Hyperprolactinemia As A Marker For Celiac?

[shannon79]

Hi all! I'll apologize in advance because I'm a wordy gal. So this will probably be long despite my efforts to condense.

 

Well, like everyone else I have a laundry list of symptoms dating back years, but it really took off 4 years ago after the birth of my last child (which was a very stressful pregnancy and postpartum period). Many of the things I've read here (diarrhea/loose stools, stomach pain, fatigue, depression, anxiety). When my daughter was around 20 months I knew my body was NOT right.  Unfortunately no one would listen to me as I was still breastfeeding and many of the things I could pinpoint were blamed on that (still no period--which had returned no later than 7 month pp with my first four children), excessive amounts of breastmilk, absolute zero sex drive (can't believe I'm saying these things on the internet). I ended up weaning my daughter because I felt I had no choice if I wanted to be taken seriously.

 

Low and behold, after a few months I was rechecked and my prolactin levels were still high. I then had a clear MRI--no pituitary tumor, and was referred to an endocrinologist. He first said I probably do have a tumor that's too small to image, but now says it's just idiopathic. He put me on cabergoline (1/2 tablet 2x/week!) and within a month my period had returned and the other...symptoms...had resolved  

 

So, problem solved, right?

 

Here we are 2 years later, still fatigued (which is written off because I have 5 children), constantly nauseated, upset stomach, back and forth between constipation and diarrhea, wonky menstrual cycles (which I was told that I've only been on the cabergoline <2 years so it may still be "normalizing"????), severe eczema on my hands, etc. etc. 

 

The only time I felt "better" was when my eczema had gotten so severe my hands looked like tenderized meat and out of desperation I went on a complete allergen elimination diet. No medication/doctor/derm had EVER helped. I have a virtually pharmacy of ointments and creams. Within 1 week I could see healing, in 4 my hands looked normal after over a year of suffering. This was not your typical eczema--my degree from Dr. Google tells me it was most likely Dyshidrotic Eczema. And more than that, I FELT so much better. My husband could't get over how much more alive and happier and well I seemed. Unfortunately after my hands got better I did not stick to the diet, anyone who's ever done an allergen elimination diet will attest to it being the Absolute Worst. 

 

I have a great GP, she tested me almost a year ago for everything under the sun...thyroid, lupus, sjogren's, and on paper I'm basically the healthiest dang person you ever did meet. I was frustrated and never followed through with the Rheumatologist referral she gave me, figuring if the Almighty Blood Work was normal they'd laugh me off. 

 

Now to today...over the last 2 months everything has taken a quick turn for the worse. I developed a rash across my face, which looked like a butterfly rash but the rheum said is not, I have diarrhea EVERY day, severe stomach pains constantly. I have lost 16 lbs.--after struggling basically unsuccessfully for the last 4 years to lose through diet and exercise, out of nowhere pounds start dropping off without any exercise or care, sores in my mouth, depression and especially anxiety took a major jump upwards despite me taking medication consistently, easy bruising, joint pains (no signs of arthritis), headaches (the last one lasted almost 2 solid weeks), foggy brained, dizzy...on and on. 

 

At my yearly physical my doctor again pressed visiting the rheum and/or GI doc, and my husband pushed me too (they're in cahoots). So this past Tues I had my appt. I went in expecting nothing. They quickly dismissed lupus, RA, etc., but stuck on celiac disease, something I honestly never considered. I am supposed to get bloodwork done now to check that, but am spending a couple days forcing myself to eat some gluten first because honestly my stomach has been so painful I'm barely eating ANYthing right now.

 

I did some googling yesterday and was absolutely shocked when I searched "Celiac Disease and hyperprolactinemia"-- there are a number of medical studies discussing the major link between the 2, even going so far as to call the HPL a potential marker for celiac disease. But I've yet to see anyone else who mentioned this as a symptom?

 

I'm currently...cautiously optimistic, if you can call it that? Maybe this is an answer? When I read the description of the celiac disease rash I thought it sounded so much like my "eczema", so I looked for a link and there are a TON of anecdotal reports of people who thought they had Dyshidrotic Eczema and were later diagnosed with celiac disease and believe their rash was DH. 

 

The clues and symptoms all fit, but my cynical side says this test will come back negative like all the others.

 

As a last side point, I have no family history of autoimmune disorder. However, my 6 year old developed ITP 2 years ago (an autoimmune blood disorder) which resolved after a few months but she never seemed to recover. After a round of tests and consultations that found nothing I took her off gluten and my sickly looking, skinny, moody child grew 2 inches, gained 7 lbs, lost the purple circles under her eyes, stopped complaining of joint pains and began actually EATING instead of crying that her belly hurt. So her pediatrician said let's just diagnose her gluten sensitive and leave it there for now, no need for more invasive testing if this is working at the moment. Soooo.....????

 

If you've made it this far, thanks for reading. And I'd love to hear anyone's thoughts.

 

[ravenwoodglass]

Welcome to the board. It does sound like you could be one of us so that was a good catch from your doctor. You mention you have forced yourself to eat gluten the last couple of days.  Does that mean you have either been gluten free or gluten light? If you are did you let the doctor know before he ordered the bloodwork?  If that is the case you need to make sure you are eating gluten (at least a couple slices of bread worth) for a few weeks before the test as you sure don't want a false negative because of being gluten light/free.

[notme]

goodNESS!  girl, you sound like i was.  i jumped through all the doctor hoops for YEARS and then, when my doctor is considering putting me in the hospital, (dangerously low weight from malabsorbtion) they *finally* said the magic word:  celiac.  no drugs, but no gluten.  it's like night and day.  my quality of life had dwindled down to getting up to go to the bathroom and then back to bed.  soooooooo tired...  rashes, migraines (oh, man, i do not miss those not even one bit) the whole nine yards.  mine was also triggered by the birth of my son (who has type 1 diabetes - no history of the 'betes in any other family members but now we know it's that pesky gene!) but i was jerked around by the medical professionals for 25 (TWENTY FIVE) years.  get your testing, get other testing to rule out things like chron's etc geez, i even made them test me for cancer, which i really thought i must have i was in terrible shape)  raven is right, you must be 'on' gluten to have your antibodies tested - i was not, being advised by my (dumb) doctor to start eating gluten free prematurely when you should continue with the gluten until testing is complete.  i always try to remind people:  one of the criteria doctors use to determine a diagnosis is the patients response to the gluten free diet.  when i began to gain weight, it was a sure thing.  also i feel awesome.  so, even if your labs don't come back definitive, you can still put yourself on the diet but you have to be serious about it and be completely gluten free.  (your child's response to the diet is what is making me say 'a ha!'  and, good call to you.  it'll be easier to feed everyone gluten free if there's a chance your kids have the gene.  and they probably need testing periodically, but that's another day)

 

welcome to the forum and i hope you get some answers!  

[nvsmom]

Your post resonated a bit with me.  A few of your issues, and your family's issues have come up in my life too.

 

I had the fatigue, mouth sores, butterfly-like rash joint pain, stomach pain, migraines, dizziness (postural hypotension upon standing), and I even had a bit too much breast milk (I had to hold towels to the other breast when feeding or it shot 10 feet across the room or soaked my shirt within seconds).  

 

I too was fairly convinced that I had lupus or RA because the joint pain and lupus like symptoms can take soooo long to go away once you've begun the gluten-free diet.  My rheumy said it was still celiac disease related, and after a couple of years gluten-free, my lupus like symptoms are mostly gone.

 

I also had very high IGF-1 levels for a time.  I suspected a pituitary tumor and acromegaly.  My levels have finally come back down to an upper normal level, so I wondered if it was related to celiac disease and resolved as time went by.

 

Also, I had ITP as an older teen. It was a fairly serious and uncontrollable case so they took my spleen out. Thankfully, I was one of the lucky ones for whom that worked.   ITP is linked to celiac disease, although it is not a common autoimmune disease like hashimoto's (have that too) or diabetes is.  Was she still on steroids when she was tested? Steroids can cause false negative celiac disease test results.

 

Did you have the ful celiac panel done?  Many doctors only do one or two tests without realizing that most celiac disease tests can miss up to a  quarter of all celiacs.  The more tests done, the better your chances of it being caught.

 

These are the tests:

• tTG IgA and tTG IgG (tissue transglutaminase) - most common tests
• DGP IgA and DGP IgG (deaminated gliadin peptides) - newer test, good at detecting early celiac disease
• EMA IgA (endomysial antibody) - similar to the tTG IgA but tends to detect more advanced disease
• total serum IgA (a control test)
• AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests largely replaced by the DGP tests
• endoscopic biopsy (6+ samples taken)
• skin biopsy - if there is a dermatitis herpetiformis rash - taken from beside an active rash
• DQ2 and or DQ8 genetic tests - these won't tell you if you have celiac disease, but will let you know if you are in the higher risk portion of the population.  Could be good for your daughter to do.

For the blood tests to be accurate, you will have needed to be eating gluten (about 1-2 slices of bread per day or the equivalent) in the 8-12 weeks prior to testing.  If you were not eating much gluten to begin with, you could get a false negative result.  The biopsy requires 4-8 weeks of gluten.

 

Let us know how the tests go.    Welcome to the board.

[shannon79]

Welcome to the board. It does sound like you could be one of us so that was a good catch from your doctor. You mention you have forced yourself to eat gluten the last couple of days.  Does that mean you have either been gluten free or gluten light? If you are did you let the doctor know before he ordered the bloodwork?  If that is the case you need to make sure you are eating gluten (at least a couple slices of bread worth) for a few weeks before the test as you sure don't want a false negative because of being gluten light/free.

Thank you. I've been food-in-general light, honestly. When I eat I get so sick I've been gradually eating less and less. At this point the bloodwork is done, so it's kind of neither here nor there. And quite honestly I feel so terrible that regardless of what the labs say I think my next stop is a GI doc. Thanks for your reply. 

[shannon79]

goodNESS!  girl, you sound like i was.  i jumped through all the doctor hoops for YEARS and then, when my doctor is considering putting me in the hospital, (dangerously low weight from malabsorbtion) they *finally* said the magic word:  celiac.  no drugs, but no gluten.  it's like night and day.  my quality of life had dwindled down to getting up to go to the bathroom and then back to bed.  soooooooo tired...  rashes, migraines (oh, man, i do not miss those not even one bit) the whole nine yards.  mine was also triggered by the birth of my son (who has type 1 diabetes - no history of the 'betes in any other family members but now we know it's that pesky gene!) but i was jerked around by the medical professionals for 25 (TWENTY FIVE) years.  get your testing, get other testing to rule out things like chron's etc geez, i even made them test me for cancer, which i really thought i must have i was in terrible shape)  raven is right, you must be 'on' gluten to have your antibodies tested - i was not, being advised by my (dumb) doctor to start eating gluten free prematurely when you should continue with the gluten until testing is complete.  i always try to remind people:  one of the criteria doctors use to determine a diagnosis is the patients response to the gluten free diet.  when i began to gain weight, it was a sure thing.  also i feel awesome.  so, even if your labs don't come back definitive, you can still put yourself on the diet but you have to be serious about it and be completely gluten free.  (your child's response to the diet is what is making me say 'a ha!'  and, good call to you.  it'll be easier to feed everyone gluten free if there's a chance your kids have the gene.  and they probably need testing periodically, but that's another day)

 

welcome to the forum and i hope you get some answers!  

Thanks for your reply. I'm sorry about your son. Diabetes is a nasty beast, and I feel especially sorry for children dealing with it. 

I too have the dark cancer thoughts--if it's not celiac then clearly I have a brain tumor. funny/not funny. 

Still waiting for results....

[shannon79]

Your post resonated a bit with me.  A few of your issues, and your family's issues have come up in my life too.

 

I had the fatigue, mouth sores, butterfly-like rash joint pain, stomach pain, migraines, dizziness (postural hypotension upon standing), and I even had a bit too much breast milk (I had to hold towels to the other breast when feeding or it shot 10 feet across the room or soaked my shirt within seconds).  

 

I too was fairly convinced that I had lupus or RA because the joint pain and lupus like symptoms can take soooo long to go away once you've begun the gluten-free diet.  My rheumy said it was still celiac disease related, and after a couple of years gluten-free, my lupus like symptoms are mostly gone.

 

I also had very high IGF-1 levels for a time.  I suspected a pituitary tumor and acromegaly.  My levels have finally come back down to an upper normal level, so I wondered if it was related to celiac disease and resolved as time went by.

 

Also, I had ITP as an older teen. It was a fairly serious and uncontrollable case so they took my spleen out. Thankfully, I was one of the lucky ones for whom that worked.   ITP is linked to celiac disease, although it is not a common autoimmune disease like hashimoto's (have that too) or diabetes is.  Was she still on steroids when she was tested? Steroids can cause false negative celiac disease test results.

 

Did you have the ful celiac panel done?  Many doctors only do one or two tests without realizing that most celiac disease tests can miss up to a  quarter of all celiacs.  The more tests done, the better your chances of it being caught.

 

These are the tests:

• tTG IgA and tTG IgG (tissue transglutaminase) - most common tests
• DGP IgA and DGP IgG (deaminated gliadin peptides) - newer test, good at detecting early celiac disease
• EMA IgA (endomysial antibody) - similar to the tTG IgA but tends to detect more advanced disease
• total serum IgA (a control test)
• AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests largely replaced by the DGP tests
• endoscopic biopsy (6+ samples taken)
• skin biopsy - if there is a dermatitis herpetiformis rash - taken from beside an active rash
• DQ2 and or DQ8 genetic tests - these won't tell you if you have celiac disease, but will let you know if you are in the higher risk portion of the population.  Could be good for your daughter to do.

For the blood tests to be accurate, you will have needed to be eating gluten (about 1-2 slices of bread per day or the equivalent) in the 8-12 weeks prior to testing.  If you were not eating much gluten to begin with, you could get a false negative result.  The biopsy requires 4-8 weeks of gluten.

 

Let us know how the tests go.    Welcome to the board.

Thank you for your reply. I've been off my prolactin regulating meds for almost 2 weeks now. I did get a cycle at the right time, but it only lasted 2 days and was gone without a trace. And the milk is back Clearly the prolactin levels are still an issue, and I'm really curious what happens if/when I go gluten free. Husband and I have decided to forego restarting the meds for now. My endocrinologist recommended starting back if any symptoms reappear, which they clearly have. But like I said, would like to see the effects of a gluten-free diet on that. My lab paperwork said "celiac panel", I'm assuming that's the full panel. 

 

As to the ITP...she was never put on steroids. At CHOP they will let platelet levels go very low before treating, the thinking being that steroids is only a temporary treatment and once they're stopped you'll be back where you started. They prefer to watch and wait and let the body heal itself if possible. Fortunately her body did--and very quickly. That said, I don't know that they ever even did a celiac panel on her. Most of the bloodwork was basic CBC to check platelet count. And the Rheum didn't feel a need to run any additional testing on her. Going gluten-free was based simply on my research.

 

I have been trying to force myself to eat some gluten everyday since reading all the replies here. Many days I doubt I get 2 slices of bread worth ...the pain is just miserable and I have zero appetite. I am more functional without food than with these days. But like I said above, at this point the pain and other symptoms are so bad that my next stop is most likely a GI doc, regardless of what the celiac panel says.

 

Thanks again for your reply. I really appreciate all the replies I've gotten, and I apologize for taking so long to reply. I couldn't figure out how to reply from my phone and it took me this long to sit down at the computer again!

[nvsmom]

Let us know how the celiac panel goes, and what tests they do.  Many panels only do one or two tests so make sure you get a look at what was done.

 

Good luck!!

[shannon79]

So I ended up making an appt for gi doc before I even got my results. Rheumatologist got very weird... Called and told me all results were normal. Not gonna lie, I cried. I am to the point where celiac disease would have been an answer, and that's what I want. Then they called 2 days later and said all results were normal except celiac panel, they didn't get that yet. Ugh. Finally left a 4th message Monday and got a less than friendly "everything was normal" . 

Fine whatever please send me a copy for my gi visit...got that this morning before my appt. It turns out I did have 1 abnormal result out of 4 tests on the celiac panel. 

Gi doc was very helpful. Said celiac disease isn't off the table. I'm not anemic, and c reactive protein and sed rate were both normal so that makes celiac disease seem less likely. But he scheduled me for endoscopy and colonoscopy as well as gallbladder ultrasound. He wants a full picture of what's happening in there. And I am getting a lot of pain on my upper right side and around to my back. 

So now I wait until Nov 5th. 

In the meantime I'm down 20 lbs, and gotta be honest as lousy as I feel it was 20 lbs that needed to go haha. Between that and my rising prolactin levels filling my bra out a bit more again we're calling this the "Supermodel Diet" . 

 

 

[nvsmom]

If you had an abnormal test, it is probably celiac disease.  Not many celiacs are positive on all tests.  I would put them in the minority.

So which test was positive?  A tissue transglutaminase, endomysial antibody, or demaninated gliadin peptide positive is pretty much a sure thing.

So, just another week or two of gluten?  Good.  Make sure they take at LEAST 6 samples.  Anything less than that is not enough and will increase the odds that the damage is missed, which happens to 1 out of 5 celiacs.

Remember that a negative biopsy does not discount a postive celiac disease test. It just doesn't support the diagnosis.

And (hugs) to you.  I remember getting all negative results from my rheumy (after I had been gluten-free for 9 months) and crying because I wanted an aswer. It turns out that the gluten-free diet was the answer, but it took close to two years for everything to get better, and I still get the occassional symptom.

Good luck. 

[shannon79]

Nvsmom,

This is what I've got:

Immunoglobulin A 161 (81-463)

Gliadin IgG 7 (<20)

Gliadin IgA 26 (<20) 

Both of these say "this is a deamidated peptide assay"

TTG IGA 6 (<20)

TTG IGG 9 (<20)

Both of these say "results obtained using thr IMMCO ImmuLisa h-tTg IgG ELISA assay"

So it looks like the gliadin IgA is the misfit.

I'm a medical research junkie-any illness of myself, my kiddos or people i know...shoot, even people i don't know sends me googling. I think i missed my calling in the medical field. But i swear I've read the explanation for the celiac tests 10x and i just can't wrap my brain around it.

My scopes arent until November, so ive got a solid 5 more weeks of this. I'm not really sure how I'm supposed to just deal with not eating or being in pain. ?

Thanks.

[nvsmom]

Your deaminated gliadin IgA (DGP IgA) is the misfit.  Just remember that a positive is usually a positive for celiac disease. The DGP IgA is a good test.  I would trust it.  It sometimes catches people who were negative in the tTG tests - it's good for that.  One of our moderators had that experience. I'll see if I can send her this way.

Don't make yourself too sick over the next few weeks.  The equivalent of 1-2 slices of bread per day should be enough.  Try saving it until later in the day if it wrecks your day.

This is a good, if simplistic article about the DGP tests: Open Original Shared Link

More: 

Open Original Shared Link

Testing for IgA and IgG antibodies to unmodified gliadin proteins is no longer recommended because of the low sensitivity and specificity of these tests for celiac disease; however, recent studies have identified specific B-cell epitopes on the gliadin molecule that, when deamidated by the enzyme tTG, have increased sensitivity and specificity for celiac disease.(5,6) The tests for deamidated gliadin antibodies, IgA and IgG, replace the older gliadin antibody tests, which have been discontinued at Mayo Clinic. The sensitivity and specificity of DGLDN / Gliadin (Deamidated) Antibodies Evaluation, IgG and IgA, Serum for untreated, biopsy-proven celiac disease were comparable to test TSTGP / Tissue Transglutaminase (tTG) Antibodies, IgA and IgG Profile, Serum in a study conducted at Mayo Clinic.(5)  Open Original Shared Link

and...

• Deamidated gliadin peptide (DGP) antibodies (anti-DGP), IgA or IgG — may be positive in some people with celiac disease who are negative for anti-tTG, especially children less than 2 years old. It may sometimes be ordered with or following an anti-tTG test, especially if anti-tTG is negative. DGP IgG testing along with anti-tTG IgG is recommended by the American College of Gastroenterology for people who have low IgA or IgA deficiency. If the anti-DGP test is positive, it may be used to monitor celiac disease.  Open Original Shared Link

Hang in there.

[cyclinglady]

Shannon,

I tested positive to only the DGP IGA when I was diagnosed in 4/2015.  My biopsies revealed moderate to severe damage (Marsh Stage IIIB).  Since my hubby has been gluten-free for 14 years, I knew the diet well.  I never went back for celiac disease testing because I was feeling well and my anemia (main symptom) was resolved.  I got glutened this past July (no clue to the cause but have a few suspects -- foods/meds my hubby never consumes) and had a blood panel done again.  Again, just one positive on the DGP iga.  I have Hashi's (but many Celiacs have it) but I have no clue why I test out this way.  Neither do my doctors.  

I went originally for a routine colonoscopy (Yep over 50) and my GI noted that I had been anemic all my life.  No kidding.  I have Thalssemia, another anemia.  Found out I had two types of anemia.   I knew when I got my celiac blood test that it was for sure.   Just a gut feeling -- no pun intended.    I ate a loaf of sourdough a day for seven weeks.  By the time I had my endoscopy and colonoscopy I had stomach issues.   I do not recommend this at all.  But I did have time to say farewell to gluten.  Not sure I would do it again.   Who would have thought that both hubby and I would have the same thing!  Took about two years to heal, but I did heal!  

I hope this helps!  Hang in there!  

[notme]

if i had to eat gluten again for testing, i would be wearing out the pizza!!!  because if you hafta go gluten free after all this, good pizza is far and few between, lolz - just about mythical   as in, i have heard tales of decent gluten-free pizza, but i've never been lucky enough to ever eat any.  blech.  

good luck with your challenge   

 

ps - brain tumor cracked me up - 'funny not funny' is my sense of humor  

[shannon79]

Well, it's done. I called the office and pleaded my case and the wonderful scheduler said "no, you absolutely can't wait until November, I'm GOING to find you something sooner". Had the endoscopy  and colonoscopy last Wednesday, gallbladder u/s the Friday prior. Obviously still no answer on the biopsies, but we found LOADS of other fun stuff ? 

As I suspected I have gallstones and no doubt they're causing at least some of the trouble. So it's buh bye gallbladder... Eventually. 

Endoscopy found small hiatal hernia and gastritis (!) and colonoscopy found diverticulosis. 

And as a side point, I NEVER EVER EVER want to do that "prep"  again. It was straight up HORRIBLE.  

so, spoke with gi doc, he wants me to avoid ibuprofen, start on some prilosec, and come in for a discussion once my biopsy results are back. 

I have gone gluten free as of a couple days ago... Minus yesterday. My FIL had heart surgery and stuck at the hospital I grabbed some fries which were those nasty coated kind... My gut (no pun Intended) said it most likely had wheat in it, but I was dizzy hungry so I ate them, and paid for it about an hour later with some nasty pain. ? 

So, one more week or so and we should have biopsy results.... 

[shannon79]

if i had to eat gluten again for testing, i would be wearing out the pizza!!!  because if you hafta go gluten free after all this, good pizza is far and few between, lolz - just about mythical   as in, i have heard tales of decent gluten-free pizza, but i've never been lucky enough to ever eat any.  blech.  

good luck with your challenge   

 

ps - brain tumor cracked me up - 'funny not funny' is my sense of humor  

My daughter made me an INSANE gluten-free chocolate cake with pb frosting last night. Gosh I love having a teenager ? 

But bread..... Oh,  bread. I am (was) a bread maker. And understanding the science behind bread making I have a very hard time believing you'll ever get a passable gluten-free bread. Bread IS gluten. Take away the gluten and you're left trying to create bread with gums and chemical reactions that have no soul. ?

That is my hands down biggest fear with this new adventure .... 

[squirmingitch]

Ahhhhhhhhhh, grasshopper, you have much to learn yet. Do not despair. Just get yourself the "How Can It Be Gluten Free Cookbook" by America's Test Kitchen. Start with the first one or go ahead & get them both. The first one has some delicious gluten-free bread!!! And dinner rolls. I tweaked the dinner roll recipe & make burger buns out of it which also serve as sandwich rolls. For gluten-free loaf bread though DO get yourself some of these loaf pans:

Open Original Shared Link

gluten-free bread requires the height of these pans to support it or else you will have to make tin foil collars which I tried & they are no fun & make a wonky looking loaf. The pans are worth every penny!