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Hello,

I'm hoping someone will be able to help. The short question is on how to convince my doctor of (or research on) the need for an endoscopy with negative blood work results...

The background: I'm in my late 30s, w annoying/severe digestive discomfort for more than a decade, which a GI a few years ago semi-diagnosed as IBS without doing any real investigation. More recently I've had debilitating fatigue, severe anxiety, and several other symptoms, and recently realized it could be celiac when talking to a friend who'd been diagnosed in his 40s last year.

My regular dr is usually quick and thorough in ordering tests. I asked her for celiac tests about 3 months ago, and they came back negative (the panel included: Deamidated Gliadin peptide Ab IgG, Tissue Transglutaminase Ab IgA, and total IgA).

At that point, I was so sick, didn't know when her referral to the GI would go through, and so decided to try going gluten-free. It's been a huge, dramatic change. I know that I shouldn't have stopped gluten before the full testing process, but I have a small child and had just gotten so fed up with being sick and didn't know whether it would be months and months longer to see GI.

Finally saw GI last week. Talked to her resident for some time, then she came in and immediately told me I have IBS, that there is absolutely no way I could have celiac with negative blood work. I knew that wasn't true, and I stood my ground, but she was dismissive and arrogant and completely refused to order a scope (and said that in her hospital it would be a 6 month waiting time anyway). I've been glutened a couple of times since going gluten-free 10 weeks ago and was far sicker than when eating gluten all the time, and for a week each time. Definitely can't do a gluten challenge.

So my problem is this: the GI said that my regular dr can order me an endoscopy, although it's not yet clear whether it'll be covered (I'm in Canada), but my reg dr is reluctant because she's deferring to the GI's opinion. She was open to ordering the scope if my genetic tests were positive, but getting the results is weeks away.

Basically, I want an endoscopy asap because in many places I've read that damage can take longer than 10 weeks to go away, but I don't want to wait months and have evidence gone. Does anyone have any research they could point me to illustrate the need for endoscopy w negative blood work? (I really like my reg dr for everything else, so don't want to change to a different one, and the GI appt took months to get, so finding another one isn't exactly an option right now because of the window of time since I stopped gluten.) In some ways I'm ok with having no diagnosis, since going gluten-free has literally given me hope that I didn't think I'd ever have, but I also have reasons (including my child's health) for wanting to know definitively...

Also, should I have also gotten ttg igg and Deamidated gliadin iga? The GI dr offered to do EMA now, but with a gluten challenge which I physically cannot do...

Many thanks!!

Edited by blueskycloud

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I can see their point that you don't have Celiac.  And you probably don't.  But something is going on and they need to find out what.  They should do a colonoscopy and maybe an endoscopy to see what IS wrong with you.  

You might look at FODMAPS issues  as those resolve gluten-free.

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17 minutes ago, kareng said:

I can see their point that you don't have Celiac.  And you probably don't.  But something is going on and they need to find out what.  They should do a colonoscopy and maybe an endoscopy to see what IS wrong with you.  

You might look at FODMAPS issues  as those resolve gluten-free.

Yeah, I've spent so long researching and trying different dietary changes in the past several years, including FODMAPS, which made no difference, unfortunately. Thanks for the idea, though!

Edited by blueskycloud

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This algorithm:

http://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf

I am an odd diagnostic case.  I only have positives on the DGP IgA (even on follow-up testing) and a Marsh Stage IIIB biopsy result.  I am not IgA deficient.  

Karen is right.  Something is wrong.  

I could have sworn my niece had celiac disease, but she did not.  A pill camera caught her Crohn's diagnosis.   Just something to think about.  

Take care!  

 

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6 hours ago, kareng said:

I can see their point that you don't have Celiac.  And you probably don't.  But something is going on and they need to find out what.  They should do a colonoscopy and maybe an endoscopy to see what IS wrong with you.  

You might look at FODMAPS issues  as those resolve gluten-free.

I agree here. Something is going on so why would they NOT do a scope?  When I met my first GI, he suggested I have the genetic test. 30-40% of the population has the gene, but if you do not, it pretty much excludes celiac. I remember saying "great" I would not need the endoscopy then, and he told me I still would, to examine why I was having issues.

Some algorithm's only use DGP IGG to catch IGA deficient folks. DGP is not as reliable as the internet would have you believe but is still far better then the older tests (my doc told me this and he is well aware of current studies). Both the IGA and IGG tests can be run as well as a combined IGA/IGG screen. But the results vary. I tested weak positive to the IGA a couple of times while on gluten. I then tested negative off of gluten but still positive to the combined screen. We are still trying to figure out if it is telling at all. Bottom line: Yes, they should have run DGP IGA. Not sure how you could make a serology negative argument if you failed to utilize the available serology????

I sought out a second opinion at Mass General in Boston.  They have a peds celiac disease center but can see adults. Both the initial physician who saw me to get established, and my current doc now (leading researcher in celiac disease), informed me 10-15% of celiacs are seronegative. In fact, we literally just discussed it again this week. My brother was reportedly seronegative for antibodies. Biopsy positive, gene positive, improvement on the diet and he gets sick if exposed. I am not entirely sure the DGP was even run for my brother either, as many docs just use TTG. He was just told he was seronegative.

Bottom line, you may need a doc who does not have a giant recall out on their model of the God complex.

Unfortunately, you probably should be eating gluten, even if just a cracker or two before bed, on a daily basis while you are trying to sort this out. Because you may not find a doc willing to biopsy for celiac unless you are eating it, and even if you do...you are approaching the 1/4 of a year mark. Some celiacs have almost minimal damage after a year on the diet. You may be hunting and waiting awhile longer. 

Get the genetic test if your insurance covers it. 

Good luck and keep us posted! 

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Thank you all! These resources are a huge help, especially the algorithm, which I think my GP will take quite seriously. I did have the genetic testing done, fortunately, and will get results back in about 3 weeks.

Wish I could eat a cracker here and there, ironictruth, but having any gluten makes me crazy sick. Kind of shot myself in the foot with going on GFD before endoscopy, I know. Yesterday I idiotically ate carrots that I'd accidentally grated on the sole cutting board we still have that has touched gluten (haven't been able to convince OH to give up bread at home), and am a mess today. Every time I've been gluttened so far, it's taken a week to recover, including 3-4 days where I can barely get out of bed. And I'm a stay-at-home parent to a toddler, so totally impossible to be laid up sick!

Thanks again, and I will check back in when I have any diagnosis info, to help others who might be in a similar situation in the future.

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hmm, if you feel that bad with a crumb, this may not be helpful. But, I've been able to build up to eating a bit of gluten, again for a gluten challenge. First time off gluten was horrible! Worse than any day pre-gluten free. But, I ate just a little bit of gluten every day, building up to one piece of bread a day. (taking a day off here and there when it got to be too unbearable.) I'm at almost 3 weeks back on gluten and trying to get it to two pieces without too much suffering. I'm not going to lie and say it's been awesome. I have a constant headache, can't think straight, and constipation, stomach ache, gas/bloating, etc all back. But, I've managed to mostly keep it to how I felt pre-gluten-free instead of how I felt the first time I was glutened post gluten-free. 

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Here is another thing to think about.  I was diagnosed 4 years ago, but hubby went Gluten Free some 16 years ago per the advice of my allergist and his PCP.  Guess what?  His symptoms resolved.  He would be the first to tell you that I have had way more support, but it is not enough to even contemplate doing a gluten challenge.   Does he have celiac disease?  Who knows? We do know that gluten makes him sick.  Science is just investigating gluten intolerances that are not actually celiac disease.  Unfortunately there is no test for a firm diagnosis.  

You have a small kid.  It would be nice to have a diagnosis, but you need to feel better so you can function.  Consider staying gluten-free.  If you suspect your kid having issues, then get him tested and insist on the full panel.  Make sure he is consuming gluten daily.  My home is gluten-free, but I make sure my kid eats gluten daily (lunch at school, etc.) for 12 weeks before a blood draw.  

Oh, other than GI upset, do you have some of the other risk factors for celiac disease?  I know I tested weird, but my doctor moved forward because I was anemic and already had another autoimmune disorder very common with celiac disease.  Plus, a heavy family history of autoimmune disorders.   If you do not have those other risk factors, I can see why your doctor would dismiss celiac disease.  

http://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/dxc-20214627

I wish you well.  

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