8 replies to this topic

[ruca55]

Hello all-
Sorry if this is to much info. About 2 years after the birth of my daughter I was still having a nipple discharge (I never breastfed). I just kept figuring it would stop sooner of later. Eventually I was sent to an endocrinologist, my prolactin levels were not high yet I still had a discharge. Looking back there were other sypmtoms as well, headaches, sinus / allergy type issues, fatigue, joint pain). Anyway I recently finished all my testing. It was about a month between my endoscopy and my follow up appt for my results. I went gluten free for that time (for the most part, maybe a slice of pizza on the week end or so). At my follow up I was told results were negative. I spen the last week eating gluten products and I am realizing that I am paying the price with how I feel! I know a lot of people have neurological issues. Is this something that could be connected to a gluten problem? Anyone else have a pituitary gland problem?

[Hawthorn]

Hello

My right breast has had a slight discharge for oooh, 8 years or so? very slight - barely noticable in fact. I just put it down to the fact that I breastfed four children and have never really thought about it. I shall keep an eye on this now and see if it disappears off the gluten.

What I do know is that I have had various symptoms for many years, and never even realised it until I went gluten free - and then got glutened again. My period for example was never regular. Ever. I could go up to a year without having one, but never had a problem concieving except with my daughter. She took a year which I suppose in the grand scheme of things isn't really a long time. Gluten free for a year, my period is almost monthly now. Not to the day, but within a five day time slot. I'm not sure I like it
I have always had a really nice time with body hair too. I need to buy shares in Veet! Off the gluten I noticed a huuuge reduction in this.

So many things that were accepted as normal for me, I'm now realising were down to the big G. Things that I had just put down to 'weird hormones' )

Bottom line is, if you feel you're paying the price for eating it, positive or negative results do not matter. Don't eat it.

[ruca55]

Hmmm. Interesting. My period was almost like clockwork until after my second pregnancy. I have always said something wasn't right after I had her. Every time I call my ob about issues with my period they blame it having a tubal and my age. I'm 35 now, but they've been claiming my age at 31!!! I fought it for four years but it's getting bad, apparently my options at this point are taking birth control pills or an ablation. Yippee! A couple of months ago I had to have my gallbladder removed and the thought of surgery scared the daylights out of me. I started to research all I could and came across celiac. It definitely connects most (if not all of the dots) for me. Someone posted a link a couple threads down about a study that was done at the University of Maryland, and that fills in the missing pieces for me. As long as I'm not overloading my system it seems once in a while I can handle a piece of pizza with out a problem. Now I know what I need to do, it's just following through.

[RollingAlong]

my husband was tested for pituitary problems; but everything cleared up, hormone wise, once he went gluten free (all his tests for gluten/celiac were negative).

[Neshema1]

I'm not a doctor; well I am but not a medical doc, a prof with strong background in neuropsych/physiology & a neurological problem myself, which led me back to my celiac dx from after about age 1, off the diet most of my life when docs back then decided it was pancreative digestive enzyme deficiency. Now, back on diet.came to post abt something abt me & saw your post & decided I MUST respond first. Ok, I pursued all other differential dxs for my neuro problem, including celiac, which I DO have but noy yet sure that caused my problem. Another dx, which I thought for sure I didn't have cuz 4 of my friends had it with rhe symptoms u describe & I didn't have those symptoms is pituitary tumor, almost always benign but can cause the symptoms u describe & can become very problematic. Two of my friends were treated with medicine & two decided to have it removed & one who had it removed is fine & totally normal, had kids, phd, is athletic, super normal great life. The other has an MD but suffers fatigue & some residual problems with her autonomic nervous system (similar to what I have but she's doing pretty well overall & travels all over & is married & has a great life). One who had medicine was told shed never have kids & she has beautiful normal kids, a phd, great job, husband, & wonderful life, but she does suffer more fatigue than I wish, but she has a super attitude (my former star doc student & she's satisfied with the outcome). The fourth on meds, is married, a hair stylist, has kids & is doing well last I heard (didn't know her as well but remember when she started lactating, got her dx, got married, had kids, etc). So far, they have not tested me cuz I'm not lactating, although two if my friebd's weren't. In fact, I'm sure if I went on the boards for my neuro disorder, I could find a whole bunch of ppl with it. I found a whole bunch (like maybe 30%) withgluten sensitivity or celiac. So, my other illness is rare & it's led me to learn more abt all kinds of things the research has yet to formally document but all the patients & clinicians know. Of course, I'm not at all suggesting u have my neuro problem. Most who have pituitary tumor (sorry that's such a scary word for what's realky a minor problem but needs tx) or celiac have no symptoms of my neuro dx. So don't get scared abt that. I don't think there's a connection between pituitary & celiac either, as this is first I've heard abt possibility of both but then I'm "new again to my first dx in life." so, I really don't know. I DO know for me, it seems gluten had justbabout ruined my life & I have a textbook case, with RA since age 9, GI issues since abt age 1, & now neuro. I haven't been able to work in 2 years cuz of my neuro issues...possibly all from gluten. So I guesss I wouldn't be Surprised if gluten the cause of what u r now experiencing. I'm not sure if u see endocrinologist (my first guess), neurologist, or gynecologist for the pituitary. Your pcp should know but if u need me to, I will find out from my MD pal who had it. She's super smart & really good friend. If u wAbt to write me privately, send me a pm & I'll give u my contact info. Don't get scared, but please check it out. I'll reread your email to make sure I didn't read your message wrong. I don't wAbt to scare u. Really, if it IS that, it's easy to cure. Like I said, all 4 of my friends are ok, and the one with residual problems has them cuz I think she had the genetic predisposition to our very rare neurological
Problem but even she is out have a great time in life..she just needs to rest more & her prognosis is to have a fully normal life Expectency & do quite well. She is much better than I am but they don't think mine is from a pit tumor (I actually wish it were). Ok, I'm gonna reread & make sure I didn't mess up telling u this. I'm kinda in the brain fog (to put it mildly) today. Ok, I'll wrote once more. Hugs!

[Neshema1]

Ok, reread. I still say push for MRI (u need a special kind to blow pics of the pit area up big enough to see..very small on regular brain MRI). I *think* it is possible to have normal prolactin levels and still have the tumor. I'd also see my gyne for sure & make sure to have mammogram. I'm
Guessing the gyne, Endo,& maybe neuro (that's who wanted me to get mine checked but my other docs don't know enough & the neuro wanted my cardiologist -ok, I'm way younger than I sound with all these docs..ugh! - to order it & those two docs got into a big argument over it..it was really dumb..too many cooks in the kitchen! So, I still have not had my scan & I really have no symptoms but neither did my friend, the MD, I think. It depends where the tumor is. However, now that I've scared u (I'm sorry!), I'd say my first trip might be to gyne, cuz discharge seems could be anything, especially hormonal. I don't know how old u r, but not sure that matters. Seems this gluten thing can mess up tons of stuff. My endocrine system & hormones are all out of whack. Is your vitamin D a problem? Mine is untraceable without D3 supplements. Rx D2 in mega doses doesn't even work. I know vit D deficiency can cause breast problems. No one knew why my D was so uncontrollable until an Endo at a big research Hosp said duh, it's her malabsorption! So I have about every defiency known to man (and woman)! And, those have led to all kinds of problems. So, my advice, for whatever it's worth, after untreated almost lifelong celiac that destroyed my health, stellar career, & just abt every aspect of my life, is leave no stone unturned if u have a symptom you KNOW is abnormal & fire your docs if they aren't willing to find the answers they would demand for themselves & their own family. U still can PM me. Not sure how much more I can help. But I'm willing to ask my MD friend her take on your case & what she would do. If I don't answer right away, I'm dealing with my health. Unfortunately, my own outlook isn't too good, but if I can help others, then it has served a good purpose. I'm on my iPhone now & not sure I can pm on this thing. If so, I'll pm u my contact info. Don't give up. I really think you need a doc to seriously check this out throroughly & then u can stop worrying. I am not saying to worry like OMG, it's sometging terrible, but u know if it's not normal & if it's not, then get it taken care of before u really have to worry. I let my celiac go too long & now it's causing serious problems. I listened to my GI doc over all the docs who asked me if I ever heard of celiac, which my mom swore I had cuz I lost wt as a baby until I was on the diet. My antibodies came back negative (ok they didn't have those tests when I was a baby, just diapers!), because now we know immunesuppresant drugs I took for RA causes false negative tests but my symptoms never went away (I decided this was normal for me) & I was a child-sized adult, with osteoporosis in late 20s (first they tested), & all kinds of signs of malnutrition despite all my efforts to gain wt. My hormones are a mess, even though I'm very regular except when my iron hits rock bottom. I have too much estrogen for a 20 yr old, and umm let's just say I'm not 20, just 29 AGAIN! u get the idea. So, pit tumor possible but who knows. I'd find out until I got a definite answer if I were u. Good luck! Hope this helped more than scared u. Honestly, I wouldn't be scared at all after what I've been through, but I wouldn't be complacent even if docs are...

[ruca55]

Neshema-
I appreciate your concern and advice. Mine (like everyone else's story here) is a long one. To cut it short. For me, looking back my main symptom was headaches like no other in my life that started after the birth of my second child. (was also my secon c-section). I spent 2 years being bounced around from doc to doc trying to find the cause of my headaches. In that time I did have an MRI done. Eventually I did see an endocrinologist who treated me with dosinex. It took a couple times and a couple of years of going on and off the dosinex, but all seems to be fine for now. I have just finished all my testing, which was negative. However I am 100% sure certain levels of gluten are the cause of my headaches. I believe the burden of pregnancy and surgery is what triggered a gluten "sensitivity" for me. I have many other symptoms that correlate with celiac, but I will call myself "gluten sensitive". Now I just need to learn to stick to the diet!

[Neshema1]

I hear ya! I'm sticking to it but it's initially making me worse unless it is making me more sensitive. Had a bite (i kean two pieces!) of cereal thought was my Gluten free stuff (but it wasnt) last night & omg, today was a GI disaster!

[Lori2]

I'm not a doctor; well I am but not a medical doc, a prof with strong background in neuropsych/physiology & a neurological problem myself, which led me back to my celiac dx from after about age 1, off the diet most of my life when docs back then decided it was pancreative digestive enzyme deficiency.

My son was diagnosed as celiac as a baby after two hospitalizations for dehydration. His doctor described it as your's did, a pancreatic enzyme deficiency. After two years on a banana, rice and lamb only diet, he "outgrew" it and has been eating gluten since. He is now doing testing to see if he actually is celiac or was misdiagnosed as an infant.