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Nova_Gryphon

Gluten And Menstration

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Hi, my name is Nova and I am a new member. I have been following a gluten free diet (mostly) for about 6 months now. I have always had irreguarity in my periods except when I was on the pill. I had to use fertility drugs to get pregnant the first time because I did not ovulate. After I had my first daughter I tried the Atkins diet for a while to lose the pregnancy weight. During that time, I did loose weight, and I also started to have more regular periods. I didn't know why but suddenly I felt a lot better and my menstration was semi-regular again. When we decided to have our second child, I went off the Atkins diet because I was concerned it would not be good for the baby. As soon as I went off it, I stopped ovulating and we couldn't get pregnant. So I went back on it, and got pregnant fairly quickly. At this point I was very sure there was some relationship between the low-carb life style and my menstration. After I had my second daughter I met someone with celiac disease. I had never heard of it before, and didn't even know people could really have wheat intolerance. So I decided to try a gluten-free diet to see how I felt. I have felt so much better on the gluten-free diet and I felt pretty sure I had celiac disease, even if my symptoms were not the norm. I decided to get tested because I suspect my sister and my mother are also celiac disease and I thought if I got the test it would give them enough reason to go get the test themselves. I went through about 5 days where I ate lots of wheat before the test, after being gluten-free for about 3-4 months. The test came back negative for celiac disease and I was pretty upset. I just wanted an answer, and a reason to follow the gluten-free diet. It is hard to rationalize the decision to eat gluten-free when the changes to your body are not obvious.

Has anyone else seen a relationship between a gluten-free diet and their menstration or their fertility?

Related to this, I often felt pregnant when I was not, queesy, tummy moving, tired. Has anyone else felt this way?

Is it common to have a false negative?

Those who have self diagnosed and are living a gluten-free lifestyle because they know it is right for them without the dr's diagnosis, what have you done about your kids? I want to protect my kids if they are celiac disease, but without a positive test from me, how can I rationalize making them get a blood test?

Thank you in advance for any comments. I mostly just want to stop feeling like I am crazy.

Nova

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Related to this, I often felt pregnant when I was not, queesy, tummy moving, tired. Has anyone else felt this way?

Is it common to have a false negative?

Nova, I defintely feel this way when I ingest gluten. And yes, it is very common to have a false negative. Your intestines may not have had the time to absorb all the damage visibly, or it's just the fact that the test is rather inaccurate. I tell everyone w/ a negative result--just do what helps you feel your best. There is no harm in living a gluten free life as long as your body is getting the nutrients it needs. You have come to the right place. This forum is great! So many people here to help :) I hope you feel better and adjust to this lifestyle!


Sweetfudge

Born and raised in Portland, OR; Currently living in Provo, UT

Gluten-free since June 2006

Also living with Hypoglycemia since 1991

Dairy-free for good since summer 2008

Started IBS diet and probiotics at GI's recommendation - Fall 2008

Also avoiding: potatoes, beans, crucifers, popcorn, most red meat, coconut milk :(

Started eating a Paleo diet Spring 2011. Love it!

The grass is always greener where you water it.

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You need to be eating gluten for a considerable period of time (think at least three to four months) for there to be enough damage for a positive, and even so, false negatives are quite common. So yes your test result is pretty meaningless. I've seen infertility mentioned as a symptom of celiac disease. I don't have kids so I can't tell you what to do about that. :)

Pauliina

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Thank you for your replies. I find it much more difficult to stick to my gluten-free diet after the negative test result. I wish I had not even taken the test. My Dr was pretty good about it though, he told me no matter what the test shows, it was clear from what I had described that I have some sort of gluten intolerance and should stay away from it. I just would like to know for my kids.

Nova

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Maybe you could find out about a gene test for your kids? That way you'd have some idea about how likely they are to develop celiac or gluten sensitivity. Or, since your doctor sounds like he's on board with your diet at least, ask him about testing the kids. Have they got symptoms that make you suspicious, or is it just in case?

Do stick to the diet! You already know that you feel better on it, and it doesn't work if you cheat, cheating just makes it harder to get to where you are feeling so good that you don't even want gluteny foods anymore. :)

Pauliina

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I started having a regular period for the first time in years when I went gluten-free! I also noticed that I do seem to be ovulating (at least all the signs point to that, I'm not trying to conceive so I'm not testing or anything). This happened almost immediately. It's not like I'm suddenly have a cycle that's like clockwork - I do still have polycystic ovaries. But it's WAY more regular.


*Gluten free since 7/06

*Cutting down on soy and dairy since 9/06

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Reading this board is so helpful. The symptoms like mood and depression, irregular periods and all my odd symptoms that don't fit in the dr's idea of celiacs are all here in other people too. It makes me feel so much better. Thank you.

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Guest cassidy

I think you need to figure this out a little more. If you saw an improvement going gluten-free, then you need to stay on the diet, and as everyone said, eating gluten for a few days wouldn't give you a positive result. You aren't crazy, the blood test is only about 50% accurate.

That being said, you said you are "mostly gluten-free." What does that mean? Does it mean that you cheat because you aren't really sure that you have to be diligent? If so, that is not the case. You can't cheat because you are causing damage that takes a while to heal. Just because your test was negative doesn't mean that your mother and sister don't have it. Maybe you can convince them to get tested because if they do have it they need to be on the diet as well. If one of them gets a positive diagnosis maybe that will prove to you even more that you have to be on the diet, plus it is easier to have family support.

I would also keep this in mind for your kids. If they get sick at all, please remember to think of celiac.

My blood test was negative but I had a very positive dietary response. I also had very irregular periods which got much better and I was able to get pregnant 6 months after going on this diet.

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Hi, my name is Nova and I am a new member. I have been following a gluten free diet (mostly) for about 6 months now. I have always had irreguarity in my periods except when I was on the pill. I had to use fertility drugs to get pregnant the first time because I did not ovulate. After I had my first daughter I tried the Atkins diet for a while to lose the pregnancy weight. During that time, I did loose weight, and I also started to have more regular periods. I didn't know why but suddenly I felt a lot better and my menstration was semi-regular again. When we decided to have our second child, I went off the Atkins diet because I was concerned it would not be good for the baby. As soon as I went off it, I stopped ovulating and we couldn't get pregnant. So I went back on it, and got pregnant fairly quickly. At this point I was very sure there was some relationship between the low-carb life style and my menstration. After I had my second daughter I met someone with celiac disease. I had never heard of it before, and didn't even know people could really have wheat intolerance. So I decided to try a gluten-free diet to see how I felt. I have felt so much better on the gluten-free diet and I felt pretty sure I had celiac disease, even if my symptoms were not the norm. I decided to get tested because I suspect my sister and my mother are also celiac disease and I thought if I got the test it would give them enough reason to go get the test themselves. I went through about 5 days where I ate lots of wheat before the test, after being gluten-free for about 3-4 months. The test came back negative for celiac disease and I was pretty upset. I just wanted an answer, and a reason to follow the gluten-free diet. It is hard to rationalize the decision to eat gluten-free when the changes to your body are not obvious.

Has anyone else seen a relationship between a gluten-free diet and their menstration or their fertility?

Related to this, I often felt pregnant when I was not, queesy, tummy moving, tired. Has anyone else felt this way?

Is it common to have a false negative?

Those who have self diagnosed and are living a gluten-free lifestyle because they know it is right for them without the dr's diagnosis, what have you done about your kids? I want to protect my kids if they are celiac disease, but without a positive test from me, how can I rationalize making them get a blood test?

Thank you in advance for any comments. I mostly just want to stop feeling like I am crazy.

Nova

YEP...i was irregular for years, after having my second child (which took me tons of vitamins and a full year of trying for her) my symptoms became worse. That's when i discovered i have a "gluten intolerability" not "Celiacs disease" (there is a difference between the two of them, and it sounds like your probably just gluten intolerant). My test also came back negative after eating tons of gluten (gluten= wheat, barley, oats and rye). The only test that came back right was my absolute positive success from starting the diet. The diet is the only 100% accurate test...sounds like you already have your answer. Hope this helps ;)


Gluten Free...negative blood results...absolutely positive diet results.

Dairy Free...absolutely positive diet results.

Egg Free...there goes another one...absolutely positive diet results.

Allergic to Codeine.

"Life is like a box of chocolates...you never know which ones may have gluten in them:)"

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YEP...i was irregular for years, after having my second child (which took me tons of vitamins and a full year of trying for her) my symptoms became worse. That's when i discovered i have a "gluten intolerability" not "Celiacs disease" (there is a difference between the two of them, and it sounds like your probably just gluten intolerant). My test also came back negative after eating tons of gluten (gluten= wheat, barley, oats and rye). The only test that came back right was my absolute positive success from starting the diet. The diet is the only 100% accurate test...sounds like you already have your answer. Hope this helps ;)

It helps a ton! Thank you.

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I could hug you for writing your post.

I have experienced the exact same situations in regards to menstruation and Celiac disease. I actually skipped for 8 months in a row prior to my diagnosis. Observing my cycle is now one way that I am able to tell if I am successfully following the diet or not.

I have always had horribly light and short periods. I actually went to a doctor prior to my diagnosis and begged him to give me something to menstruate. I would spend days bloating...larger and larger...until eventually I would skip...again...

My moods were all over the place...my skin looker terrible... and my body hurt all the time. I tested negative for diseases across the board...year after year after year...

The first diet modification I experienced was also the adkison diet. My grandmother was the first one who noted my inability to process certain foods. The second I got on the diet I felt a difference. My grades went up, I lost a ton of weight, and felt incredible.

After a few years of trial and error and a few odd test results I now am pretty sure that my light period may have something to do with the swelling that occurs in my intestines (and possibly other parts of my body) due to gluten ingestion. I just had a biopsy done and he saw too saw the swelling that I was feeling. I, much like yourself, had nothing but negative blood test results. However I am now beginning to place more faith in what know about my body and less in what misleading tests have to show.

I gain an enormous amount of water weight the second I eat anything I can't tolerate. I am throughly convinced this has something to do with my MIA menstrual cycle.

If and when I eat something I can't tolerate...I found that running ( I know this sounds utterly impossible in the face of gluten exposure, but hear me out) helps me to sweat and release an enormous amount of stored fluid...

sooo I think ur on the right track...

don't give up

and good luck

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Thank you! It is so nice to know I am not the only one, and to have the encouragement that I am doing the right thing following this diet. This site has been really wonderful for me. Now if I could only convince my sister and my mom to give up the wheat too for their health!

Nova

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If one is gluten sensitive, the autoimmune reaction caused by the ingestion of gluten has the possibility of affecting every bodily system, tissue, and organ. Therefore, an affect on fertility, menstruation, weight, etc. is highly likely.

Personally, I had menstrual irregularlities since I began my period at age 10.

I have been gluten free for only six months, and have recently begun to get a regular (monthly) period in the past few months.

This is the first time in 10 YEARS I've gotten my period AT ALL without use of birth control to bring on a cycle!!!!!

Infertility is highly common in my family, and I hypothesize that it is due to gluten intolerance/celiac genetic predisposition in my family.

Also, my hair has mysteriously started to fall out two times in my life (once as a teenager, and just recently prior to diagnosis). It has not only stopped falling out, but is now thicker than ever.

I understand the "cheating" syndrome pre-testing.

False negatives are SO common. Your personal experience is the most important test of all...no one knows your body better than you.

Best Wishes

D


Enterolab Tested Positve on

3/19/06 for

Celiac Gene and Glutent Intolerance Gene

(HLA DQ 2,3)

Gluten/Casein Intolerant

I love how it feels to be clean and free of gluten and casein so I can really live!

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