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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.

Going Off Of The Pill
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36 posts in this topic

Has anyone here gone off the pill after being on it for a long time (2 or more years?) Any side effects? My doc says there shouldn't be but I want to make sure...

Jennifer

PS Did any of you feel better after stopping the pill?

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I went off the pill about six months ago after being on it for four years or so. I didn't have any side effects at all, other than my period becoming heavier, which is normal. It's a decision I don't regret at all, as I was a bit nauseous on the pill and hated taking it every day.

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Many years ago I was on the pill (for about 3-4 years) to help regulate my irregular cycles. I was getting married and wanted to try to get pregnant, so I stopped taking the pill. It took about 6 months to have a cycle, then every 3 months for 2 cycles, then every 2 months for about 3-4 cycles. It took a good 2 years to get them regular and then I got pregnant. My cycles are regular now. I never felt sick taking the pills.

Earlier you posted about your continuing nausea and sick feeling. Maybe some of it could be from the pills. You shouldn't have too many bad side effects from stopping them (irregular cycles are very normal when you stop them), taking them can certainly cause problems for many women...

God bless,

Mariann

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I was on the pill for over 20 years before I went off at 37 (and promptly got pregnant - 3 months later). I felt good when I went off of them, like I had a little extra energy. My periods got heavier (which they were prior to going on it) and I had a bit more cramping (which I had prior to the pill as well) but other then that I didn't have any problems at all.

I don't think you will have any problems at all.... I've never gone back on, I like being Rx free if I can....

Susan

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Susan-

Good to hear your transition was relatively easy. I have been on the pill since I was about 16. (No, I wasn't a high school nympho! :) I had several ovarian cysts rupture.) And my cramps were unbearable at times and had to take pain killers for them. I am hoping I might have out grown some of that, or that when I go off (to get pregnant I would assume), that it would happen asap ! I fear I will have to stay on them until I hit menopause. And I often wonder if I would feel better all around without them. hmmmm :unsure:

jknnej-- I wonder if your transition will depend upon how strong your pill is--like if it is a low or high hormone dosage. I take one of the lowest--ortho tri-cycline...

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I take the lowest possible pill-Aviane or the generic Alesse.

I think I will actually feel a lot better; I certainly hope so and I think it will help clear up the candida problems I am having!

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I had problems going off the pill - I tried a couple of times but would have really strong PMS reactions as a result. I was on it for 13 years. I did have cramping issues while on it, and what felt like a cyst at times. After going off of it, all this intensified and my period got a lot heavier. But my accupunctrist recommended I read "What Your Doctor Won't Tell You About Pre-Menopause" by Dr. John Lee, and learned about progesterone cream supplementation and that made all the difference for me. It's been 3.5 years now since I stopped and I still require progesterone supplementation (I'm going to be 34 next week) and have a lot of symptoms of estrogen dominance.

I keep hoping that the longer I am on a gluten-free diet and not stressing my system that my hormone issues will mellow out some.

For more about estrogen dominance, go to www.johnleemd.com and take the test.

It's worth it in the long run and it looks from the other posters that not everyone has the same experience I have had but I recommend getting off of it, too. Especially being that you are on a light dose one, now, may make it easier.

Take care

Stephanie

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Boy! When I think of going off the pill though... don't think my husband would be too excited about that !

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I take the lowest possible pill-Aviane or the generic Alesse.

I think I will actually feel a lot better; I certainly hope so and I think it will help clear up the candida problems I am having!

Hey! Sounds like you and I are having similar thoughts! I actually went off the pill (Ortho Tri-Cyclen Lo) just a few weeks ago. I did this because (1) I thought it might help me get rid of this yeast infection I've had for over a year, and (2) I'm not having sex anyway *because* of this yeast infection I've had for over a year! I'm 32 years old and have been taking the pill most of the time since I was 21. It's never been a big deal for me to go off of it - usually it has been better. Without that added hormone I have a much more stable emotional state and am not so prone to breakdowns (crying!). Fortunately, I've never really had cramps so that's not an issue for me. But I should start my period in a couple of days so I will let you know! ;)

As for clearing up the candida - well, there's been no help yet! It has actually been worse these past few weeks - probably due to an increased amount of stress and sickness (I've got a wicked case of bronchitis right now :()

I actually talked to a gastroenterologist who did a lecture on celiac and told him about it. He said that I probably can't get rid of it because my body is so weak now (from not being able to absorb nutrients). "I imagine that your body is so weak right now that it would have a really hard time fighting off infections." He also suggested that I take probiotics. Hopefully, after I've been gluten-free for a while, I'll be able to get rid of this. I hate it just like you do.

I'm trying to take a ton of vitamins and eat super healthy to build myself up again. Probably in about 3 months I'll try another round of diflucan/boric acid suppositories & whatever else my doctors can think of.

Good luck to you! Let me know if you find a miracle cure, would ya? ;)

- Michelle :wub:

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Michelle,

Did your doc try and give you Nystatin yet?

I know that worked really well for Kaiti on this board.

I am going to ask him about it on Tuesday.

I think the yeast might be the cause of all of my nausea...I get nauseated a lot lately, non pregnancy related.

I will let you know what happens...

Jennifer

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Jennifer,

Nope, I haven't tried Nystatin yet. I *have* done a lot with Diflucan - including 6 weeks of taking it every third day (which helped a little but it came back :() and then (just last month) taking it every day for 10 days and then another 72 hours later, while using boric acid vag. suppositories for two weeks. That was loads of fun, let me tell ya <_< Anyway - that last run didn't even touch it. The candida was just as bad at the end as it was in the beginning.

I'm having a hard time finding a doctor who actually believes in intestinal/systemic candida - who is also on my insurance plan. I'm enormously frustrated.

Good luck to you!!!!!!

How long have you been gluten-free? Did you have this before you knew that you had celiac disease?

Anyway... I wish you the best!

- Michelle

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In order to get rid of the yeast infection, you also have to stop feeding the yeast. That means absolutely no white sugars, etc. for a little while. Being gluten-free will help. My daughter was so bad that we had to be really strict on her diet for several weeks as well as add yogurts and such, use the diflucan for an extended period of time, and keep her away from anything containing gluten. Once it cleared up, she has not had another one as long as she stays gluten-free. The minute she fudges or gets into something accidentally, that is the one of the first things that rears its ugly head.

If your yeast infection is vaginal, you can also douche with buttermilk mixed with a little warm water. Squeeze gently to release it instead of creating a geyser. You want the mix to remain there instead of washing away. If virginal, try painting the area with buttermilk. That even works with small children.

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Hmmm I'd be worried about the buttermilk, it contains a natural sugar and sugars feed yeast... do you know why that works?

I can relate my own yeast story. I had an almost constant yeast infection for 2 years.... I took so much dulfican it was awful. It helped and then it would come back a week later. My ob sent me to a clinic for drug resistant yeast... nothing they did helped. My very natural friend who is from CA (now lives near me) sent me to some crazy health practitioner, who I don't believe is licensed in anything. I was desperate.

She cured me... it took about a month. This is what I did, use at your own risk, I had no problems with it at all and it worked like a charm, this was 3 years ago and I've not had a single yeast problem since.

I bought a small douche kit (the one I got is tiny kit by faultless) they hold about 12 oz. I also had to buy orgainc Tea Tree oil (sold at all health food stores). This is how you do it:

fill up the bag with warm water (just stick it under the bathroom fawcet). Then take a q-tip and stick it in the tea tree oil. Then stick the q-tip with the tea tree oil in the douche bag and swish it around for about 20 seconds or so, so that little bit of tea tree oil comes off in the warm water. Put the nozzle on and use it. On the first day I did this I did take a dulfican (I thought that would jump start things) I started out with the tea tree douche twice a day for about 10 days and then once a day. After a few days I had already felt somewhat better and I never took the dulfican again. After a month I felt cured and stopped it. I've never had to do this again.

If you research tea tree oil its a natural astringent, anti bacterial, anti yeast, anti everything. Again I struggled with this problem for a long time and tried everything, this worked like a charm for me.

Susan

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Last summer (end of June) I went off Ortho Tri Cyclen....heavier periods w/ increased cramping and ZITS! I looked like a teen going through puberty. So I went back on the pill, Ortho Tri Cyclen Lo around Oct/Nov...I was having a period for 2 weeks at a time and even heavier bleeding and even more severe cramps. I then switched to Yasmin in Jan and since then....RELIEF!!!! Light periods (which is GREAT, skin has claered up and cramping is minimal. I've been looking to see if it's gluten-free but haven't found anything yet and haven't had time to e-mail the company. If anyone knows I'd love any feedback.

We want to start a family in the next few years. I admit, i'm dreading coming off the pill and having to go through the same "puberty" like symptoms, but I realize it could be worse and if it means a healthy baby then I can sacrafice looking zitty for awhile. HAHA!

Good luck and thanks for posting. Good question!

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I went off the pill and went gluten-free at the same time so I am not sure what really helped me but I was very swollen and had gained over 25 pounds of water weight. They kept telling me it wasn't the pill but when I went off of it I went back to my normal size. Of course it could have been gluten making me swollen too. I guess I will never know because I will never go back on the pill. They made me sick and miserable. I didn't have any problems going off at all.

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Anybody use acidophilus? I sing the praises. I had several infections--like 4 in a row, and was a mess. Now, whenever I feel one coming on, I take acidophilus right away, and I never get any infections. If I take an antibiotic for any reason, I also knock back the acidophilus. PS--(Hope no boys are reading this :) but I had to stop using tampons altogether too--they started giving me infections everytime I tried to use them ! That was a huge factor for me for some reason.

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I can relate my own yeast story.  I had an almost constant yeast infection for 2 years.... I took so much dulfican it was awful.  It helped and then it would come back a week later.  My ob sent me to a clinic for drug resistant yeast... nothing they did helped.  My very natural friend who is from CA (now lives near me) sent me to some crazy health practitioner, who I don't believe is licensed in anything.  I was desperate.

She cured me... it took about a month.  This is what I did, use at your own risk, I had no problems with it at all and it worked like a charm, this was 3 years ago and I've not had a single yeast problem since.

I bought a small douche kit (the one I got is tiny kit by faultless) they hold about 12 oz.  I also had to buy orgainc Tea Tree oil (sold at all health food stores).  This is how you do it:

fill up the bag with warm water (just stick it under the bathroom fawcet).  Then take a q-tip and stick it in the tea tree oil.  Then stick the q-tip with the tea tree oil in the douche bag and swish it around for about 20 seconds or so, so that little bit of tea tree oil comes off in the warm water.  Put the nozzle on and use it.    On the first day I did this I did take a dulfican (I thought that would jump start things) I started out with the tea tree douche twice a day for about 10 days and then once a day.  After a few days I had already felt somewhat better and I never took the dulfican again.  After a month I felt cured and stopped it.  I've never had to do this again. 

If you research tea tree oil its a natural astringent, anti bacterial, anti yeast, anti everything.  Again I struggled with this problem for a long time and tried everything, this worked like a charm for me.

Susan

Susan,

I just heard the other night that my grandma used an all vegetable & meat diet combined with the tea tree oil douche to get rid of her chronic yeast infection. Were you on that type of diet too or did you just use the tea tree stuff? And just a drop per 12 oz. ? Sounds like it's probably worth a try! Did it burn at all?

I am a HUGE proponent of tea tree oil. I think the stuff is amazing. If you ever get a cold sore or a cancer sore and put a dab on it (full strength) it will usually be gone within two days! That stuff is awesome!

Right now I am trying to improve my diet (one day at a time, geez!) but am still eating a lot of fruits. I've heard that fruit can impede healing when you have candida because of all the sugars. Is this true? :(

I'm also going to start a regimen of grapefruit seed extract (tablets) - 4/day for a couple of months. That is another natural anti-fungal, anti-bacterial, anti-everything. And then I'll be taking probiotics to go with it! (A couple hours apart, so it doesn't kill those too!)

I *really* hope this works! I am sooooo tired of this. Did you guys ever read the post I put up regarding candida *causing* celiac disease to spring up? That really scares me. Apparently, candida has the same protein sequence as gluten - so I wonder if by allowing it to grow inside of me I am preventing my villi from healing? :( Yikes!

If that's the case I have got to get this under control!!

Thanks to everyone who is responding!!!

- Michelle :wub:

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Here's what I'm talking about: (from the link http://www.denvernaturopathic.com/news/celiac.html )

"Now we come to what to me is the most interesting of the recent research regarding celiac. It seems fitting that the research again comes from Holland , where celiac disease was first linked to diet. Dr. Nieuwenhuizen, from the research group TNO Nutrition and Food Research, published a paper in the June, 2003, Lancet. He links celiac disease with Candida albicans. Dr. Nieuwenhuizen, knowing the actual sequence of proteins which trigger celiac disease from the published work of other scientists, had searched the databases available to him through TNO to see if the same sequence existed in other places. It turns out the identical sequence of proteins occur in the cell walls of Candida albicans. [15]"

and

"If Candida can trigger the same chemical and immunological reactions as wheat gluten do we can imagine a number of interesting implications.

First, in people with celiac disease, symptoms usually get better rapidly when they eliminate gluten from their diet. This isn't always the case. Even without gluten some people continue to have symptoms. They may have intestinal Candidiasis. The Candida in their gut may be acting like gluten and continues triggering symptoms. "

- Michelle :wub:

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I went off the pill about four years ago, after having been on it for three. For me, it helped a lot of non-specific symptoms, and the vulvar vestibulitis that I have. My cycles have been more consistent, but the cramps are as bad as they were before taking the pill again. (I use FAM these days, along with barrier methods.)

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Hi Michelle,

I didn't use any more then a fully saturated q-tip with the 12 oz of warm water but I did really soak it and took it right from the tea tree bottle to the warm water so there may have been a drop on it at times and then swished it around.

It doesn't sting at all this way, it actually felt good. Again I used it 2 times a day for maybe 10 days or so then went to once a day. I think after 30 days or so I went to like every 3rd day for a few days then just stopped. I was really afraid that it was going to come back, I had hassled with it for so long and the medical community had totally thrown up their hands with me and just said, its drug resistant yeast and probably in a few years your body will fight it. A few years!!!! No way. I wasn't going to even entertain that idea, when I left the clinic I just cried and was at the point where I'd do anything.

This really worked for me. I love tea tree now too and use it in a variety of ways... seems to be good for just about anything. The only diet change I made while I was doing this was I stopped all sweets and sugar (as best I could but I did pretty well) I still ate fruit but not a lot of it. I'm sure I did get some sugar.... but I didn't eat sweets and stopped using it in my tea. I slowly went back to having some sugar again, I was so afraid that I'd get yeast again but its never come back.

Susan

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Going off the pill can help reduce yeast infections (estrogen in the body allows yeast to attach to tissue much more readily than without it, hence it's only menstrating women who regularly get yeast infections). Genitian violet - an old remedy for yeast infections before antifungals - can also be very effective, if very very messy (it stains everything!), apparently.

Another thing to consider is that Diflucan is species specific - and about 20% (if I recall correctly) of yeast infections are not the typical C. albicans species. You may want to get the species typed.

And, finally, if the yeast diagnosis isn't being made by a lab test at this point, demand one. I have a condition called vular vestibulitis, and a LOT of us with it are mistakenly diagnoses with yeast infections for a LONG time. (It's similar to celiac in many ways... Some people think there may be a connection, but it's not really researched scientifically.)

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the buttermilk has acidophilus, etc. is the reason it works. You can also treat the intestinal stuff with capsules or tablets of it. We did that for an extended period of time to ensure that it did not have a chance to regrow.

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What is vular vestibulitis?

I tried tea tree oil suppositories, yeast defense, which has everything you guys have stated above, acidophilus, diflucan,etc.

I have tried everything.

I firmly believe I MUST go off the pill before I can clear this up. it's been over a year that I've had this infection and nothing has worked.

I had really bad periods before but then again, I was only 18 when I went on the pill. Now I'm almost 29. My periods might be different as teens often have more troubles that clear up later in life.

If my cramps/period are still terrible I will go back on the pill at a later date.

Maybe it is just this specific pill? Maybe I should ask to switch to another... That might be better.

I think I will definitely try going off the pill first and see if it helps. I've met several women who said they could not get rid of the yeast until they went off of it, then poof, it was gone! Let's hope that helps me as well.

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I see a direct correlation for some of us with nausea and gluten-free diets.

I know many people here used to have nausea and it got better when they went gluten-free, but for the other half of us, we never had nausea before going gluten-free!

I always had stomach aches but they were always bloating/gas/diarrhea in nature..no nausea.

Now I am nauseated 24/7 since going gluten-free..I just don't get it.

I will ask my dr. about it tomorrow but since many doctors don't know much about celiac disease I will not assume he can help.

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