Hello Everyone

[Racheleona]

Hello Everyone, I had posted on here once before on my confusion of whether my test results showed that I was positive for Celiac Disease, well I had my Dr. visit with Jonathan Wright today (top notch doctor on celiac disease) and found out I do have low"gluten sensitivity" and do have to go gluten and dairy free for the rest of my life, which will hopefully bring back my menstration...which is a question I have for any of you, have any of you women had an absense of menstration due to celiac disease? As you all know this is very difficult for me, but hopefully will put a stop to my list of problems I have had for the past 6 years of my 19 year life.

Just wanted to say hello to the only people I have contact with that can sympathize with me : ) and I may be posting questions and suggestions for meals etc. ( I had difficulty when I did a trial gluten free diet with keeping my weight up, because I was getting sick of the foods I was eating)

[Alexolua]

Hello Racheleona.

I'm not exactly female, but if you have small intestines damage from the gluten intolerance, then your body could go without the nutrients it needs, which could cause you to lose your menstruation. Not an expert, but making an educated guess. =)

Though the above guess would be null and void if you've had small intestines biopsies taken that show no damage. But sounds like that wasn't done.

In absence of any other questions, I'll just add, that you should look around on the boards. You should find a lot of hopeful posts, especially in regards of foods to eat and ways to make sure you are gluten free.

I'm in your boat though, I have to cut out all dairy as well.. so that means more work, having to avoid too things. This website, gfcfdiet.com could help there too. It's a site about avoiding gluten and casein (A milk protein), so should find some helpful ideas there too.

Just wanted to say hello to the only people I have contact with that can sympathize with me

Most certainly can, and hi again! =D

[Guest Lindam]

Hi Racheleona, I can only say that I have experienced quite the opposite with my periods since going gluten free. I used to be only 2-3 days, now it's 10-12 and I am going crazy. My doctor has done a variety of tests and everything is "normal"

I sometimes wish I would not have it anymore.

Linda

[crc0622]

Yes, this is a byproduct of celiac disease, as well as infertility caused by not having regular cycles. Low weight alone can cause missed or absence of periods. You're about as normal as it gets around here.

[GEF]

Racheleona,

I'm so glad to hear that you have such a supportive doctor!! I might be the exception here in that I've never missed a cylce.... but, I have heard that that does occur in celiacs, along with fertility issues.

Welcome to the forum

Gretchen

[Racheleona]

Thank you everyone for your replies, I guess it does make sense that since I have been basically absorbing nothing, that I would not have my period, I really hope that I am not infertile though once I menstruate again ( I have not had a period for almost 2 years now) I really want children. Whats really odd though, is before I was losing all this weight I had periods so close like you Lindam, and had troubles keeping weight off, only a little over 2 years ago I got up to 145, and then intentianally started losing weight, but once I was to 125 stopped dieting, but continued losing weight down to 103 pounds within a couple months, and I actually have gotten to 111 but this seems to be where I am stuck. I really hope that gluten is my problem and I will fix all my problems through eliminating it, since the only thing my doc is going off of is the Ttg test which was one number higher than what is considered negative for gluten sensitivity, but all my symptoms that display celiac disease. If any of you guys had mental fog before going gluten free, has it gotten better? (Sorry I write so much! My friends aren't being very supportive in listening and understanding what I am going through)

[Alexolua]

Don't worry about typing a lot. This place is for being like a support group! So, share all ya need. =)

Umm.. I'm not sure I had much mental fog, hope I did.. felt kinda stupid at times. Not sure if that's happening now.. can't recall any recent moments of feeling stupid at least, LOL.

[GEF]

Umm.. I'm not sure I had much mental fog, hope I did.. felt kinda stupid at times. Not sure if that's happening now.. can't recall any recent moments of feeling stupid at least, LOL.

Besides the abdominal issues, this is what sent me to the doctor. Even more than the health issues had been tasking me, it was the loss of satisfaction I was finding in my job. It's certainly not a good feeling when you're trying to give your all and it's just not happening due to the absent feeling. Of all the symptoms, this one of the least favorite on my list.

Gretchen

[burdee]

Racheleona: Back to your original question about amenorrhea and infertility ... When I was 17 I had a long stretch of almost a year, when my periods disappeared for no apparent reason (after 6 years of regular cycles). It returned on the day of my appt. with an ob/gyn to figure out what happened. His guess was I 'had a lazy pituitary gland' (how's that for medical mumbo jumbo? ) and he would put me on birth control pills to 'straighten out my period' a few months before I wanted to get married. OK, I went back 4 months before my wedding (4 years later) and did the b/c thing. However, everytime I went off the b/c pills I never got my periods till I went back on. Finally after all the scare stories about b/c pills (after 10 years on the pill), I went off. I didn't get another period for 10 more years. Also I never had any accidental OR intentional pregnancies. My period later returned about 5-7 years before I started periomenopause. I stayed very regular until menopause and 'paused' at age 50. I heard ALL the reasons for amenorrhea (low weight, stress, exercise, bad eating habits, etc.) EXCEPT celiac for which I was finally diagnosed at age 57. The other 'reasons' were pretty illogical, because when my periods came back spontaneously for 5-7 years I was still experiencing low weight and all the rest. I believe undiagnosd celiac disease affected my period more than anything else. So going Gluten Free ASAP seems like the best solution.

BURDEE

[CoolCat1]

I definitely agree that Celiac Disease does strange things to your menstrual cycle. When I was 19 I started missing my period for months and was told to go on a light birth control pill. At age 52, I suddenly stopped having my periods and thought it was menopause. In the meantime I found out consequently that I was anemic for about 7 months. After I was given 13 iron injections I started having my periods and now even though I tried taking a birth control pill to regulate them they are just awful. My last period was 10 days. I only found out about being Celiac back in July and started the gluten-free diet. I still have trouble with these periods. I don't think I am in menopause. Yuk! On the bright side, when I was in my 30's I stopped the birth control pill and 3 months later I was pregnant. So, Racheleona, don't worry. I'm sure things will be better for you.

[Racheleona]

hi Coolcat, wow the iron injectios started your periods again??? My doctor hasn't mentioned that, the other doctor that I left due to frustration put me on light birth control for 2 months and I did menstruate. Before that she kept telling me to gain weight (previous to losing my periods I weighed 40 lbs. more! I got down to 100 lbs in 5 months) and she believed this was why. I actually gained 10 lbs after that, and no period for a year. The doctor I am seeing now believes I will get them back after being gluten free, but meanwhile he is giving me natural hormones, and also testing me for antibodies in my ovaries or something? I can't remember exactly what it was, but he said something about some women having antibodies attacking their ovaries. I am getting worried about being fertile (I'm 19 right now and don't plan on having children for a while) but, it's been 2 years since I have had a non induced period...thanks for your encouragement though!

[Alexolua]

I am getting worried about being fertile

One of the best things you can do to help your body heal, is to try not to worry. Adds more stress. I know it is a concern, but try to give it the wait and see attitude. Hopefully you will still be fertile. =)

On a side note.. am I the only male not scared off by a thread mostly about periods? LOL

[SharonF]

Hello!

I'm newly diagnosed, so I'm sure I don't have as much to say as others yet, but I wanted to let you know that I'm pretty sure I've had celiac for a while (based on some symptoms that have come and gone, like diarrhea for months at a time), and I still managed to have two healthy pregnancies.

[tarnalberry]

the research I've read all suggests that any infertility caused by celiac is very likely to only be temporary, and you won't have a the same problems conceiving and maintaining a pregnancy once you're gluten-free as you might have if you weren't gluten-free. it sounds like your body fat got REALLY low, if you lost that much fat, and very low body fat is a cause of ammenohrrea (sp?) because of low estrogen.

[Racheleona]

Tiffany, my tests for my hormones did show that I was VERY low, my doctor said if he hadn't looked at my age he would've thought I was an older woman going through menopause. He is now giving me natural hormones (progesterone, testosterone, T-estrogen) to get my levels up, and hopefully bring a period. So low body fat causes low estrogen? Or celiac disease causes low estrogen? I'm confused with the whole hormone thing . Also, off subject but my doctor told me to not even eat millet, sorguhm, arrowroot etc. because they do contain gluten, but elsewhere I read different, what are your guys thoughts?

Rachel

[tarnalberry]

The deal with body fat and estrogen is that body fat _produces_ some of the estrogen in the body, and it also stores estrogen. (Obese women may have a problem with TOO MUCH estrogen.) The fact that all the rest of your hormone levels were low may be indicative of other problems (thyroid? I'm not really sure), though.

The millet/sorguhm/arrowroot issue... It depends on where he got his information. *Technically* ALL grain contains gluten. Corn has gluten, wheat has gluten, oats have gluten, etc. The thing is, the word "gluten" here is overloaded. *Technically* "gluten" means the protein found in any grain. The proteins, "glutens", found in each grain, however, are slightly structurally different. We usually use it only in reference to the particular proteins that we, celiacs, react to. So if he meant that gluten in that sense, he's correct, but irrelevant. :-)

As for whether or not they contain offending proteins... The general, updated, consensus is that these particular grains are too far removed. To address the issue specifically, arrowroot is not actually a grain, it's a rhizome (like ginger). Buckwheat also isn't actually a grain, but a fruit. Sorghum is a grain - it's a seed - but is closely related to corn, not wheat. Millet is also a grass, like wheat, but is very distantly related to wheat and doesn't appear to contain the offending protein sequences. Amaranth is the same. Years ago, it was thought that these grains contained offending gluten, and it's true that doing more testing would be nice, but botantical hierarchy strongly suggests that these grains are much too far removed from wheat to cause problems for celiacs. (And a number of us eat these without any problems.)