New Celiac And Hematuria

[spirit22]

I am new here today. Have been undergoing a series of xrays, ultrasounds & cystoscopy (trace hematuria) over the past month. Not a lot of fun. I was diagnosed with IBS-D 40 years ago, back when they called it "spastic colon". Over the years, I've developed muscle aches/pains which has loosely been diagnosed as fibromyalgia. I have experienced hematuria on & off again, usually when ill with disease and/or viruses.

 

Lately, however, the hematuria has begun to show up more and more consistently in my urinalysis tests. The urologist this week said everything looks great in my bladder except for a "hypervascular bladder neck". He didn't say it was interstitial cystitis. In fact, he said he doesn't need me to return for follow-up but I am to call him if I ever see pink or red urine. He also did not take much time with me, so I've scheduled a follow-up appointment with a list of questions I'd like him to answer. It is my belief that we are our own best health advocates and if we aren't willing to push through to get our questions answered, no one else will.

 

I've seen my GP doc and she pushed me to have a colonscopy scheduled, which is set for May 8th. When I visited the gastro office I was seen by his P.A. She poo-poo'd my IBS, telling me that most IBS patients would be fine if they would just cut out dairy. I informed her that I am consuming just a hint of dairy, whereby she promptly put me on a dairy-free diet for three weeks. The only difference I can tell on the diet is that after two weeks I have returned to constipation.

 

During the appointment with the P.A., I asked about celiac disease and being tested for it at the same time as the colonscopy testing. I told her that the reason I was asking about it is that I had eaten gluten-free previously for a month and felt better but had returned again to eating it and was feeling symptoms. I figured if I'm being put out for the colonscopy, that is the time to also be tested for celiac so I wouldn't need to go under anesthesia a second time. Again, she poo-poo'd my request and told me that we could always do the celiac test at a later date if I was having upper abdominal symptoms (most all of my symptoms were lower abdominal). However, she did tell me there is a blood test to check for celiac. I chose to do it.

 

My test results showed the T-Transglutaminase IgA as 23.00 (high). The rest of the test results (T-Transglutaminase IgG, Gliadin IgA, Gliadin IgG and the IgA Immunoglobulin was negative. She called me back into the office and explained that I probably do not have celiac disease but may very well have a gluten sensitivity like her sister. She said it might be good to perform an endoscopy at the time of my colonoscopy. The next day, I received a phone message from her. Very meekly, she said she had showed the blood test results to the gastro and he informed her that the test I showed positive on is the very one that is the most important in the testing I had done. I was shocked that he hadn't already seen my tests and that she was just winging my case on her own! I'm still upset about this and it's been over two weeks ago!

 

I have come to learn that hematuria can present in celiac disease. My questions at this point are: Have any of you experienced hematuria, gone onto a gluten-free diet and then had the hematuria stop? Does hematuria only happen in celiac disease (per se) or can it also take place with only a gluten sensitivity? 

 

I am so happy to have found this site and wish each of you good health! I appreciate any light you can shed on my situation.       

[cyclinglady]

I can not speak for myself, but my cousin who did not test positive to celiac disease, did go gluten free and has never had another bladder infection since (over a year). If she eats gluten, it makes her sick, though an accidental glutening, has not brought back her bladder infections.

[nvsmom]

I can't speak to the hematuria isse, but I do want to address the things said about the tTG IgA. The tTG IgA does NOT show non-celiac gluten sensitivity (NCGS) ....at all. The tTG IgA indicates that here is an autoimmune attack to the mucosal lining (of the intestines) occurring, but in NCGS this does not occur. Those with NCGS do not have damaged intestines, although they experience the same inflammation and symptoms that one with celiac disease would experience.

95% of the time, a positive tTG IgA will indicate celiac disease. A small miniority will have a weak positive tTG IgA caused by diabetes, thyroiditis, crohn's, colitis, chronic liver disease and infections. Most of those are other autoimmune is eases that can occur along with celiac disease. For instance, I have thyroiditis and celiac disease and my tTG IgA tends to be at a very weak positive (20.9 with a normal upper limit of 20) after being gluten-free for almost two years; when first diagnosed (and eating gluten) it was much higher.

You most likely have celiac disease if you had a positive tTG IgA. NCGS is not a possibility.... Although that is not any easier to bear.

If you have doubts, request that the remaing celac tests be run. They are:

(TTG IgA and) tTG IgG

DGP IgA nd DGP IgG

EMA IgA

AGA IgA and AGA IgG (older and less reliable tests)

The endoscopy, while doing the colonoscopy, would be a good Idea too.

Keep eating gluten until all tests are done.

This report has more info on the tests beginning around page 8-12:

Open Original Shared Link

Good luck and welcome to the board.

[spirit22]

I can not speak for myself, but my cousin who did not test positive to celiac disease, did go gluten free and has never had another bladder infection since (over a year). If she eats gluten, it makes her sick, though an accidental glutening, has not brought back her bladder infections.

Thanks for your post. Since half of my celiac bloodwork came in positive, I'm wondering if it's possible that I'm just developing it? I'm hoping my gastro will do a biopsy while performing the endoscopy. I haven't yet gotten to speak to him but am hoping to for a few moments before they put me under. I have read that a biopsy is the only way to really get a diagnosis of celiac; an endoscopy without one won't give final results. I'm glad to hear your cousin is doing much better by eating gluten-free.

[spirit22]

I can't speak to the hematuria isse, but I do want to address the things said about the tTG IgA. The tTG IgA does NOT show non-celiac gluten sensitivity (NCGS) ....at all. The tTG IgA indicates that here is an autoimmune attack to the mucosal lining (of the intestines) occurring, but in NCGS this does not occur. Those with NCGS do not have damaged intestines, although they experience the same inflammation and symptoms that one with celiac disease would experience.

95% of the time, a positive tTG IgA will indicate celiac disease. A small miniority will have a weak positive tTG IgA caused by diabetes, thyroiditis, crohn's, colitis, chronic liver disease and infections. Most of those are other autoimmune is eases that can occur along with celiac disease. For instance, I have thyroiditis and celiac disease and my tTG IgA tends to be at a very weak positive (20.9 with a normal upper limit of 20) after being gluten-free for almost two years; when first diagnosed (and eating gluten) it was much higher.

You most likely have celiac disease if you had a positive tTG IgA. NCGS is not a possibility.... Although that is not any easier to bear.

If you have doubts, request that the remaing celac tests be run. They are:

(TTG IgA and) tTG IgG

DGP IgA nd DGP IgG

EMA IgA

AGA IgA and AGA IgG (older and less reliable tests)

The endoscopy, while doing the colonoscopy, would be a good Idea too.

Keep eating gluten until all tests are done.

This report has more info on the tests beginning around page 8-12:

Open Original Shared Link

Good luck and welcome to the board.

Thank you so much for your informative post. I have downloaded and read the link you provided. Being that this is all new to me, I'm not sure how much I am correctly absorbing but I am trying my best. It appears from the tests you listed that I am missing the EMA IgA and the AGA IgA & AGA IgG. I have an appt. with my GP on April 15th and will ask if she might give me a script to have these tests. Like I replied to the post above, I am hoping my gastro will take the biopsies when he is performing the colonoscopy on May 8th. Since I have not had the opportunity to speak with him, I will (at the very least) put my request in with his assisting nurse on that day. I do not want to have to go through another endoscopy if at all possible.

 

I am trying hard to continue eating wheat but it is hard to do so when I tend to feel better if I don't consume it. However, I do understand it is essential so that the doctor will have the evidence there when he does the endoscopy.

 

At this point, I am wondering if my past diagnosis of IBS is, in fact, IBS. Or if it has been celiac all along. I have read it is common for those two to go hand-in-hand. Fibromyalgia aches/pains have also been more prevalent over the past few years and I'm wondering if it has been celiac. If I do, in fact, have celiac disease would my bloodwork have shown positive on the tTC IgG portion of the blood testing? Mine came out negative.

 

Thanks again for whatever info you can give!    

[nvsmom]

It's not uncommon, at least around here, for a celiac to not be positive in all of their tests, be it the various blood tests, endoscopic biopsy, or skin biopsy for those with the rash. That's part of the reason so many tests have bee created... although the doctors won't admit that.    

 

If you look at the sensitivity of the tests on page 12 of the linked report I posted earlier, you can see that the tests are not fool proof - some miss up to 25% of all celiacs... far from perfect.

 

The AGA tests are being phased out of many labs, and tend to miss many celiacs. If you can have them done, that's great, but don't rely too heavily on them for a diagnosis. The EMA IgA is similar to the tTG IgA tests but tends to show the more advanced damage. It is 99-100% specific to celiac disease though so if you get a positive EMA test, then celiac disease is sure thing.  I had a positive tTG IgA and EMA IgA so I chose to stop testing and skip the biopsy as I had no doubt it was celiac disease.

 

If there are no other blood tests in the future, you could cut back on your gluten consumption for a while, but ensure you eat gluten (1-2 slices of bread per day) for at LEAST 14 days before the biopsy - that would be late April. The more gluten you eat over the next month, the more reliable your biopsy should be, though cutting back gluten is a bit of a risk for causing a false negative test.  

 

Make sure they take a minimum of 6 biopsy samples - 8 is better - so you get an accurate biopsy as possible. You are correct that celiac disease can't be diagnosed visually, at least in most cases.

 

Someone on this board said that IBS is doctor-ese for "I Be Stumped".  LOL Many celiacs have found that thier IBS diagnosis is in fact BS.  Really, IBS is a symptom, it doesn't explain why at all. In our cases, the "why" is celiac disease.

 

Celiac causes arthralgias too. I was pretty convinced that I had Lupus or RA because my joints would become almost nonfunctional for months at a time. Man, that hurt.  It's become better over the last year though - about as good as it was 15 years ago.  Pain tends to be one of the last symptoms to improve so prepare yourself that it could take months to years for it to get better.

 

Good luck.  Keep asking questions. There are a lot of smart people around here.