Lab Results Help

[cyclinglady]

Just search for GIs in your area.   Usually doctors post biographies.  Look for someone who mentions celiac disease in his/her bio.  Then call the office to confirm.   Sacramento is a pretty big city.  If you are not successful, there is a celiac disease center at Stanford University.  

[squirmingitch]

Non alcoholic liver disease is associated with celiac disease. My liver numbers were elevated in the year or two before diagnosis and I was dx'd with fatty liver (non alcoholic). After I went gluten free, my numbers came right back down to normal. I also had microscopic blood in my urine & had all kinds of tests & scans run for that until the docs just threw up their hands & said, "That's just the way you are". Guess what happened when I went gluten-free? Yep. All clear.

I will caution you that you will need to eat gluten every day for at least 2 weeks for an endoscopic biopsy and for 12 weeks for any further celiac serum testing. Otherwise, you'll get false negatives. It's MUCH easier to just stay on gluten until all testing is done because after going gluten-free, we tend to have much more severe reactions to gluten.

I am in agreement with everyone else. You need a celiac savvy GI. One positive on the celiac blood is enough to move forward with an endoscopic biopsy. 

Celiacs can be fat, medium or skinny. We come in all shapes & sizes. These darn docs that think you have to be wasting away don't know what they're talking about. I can't tell you how many overweight people we've had on here who the docs were just plain nasty too telling them to stop eating twinkies & such as that. Inexcusable!!!!

[Beverage]

I tested positive on the antibody test, declining kidney function being what I had gone to a naturopath for.  I did not want to do the endoscopy, so did a trial of the gluten free diet.  I felt like a truck hit me for about a month, like a bad flu coming on, as tons of inflammation left my body. I was not terribly overweight, but lost it all in that month, dropping 30 lbs, and ended up looking emaciated after. I also did the DNA test, which only says if you have the potential for it, and that was positive.

After 2 years I've now gained back muscle and bone and look healthy and fit for my height, and I'm 60 years old.  I have an official Celiac's diagnosis from a naturopath doctor based on the blood test, DNA test, and response to the gluten free diet.  Lots of docs think Celiacs is a totally intestional disease and disregard it unless you have all the diarrhea and underweight symptoms. I had NONE of that.  Oh, and on my last test, kidneys came back from 40% functionality to just basely into the normal range.  :o)  Good luck.

[plumbago]

On 6/27/2017 at 0:57 PM, Beverage said:

Oh, and on my last test, kidneys came back from 40% functionality to just basely into the normal range

How does that happen!? Congratulations!
(But still curious!)
Plumbago

[Beverage]

16 hours ago, plumbago said:

How does that happen!? Congratulations!
(But still curious!)
Plumbago

For me, gluten was causing severe systemic inflammation, which is hard on the kidneys.  So getting rid of the root cause had an effect.  Sad thing is not too many doctors see the connections.

[plumbago]

4 hours ago, Beverage said:

For me, gluten was causing severe systemic inflammation, which is hard on the kidneys.  So getting rid of the root cause had an effect.  Sad thing is not too many doctors see the connections.

Wow, so you taught them something (let's hope). Good job. Amazing that they didn't just chalk it up to kidney failure stage blah blah and be done with it.

Nice. Thanks for responding.

[cdwiggy]

On 6/22/2017 at 8:19 PM, cyclinglady said:

Just search for GIs in your area.   Usually doctors post biographies.  Look for someone who mentions celiac disease in his/her bio.  Then call the office to confirm.   Sacramento is a pretty big city.  If you are not successful, there is a celiac disease center at Stanford University.  

I think I'm going to request a referral to the Stanford center. I searched for a celiac specialist before my horrible visit and Sacramento doesn't have any in my health insurance network. I still haven't heard back from my GP, which is why I haven't posted on here. I was really hoping to have an update.

[cdwiggy]

On 6/24/2017 at 5:45 PM, squirmingitch said:

Non alcoholic liver disease is associated with celiac disease. My liver numbers were elevated in the year or two before diagnosis and I was dx'd with fatty liver (non alcoholic). After I went gluten free, my numbers came right back down to normal. I also had microscopic blood in my urine & had all kinds of tests & scans run for that until the docs just threw up their hands & said, "That's just the way you are". Guess what happened when I went gluten-free? Yep. All clear.

I will caution you that you will need to eat gluten every day for at least 2 weeks for an endoscopic biopsy and for 12 weeks for any further celiac serum testing. Otherwise, you'll get false negatives. It's MUCH easier to just stay on gluten until all testing is done because after going gluten-free, we tend to have much more severe reactions to gluten.

I am in agreement with everyone else. You need a celiac savvy GI. One positive on the celiac blood is enough to move forward with an endoscopic biopsy. 

Celiacs can be fat, medium or skinny. We come in all shapes & sizes. These darn docs that think you have to be wasting away don't know what they're talking about. I can't tell you how many overweight people we've had on here who the docs were just plain nasty too telling them to stop eating twinkies & such as that. Inexcusable!!!!

I can't get any doctor to admit there's a link between my fatty liver and celiac disease. Of course, it might not be but I'm hoping that cutting out gluten will help one way or another.

Unfortunately, it looks like it's going to be months before I can have an endoscope done and I can't continue eating gluten until then. I'm just going to have to deal with whatever happens.

My GP hasn't contacted me about my next steps, so I'm still in celiac limbo. I'm about ready to fire her, too.

 

On 6/27/2017 at 9:57 AM, Beverage said:

I tested positive on the antibody test, declining kidney function being what I had gone to a naturopath for.  I did not want to do the endoscopy, so did a trial of the gluten free diet.  I felt like a truck hit me for about a month, like a bad flu coming on, as tons of inflammation left my body. I was not terribly overweight, but lost it all in that month, dropping 30 lbs, and ended up looking emaciated after. I also did the DNA test, which only says if you have the potential for it, and that was positive.

After 2 years I've now gained back muscle and bone and look healthy and fit for my height, and I'm 60 years old.  I have an official Celiac's diagnosis from a naturopath doctor based on the blood test, DNA test, and response to the gluten free diet.  Lots of docs think Celiacs is a totally intestional disease and disregard it unless you have all the diarrhea and underweight symptoms. I had NONE of that.  Oh, and on my last test, kidneys came back from 40% functionality to just basely into the normal range.  :o)  Good luck.

I thought about finding a naturopath. I'm so glad that you've had luck with yours. I stopped eating gluten after my GI visit and I already feel so much better. I've been able to exercise without almost passing out and my mental fog is gone, plus I have a ton more energy. I wouldn't say no to losing 30 pounds in a month!

[kareng]

17 minutes ago, cdwiggy said:

I can't get any doctor to admit there's a link between my fatty liver and celiac disease. Of course, it might not be but I'm hoping that cutting out gluten will help one way or another.

Unfortunately, it looks like it's going to be months before I can have an endoscope done and I can't continue eating gluten until then. I'm just going to have to deal with whatever happens.

My GP hasn't contacted me about my next steps, so I'm still in celiac limbo. I'm about ready to fire her, too.

 

I thought about finding a naturopath. I'm so glad that you've had luck with yours. I stopped eating gluten after my GI visit and I already feel so much better. I've been able to exercise without almost passing out and my mental fog is gone, plus I have a ton more energy. I wouldn't say no to losing 30 pounds in a month!

https://celiac.org/blog/2015/07/celiac-disease-and-non-alcoholic-fatty-liver-disease/

 

 

[ironictruth]

http://www.cureceliacdisease.org/tag/liver/

[squirmingitch]

Great links you two!

[cdwiggy]

A quick update in case anyone is frantically googling like I was: I received a new referral to a GI who immediately said “oh, you have celiac disease.” I ate gluten for 8 weeks and had an endoscopy Nov 10th and was told to stop eating gluten again immediately. They called me on November 27th with my biopsy results: negative. Cue anxiety. They happened to have an appointment open that day so I went in for a follow up where my GI informed me that he still believes I have celiac disease. I go back in 6 months to make sure my antibodies are at zero. But that’s it! After all the worry and horrible doctors, I have a diagnosis. He said it could also be non-celiac gluten sensitivity but he pointed out either way I needed to stay off gluten so he’s fine calling it celiac.

[Jmg]

6 hours ago, cdwiggy said:

A quick update in case anyone is frantically googling like I was: I received a new referral to a GI who immediately said “oh, you have celiac disease.” I ate gluten for 8 weeks and had an endoscopy Nov 10th and was told to stop eating gluten again immediately. They called me on November 27th with my biopsy results: negative. Cue anxiety. They happened to have an appointment open that day so I went in for a follow up where my GI informed me that he still believes I have celiac disease. I go back in 6 months to make sure my antibodies are at zero. But that’s it! After all the worry and horrible doctors, I have a diagnosis. He said it could also be non-celiac gluten sensitivity but he pointed out either way I needed to stay off gluten so he’s fine calling it celiac.

Hello again

Thanks for posting this follow-up. It's good to hear what's happened and after seeing lots of bad doctor stories it's good that you've found one who isn't letting their expectations lead their diagnosis. As you've guessed others will be reading your story and its helpful to them too.

I know what it's like to get the negative scope after being convinced it would be positive. My consultant also told me to go gluten free for life and because I'd had symptoms return on the challenge I already knew that would be it for me and gluten. So try and look on the negative scope as a positive. You may have caught it before that sort of damage began, or you may be NCGS, but as you say, either way your diet is the same.

I hope you start feeling better now. Well done on sticking through the difficulties of the diagnostic process and sticking up for yourself despite the initial difficulties with the first doctor. You should be proud of yourself.

Best of luck!

Matt