Pituitary Tumours

[Phila]

Ok....So I went to my doc today b/c I have been having a laundry list of symptoms (swollen feet, itchy all over, major abdominal distention, fainting spell, moles darkening and crusting over, abdominal pain and pain in right shoulder blade, hair loss, and major fatigue). I am 100% gluten-free, but still get these symptoms so I thought something was going on in the biliary system (pancreas, liver, gallbladder). Much to my surprise, doc is very concerned about repeated high levels of prolactin in my blood (just had new results today). He ordered a CAT scan of the pituitary gland b/c he suspects a pituitary tumour. He dismissed my instinct that something is happening gastrointestinally and wants the CAT done asap. I insist that something is happening in the gut, but he chalks that up to possible gluten ingestion. I'm not sure about this....I've been very careful and very savvy and many of my symptoms suggest that more is at play here. At any rate, despite my disbelief, I am going ahead with the CAT scan. I am now wondering if any of you have heard of a link b/w celiac and pituitary tumours/high prolactin. I'm not in denial here....it's just that this came out of left field today. Anyone know if there's a connection?

Thanks

[Phila]

Well I decided to do some research on pituitary tumours and prolactin. I know that I should always come back to celiac when I have abnormal symptoms or bloodwork. Studies have found a link b/w celiac disease and elevated prolactin levels. Apparently severity of celiac is related to higher levels of prolactin (ie..high prolactin is associated with greater villous atrophy).

I have a feeling that no pituitary tumour will be found. Yet another reason why I want a celiac specialist....my doc obviously has no idea about this.

Anyone else know about this?

Check out this interesting link

Open Original Shared Link

[ravenwoodglass]

This was an interesting link. Thanks for posting it.

[Judyin Philly]

DITO--RE: POSTING THIS. I CK'D OUT THE SITE AND WILL READ NOW.

YEARS AGO I HAD A MILKY WHITE DISCHAGE FROM THE NIPPLE. LIKE MILK BUT WASN'T MILK THE prolactin LEVELS WERE UP.

ENDOCRINOLOGIST THOUGHT THAT OF THE 'P' TUMOR HAD IT CK'D NO

JUST HAD A BRAIN MRI FOR GLUTEN ATAXIA..GUESS IT WOULD HAVE SHOWN UP IN THAT SCAN 'RIGHT'

THIS IS A THREAD I'M GOING TO FOLLOW CLOSLY

I NEVER HAD THE SCOPE OF VILLI DR.S SAID 100 % SUCCESS WITH gluten-free DIET WAS ENOUGH DID THE BLOOD TEST WHILE ON GLUTEN AND IT WAS LOW POSITIVE.

THANKS AGAIN FOR THE TOPIC.

JUDY IN PHILLY

[ravenwoodglass]

DITO--RE: POSTING THIS. I CK'D OUT THE SITE AND WILL READ NOW.

YEARS AGO I HAD A MILKY WHITE DISCHAGE FROM THE NIPPLE. LIKE MILK BUT WASN'T MILK THE prolactin LEVELS WERE UP.

ENDOCRINOLOGIST THOUGHT THAT OF THE 'P' TUMOR HAD IT CK'D NO

JUST HAD A BRAIN MRI FOR GLUTEN ATAXIA..GUESS IT WOULD HAVE SHOWN UP IN THAT SCAN 'RIGHT'

THIS IS A THREAD I'M GOING TO FOLLOW CLOSLY

I NEVER HAD THE SCOPE OF VILLI DR.S SAID 100 % SUCCESS WITH gluten-free DIET WAS ENOUGH DID THE BLOOD TEST WHILE ON GLUTEN AND IT WAS LOW POSITIVE.

THANKS AGAIN FOR THE TOPIC.

JUDY IN PHILLY

Judy, This is a curiosity question about the MRI. They thought my gluten ataxia and nerve damage was MS so they did one of these on me. The only thing they found was what the neuro said were UBOs, Unidentified Bright Objects, they looked like spots of white light on the films. The MRI specialist said they were lesions but did not appear to be demylinating lesions. The nuero shrugged his shoulders and said they were nothing. I found out a while back in some countries they use UBOs as a diagnostic tool for celiac. Especially when they find them in kids. Do you know if they found these with you? Now that a lot of the nerve damage has healed, not all but enough to live almost normally I often wonder if those lesions are still there.

[Judyin Philly]

Now that a lot of the nerve damage has healed, not all but enough to live almost normally I often wonder if those lesions are still there.

[ravenwoodglass]

5 THEN 2 DAYS LATER WAS AT MY INTERNIST FOR CELLUITIS AND THAT WAS ONE MONTH AND 3 DAYS AGO. I STILL DON'T KNOW WHAT'S IN MY HEAD..NO ONE TOLD ME ANYTHING ...WITH/HOLDING INFO FOR BRAIN BIOP/ CHIRO WAS TO GET A COPY OF DISK OF MRI BUT THEY ARE NOT ALLOWING HER ACCESS.

SOOOO WHAT THE HELL DO I KNOW...ON HEALTH INCIDENT AT A TIME IS MY MOTO...

IF YOU HAVE ANY INFO ON THE 'UBO' WOULD LOVE TO READ.

THANKS FOR CARING..JUST GUESS THIS NOTE MIGHT BE SNIPPY BUT I'M SO TRIED OF THIS 'SEARCH' FOR ANSWERS.

MAYBE YOU CAN HELP AS THE NEURO DR'S ARE A PAIN IN THE A**.

LOVE

J

I am so sorry that you are having to go through all this. I can help with one thing though, you have a legal right to a copy of that disk. Once it is in your hands you can show it to anyone you want. After being misdiagnosed myself and half dead before celiac was found I have made it a habit to get copies of all lab work and any other tests they do and at times my whole record including the specialists comments. Don't worry about the note being 'snippy', I didn't think it was. I will see if I can find any of the research that I found before and will try and get back with links soon. UBO's are well researched in Europe so hopefully I will be able to locate stuff from sites your doctor will respect. You must be in so much pain and stress from all this I wish there was more I could do but for now (((((((hugs)))))))).

Krista

Open Original Shared Link

This is a link to a page on www.pubmed.gov

It looked like it had quite a few articles. I did a search using the words 'unidentified bright objects and celiac. I find it interesting that even though I had a previous seizure disorder diagnosis, sub-illeal, that my last neuro said they meant nothing. Apparently celiac and seizures and these things are co-related.

This was short so thought I would cut and paste.

"Brain white-matter lesions in celiac disease: a prospective study of 75 diet-treated patients.

Kieslich M, Errazuriz G, Posselt HG, Moeller-Hartmann W, Zanella F, Boehles H.

Department of Pediatrics, Johann Wolfgang Goethe University, Frankfurt/Main, Germany. mkieslich@zki.uni-frankfurt.de

OBJECTIVE: Celiac disease (celiac disease), or gluten sensitivity, is considered to be a state of heightened immunologic responsiveness to ingested gluten proteins in genetically predisposed individuals. The gastrointestinal manifestation suggests a severe enteropathy of the small intestine with malabsorption, steatorrhea, and weight loss because of a deranged mucosal immune response. Neurologic complications occur, especially epilepsy, possibly associated with occipital calcifications or folate deficiency and cerebellar ataxia. There have been reports of brain white-matter lesions as an extraintestinal manifestation in Crohn disease and ulcerative colitis but not in celiac disease. METHODS: In this study, 75 diet-treated mainly pediatric patients with biopsy-proven celiac disease underwent prospectively clinical neurologic examinations, laboratory investigations, electroencephalography, computed tomography, and magnetic resonance imaging. The age range was 2.8 to 24.2 years with a mean of 11.6 years. The mean period of gluten exposure was 2.4 years. RESULTS: Ten patients had neurologic findings such as febrile seizures, single generalized seizures, mild ataxia, and muscular hypotonia with retarded motor development. No folate deficiency was found. The hippocampal regions showed no abnormalities. Computed tomography did not reveal any cerebral calcifications, but magnetic resonance imaging detected unilateral and bilateral T2-hyperintensive white-matter lesions in 15 patients (20%). There was no correlation between these lesions and dietary compliance or neurologic or electroencephalographic abnormalities. The mean gluten exposure time of these patients was slightly increased (not significant). CONCLUSIONS: Focal white-matter lesions in the brain may represent an extraintestinal manifestation of celiac disease. They may be ischemic in origin as a result of a vasculitis or caused by inflammatory demyelination. They seem to be more typical of pediatric celiac disease than cerebral calcifications. Their prognostic value is unclear and needs to be elucidated in additional studies. celiac disease should be suggested as a differential diagnosis in children with unclear white-matter lesions even without intestinal symptoms."

[Phila]

Very interesting responses. You know...if celiac can affect the skin, it's not a stretch that it can affect the brain/head. I have the CAT scheduled for July 25/06. I hope they give me results on-site. My doc asked if I was allergic to dye: How is dye used on CATS?

I'm one of us celiacs who had numerous symptoms (including amennorhea), so I guess I shouldn't be surprised if they find something on the CAT.

[Rikki Tikki]

Judy:

Just my thoughts here:

I wouldn't wait on getting that lump in your brain biopised. I had a growth on my brain and they said if I didn't have it taken out I would of ended up blind and would of lost my balance. It ended up being a benign growth, but I am glad I had it taken out.

Anyway, likewise the MRI showed plaque on the other side of my brain, the neurologist (yes, they are weird) thought it was due to MS. He thought that due to nerve conduction studies but I didn't have the spinal tap because I was too scared.

ANyway, thought I would share

[Judyin Philly]

Hi All

wow alot in info here

don't know who said what as it's 2:30 am . did it again, went to watch weather and fell asleep on sofa and now wide awake...

someone posted this I'm one of us celiacs who had numerous symptoms (including amennorhea), I don't know what this is??? sorry)

I know I can get my records and have done so everytime . my chiro always gets all reports and then copies for me...she's had her own problems with her 7 yr old son with chrons' and a feeding tube so she just hasn't had time to go get it and I need to do that. she was going to get the disk and show me on her lap top and explain it all. she reads mri's better than my dr...

Anyway, when i can get over to the hospital i will get it.

i'll re read the articles listed here and write more tomorrow.

thanks all

judy

[Phila]

Hi All

wow alot in info here

don't know who said what as it's 2:30 am . did it again, went to watch weather and fell asleep on sofa and now wide awake...

someone posted this I'm one of us celiacs who had numerous symptoms (including amennorhea), I don't know what this is??? sorry)

I know I can get my records and have done so everytime . my chiro always gets all reports and then copies for me...she's had her own problems with her 7 yr old son with chrons' and a feeding tube so she just hasn't had time to go get it and I need to do that. she was going to get the disk and show me on her lap top and explain it all. she reads mri's better than my dr...

Anyway, when i can get over to the hospital i will get it.

i'll re read the articles listed here and write more tomorrow.

thanks all

judy

Hi Judy,

Amennorhea is absence of periods. I have NEVER had normal periods. I remember getting my first period at age 12 and then not getting it again for another 8 months. I went my entire life with maybe 1 period in a blute moon. And then it happened....I went off gluten in November and am now on a 35-40 day period cycle. The only other time my period resembled something even close to "normal" was when I was on an Atkins-type diet 5 years ago. Coincidentally, Atkins is naturally low in gluten.

I asked my doc what the connection is b/w gluten and amennorhea, but he could not really answer the question.