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For Women Only (please)
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Hi All, I need to ask a very personal question, because I am hoping I am not the only one that gets sicker when our 'friend" comes. Every month about 2-3 days prior to my period coming I am sicker than a dog. My periods are now lasting a lot longer since being diagnosed, are very heavy and I am normally sick during it. I have gone to see my gyne about this and she has put me on hormones and cannot understand why all of a sudden things have gotten worse. One thing she did say to me is that celiac disease plays havoc on your immune system as well as your period.

So if anyone would like to share any ideas, suggestions.... etc. I would certainly appreciate any input.

Thank You,

Linda <_<

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My periods have always been a monster. Lasting 6-7 days, heavy flow - especially the first 3, cramps that have sent me to bed, and PMS like mad! I have only been gluten-free for 2 months, but since this time my periods have been worse, if that is possible! lol...I just got one saturday and I was sick that day, in fact I stayed home from church which never happens. I noticed I bled like crazy too for the first 2 days - more than usual (I went through more pads/tampons than usual - I had to hit the store again). I hope this isn't too much discription, but I thought I should share.

Deanna

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I've always gotten bad cramps, though less so on hormones (and I really can't tolerate them any more, so I haven't been on them in nearly two years). I haven't notice it change when being gluten-free or not, but it does appear (based on my charting) that gluten accidents delay ovulation for me. Wacky.

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My cramps had increasingly gotten worse, so I had my gynecologist put me on birth control. They're still there, but less severe. I, at first, thought maybe my stomach problems were due to my period. But, I think our stomachs may just be more sensitive during this time, because I'm sure it lowers our immune system. That's my opinion, anyways.

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Mine have totally got me stumped. First one on gluten-free diet was heavier than most and early. Second was almost non-existant. Third hasn't come at all! I'm 54 and haven't had any signs of menopause. Maybe Celiac kept it at bay and finally now it's come? I am at a loss and don't know what to think! If it is menopause. bring it on! Just no symptons like night sweats and hot flashes and weight gain please.

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I can't tell you much about going gluten-free and periods cause I had a hysterectomy at age 33 I'm now 47, due to having a constant beelding problem. after surgery I found out I had Adenomyosis. I always had long heavy periods with lots of cramps, clots, leg and hip pain. I thought it was normal for a period to last 8 to10 days as a teenager. Only after I got older did I realize it wasn't. I took BC pills for several years and It helped with the the heavy flow but not the cramps. After my surgery I didn't have to take hormons since they left an overy. now I get the hot flashes ( probably into menopause now) I refuse to take hormones since there is a big history of cancer in my family. I take soy pills and I can tolarate them. I think this is just another clue to Celiacs. Just seems the varied internal problems go on & on. <_<

Deb

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Yes! I get sick EVERY month.. I feel like i'm coming down w/ a cold or flu and am soooo tired on top of having bad cramps and heavy/long periods. I have gone to many gynos and they put me on Birth COntrol (which makes me absolutely sick,) and hormones.. nothing works.. i thought it was just me.

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I was just diagnosed with celiac. Back in May I had an endometrial ablation to stop my bleeding. I had been bleeding for over a year straight and it wasnt light. It was niagra falls daily. After my surgery I noticed that a couple days before my period I would get so sick. I would be out of work at least 2 days. I would shake real bad, just felt aweful. When I went in after 3 months my dr couldnt believe I was still have a monthly period that lasted 7-10 days. Then I told him I had celiac and he just looked at me and said he was sorry. We talked about hormones but both decided to wait until I got going on the diet. He said that celiac affects your organs so weird. he also said that might have been my problem from the get go. So, I have been gluten-free for about 2 wks now and my next cycle is coming around so we will see what effect it has on my body. I know how it feels. It stinks

christ

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maybe you'll feel better the longer you are gluten-free

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<_< Hi everyone, I would like to thank all that have answered my question. I am so glad that I am not the only one that is having problems. My doctor gave me these hormones to stop the bleeding, but what about all of the other symptoms? Those are the ones that I can not handle. I was so sick this morning I didn't think I was going to make it into work. I can't take the pill because of my age (I'm 41).

So I am waiting for the results to my ultrasound, hopefully I'll hear today. Hope all is well with that.

All... Have a great day and a wonderful week!

Linda

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Hi - I, too, have had cycle problems and gastro problems that seem to go together. I had my uterus removed (kept ovaries) in Sept 03. I was diagnosed with Celiac in April 04 and have been gluten-free since then. Since my ovaries still cycle, I still get worse gastro symptoms around the PMS/cycle time, although I do feel a lot better physically with no bleeding. It is very frustrating that going gluten-free doesn't solve everything and it sounds like this is a common occurence for those of us with Celiac. Best of luck to everyone!!

Lisa in NC

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I guess I'm the weirdo here. I have barely any period. I'm on the pill - have been for 18 years - and have had low hemoglobin and taken iron also for the same length of time, sometimes I've been taking iron as much as three times a day. I've had two periods since going gluten-free and haven't noticed any difference except they may be even lighter than before. I only use a pantyliner. (I know - don't all hate me!) Maybe it's not having enough blood to spare! :blink:

BTW - I am in three forums for Celiac and this one is the funniest about the gross descriptions of things. The other two are SO careful about every little "BM" or whatever - this one cracks me up how descriptive and open everything is. Kind of refreshing, actually. We have all been through so much. I remember when I first went to the doc with this problem, I was so embarrassed - now I'm telling people about it in the grocery store! :lol:

Celeste

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BTW - I am in three forums for Celiac and this one is the funniest about the gross descriptions of things. The other two are SO careful about every little "BM" or whatever - this one cracks me up how descriptive and open everything is. Kind of refreshing, actually. We have all been through so much. I remember when I first went to the doc with this problem, I was so embarrassed - now I'm telling people about it in the grocery store! :lol:

I love that about this place too... that we can talk. The more afraid we are to talk about things, the more of a risk that we won't talk when we need to and possibly put ourselves in a harmful health situation. There's no harm in being real (with tact) :D

Gretchen

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I just came back from my gyno as I was having hot flashes, etc thinking I was getting close to "THE change". She put me on "continuous hormone therapy". I use a Nuvaring (a hormone ring you insert and leave for 3 weeks). After three weeks I use another and again the next 3 weeks. Then I remove for a week and use an estrogen patch until I use another ring. She said I need to keep my hormone levels constant and with Celiac it might be better for me not to have so many periods anyway. With this method I will only have 4 a year. Has anyone else tried this? She said they actually tried it in the 60's and 70's but women would not do it because they did not feel right about skipping periods. Also since the rings hormones go directly to the uterus and not in the blood stream it doesn't have the same side effects as the pill.

Anyway I thought I would share this info!

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<_< Hi Janine, Thanks you for your input. Mt doctor put me on a hormone pill that was great, no more bleeding, however I was feeling very sick with it. So I will ask her about the ring, and see if that is something I can use.

Celeste,

I agree with you. This forum is great. If it wasn't for this forum and people speaking more candidly, I don't think any of us would feel as free to talk how we want (again with tact).

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I had terrible problems with heavy flow, lots of pain, dizzyness, mood swings, you name it - and for a few months I was getting my period every two weeks and was put on hormone therapy.

Someone suggested a hormone IUD (Mirena) and although it is fairly painful to insert and you can have continuous spotting for weeks after insertion, the end result is usually period-free 5 years! I certainly haven't had periods since it was put in and although I still get some of the hormonal cycle symptoms, they are a mere fraction of what I used to go through and there is no pain.

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Hi my name is Kathleen. I don't know if I am in the right area of the forum, but I need to find out some information. I too have mentrual problems. I have heavy bleeding and always have and they last 5 to 7 days. I am 45 now and going through menopause, I think. I get the the hot flashes from hell. I get a severe headache the first day of every period. I mean the put you to bed for the day type of headache. I have never had menstrual cramps or back aches, but have severe PMS. You can not live with me for the first day or so. I also have been diagnosed with SLE (Systemic Lupus Erythmetosis) in 1997. My Lupus doctor told me that Hormones are definitely out of the question. They could send me into a severe Lupus Flare. What I am wondering is do Lupus and celiac disease ever go hand in hand? I am being tested for celiac disease, because my twin sister has celiac disease and I have a lot of the symptoms of it. If anyone has any answers could they please post and talk with me about this?

Thanks

Kathleen W.

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Yes, celiac disease and most other autoimmune diseases are connected. I can't say if going gluten-free will relieve symptoms either from the lupus or the menopause, but there's certainly a chance of it.

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Hi, all!

I am cursed, too, with a very heavy period, that lasts about 5-6 days on average. I have had Celiac's since 1995. I also get the mood swings, but I don't suffer from the bad cramping anymore. I think this occured, because I just gave birth to my 3rd child in May. I thought I was alone with the agony, but I guess I'm not. Do the hormones or birth control really work? Let me know.

Vicki :)

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Hi Vicki,

Thanks for your reply. I have heard that hormone pills do work, but they are not an option for me at all. I asked my Rheumatologist if I could try them, because my Sister-in-law is using them and they help with the hot flashes and he said absolutely not. He shot it down quick, fast, and in a hurry like, because he told me it will put me into a severe Lupus Flare. Oh well. If you don't have Lupus, ask your doctor about it.

Kathleen

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WOW! That is interesting to read because I haven't been diagnosed with celiac disease yet but we are testing our son and will get the biopsy back on Tues, he had + TTG blood tests.

I have always had horrible periods. I get sick as a dog, migrains, diarhea, vomiting sometimes... Heavy bleeding and cramps... I have been diagnosed with endometriosis and uterine fibroids and ovarian cysts... all have been diagnosed by surgery or mri/ultrasound. I just figured it was my luck, but since we have been reading and learning about celiac disease I have wondered if all my problems are related to it and I am a carrieer...

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    • So far I've had no problems with gluten-free Cherrios and I've been eating them since they started producing the gluten-free line. Generally I will have some reaction to gluten if there is contamination in the product I'm eating. But I'm sure someone has gotten a bad batch or is simply very sensitive to trace amounts of gluten. It's up to each individual to decide whether you want to chance trying them. The article mentioned by squirmingitch sheds light on the problem with anything listed as gluten-free. Contamination can occur at any point in the harvest or processing, and testing may miss it. I also eat Chex, Nature's Path cereals and have tried other brands w/o any problems. I do miss gluten-free Rice Krispies, they made for a nice addition to meat loaf, shame they discontinued the item.
    • Here is another point.  My hubby went gluten-free per the poor advice of his GP and my allergist.  It worked.  A tough first year, but he got well.  Thirteen years later, I got diagnosed with celiac disease.  I was shocked!  😱.   Does he have celiac disease?  We will never know because we can not afford to have him do a challenge.  He refuses and I can not blame him.  He knows he will be very sick!   The point?  I am so lucky that we both can not have gluten.  I never worry about him making me sick or vice versa. We made the house completely gluten free for  1) our health and 2) the fact that our kid started helping in the kitchen. Kids make mistakes and I personally need a safe haven.  She wants gluten?  I buy prepackaged stuff and she takes it to school.  All parties and events at my house are gluten free.  Lots of work, but we stay healthy.  She does not have celiac disease.  When she is preparing for a celiac test,  I send her on the porch to eat cookies or bread or whatever floats her boat.  We travel in a gluten-free RV.  I have five sizes of ice chests.  We just have to be prepared for any event.   How can we live this way?   We love feeling good.
    • Freize is right, you need to think about your environment.   Based on that a study I posted for you, you will note that the patients who were diagnosed with refractory celiac disease and THOUGHT they were diet compliant found that they WERE NOT diet compliant.  How is this possible?   This is way out there, but unless you are growing all your own food, you don't really know if it is gluten free.  In the US, we do have laws to help protect our food supplies (no perfect, but a start).    I can not speak for India.  For example, what about your soy?  It can be contaminated by the farmer as it is often rotated with wheat.  Here is an article by Jane Anderson who has celiac disease.  She is very strict as she has DH (celiac rash), but she cites Trisha Thompson who tests foods for gluton contamination, The gluten-free WatchDog (like Consumer reports).  She found that soy which is naturally gluten free, but can be cross contaminated by wheat: https://www.verywell.com/is-soy-gluten-free-562371 so, start thinking about your food supply. As far as a negative TTG IGA or TTG IGG?  I test negative to both.  Only the DGP IGA has ever been elevated in my blood tests (even repeats), yet I had a Marsh Stage IIIIB on my biopsy.  Have you had a DGP IGG?  (I do not see this in your posting).   http://www.cureceliacdisease.org/screening/ These additonal celiac tests might help you feel confident that you have celiac disease and not something else that is damaging your villi.  But remember, some  folks have celiac disease even with negative blood.  I am not IGA deficient, so this is an area I have not researched.  Not to mention that some celiac researchers do not think that the celiac  antibodies tests are good for diet compliancy.   I wish I had better answers for you.  Try a grain free, whole foods diet of meats, fish, eggs, and vegetables for a while.  All food prepared by you. Who cooks your food now?  Is your home gluten free?  Cross contamination at home?  Kissing a loved one.  We had a doctor with celiac disease who was getting glutened by her little children who were consuming gluten!  
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