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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Symptoms Worse With Menstrual Cycle?
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15 posts in this topic

I am undiagnosed, Celiac is just a suspicion.

My main symptom for nearly 2 years is NAUSEA. Keep-me-in-bed-nausea. The timing of when this started (quite suddenly) and when it worsened (the week of my period) led me to my OB-GYN. Clueless, he threw me on "the pill" (isn't that what OBGYN's do best?) and amazingly my symptoms got better. Until the "week off", then nausea returned. Went down the endometriosis route, but that has been eliminated recently via laparoscope. I have been on hormone/pill without interruption for over six months, and symptoms are quite good.

Post-op follow up with OBGYN, I mentioned that my only recourse now was to go back on "South Beach" since that's the only time I felt better. She then mentioned the possibility of Celiac Disease. (I've had lifetime constipation issues, never D). Going for consult with GI in September, but in the meantime I went back on SB. Funny thing, but I had symptoms go away that I didn't even realize I had, like abdominal bloating, a painful feeling in my gut (dull ache, not sharp) and much of the constipation. I also have major anxiety issues, as well as insomnia. Didn't know THOSE were related until tonight! Had some salad dressing and was sick as a dog - worse than before. Now I've printed out the list of foods to avoid and will be going Gluten-Free (oh, I need some MAJOR willpower for this!) as soon as I can.

So, my question is - does the symptoms being LESS on "the pill" make ANY sense to you whatsoever? Have you had this experience? Or is the hormone simply a calming effect on the swelling and therefore reducing my nausea, not really affecting the C as well?

I think I am ready to spend $$ for Endolab, I don't want to wait until Fall for consult, then more time for testing, more for results.

Could you also tell me how much Endolab costs?

I had a really bad day today (two family parties, lots of unknown food) and I've had enough. I want answers, and I want to get off this pill - it's got lots of side effects that I don't like, but better than being sick in bed all day.

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Welcome.

Enterolab, for the whole gluten panel including gene test is $369. They do offer something for $99, but not sure what that covers. We had the full panel done plus the soy/egg/yeast. There website is here so you can browse and see what you want to do.

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Wow, you have one smart OB-GYN! Not even all GI specialists are clued in to Celiac! I think menstrual complications are fairly common & the response to the diet certainly sounds like gluten intolerance of some kind. It won't take so much will power once you realise all you can eat without being sick. Once you start healing there are a lot of great substitutes for the wheaty foods you love. And you'll feel so much better, you won't ever want to cheat.

Eat well & be well!

Leah

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Really? The menstrual thing is COMMON? Here I've been thinking I'm nuts and this is my last holdout as to the symptom that didn't fit! All of my Dr.'s (haven't been to GI yet) have been scratching their heads at that one, too.

Just started gluten-free this AM, come to find out the "Equal" I've had in my coffee (thinking I was being good on South Beach) has Dextrose with Maltodextrin....see that Dextrimaltose is on the list of NO-No's, and think it's the same thing...

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Really? The menstrual thing is COMMON? Here I've been thinking I'm nuts and this is my last holdout as to the symptom that didn't fit! All of my Dr.'s (haven't been to GI yet) have been scratching their heads at that one, too.

Just started gluten-free this AM, come to find out the "Equal" I've had in my coffee (thinking I was being good on South Beach) has Dextrose with Maltodextrin....see that Dextrimaltose is on the list of NO-No's, and think it's the same thing...

I seem to have worse symptoms with my period- so, I think hormones must play a role in it. Or maybe I keep getting glutened during my period, but that's seems a bit convenient! Hope you try Enterolab- then you'll have a bit more to go on. Good luck!

lisa

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I am experienceing somewhat of the same thing....before i went gluten free i thought i had endometriosis but it was ruled out by ultrasound.....the reason i thought i had it was because during my period by bowels went even more haywire than normal.....not only would i have diarreha but it would hurt like you wouldnt believe to go to the washroom....it was like giving birth......not to mention the "i cant get out of bed the cramps are so bad".

Now i have been on a gluten free diet for about 3 weeks and i got my peroid and i am soooooooo sick.......now i was still on my anti diarrehal meds.....so then as soon as i got my period i was constipated.....and sooooooooooo nausous.....i went off the meds and i feel better but i have diarreha again.......so im not sure where to go from here but i guess ill just keep on truckin...lol

Good luck starting you gluten-free diet...its hard but we can all hope its worth it in the end....

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I've always wondered if anyone else has a change in symptoms associated with their cycle. Actually, I was thinking of posting something on this topic before I saw this one.

For me, my symptoms are always worse in the fews days leading up to the start of my period. Is it because there's some hormonal association? Is it because my food choices in those days make it more likely for me to get glutened by cc or something? I have no idea. I'm also on BCP; actually have been on the pill longer than I've been diagnosed & on the gluten-free diet so I don't know what the symptoms would be like without the pill. Whenever I've asked any doctors about this, they just kind of brush it off like it's not a big deal...but the change in symptoms is quite the big deal to me!

I'll look and see if I can find any published research on any associations between these things...

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My primary doctor has been treating my symptoms, and HIS theory behind WHY the pill helps my nausea is that nausea is caused by muscle spasm (so is diarrhea, and part of celiac disease is inflammation/spasm). Inflammation and somehow spasm are "fed" by prostaglandins, which are a hormone. When estrogen is high, prostaglandins are lower, so you have less spasm and inflammation when estrogen is higher. Thus, less nausea/diarrhea. He also told me that when I have my cycle, when my nausea is bad, that I should take Naprosyn (Anaprox) to inhibit spasm and inflammation. It seems to work most times, so I'm not complaining!

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I know i am resurrecting a very old thread, but I was doing a search for symptoms increasing during menstrual cycle--my period just started today and again with the cramping/loose stools, which is something I've been noticing over the past five years--when my period arrives, so do more bathroom issues. I remember a friend of mine in college telling me that she *always* got diarrhea with her period, without fail. Come to think of it, she was 100% Irish (the ethnic group that has the highest rate of Celiac disease). I had never had those issues until after I had children.

I suppose it is possible that since I have only been gluten free a few days, I still have some gluten in my system, and with my hormones at a low level, my digestive system is wonky thanks to that. Anybody else have this situation--more sensitive/touchy during their period?

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For me, its hard to tell whats going on when I'm menstruating because I always have this dull ache in my lower abdomen that sort of feels like menstrual cramps but much less painful and subdued. Then when I get my period, they come on full force, so I can't tell if its just menstrual cramps or if its because of my period that my symptoms are worse. I don't know. Sometimes I can alleviate it with Advil and sometimes I can't.

I can say that for the couple days leading up to my period, I am much more nauseous than usual. Don't know if thats normal thats just the way it's always been for me. And I am also on the BCP by the way.

Don't know if I helped much or not, but thats just my experience. :)

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My 19 yr old had all the symptoms of endometriosis, extreme pms. That is why we took her to the doc. He put her on complex vitamin B with magnesium. Said, take one everyday and 2 the week before your period and during it. You need vitamin B12 and magnesium and probable calcium too. Her symptoms are alot better now, its been 5 months, she noticed after 2 cycles.

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I am undiagnosed, Celiac is just a suspicion.

My main symptom for nearly 2 years is NAUSEA. Keep-me-in-bed-nausea. The timing of when this started (quite suddenly) and when it worsened (the week of my period) led me to my OB-GYN. Clueless, he threw me on "the pill" (isn't that what OBGYN's do best?) and amazingly my symptoms got better. Until the "week off", then nausea returned. Went down the endometriosis route, but that has been eliminated recently via laparoscope. I have been on hormone/pill without interruption for over six months, and symptoms are quite good.

Post-op follow up with OBGYN, I mentioned that my only recourse now was to go back on "South Beach" since that's the only time I felt better. She then mentioned the possibility of Celiac Disease. (I've had lifetime constipation issues, never D). Going for consult with GI in September, but in the meantime I went back on SB. Funny thing, but I had symptoms go away that I didn't even realize I had, like abdominal bloating, a painful feeling in my gut (dull ache, not sharp) and much of the constipation. I also have major anxiety issues, as well as insomnia. Didn't know THOSE were related until tonight! Had some salad dressing and was sick as a dog - worse than before. Now I've printed out the list of foods to avoid and will be going Gluten-Free (oh, I need some MAJOR willpower for this!) as soon as I can.

So, my question is - does the symptoms being LESS on "the pill" make ANY sense to you whatsoever? Have you had this experience? Or is the hormone simply a calming effect on the swelling and therefore reducing my nausea, not really affecting the C as well?

I think I am ready to spend $$ for Endolab, I don't want to wait until Fall for consult, then more time for testing, more for results.

Could you also tell me how much Endolab costs?

I had a really bad day today (two family parties, lots of unknown food) and I've had enough. I want answers, and I want to get off this pill - it's got lots of side effects that I don't like, but better than being sick in bed all day.

Hi! This is my fist time on here, so excuse me if I'm not doing this correctly, but I also have yet to get an official diagnosis of Celiac, although I have virtually ALL the symptoms, as well as bipolar illness, Recent RA, epilepsy, asthma, anemia and overall malnutrition to name a FEW! A week before my periods is living hell! It lookas like somebody was murdered in my bedroom and bathroom ~ that's all I'll say. The pain is over the top, and i'm bedridden for the good part of a week, and must wear Depends-and I'm 46. I have seen three neurologists and counless doctors who don't know ANYTHING about Celiac and tell me I hacve IBS, and blame the other problems, always, on my bipolar disorder, as if they are 'all in my head' !!!!!! I feel for you!

When ar our doctors going to srart educating themselves on this disease?!

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Hi! This is my fist time on here, so excuse me if I'm not doing this correctly, but I also have yet to get an official diagnosis of Celiac, although I have virtually ALL the symptoms, as well as bipolar illness, Recent RA, epilepsy, asthma, anemia and overall malnutrition to name a FEW! A week before my periods is living hell! It lookas like somebody was murdered in my bedroom and bathroom ~ that's all I'll say. The pain is over the top, and i'm bedridden for the good part of a week, and must wear Depends-and I'm 46. I have seen three neurologists and counless doctors who don't know ANYTHING about Celiac and tell me I hacve IBS, and blame the other problems, always, on my bipolar disorder, as if they are 'all in my head' !!!!!! I feel for you!

When ar our doctors going to srart educating themselves on this disease?!

Have you tried a sugar-free, gluten-free diet?

I'm older now, and my mother is gone. She was a paranoid schizophrenic. I was just a kid, and knew nothing about her ongoing female troubles, but about five years into her schizophrenia diagnosis she was bleeding so bad that she had to have an hysterectomy.

During my mother's crazy times she constantly created dishes full of 1. Sugar, and 2. Wheat. Now I realize she was a victim of candidiasis/celiac disease. It breaks my heart that I didn't know then what I know now.

..

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Just FYI, maltodextrin and dextrose are on the safe list .... ? I think?

I too get cramps when I get diarhoea and when I get my period. They feel exactly the same!

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Hi! This is my fist time on here, so excuse me if I'm not doing this correctly, but I also have yet to get an official diagnosis of Celiac, although I have virtually ALL the symptoms, as well as bipolar illness, Recent RA, epilepsy, asthma, anemia and overall malnutrition to name a FEW! A week before my periods is living hell! It lookas like somebody was murdered in my bedroom and bathroom ~ that's all I'll say. The pain is over the top, and i'm bedridden for the good part of a week, and must wear Depends-and I'm 46. I have seen three neurologists and counless doctors who don't know ANYTHING about Celiac and tell me I hacve IBS, and blame the other problems, always, on my bipolar disorder, as if they are 'all in my head' !!!!!! I feel for you!

When ar our doctors going to srart educating themselves on this disease?!

You may want to look at this: http://www.aafp.org/afp/2001/1115/p1725.html I have had similar symptoms and have recently been investigating what might be the cause. I think this might be useful. Print it out and take it to your doc -- it is from a legitimate source that speaks their language! Hurray!

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