Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

For Women Only (please)


Guest Lindam

Recommended Posts

Guest Lindam

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 <_<


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Niteyx13 Explorer

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

tarnalberry Community Regular

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.

cynicaltomorrow Contributor

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.

terri Contributor

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.

deb Apprentice

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

kvandorselaer Rookie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



cdobbs Rookie

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

Thomas Apprentice

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

Guest Lindam

<_< 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

lisa922 Apprentice

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

crc0622 Apprentice

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

GEF Explorer
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

j9n Contributor

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!

Guest Lindam

<_< 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).

Guest Nukapai

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.

Kathy-W Newbie

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.

tarnalberry Community Regular

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.

Queen Serenity Newbie

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 :)

Kathy-W Newbie

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

rgeelan Apprentice

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...

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,311
    • Most Online (within 30 mins)
      7,748

    SWilson
    Newest Member
    SWilson
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
    • Cathijean90
      I’ve just learned that I had been diagnosed with celiac and didn’t even know. I found it on paperwork from 15 years ago. No idea how this was missed by every doctor I’ve seen after the fact. I’m sitting here in tears because I have really awful symptoms that have been pushed off for years onto other medical conditions. My teeth are now ruined from vomiting, I have horrible rashes on my hands, I’ve lost a lot of weight, I’m always in pain, I haven’t had a period in about 8-9 months. I’m so scared. I have children and I saw it can cause cancer, infertility, heart and liver problems😭 I’ve been in my room crying for the last 20minutes praying. This going untreated for so long has me feeling like I’m ruined and it’s going to take me away from my babies. I found this site googling and I don’t know really what has me posting this besides wanting to hear from others that went a long time with symptoms but still didn’t know to quit gluten. I’m quitting today, I won’t touch gluten ever again and I’m making an appointment somewhere to get checked for everything that could be damaged. Is this an automatic sentence for cancer and heart/liver damage after all these symptoms and years? Is there still a good chance that quitting gluten and being proactive from here on out that I’ll be okay? That I could still heal myself and possibly have more children? Has anyone had it left untreated for this amount of time and not had cancer, heart, fertility issues or liver problems that couldn’t be fixed? I’m sure I sound insane but my anxiety is through the roof. I don’t wanna die 😭 I don’t want something taking me from my babies. I’d gladly take anyone’s advice or hear your story of how long you had it before being diagnosed and if you’re still okay? 
    • trents
      Genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out and also to establish the potential to develop celiac disease. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop it. To develop celiac disease when you have the genetic potential also requires some kind of trigger to turn the latent genes "on", as it were. The trigger can be a lot of things and is the big mystery component of the celiac disease puzzle at this point in time with regard to the state of our knowledge.  Your IGA serum score would seem to indicate you are not IGA deficient and your tTG-IGA score looks to be in the normal range but in the future please include the reference ranges for negative vs. positive because different labs used different reference ranges. There is no industry standard.
    • Scott Adams
      Since nearly 40% of the population have the genes for celiac disease, but only ~1% end up getting it, a genetic test will only tell you that it is possible that you could one day get celiac disease, it would not be able to tell whether you currently have it or not.
    • KDeL
      so much to it.  the genetic testing will help if i don’t have it right? If theres no gene found then I definitely don’t have celiac?  I guess genetic testing, plus ruling out h.pylori, plus gluten challenge will be a good way to confirm yes or no for celiac. 
×
×
  • Create New...