Frustrated Beyond Words....

[Bobbijo6681]

I have been on the Gluten Free diet since the end of January this year, and feel much much better in so many ways. However the reason I saw the GI, which lead to diagnosis, is that I have pain in my RLQ. The severity varies from day to day and time to time. My dr is trying his hardest to find a cause for this pain but so far has not been able to pin point the issue. Last week I had a CT Scan done that showed nothing significant, but since then the pain has gotten progressivly worse. On Monday I couldn't handle it anymore and called the Dr office and was told by his nurse that he was in the hospital for the day, but he took my chart with him. He suggested I go to the ER and when they called for a GI consult he would be down. Well....the stupid ER dr wouldn't listen to me and insisted that it wasn't a GI issue so she would not call him. I proceded to tell her everything that he had done so far, and what he was watching. To make a long story short (too late I think) I explained to her that my LFT's have been elevated so the dr was watching them. She told me that they looked Ok on the bloodwork they had done. She printed out the lab results and when I got home I looked them up...although they are in the "normal" range they are in the upper part of the scale. I go in for an xray of my small bowel tomorrow, which is the only part of the digestive track they say they haven't been able to look at yet.

Has anyone else had problems with elevated LFT's after going Gluten Free? Is there a reason this may happen? If this test doesn't show anything, I am so confused as to what to do next. The only way I have survived this week is because of all of the pain meds they have given me, but I can't take those forever, not to mention I have to work and it is difficult to do that when I am loopy because of the meds.

Any advice that someone has would be greatly appreciated, otherwise THANKS for listening!!!

[GFinDC]

Have they checked your gall bladder? That seems like something the GI would have tested already. I have read that gall stones can cause pain that area.

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[allisons]

Undiagnosed pain is incredibly difficult - the urgency is way beyond the ability for medicine to handle it. But a good diagnosis is worth waiting for. An ER doctor is for keeping you alive (or managing emergent pain) , a Primary Care Physician is for keeping a healthy person healthy - you need to be under the care of a specialist if you actually have a problem and hopefully your PCP pushes you towards the right specialist.

I say hold off until you can get a referral from a doctor who knows to a doctor who can really help you.

[Wolicki]

There are many here who have had elevated liver enzymes and it is associated with celiac. I agree with GFinDC, have your gallbladder checked. Usually an ultrasound and/or a test whose name I cannot recall because my brain is mush today where you swallow barium and they take xrays. Someone help me with the name?

Everyone in my family, on both sides, has had their gallbladder removed. Mine started giving me trouble at the age of 14, but didn't get it actually dx'd until I was 21. My sister had pain for years and years, and I kept telling her to have her gallbladder checked. Her docs weren't doing the right tests, until she had an attack while pregnant and had to have surgery when she was 3 months along.

keep yelling until someone checks to be sure it's not your gb. It is excruciating.

[Roda]

There are many here who have had elevated liver enzymes and it is associated with celiac. I agree with GFinDC, have your gallbladder checked. Usually an ultrasound and/or a test whose name I cannot recall because my brain is mush today where you swallow barium and they take xrays. Someone help me with the name?

Tests for your gallbladder include a gallbladder ultrasound and if necessary a HIDA scan to test the function of the gallbladder. The other test Wolicki is talking about is an upper gi series or a small bowel follow through test. They can do them separatly or together, depending on what your doctor orders.

[Bobbijo6681]

Thanks for all of the replies!!

I had my gallbladder out in 2006, years before I was diagnosed Celiac. I did have the Small Bowel Follow Through done today...hoping the results of that come back quickly. I am in soooo much pain I just want to curl into a ball and cry.

Thanks for listening to me vent. I know some people have it way worse than I do, so I should try to find the positive...that is just really hard right now!

[Roda]

Thanks for all of the replies!!

I had my gallbladder out in 2006, years before I was diagnosed Celiac. I did have the Small Bowel Follow Through done today...hoping the results of that come back quickly. I am in soooo much pain I just want to curl into a ball and cry.

Thanks for listening to me vent. I know some people have it way worse than I do, so I should try to find the positive...that is just really hard right now!

Make sure you drink lots of fluids for the next few days so you don't get constipated. Have they done a colonoscopy, or a CT scan? It sucks to be miserable and not know why. HUGS to you!

[Bobbijo6681]

Yes they told me to drink lots of fluids so I am trying to make sure that I do so. I have had both the colonoscopy done and the CT. Had an ultrasound done too. So far nothing is showing up....but the pain doesn't go away. Most of the time I just try to grin and bear it, but right now I am just having a pity party for myself. I HATE FEELING THIS WAY!!!

Thanks for your support!!

[Roda]

Have they went back to make sure the ducts from the liver are open? Some people can have problems after having their gallbladder removed. Have you had an MRI body scan? Sometimes it can show things that the other modalities can't. Here is a link for you to look at.

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[Bobbijo6681]

Thanks I read that and will definately ask about it if this test they did today doesn't give us any answers.

I am soooo glad that I found this site and so many wonderful people that are willing to help!!

[Salax]

In regards to a gall bladder, I had exactly the same issue, I have been gluten-free since feb 2009 and in late april the pains in the right side began. I knew it was my gall bladder, but when I went to the ER they did a HIDDA scan that showed everything was ok. The HIDDA scan is suppose to show stones or blockages. HOWEVER, if you do a HIDDA Scan with CCK contrast (that is the key) that actually shows you what the gall bladder is working at, for example mine was at 13%. Thus Pain and lots of it. Make sure you demand a HIDDA scan with CCK contrast to rule out all avenues of gall bladder issues.

I hope you feel better, I know what it's like to go through that type of pain. *hugs*

[Wolicki]

I've heard some people, my Granny included, who got stones in the bile duct where the GB used to be. Maybe the HIDA can find that? Back when mine was wonky, they didn't have that scan, just the upper GI (thanks Roda!)

Gosh I hope you feel better soon!