Woman Troubles

[carynanne]

Hello! I am a 27yr old F with issues. I have always been very thin and wiry, and I did not start my period until I was 16. It's been irregular ever since, and I go anywhere from 2 months to 1 1/2 years between menses. I was diagnosed 2 years ago with Polycystic Ovary Syndrome, but that diagnosis doesn't sit well with me: true, I had cysts on my ovaries and was not ovulating regularly, but that disorder has no known cause and most people who have it are obese and have skin and hair irregularities (hirsutism and acne problems), neither of which I have ever had. Around the same time I started taking my temperatures to determine ovulation patterns, in January of 2003, I started noticing a trend of diarrhea and constipation that was linked to menstrual cycle: from day one of my period until I ovulate, or for approximately 2 to 6 months, I have diarrhea every morning, like clockwork. Then, when I ovulate, for the next 2 weeks I am constipated and bloated. I got pregnant (using progesterone cyclically) in Oct of 2004 and gave birth in July of 05, and for the entire pregnancy and first six months postpartum I had constipation or normal stool: no diarrhea. Then six months after my daughter was born I had my first period and my symptoms started up exactly as they had been before. Very frustrating.

I found out recently that my grandfather had celiac, though no one else in my family has ever been tested. My mom's side of the family is riddled with stomach and pancreas disorders (my mom and my sister both had their gallbladders out last year within months of each other) and very bad reflux problems. Mom is 50 and falling apart. She has already had breast cancer.

All that to say this: I believe all my symptoms are related, and everything I have is symptomatic of celiac disease. Should I get tested? Has anyone else ever heard of a link between menstrual irregularities and gastrointestinal disorders? All the body systems are interrelated on some level, right? If I corrected my diet (assuming I test positive for celiac) would my menstrual irregularities likely go away, or will I always have to go on drugs to get pregnant?

Anything you know or have heard would be wonderful.

Caryn

[CarlaB]

If you are underweight your menstrual irregularities are likely caused by too little body fat. It's a normal amennorhea that runners, anorexics, and even celiacs can get because estrogen is fat soluble. It's also normal for obese to get amennorhea as well.

So, if you are gluten intolerant and that is why your weight is low, I would say there is a very high chance that the two are connected.

[Ursa Major]

Hi Caryn, and welcome to this board. It sure sounds like you may have celiac disease, especially with your family history. All the diarrhea, late onset of menstruation and then menstruating only intermittently are signs of malnutrition, and of course, celiac disease causes that.

I encourage you to get tested for celiac disease. But even if those test results are negative, you should still try a gluten-free diet to see if it helps (after testing if you want an official diagnosis, otherwise no need to wait).

I've heard of cases of people who were infertile for many years, who got pregnant within months of eliminating gluten (some of those people are members here).

[carynanne]

Hi Caryn, and welcome to this board. It sure sounds like you may have celiac disease, especially with your family history. All the diarrhea, late onset of menstruation and then menstruating only intermittently are signs of malnutrition, and of course, celiac disease causes that.

I encourage you to get tested for celiac disease. But even if those test results are negative, you should still try a gluten-free diet to see if it helps (after testing if you want an official diagnosis, otherwise no need to wait).

I've heard of cases of people who were infertile for many years, who got pregnant within months of eliminating gluten (some of those people are members here).

The main reason I would want to get a diagnosis would be to prove to my family, who all suffer from one malady or another that are possibly related to malnutrition, that celiac is a possibility for them, too. My sister has an seizure disorder that started when she went off to college, and has progressively gotten worse. Epilepsy does not run in our family, and I am convinced it may be gluten sensitivity that causes her seizures. In fact, a doctor told my mother that she had a sensitivity to gluten when she was a kid. The problem is that she can't remember the exact wording from the doctor, and my sister would rather let her insurance company pay $500 per month for anti-seizure medication than try to get a diagnosis of celiac disease, after which she would not be able to eat her favorite fods, bread and pasta. If I have it, maybe I can persuade my sister and mom to get tested and go gluten-free.

[CarlaB]

You do not have to give up pasta!! Tinkyada makes the best gluten-free pasta, in all shapes and sizes!! No one realizes it's gluten-free!

I understand wanting to get tested so your family knows they have a chance of having it, too. However, don't get disappointed if they still don't see the value in it. None of my family, except for some of my children, has seen the need even though it seems obvious to me that they have it. Even my grandma thinks they should be tested. I hope you have better luck in that regard than I did!

[dionnek]

I've had menstrual problems all my life and was dx with PCOS about 4 years ago when I was trying to get pregnant. Long story short, I went through 2 rounds of progestin and clomid and finally had a period after 14 months, had my baby, and 2 years later still no period! Just dx with celiac this April, so not sure if going gluten-free will help that or not. So far I have not gotten any relief from my symptoms, even though I have thouroughly checked my meds, shampoos, etc. for gluten. So, I would recommend that you get tested (go to a GI doc though - regular docs don't seem to know how to test for it). And, if/when you do go gluten-free, don't give up - it takes time (from what I'm told anyway)

[megzmc3611]

Caryn,

I am 32 years old, diagnosed 2.5 years ago with celiac disease. Prior to being diagnosed I was very thin and missed my period for about a year. I exercised quite a bit (ran about an hour or more seven days a week on a treadmill). Thinking back, I also think celiac had something to do with my low weight and my missed periods. At the time though, I had no diagnosis of celiac and my doctor assumed the exercise was the cause of the missed periods. Because of this she gave me a bone density test. I had osteopenia at 28 years old! So I am telling you that yes, I think your missed periods could be caused by both celiac and your low weight. I would definitely get tested for celiac. It is a simple blood test and with your family history of celiac, your doctor should be willing to do the test. I would also look into getting a bone density test. If you have weakened bones it is essential for you to get on some kind of bone-building plan/diet (vitamins, calcium rich foods in your diet, weight-bearing exercise, etc.). Lack of estrogen in your body can weaken your bones...so please keep that in mind! Good luck....

[carynanne]

If you are underweight your menstrual irregularities are likely caused by too little body fat. It's a normal amennorhea that runners, anorexics, and even celiacs can get because estrogen is fat soluble. It's also normal for obese to get amennorhea as well.

So, if you are gluten intolerant and that is why your weight is low, I would say there is a very high chance that the two are connected.

I do have to say that while I was in college I gained my freshman 15 and kept it on till I graduated, then lost it all plus about 10 pounds right after graduation. Even during that time I had very irregular menses. Go figure.

Caryn

[CarlaB]

Some are so thin even 15 pounds won't make a difference ... but I know what you mean, I am almost 25 pounds less than my heaviest in college ...

[carynanne]

Some are so thin even 15 pounds won't make a difference ... but I know what you mean, I am almost 25 pounds less than my heaviest in college ...

It has been 5 or 6 days since my last post here, and I just wanted to tell you that I have made an appointment with a gastroenterologist to be tested, but here's what's interesting: Ursula mentioned that amenorrhea is a sign of malnutrition. I hadn't considered that, for some reason. I didn't want to experiment with a gluten-free diet because I want accurate lab results, but I wanted to counter the possible effects of malnutrition, so I started taking twice the normal dose of my prenatal vitamins (I take prenatals because up till last month I was breastfeeding, and because I don't use protection there's always the off chance I could get pregnant) and about 24 hours later, I had no more diarrhea. And I haven't had any in several days, since Friday, in fact. The fact that the prenatals appear to have curbed my diarrhea makes me believe even further that I have at the least some sort of malabsorption problem. I am just antsy now to be tested and find out for sure how to change my diet.

I still haven't ovulated, though.

Caryn

[Guest AutumnE]

I have pcos, my sister and my mom does. I am very obese and my sister and my mom are stick thin. We all had the lh 3:1 fsh ratio in bloodwork to confirm. Im the only one with insulin resistance and none of us have acne or hair problems.

Infertility is our only symptom besides my insulin resistance. After I had my daughter my periods were great every month and ovulation was right on target. When my celiac disease became at its strongest my period went away. Now that I have been gluten free since the end of may my period finally came and I ovulated again. I know I do have pcos due to the bloodwork ratio but I think celiac disease had a huge part in it also. I am losing weight so Im not sure if it has a factor in it and also my carbs are naturally lower.

Did you have bloodwork done to test a ratio? If not it may not be pcos since cysts on the ovaries are just from not ovulating and may have been from malnutrition. Good luck with your answers you are seeking.

Also I was told by the good people of this board that you will not absorb vitamins if you are still being glutened and having damage. I would not suggest taking two prenatal vitamins. If you are not vitamin deficient ( Im not even with diarrhea for years) you could be getting too many fat soluble vitamins and they can be toxic for you in large amounts.

[Michi8]

It has been 5 or 6 days since my last post here, and I just wanted to tell you that I have made an appointment with a gastroenterologist to be tested, but here's what's interesting: Ursula mentioned that amenorrhea is a sign of malnutrition. I hadn't considered that, for some reason. I didn't want to experiment with a gluten-free diet because I want accurate lab results, but I wanted to counter the possible effects of malnutrition, so I started taking twice the normal dose of my prenatal vitamins (I take prenatals because up till last month I was breastfeeding, and because I don't use protection there's always the off chance I could get pregnant) and about 24 hours later, I had no more diarrhea. And I haven't had any in several days, since Friday, in fact. The fact that the prenatals appear to have curbed my diarrhea makes me believe even further that I have at the least some sort of malabsorption problem. I am just antsy now to be tested and find out for sure how to change my diet.

I still haven't ovulated, though.

Caryn

Do your prenatals have iron in them? Iron can be very constipating, and could make the difference with diarrhea...and you don't necessarily want to trade one issue for the other. Also, be careful with taking a double dose of vitamins, as some vitamins can be harmful in larger doses.

Michelle

[haphenomenon]

hello,

I also have had recent history of menstrual irregularities but only since going gluten free! I am a normal body weight actually always been bigger than average. Had normal periods until I started detoxing heavily and reduced calories and protein trying to "heal my intestines" I stopped menstruating for over 7 months and as soon as I began eating more calories, and gaining weight my periods returned. I recently accidentally poisoned myself with a substance used to wash vegetables, potassium permanganate. I had not washed it off well enough and suffered extreme gastrointestinal damage, vomiting diarea etc. The chemical is said to cause intestinal burning or stripping. I had what felt like a celiac remission with all of the same symptoms I haven't had in a long time: three weeks of nausea, diarrea, undigested food, light colored stools, intestinal cramps and gas etc .

It comes as no surprise that my period is now not arriving on the "schedule" it has been keeping lately, which coincidentally is very short 21 days, whereas before it was almost 35...

It is my theory that when my intestines are damaged and I subsequently have malabsorption my menstruation stops, perhaps in an effort to conserve vitamins and minersl. I'm not sure.

But I do know that there are honestly no other reasons for me to have menstrual difficulties. I spent a long time trying to figure out why my menstruation was so wacky. Finally I found a lot of research linking celiac with abnormal menstruation and missed periods. I think everything IS linked and part of the whole problem of celiac disease, it really affects everything.

Caryanne, you should at least tries to avoid gluten in your diet even without a positive blood test. It can be really hard to diagnose celiac with doctors tests. Many GIs are really uniformed about celiac. Enterolabs is a great company that does testing not just for celiac but other gastrointestinal complaints as well. They have a reduced rate for family members that test together!

(what does pcos stand for?)

[J-Lo]

Oh wow thank you for your posts!

I thought so far all my life that I have been messed up. I was late menstruating at the age of 16. Entering the 9th grade I barley topped 95 pounds. I have always thought something was wrong with me. My goal in high school was to gain weight and finally I got my period and ever since then it had never been regular. For about one year in my life I was regular every 21 days but that was so often and heavy! I was in college at that point in my life and discovered that certain foods were making me constipated then a few days later I would have the opposite. I was like clock works and I didn't mind the constipation it was not that bad but I was getting my period but then it went away Not sure what to do I went to my doctor and got on the pill but was on and off of it for about 2.5 years. I didn't like having to relay on a pill to get my period. Once I stopped taking it I lost some weight and then didn't get my period for 5 months so I went ot my doctor and she gave me a hormone that would make me get my period and I finally got it but didn't get it again so she prescribe BC again. Although I am not dating or married I do want children some day. I am now 25 and 5 feet 5 inches and very in wait often from 109 -115. I can predict my weight according to how I feel and it is strange. When I feel irritable and bad I am heavier, when I feel good and wanting to go out and see people I weigh less. This has put a huge damper on my social life, dating, and me emotionally. I have been tested for celiac but it came back negitive because I was wheat free for 6 months. I know that Gluten affects me severely after being wheat free for about a year and a half and now gluten free for about a month (but have unknowingly eatian something and felt bad for a few days). Dose anyone know if I will become regular or even get my period? I had blood work done for my position at work and I found out I am anemic could that have something to do with the missed and Very Irregular periods? I would realy like to have children some day if I ever find the right guy Thank You

[momxyz]

I am no expert - all I can tell you is that my daughter had primary amennorhea. (along with issues of constipation) At almost 17 she was seen by an endocrinologist, and give hormones to start a period. The hormones totally messed her up...making a long story short she has been gluten free since July and has had two periods in a row, right on time.