Anyone Know What This Could Be?

[Phila]

Hi everyone,

I have been gluten-free since November 05 and feel much better. There have been many improvements in my well-being, with changes that I never expected to occur.

I still get occasional "attacks" (for lack of a better word), however. When I have an attack the following occurs:

-sharp pain right below left rib cage

-tiny rash on right side of abdomen right below rib cage

-major abdominal distention

-swelling in feet

-major itching all over body

-thrown up a few times

-pain in right shoulder blade (not always)

-major fatigue

-hair loss

-very light coloured stool

-high fat in stool sample

The above symptoms clear up after an "attack" and all occur at the same time.

I have had an ultrasound which did not show anything. What could this be? I'm especially worried about the itching.

Some of my bloodwork has shown high White blood cell count, high prolactin, high good and bad cholesterol and fat in stool sample. I will have another round of blood work to see what has changed since going off gluten.

Any input will be appreciated.

[Phila]

I also have high HDL and LDL cholesterol....even though I eat good food.

Anyone know if liver problems can sometimes be present even if not showing up on an ultrasound?

[LKelly8]

Could be gallstones, they might not show up on ultrasound, especially if they're already in the "main" duct.

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[rinne]

I am feeling many of the symptoms you just described right now. I had a DUH moment when the pain started about 15 minutes after I ate eggs and then realized they were probably from chickens who had eaten grain. I am new to this and I keep slipping up and not being sure if I slipped or if there is now something else I cannot eat like eggs.

[trents]

I'd push for a hide-a-scan if I were you. It's a gallbladder test that checks for ejection factor. You many not have gallstones (what the ordinary ultrasound checks for) but your gallbladder may not be contracting well enough to push out the bile. It can stay in there too long and get foul. Or, you may have some small stones that are blocking the duct but not large enough to show up well on an ultrasound.

Steve

[2kids4me]

light colored stool along with pain in the upper right abdomen should be red flag for your doctors to run a liver function panel. Liver problems are not uncommon in celiacs. The link I include is a good article but very "medical" terms.

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It can take several months to years for the body to repair after starting gluten-free diet.

[debmidge]

I vote for liver panel, I've heard of this before.

I'd get it asap before you get the symptoms chronically and have to go to the hospital.

[indyceliac]

Pancreas.

It can cause ALL those symptoms. Especially the itching..which gallbladder does not.

Other tests u can get are an MRI, or CT scan.

Theres even a more specific test where they inject dye and can look for blockages in the bile ducts...i forget what its called.

But u should definitely pursue it. Drs will send u home if you aren't deathly ill...doesnt mean there still isnt something wrong.

[Phila]

Thank-you for your replies. They are very helpful.

I am worried about it being liver or pancreas related. I have done some research and learned that the itching can be sign of bile salts in the bloodstream. I am quite concerned about what this may mean (the itching in combination with the edema) and have booked another appointment with my doctor. Praying it's not my liver!!!

The pain is actually quite strange: I get a sharp pain in the upper left abdomen, right below my ribcage, but the rash is on the right side of my abdomen, right below the ribcage. The back pain occurs on the right side near my shoulder blade.

[debmidge]

The liver and pancreas can be either CT scanned or sono-grammed. This and the liver panel (hepatatic panel) is needed. Are you having diarrhea and stomach cramping too?

Do you live near a university hospital? Were you exposed to chemicals lately? Like petroleum or petroleum vapors?

[Phila]

The liver and pancreas can be either CT scanned or sono-grammed. This and the liver panel (hepatatic panel) is needed. Are you having diarrhea and stomach cramping too?

Do you live near a university hospital? Were you exposed to chemicals lately? Like petroleum or petroleum vapors?

Thank you for your reply. I have not been exposed to chemicals to my knowledge. Prior to going gluten-free I had chronic diarrhea. Now the diarrhea and cramping only occur when I am having one of these "attacks".....and it is bad when I get it.

[shayesmom]

Thank-you for your replies. They are very helpful.

I am worried about it being liver or pancreas related. I have done some research and learned that the itching can be sign of bile salts in the bloodstream. I am quite concerned about what this may mean (the itching in combination with the edema) and have booked another appointment with my doctor. Praying it's not my liver!!!

The pain is actually quite strange: I get a sharp pain in the upper left abdomen, right below my ribcage, but the rash is on the right side of my abdomen, right below the ribcage. The back pain occurs on the right side near my shoulder blade.

I agree with a previous poster that the pancreas should be checked out. It can cause all of these symptoms and your doctor needs to pay special attention there as it is hard to see on scans due to its location. Please do not let any doctor blow this off! The symptoms you are describing can be the sign of something very serious and not just symptoms of gluten problems.

If for some reason your pancreas or liver is stressed, you can also change your diet around a bit to ease the digestive process for a while. For the pancreas, not eating meat after 1 PM to breakfast the next day is helpful as it gives it 18 hours to "catch up" with normal function. Also, staying away from preservatives, chemicals and unnatural foods may also help....especially the liver which has to filter those out of the system. Eating more raw fruits and veggies may also be of help as they contain enzymes to assist in digestion. Start slow on this and build it up so that at least 50% of your fruit and veggie intake is in raw form. And if you haven't given up dairy yet....you may want to start. One of the leading food contributors to diabetes is dairy. Casein is much like gluten in that not many (if any) people can digest it.

Taking supplements of digestive enzymes (to assist pancreas) and possibly milk thistle (to assist liver) may also help but honestly, they work better in conjunction with dietary changes. Even if they help alleviate symptoms, it is crucial that testing be done.

[Phila]

Oh boy.....Just stumbled upon an article on CNN outlining the symptoms of primary biliary cirrhosis. They describe one symptom as follows:

"Hyperpigmentation. Inadequate bile flow increases the production of the skin pigment, melanin, which causes your skin to become darker, even in areas that aren't exposed to the sun. Sometimes the deeper color isn't uniform, and your skin appears blotchy."

Strangely enough some of my moles have been darkening and crusting over. I had not connected this to any of my other symptoms and was thinking they were abnormal moles, but come to think of it now the moles crust over when I am having one of my itching episodes. My doc appointment is not until friday....not sure if I can wait that long! Does anyone know if the hyperpigmentation can occur in other disorders, besides Primary Biliary Cirrhosis?

Thanks for the help guys and gals.

[indyceliac]

Hi,

Im sure you must feel anxious but try not to worry too much...its probably nothing serious. A little stone could be blocking the duct and causing the excess bile salts, also. I know whenever I have something wrong I'll look it up on the internet and the worst case scenarios always come up first.

I dont know about the moles, but when i was pregnant i had an episode with a bad intensely itchy rash on the truck of my body..turned out it was also because of my pancreas and excess bile salts, induced by the pregnancy, and my body was just not eliminating it properly. Looking back, I dont know if it was related to the celiac..but it seems my body isnt very efficient at anything lol.

good luck to u!

Oh boy.....Just stumbled upon an article on CNN outlining the symptoms of primary biliary cirrhosis. They describe one symptom as follows:

"Hyperpigmentation. Inadequate bile flow increases the production of the skin pigment, melanin, which causes your skin to become darker, even in areas that aren't exposed to the sun. Sometimes the deeper color isn't uniform, and your skin appears blotchy."

Strangely enough some of my moles have been darkening and crusting over. I had not connected this to any of my other symptoms and was thinking they were abnormal moles, but come to think of it now the moles crust over when I am having one of my itching episodes. My doc appointment is not until friday....not sure if I can wait that long! Does anyone know if the hyperpigmentation can occur in other disorders, besides Primary Biliary Cirrhosis?

Thanks for the help guys and gals.

[debmidge]

You're making me worry too.....So when is your Dr. appointment?

[ravenwoodglass]

Oh boy.....Just stumbled upon an article on CNN outlining the symptoms of primary biliary cirrhosis. They describe one symptom as follows:

"Hyperpigmentation. Inadequate bile flow increases the production of the skin pigment, melanin, which causes your skin to become darker, even in areas that aren't exposed to the sun. Sometimes the deeper color isn't uniform, and your skin appears blotchy."

Strangely enough some of my moles have been darkening and crusting over. I had not connected this to any of my other symptoms and was thinking they were abnormal moles, but come to think of it now the moles crust over when I am having one of my itching episodes. My doc appointment is not until friday....not sure if I can wait that long! Does anyone know if the hyperpigmentation can occur in other disorders, besides Primary Biliary Cirrhosis?

Thanks for the help guys and gals.

Yes hyperpigmentation can appear with other disorders and can also be totally benign. What concerns me is what you are describing as hyperpigmentation isn't. Hyperpigmentation causes darker blotches to appear. What they call the 'mask of pregnacy' is one example. The age spots we get on our hands are another example of hyperpigmentation. I am very glad you are checking out those moles and I would not worry too much about Cirrosis at this point. If he feels it is needed or will set your mind at ease he may do a liver function blood test. I think your going to end up with a referral to a dermatologist though.

[Jennas-auntie]

Yes, please get these checked out-I agree you may need to see a dermatologist. Any time a mole starts crusting over, consider getting checked out. Unfortunately I am fairly well versed in this area since my dad died of melanoma.

The incidence of melanoma is much more common today and appears to keep increasing, possibly because we are getting less protection from the sun (ozone layer problems, another reason to take care of our environment) and because people are wearing less clothing in general than they used to and so are more likely to have burn type sun exposure. What you have may well not be melanoma, but if it is, the sooner you can get it removed the better-melanoma has about a 90% cure rate if you get rid of the cancer before it invades your tissues. However, it is particularly lethal if it gets into your vasculature and the rest of your body. There is just no really great chemo for melanoma right now (most of the good treatments are based on 6 month recurrence rates), and radiation doesn't do a whole lot since, after all, those cells are naturally supposed to protect you from radiation anyway and have a special protection around their nucleus against radiation. Just remember the ABCDEs of checking out moles-

Asymmetry

Border (usually they have irregular borders)

Color (don't want more than one color in a mole)

Diameter (usually bigger than an eraser on a pencil)

Evolving (does it itch, bleed, or crust? get it checked out).

Here is more info on identifying moles if you'd like it:

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Best wishes, and hope you can get it seen soon. Again, it may be nothing-I have a mole that occasionally crusts over a bit but have been told it is fine, just get checked out once a year. Better safe than sorry though.

[Phila]

Well.....just had my doc appointment. Went in complaining about my gut and was thrown a curve ball by my doc. My prolactin levels are high AGAIN so he has ordered a CAT scan b/c he suspects a pituitary tumour. He didn't even want to talk about my gut. I'm really worried now.

Anyone know if my symptoms are associated with a pituitary tumour.

[debmidge]

...just checking in to see what is the outcome of your testing....

It doesn't seem like anyone knows about pituitary tumors.

[debmidge]

Was the doctor going to run any other tests?

[andrew1234]

Dear Phila,

you ** may ** have signs of acute pancreatits. i.e itching, pain, light stools, high white blood cells, high fat content. Also you said that you pain below the right scalpula, which is where pancreatic pain usually radiates.

I just want to stress again that it could be a number of different things also, or it could be something benign.

You seem to have both gallblader and pancreatic symptoms which **could*** mean that a gallstone has impacted in the Ampulla of Vater, which is near the joining of pancreatic and bile ducts. Did they check your amylase and lipase levels? If they were normal than this rules out pancreatitis. What about alkaline phosphatase, was that normal? If it was that would also rule out gallstones.

Of course an impacted stone would be the first thing to show up on a CT/ultrasound and if those were normal than I wouldn't worry too much about it. As for signs of a pituitary tumor, yes high prolactin is one of them, but you would also have excruciating headaches and a condition called bilateral hemianopsia where you wouldn't be able to see in your peripheral vision you left and right side as you look forward. Also your doctor would be able to diagnose it buy looking at the optic nerve in the retina on a routine physical exam. So my guess is your doctor is doing the tests just to be 100% sure. I hope this helps, Andrew