immunostain demonstrates increased intraepithelial lymphocytes
throughout most of the architecturally preserved villi.

[Chuck1004]

20 minutes ago, plumbago said:

I can imagine you may be tiring of our skepticism, but one more: are you curious what this was due to?

 CD3 immunostain demonstrates increased intraepithelial lymphocytes
throughout most of the architecturally preserved villi.

Somewhat.  The staff from the celiac research center indicated it alone would not be sufficiently diagnostic for celiac disease, and as hasn't reoccurred in seven years, it may no longer ben an issue.

The way I see it:

I'm either a celiac who was diagnosed early before any damage occurred, the IEEs resolved as soon as a mostly gluten free diet was introduced, and as a result of the diet there's no evidence of celiac disease.  Once I complete the gluten challenge, I'll likely see the impact of eating gluten and that will settle things.  

Or, as the celiac research center staff have indicated, the positive antibody may have been a false positive, the IEEs from seven years ago may have been related to something else, and my lack of any reaction to gluten, and despite rare cheating and discovering I'd been more frequently contaminated (French fries from a nearby restaurant were not cooked in dedicated oil as I thought) I have no evidence of celiac disease on biopsy or lab because I was never one in the first place.

I'm happy to stay on a gluten free diet for life.  I just want to make sure I really need to do so.

To your question, the IEEs are either evidence of celiac disease, or show something funky was going on seven years ago that hasn't led to anything.

 

[Awol cast iron stomach]

On 12/27/2018 at 9:03 PM, Awol cast iron stomach said:

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

Not sure if you came across this summary at all. Sorry I do not have access to the full article .

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

Good luck with rest of challenge and getting the answers you need to put the past finding to rest. ?

 

[Chuck1004]

10 minutes ago, Awol cast iron stomach said:

Not sure if you came across this summary at all. Sorry I do not have access to the full article .

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

Good luck with rest of challenge and getting the answers you need to put the past finding to rest. ?

 

Many thanks!  I did read that article.  I have no trouble believing I'm a celiac, but that both the IEEs possibly being from something else, and the potential false positives on the antibody lab makes me want to doublecheck.  Hopefully I'll know in a couple of months.

[Posterboy]

4 hours ago, Chuck1004 said:

Many thanks!  I did read that article.  I have no trouble believing I'm a celiac, but that both the IEEs possibly being from something else, and the potential false positives on the antibody lab makes me want to doublecheck.  Hopefully I'll know in a couple of months.

Chuck1004,

Here is a recent research article that might help you.

The mayo clinic just studied this same question about possible misdiagnosis's of celiac disease and other possible causes.

https://www.mayoclinicproceedings.org/article/S0025-6196(17)30892-3/fulltext

what I would like to know was you sick at the time from a flu bug or possibly the EBV.

though rare infectious disease can trigger transient villous atrophy that might of triggered your IEL's leading to a possible false positive.  see this recent research on the possbile EBV connection.

https://www.celiac.com/forums/topic/121466-epstein-barr-virus-linked-to-seven-serious-diseases-including-celiac-disease/

Just trying to help you look for answers that so far seem puzzling? if the reaction was not  a transient reaction possible due other sickness you might of had at the time but are now over.  And if the hunch is wrong at least you know it is possible but certaintly it is not common. see the mayo clinics general approach to enteropathy paragraph and figure 2 that follows.

quoting  "Celiac disease is by far the most common cause of villous atrophy (79%-93% of cases) in the United States.⁴ If celiac disease is deemed unlikely, we recommend revisiting the history and considering further testing as outlined in Figure 2"

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

Posterboy by the Grace of God,

[raha]

I was told that the chance of having celiac is near zero if you don't have one or both of the genes.

Did you have the genetic testing on your blood?

[Scott Adams]

@raha you are correct about the odds of have celiac disease when negative for the genetic markers, however all markers have not been discovered yet, and there is more research being done that is uncovering more markers than were known. But still, I think you are correct getting a genetic test. I know that one of our current advertisers (full disclosure!), ALCAT, is offering a free genetic test this month when you do their food sensitivity panel.

[Chuck1004]

An update on my status.  My local GI doc said it was a borderline diagnosis.  No villi damage, elevated IEEs 7 years ago on biopsy, elevated ttg iga on first lab.

Seven years following rare cheating and accidental contamination (fries at a local place weren’t as gluten-free as I thought) perfect repeat biopsy.

I’ve been eating gluten daily (normal meals, not just a bite of bread) for seven weeks and had a repeat ttg iga.  It was normal.  My doc will call me Tuesday but he said he’d likely do a repeat and an endoscopy while I’m on gluten.