Constipation And High Bilirubin - Is This Celiac's?

[meg51577]

Hello all,

I am new and seeking some answers as to what is wrong with me. I have had chronic constipation for the past four years.  I did go to the GI doctor three years ago trying to get some help but all she did was tell me to eat more fiber, whole grains and drink water.  I eat very healthy already and exercise regularly.  I have been taking magnesium supplements for the past year, which did help with the constipation but now it has stopped working. I have also tried tons of other things to help me go to the bathroom but nothing works.  Miralax used to work and now even that isn't helping.  Now I am back to looking 3 months pregnant and have a lot of discomfort when I walk.  Below my belly button feels very big and squishy, almost like my intestines are inflamed. My primary doctor did a blood test for Celiac last year but it came back normal.

 

I also should mention that I have been diagnosed with Gilbert's Syndrome, which is when your bilirubin levels are high for an unexplained reason.  I've had a sonogram and saw a liver specialist and they don't know why my bilirubin is high.  However, I've read that liver issues and Celiac can go hand-in-hand. 

 

I am not sure what to do next.  I did make an appointment to go to another GI doctor in a few weeks to try to figure out what is wrong. Does this sound like it could be Celiac or something else?  Not sure what to do.

 

Thank you!

 

 

[NoGlutenCooties]

Hi Meg and Welcome to the Forum!

 

Diagnosing Celiac is tricky because it comes with a myriad of possible symptoms - all of which can have other causes - or no symptoms at all.  There is also a condition called non-Celiac-gluten-intolerance in which you get to enjoy all of the symptoms, but there is no villi damage so it's even harder to diagnose.  Also, the tests for Celiac aren't nearly as reliable as you would hope/assume they should be.  False positives are fairly rare, but false negatives are not so rare.

 

First, make sure they run the full panel of blood tests for Celiac (if you do a search on here they have been posted several times - there are about six of them).  Also, you have to be eating gluten in order for the tests to work.  Make sure you get a copy of the test results from your doctor.  Sometimes the labs will classify the results as a "weak positive" or the numbers may be "close" to positive, but not quite high enough to reach whatever arbitrary threshold has been set by that particular lab.  Don't be fooled by a "weak positive" result.  It's like saying you're "weakly pregnant".  Drives me nuts.  Positive is positive.

 

Even if the blood work comes back negative or "inconclusive", see if your GI will agree to an endoscopy and biopsy.  It's a relatively simple procedure and if they do it correctly (i.e. take at least 5 or 6 biopsies from key areas) they can get a better diagnosis that way.  They'll also look for and test for other ailments that could be causing your problems.

 

And finally... regardless of the test results, you can try going gluten-free and see if your symptoms go away.  Don't do this until you're done with all of the testing though.  After a few weeks of being gluten-free, if your symptoms improve you can try eating gluten again and see if your symptoms come back.  This is the "sure fire" way to know you have either Celiac or non-Celiac-gluten-intolerance and it is the only way to know for sure about the non-Celiac variety.

 

Oh... and feel free to post your test results here.  Folks on here are great at helping to decipher those.

 

Good luck!

[notme]

have you been tested for hepatitis?    that could make your bilirubin high...

[cahill]

Welcome meg51577,

 

 

have you had gene testing done for gilberts ? The other thing I would ask is has your doctors checked your copper levels ?

[meg51577]

have you been tested for hepatitis?    that could make your bilirubin high...

Yes, I was sent to a specialist at Duke just to confirm it was not hepitatis.... It turned out negative, thankfully! They cannot explain why it is high.

[meg51577]

Thank you so much for your response!  Yes, it seems from what I have read that false negatives happen quite often.  Celiacs is the only thing I can think that it could be.  I am hoping this new doctor will try to figure this out and not just tell me to eat more fiber.

[meg51577]

No, I did not know that you could get gene testing.  They just couldn't pinpoint why my bilirubin is so high so they told me it is Gilbert's.  I do not believe my copper levels have been checked either. 

[cahill]

No, I did not know that you could get gene testing.  They just couldn't pinpoint why my bilirubin is so high so they told me it is Gilbert's.  I do not believe my copper levels have been checked either. 

I was diagnosed with gilberts back in 2011  I did not have  gene testing done until  Dec of 2013 for gilberts ( among other things) at which time  the gilberts was confirmed. . The most important thing is to rule out anything ( other than gilberts ) that is causing your high bilirubins .

 

The reason I mentioned your copper levels is  some of us with gilberts have unusually high levels of copper. Last year my copper levels were so high they sent me to the University   of Michigan  to a doctor who's specialty is wilsons disease ( thus the gene testing ) Thankfully I tested negative for wilsons  and they came to the conclusion that  the gilberts is responsible for me  not processing /eliminating copper as I should be .

 

 

 

I have read about a possible connection between gilberts and celiacs . I will look for those articles 

 

 

  . For some of us ruling out other possibilities  leaves us with just celiacs even if we do not have a formal diagnosis.

My official diagnosis for celiacs came long after I was gluten free. Lucky for me    my DH biopsy was positive   .

 

Have your reg doc run a celiac panel ( blood work)  again before you go gluten free.

 

For me,, the constipation did not resolve  until I was gluten and soy free.

 

From what I have read eliminating soy is beneficial to those of us with gilberts .

[powerofpositivethinking]

Welcome!

 

It sounds like you're describing me around last year at this time.  At my first GI appointment, the GI started to suggest more fiber and water.  I'm no longer super emotional since going gluten-free, but when he suggested that I started crying and said please don't make me take any more fiber.  I was doing everything exactly right by the book, and I was still soooo stopped up.  Going gluten-free has helped so much, and I also take magnesium.  Before going gluten-free I also got to a point where magnesium was worthless, but now it works again.  Although it's not the most attractive remedy, I used to use glycerin suppositories and liquid glycerin without any type of added stimulant to help relieve the big C.  Do you know if you got the DGP tests run?  That was the only test I came back as positive.  If you have your results you can post them here so other can take a look.  The following is a complete blood panel:

 

Comprehensive Celiac Panel:

DGP iga/igg

AGA iga/igg (less reliable, older tests)

ttg iga/igg

EMA

Total iga serum-this is a control test to make sure you make enough iga to validate the other testing

check out page 12 in this report for testing information:

Open Original Shared Link

 

 

I am new and seeking some answers as to what is wrong with me. I have had chronic constipation for the past four years.  I did go to the GI doctor three years ago trying to get some help but all she did was tell me to eat more fiber, whole grains and drink water.  I eat very healthy already and exercise regularly.  I have been taking magnesium supplements for the past year, which did help with the constipation but now it has stopped working. I have also tried tons of other things to help me go to the bathroom but nothing works.  Miralax used to work and now even that isn't helping.  Now I am back to looking 3 months pregnant and have a lot of discomfort when I walk.  Below my belly button feels very big and squishy, almost like my intestines are inflamed. 

[greenbeanie]

This is really interesting. I was told I have Gilbert's Syndrome as a teenager, around the time my daily diarrhea and stomach pains started. They repeated the blood test a few months later and indirect bilirubin was still high (leading to high total bilirubin). As far as I know, that's all they did to diagnose me with Gilbert's. I had no idea there was a genetic test for it. But then there was a period in my mid-20s when I was feeling good overall (not sure what I was eating at the time - a gluten problem was not on my radar then), and my bilirubin was normal. I was told it must be a lab error, because when someone has Gilbert's it will always be high. I had a bunch of non-responsive doctors who kept telling me nothing was wrong and the GI stuff was just from stress, so after a while I gave up on getting any of my questions answered. Bilirubin was high again for the next several blood tests, but then normal again when I was pregnant in my early 30s. I do remember what I was eating then - pretty much just split pea soup, yogurt, and raw green pepper, since I had morning sickness for most of the pregnancy and that's all I could tolerate. Again, I was told that the normal bilirubin test must be a lab error! Bilirubin did go back up after pregnancy.

I found a new doctor last year who finally took my GI concerns seriously and ordered celiac tests. TTG IgA was one number below the lowest positive value and they did a biopsy but it was negative for celiac (though found lots of inflammation). I specifically asked for copper and zinc tests, but doctor said it was unnecessary and wouldn't order them. I'd be really interested to know if my bilirubin is down again now that I've been gluten free for eight months...Anyhow, I'm interested to know if anyone has found a clear connection between high bilirubin and gluten, or if anyone else with a Gilbert's diagnosis has had their bilirubin numbers go back down into the normal range at times.

[cahill]

This is really interesting. I was told I have Gilbert's Syndrome as a teenager, around the time my daily diarrhea and stomach pains started. They repeated the blood test a few months later and indirect bilirubin was still high (leading to high total bilirubin). As far as I know, that's all they did to diagnose me with Gilbert's. I had no idea there was a genetic test for it. But then there was a period in my mid-20s when I was feeling good overall (not sure what I was eating at the time - a gluten problem was not on my radar then), and my bilirubin was normal. I was told it must be a lab error, because when someone has Gilbert's it will always be high. I had a bunch of non-responsive doctors who kept telling me nothing was wrong and the GI stuff was just from stress, so after a while I gave up on getting any of my questions answered. Bilirubin was high again for the next several blood tests, but then normal again when I was pregnant in my early 30s. I do remember what I was eating then - pretty much just split pea soup, yogurt, and raw green pepper, since I had morning sickness for most of the pregnancy and that's all I could tolerate. Again, I was told that the normal bilirubin test must be a lab error! Bilirubin did go back up after pregnancy.

I found a new doctor last year who finally took my GI concerns seriously and ordered celiac tests. TTG IgA was one number below the lowest positive value and they did a biopsy but it was negative for celiac (though found lots of inflammation). I specifically asked for copper and zinc tests, but doctor said it was unnecessary and wouldn't order them. I'd be really interested to know if my bilirubin is down again now that I've been gluten free for eight months...Anyhow, I'm interested to know if anyone has found a clear connection between high bilirubin and gluten, or if anyone else with a Gilbert's diagnosis has had their bilirubin numbers go back down into the normal range at times.

The gene testing I had done for gilberts is; UGT1A1 Promtoter Genotyping PCR

 

the results were: UGT1A1 Promoter (TA)Repeat Genotype 7/7

interpretation guidelines: UGT1A1 alleles containing 5,6,7, or 8 TA repeats in the promoter region have been described. The presence of the UGT1A1 promoter (TA) allele has been associated with reduced UGT1A1 activity.

 

When I got this report I email my doc and asked " does this confirm my gilberts diagnosis "    the answer was short and sweet ,,, Yes

 

 

The testing I had done for the copper levels were:cerulopasmin and  copper serum then these  results are calculated ( which most doc do not have a clue about ) to get your unbound copper levels

I also had copper 24 and 48 hours urine done

 

 

Most docs do not have a clue and will not order these tests

 

 

 My most recent  basic metabolic panel in Jan showed my total bilirubin at 1.1 range being 0.3-1.2

 and my direct bilirubins at 0.2 range being 0.0-0.4 ,,, so yes my bilirubins currently are in normal range

 

 

I would encourage any one who has been told they have gilberts to have celiac testing done then go gluten and soy free.

[greenbeanie]

The gene testing I had done for gilberts is; UGT1A1 Promtoter Genotyping PCR

 

the results were: UGT1A1 Promoter (TA)Repeat Genotype 7/7

interpretation guidelines: UGT1A1 alleles containing 5,6,7, or 8 TA repeats in the promoter region have been described. The presence of the UGT1A1 promoter (TA) allele has been associated with reduced UGT1A1 activity.

 

 My most recent  basic metabolic panel in Jan showed my total bilirubin at 1.1 range being 0.3-1.2

 and my direct bilirubins at 0.2 range being 0.0-0.4 ,,, so yes my bilirubins currently are in normal range

 

Thanks for the info, a1956chill! And good luck figuring things out, meg51577!