Eating gluten w no probs after 11 yrs gluten-free - thoughts?

[Elli-]

Hey guys!!!

I am in NYC and have had drs tell me “Oh you don’t have celiac.  It’s really hard to maintain a gluten free diet.”  Oh, well.  OK then I’ll decide not have it!  WTF!  

I’ve been gluten-free for 11-12 years.  For financial reasons, I kinda wanted to have a diagnosis, but I was freaked out about going back on gluten.  In the past yr, I’ve had SEVERE stomach pain unlike anything I had before I went gluten-free.  A doctor scoped me and I had a buncha stomach ulcers.  They cleared up a little but my stomach is constantly affected by gastritis which won’t go away.  So I’m on Omeprazole, Rantitidine (or whatever) and Sucralfate pretty much all the time now.  This whole situation may be exacerbated by my bipolar medications.  

I finally did the 23andme genetic test and the markers were there indicating increased risk for celiac including some pretty seious ones.  It’s the DQ8 plus some other weirder ones.  Anyway, I thought it said no there was no chance when I looked at it but I was still really freaked out to go back “on” gluten again.  Then I found out one of the pastas I got at this super amazing store hereafter referred to as the Gluten Free Promised Land was not gluten free.  They had so many gluten-free pastas I just didn’t look as closely as I might - it was Sfoglini “Hemp Radiators”.  I was wondering why it was so good!  And I wasn’t getting sick.  Then I looked at the ingredients and saw wheat and looked at the box and realised it didn’t say gluten-free anywhere on it - I just was tricked by it being Hemp.  So, freaked out totally, I tried a sandwich and got no reaction.  So then I just started eating whatever I wanted which was amazing!  But then I looked at my 23andme result again and saw that it wasn’t negative but that the markers were there.  I mean, I still have stomach problems beyond the gluten thing so it’s hard to say what my current upset stomach is all about.  But then I thought well I can do this for a month or two and then go get the biopsy again.  One of my celiac friends who’s a total celiac nerd and I were talking and we thought maybe it was possible that maybe my villii was so far healed up after 11 yrs that I wasn’t getting sick. Yet.  This is my 8th day of eating gluten (and kinda a lot of it cause let’s face it, tat s&*t is yummy!

Looking online, I was unable to find anyone who had gone back on gluten after such a long period of time.  I saw a few ppl who were on gluten-free diet for like 2 years and got totally sick right way after eating gluten.  But nothing in excess of 2 years about.  

I’d ask the guy I went to for the ulcers who is supposedly some sort of “celiac expert” according to Zocdoc, but the dude told me if I had like a donut a couple days before an endoscopy then that would be sufficient to see the results in the biopsy.  After I refused to go back on gluten for the test, he scoped me and said I “definitely don’t have celiac” based on a stomach lining that’s been 11yrs on a gluten free diet.  So.....I’m not feeling the trust here.  

Hopefully there are ppl on this list who are totally nerding out on the current research and can offer up an opinion - seeing as how the drs are 100% toally and thoroughly useless, even in NYC - is it possible that my villi just aren’t damaged enough to be sick yet and as we go along it’ll get bad?  Cause I’m not sure I want to destroy my health just to get a diagnosis when I might be able to keep looking and find a dr that can diagnose based on the genetic tests and the fact that a gluten-free diet helped.  And do you guys think it’s reasonable to maybe be able to find a doctor that will be willing to do that?

Thanks, guys.  Love this site.  

[Ennis-TX]

You have to be eating it for weeks before it shows up on a endoscope...you want to get tested again? Do a gluten challenge your starting it right, 12 weeks of gluten daily then get the blood test and following endoscope. Maybe your first Diagnosis was a mistake? This disease does not go away, heck you might have to consume the stuff for a few weeks before you start noticing damage. This disease is a chameleon and always changing with symptoms, just cause you do not see any does not mean it is not damaging/killing you on the inside. Open Original Shared Link

[kareng]

There is a promising test being developed that does not require a Gluten challenge to diagnose Celiac.  It could be a few years before it’s availablr in the US, I am not sure what approval level it is on currently.

[Elli-]

Quote

5 hours ago, kareng said:

There is a promising test being developed that does not require a Gluten challenge to diagnose Celiac.  It could be a few years before it’s availablr in the US, I am not sure what approval level it is on currently.

Yeah, I’m not so sure it’s worth it to get myself back to square one to get a dx.  I mean, I need to get a dx.  It would be super helpful, I mean.  But I also need to work and make money and not be ridiculously sick.  Do they ever write dx’s w a genetic test and the fact that gluten-free diet helped?  I dunno if anyone knows but.  Thanks so much for your reply!

 

6 hours ago, Ennis_TX said:

 

 

 

[Elli-]

6 hours ago, Ennis_TX said:

You have to be eating it for weeks before it shows up on a endoscope...you want to get tested again? Do a gluten challenge your starting it right, 12 weeks of gluten daily then get the blood test and following endoscope. Maybe your first Diagnosis was a mistake? This disease does not go away, heck you might have to consume the stuff for a few weeks before you start noticing damage. This disease is a chameleon and always changing with symptoms, just cause you do not see any does not mean it is not damaging/killing you on the inside. Open Original Shared Link

Yeah, no I did not ever get a dx which is the problem.  I was told abt the test but back in 2005/2006 I wasn’t able to get medical insurance due to pre-existing and it was before Obamacare, so I could not afford the test.  The guy recommended I start a gluten-free diet and see if it helped which it did.  I meant to try it for a couple weeks to see what up but now it’s been like 12 years.  Kinda got away from me there!   I realise celiac disease doesn’t go away but it was never nailed down as celiac disease. I’ve decided not to do the gluten challenge because if it’s taken me this long to get the villi all normal again I should not sacrifice that state of health.  I just need to find a doctor who can be open minded and not just decide “celiac disease is very fashionable and rare so you don’t have it”.  These ppl should really be ashamed to call themeles doctors when they won’t even investigate based on evidence.  Oh well.  Thanks for the reply!  

[Jmg]

7 hours ago, Ellie!!!!!!!!!!!!!!!! said:

Yeah, no I did not ever get a dx which is the problem.  I was told abt the test but back in 2005/2006 I wasn’t able to get medical insurance due to pre-existing and it was before Obamacare, so I could not afford the test.  The guy recommended I start a gluten-free diet and see if it helped which it did.  I meant to try it for a couple weeks to see what up but now it’s been like 12 years.  Kinda got away from me there!   I realise celiac disease doesn’t go away but it was never nailed down as celiac disease. I’ve decided not to do the gluten challenge because if it’s taken me this long to get the villi all normal again I should not sacrifice that state of health.  I just need to find a doctor who can be open minded and not just decide “celiac disease is very fashionable and rare so you don’t have it”.  These ppl should really be ashamed to call themeles

Hi Ellie  

For a doctor to diagnose you as celiac they are likely to want positive blood tests and then signs of villous atrophy via scope. Sometimes they can diagnose with just a positive response to the gluten free diet and then a positive scope, but that's pretty unusual. Either way you'd need to complete a gluten challenge.

from your post it seems like you responded positively to the gluten free diet so you are likely either an undiagnosed celiac or you have non celiac gluten sensitivity, basically your body responds badly to gluten, but your intestines don't show the atrophy damage associated with celiac.

I understand why you would want that diagnosis. i tested negative in my scope, but my gi advised me to be gluten free for life based on my response to the challenge. That's enough for me not to continue chasing a diagnosis. 

One thing I learnt subsequently was that I also had a problem with dairy, I feel a lot better, physically and mentally when I strictly avoid it. Although I'm sure the idea of cutting yet another food out sounds awful you may want to consider trialling this, it made a major difference for me and many gluten sensitive people are also better without dairy. Something to consider anyway

There's no treatment for celiac other than strictly following the gluten-free diet. That's the same thing you need to do with ncgs, so if you know you can't face the challenge then you may want to reconsider spending money on a diagnosis. 

Best of luck whatever you decide!

matt

[ktyler44]

My doctor told me to consider myself Celiac and stay gluten free based on my gene test, which had very strong markers, my symptoms, and my improvement when I went gluten free. I sent my gene test results to the Celiac Foundation and a doctor there read them. He said I was at very high risk. That was enough for my primary care physician based on everything else. 

[cyclinglady]

Okay, you have the genes (as do some 30% of the population) but the telling sign is your reaction to the gluten free diet — you feel better!  I completely understand your wanting a diagnosis.  It is nice to have affirmation that you are not a hypochondriac.  

My hubby went Gluten Free, like you,  per the advice of my allergist and his GP.  It worked after much trial and error the first year.  Twelve years later, I was formally diagnosed.  My hubby would be the first to say that I have had way more support from medical, family, and friends.  But does that deter him going back to a gluten diet?  No.  The proof is in how he feels and the reduction or elimination of symptoms that impact his quality of life. 

Seventeen years of being gluten free.  There is no way you would stick to a gluten-free diet if you did not think it would work.  I can tell you he has fallen off the weight-reduction diet wagon plenty of times, but never Gluten Free (me too, regarding a good diabetic diet).  

Good luck on healing your gastritis.  I am in the same boat.  My small intestine has healed (had endoscopy this month), but I have chronic gastritis.  H. Pylori was ruled out, I take no medications other than Thyroid replacement, and I do not drink (rarely...because it hurts my stomach!).  My GI thinks it is autoimmune related.  I am not taking any medication, but looking at my diet (ugh!).  I already have osteoporosis, so it can be risky for me to take any PPIs.  

 

[Elli-]

Hey guys!  Thanks so much for your responses.  Hopefully if there is a negative result I can at least get a dx based on the situation that has developed.  My new GI dr is already chewing me out about cross contamination so I feel like he is pretty convinced about the celiac thing, regardless of what the result is.  I may be able to get him to write a dx, I’ll hafta see what happens.  Results due back Thurs.  I’m posting another post to leave on record for others who might be googling.  <3. Thank you to everyone.  

[Elli-]

Hey guys!  I wanted to follow up cause I know this site comes up for ppl Googling for info.  Here’s the most recent:  

I was back on gluten for 8 days (20-28 Jan).  The last day, I didn’t feel unwell but somehow I felt I should go back on a gluten-free diet.  I dont know why.  I felt like I could be not well very soon.  I can’t put my finger on it.  Stool was a tad loose but I’ve had ulcers so that’s not super uncommon.  

On 1 Feb, after being back gluten-free for 2-3 days, I went to a new Dr after not being taken seriously at the two previous doctors.  The new office ran a blood test.  I was not used to being taken seriously so I did no know they were testing for celiac w the blood test, I thought it was just a general test for random screening purposes.  The doctor advised me to continue with eating gluten for another 3 weeks and we could do a biopsy which I was excited about so I went out and had a sandwich for lunch and another sandwich for dinner.  The next morning, I got very very sick.  Liquid D that looked “shredded” in a very pale steatorrea kinda colour.  I started back on gluten-free food right away and cut out gluten.  This lasted for 2-3 days with me not being able to leave the house at all to work.  There were some horrible moments necessitating excessive laundry and showering which I won’t go into but it was pretty bad.   I made an appt w the dr for 8 Feb cause I did not feel I should continue on the gluten challenge and I thought the D and steatorrhea might not be celiac.  My mind was kinda fuzzy at that time.  The dr called the 7th and told me that the blood test they ran was actually checking for stuff including celiac and that the celiac panel was lit way up.  He cancelled the appt and instead scheduled and did a stomach biopsy on the 8th.  

Starting the 8th I was no longer having what can only be called “accidents”, but still mainly unable to leave the house.  It abated in the morning long enough to do the stomach biopsy for some reason but then got worse in the afternoon.  9 Feb was the first day I could work again and I am still have the steatorrea going on.  

I know a lot of times people google like “how long will it be until the diarrhea stops after I stop eating gluten” and other symptom stuff and with the gluten challenge.  So I’m leaving this here for those people.  

It is now the 12th of Feb and I have semi-formed D of the steatorrea variety and ocasscional discomfort/urgency.  My mind is getting a little better but still I guess kinda “cloudy” which I forgot could happen after being gluten-free for 11-12 yrs.  I fully expect the biopsy to come back positive for celiac based on the fact that I’m still symptomatic so strongly.  The dr said he thought I had been exposed for longer than 8 days based on the blood test results and thinks there was contamination somewhere in my gluten-free diet.  However, I really doubt that there was significant contamination.  I do eat out though so maybe that.  The doctor seems like he knows what he’s doing.  It’s Dr. Andrew Blank in NYC, for the record if anyone is looking for someone who isn’t close minded.  

I’ll update with progress and results for the public record.  

[ktyler44]

On 1/29/2018 at 11:13 AM, cyclinglady said:

Okay, you have the genes (as do some 30% of the population) but the telling sign is your reaction to the gluten free diet — you feel better!  I completely understand your wanting a diagnosis.  It is nice to have affirmation that you are not a hypochondriac.  

 

Yes, I have the gene and the symptoms. I wish I had gotten the diagnosis for my kids' and grandkids' sake. I see some of them having issues, but without the diagnosis, they pretty much dismiss it. They keep looking in other directions for what's bothering them.

[Jmg]

19 hours ago, Ellie!!!!!!!!!!!!!!!! said:

The dr said he thought I had been exposed for longer than 8 days based on the blood test results and thinks there was contamination somewhere in my gluten-free diet.  However, I really doubt that there was significant contamination.  I do eat out though so maybe that.  The doctor seems like he knows what he’s doing.  It’s Dr. Andrew Blank in NYC, for the record if anyone is looking for someone who isn’t close minded.  

I’ll update with progress and results for the public record.  

Thanks for the update Ellie, as you've realised that's going to help others on the same journey. I'm sorry you're feeling sick but glad you've got an answer, regardless of the biopsy you should definitely be gluten free for life. 

You may want to think about being extra strict in the next 6 months and getting a blood test to check those levels come down?

Good luck!

Matt

[Elli-]

Thank you Matt!  When you posted was my birthday in the 13 to which was also the day the doctor called and said it was a positive biopsy consistent with celiac.  I was surprised how shocked I was even though I knew it was coming and have been gluten free for 12 years.  But it was hard to hear anyway.  The doctor says he thinks the blood tests indicate I've been getting gluten for more than the 8 + 1 day gluten challenge.  I'm going back to a doctor who claimed to have taken a biopsy even though I'm pretty certain he lied about it. But on the off chance he didn't, I'd like to see the baseline prior to the challenge.  Will post back if I find more info.  Thank you all for your help and support during what turned out to be a somewhat surprisingly difficult bit of news, emotionally.  But I'm very happy I know for sure and have it in writing.  The diagnosis really changed my outlook.  I was eating out at gluten-free restaurants and now I'm paranoid until I can see the baseline.  If I can see a baseline.  I really strongly believe the first biopsy was not taken.  But the third doctor who did the last biopsy (perhaps the only biopsy) was amaze balls.  

[cyclinglady]

So glad for you! ? sort of.....

At least you know where you stand.  I am sure that your posting will help MANY!  

[cyclinglady]

On 2/13/2018 at 7:35 AM, ktyler44 said:

Yes, I have the gene and the symptoms. I wish I had gotten the diagnosis for my kids' and grandkids' sake. I see some of them having issues, but without the diagnosis, they pretty much dismiss it. They keep looking in other directions for what's bothering them.

Well, you can lead a horse to water, but can not make him drink!  The good news is that you feel better.  Someday your kids might come around.  

[Elli-]

Update:  the biopsy showed mild villour atrophy consisten w celiac but not very strong.  The blood test was mostly non-interesting except:

 

Immunoglobin A Qn Serum 153

Deamidated Gliadin Abs Iga 103H

They did not take a DGP IgH

I dunno what all that means but taken together, the doctor coughed up a dx of celiac.  Dr Blank FTW.  

Maybe I’m not used to villous atrophy anymore but if this what “mild” feels like these days, I puty anyone with “severe”.  But that’s after 12 yrs of being pretty gluten-free.  And that is the end of my dx tale for those who may find this on Google and find it helpful.  

[ravenwoodglass]

8 minutes ago, Ellie!!!!!!!!!!!!!!!! said:

Update:  the biopsy showed mild villour atrophy consisten w celiac but not very strong.  The blood test was mostly non-interesting except:

 

Immunoglobin A Qn Serum 153

Deamidated Gliadin Abs Iga 103H

They did not take a DGP IgH

I dunno what all that means but taken together, the doctor coughed up a dx of celiac.  Dr Blank FTW.  

Maybe I’m not used to villous atrophy anymore but if this what “mild” feels like these days, I puty anyone with “severe”.  But that’s after 12 yrs of being pretty gluten-free.  And that is the end of my dx tale for those who may find this on Google and find it helpful.  

Thanks for the update. The Qn Serum was to make sure that you were not IGA deficient. The Abs Iga was strongly positive and that with villious atrophy means you are definately celiac.  At least now you know for sure that you need to be strictly gluten free. I hope you heal quickly.