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Vulvodynia And Celiac Disease

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Has anyone noticed a connection between vulvodynia and celiac disease?

I was diagnosed with vulvodynia two years ago. My gynecologist, who specializes in vulvodynia, sent me to physical therapy, which I did once a week for six months - it helped a great deal. My physical therapist suggested going off birth control, and the imipramine I was taking for the vulvodynia. Doing so also improved the condition.

Two weeks ago I was officially diagnosed with celiac disease through an endoscopy. I've only been gluten free for a week, but it seems that maybe the vulvodynia is improving. I don't feel as much stinging and burning on a daily basis as I normally do. I'm wondering if there's a connection. Seems like it might make sense.

I just read "Celiac Disease: A Hidden Epidemic" by Peter Green. While he mentions connections between celiac disease and all sorts of medical conditions, vulvodynia isn't specifically mentioned. I have yet to read "Dangerous Grains" - I wonder if a connection is mentioned there.

I'm just wondering if there are any other women out there who had vulvodynia and noticed the condition improving or disappearing on a gluten free diet. Wow, I'd love it if it disappeared, but I'm not getting my hopes up.

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Hi! I've never had V but I DO have Fibromyalgia and have seen a big connection between those two. If you're into reading, check out the following book: What Your Doctor May Not Tell You About Fibromyalgia by Dr. R. Paul St. Amand and Claudia Marek. Your local library will probably have it or you can browse it at Borders or Barnes and Noble. I have Fibro bad but I am so grateful that I don't have V too.....I've heard how nuts it can drive some people. Good luck! Angel

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I have vulvodynia, too, actually a type that is called vestibulitis. I was diagnosed with that before I was diagnosed with celiac disease. Unfortunately, I haven't noticed much symptom relief since going gluten-free, which I had hoped would be the case. I've always wondered if there is a connection with these two diseases, and because they are both auto-immune diseases, I'm sure there is.

I'd love to know if you learn any more about this connection. I've had pretty consistent symptoms of the vestibulitis since I was diagnosed with it five years ago and would like to find out more. My doctor had some suggestions that were mostly surgical and I was very against, so I'm all for learning about more natural approaches to dealing with this.

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I was diagnosed with vulvar vestibulitis about seven years ago (about a year before my wedding). It is what led me to finding out I was gluten intolerant, actually, as someone on a VVS forum swore up and down that the latter causes the former. I didn't believe her, tried the diet, and while I didn't see my VVS symptoms change much, I noticed a change in other things that I had never thought were abnormal.

The doctor I see in San Diego, who is well known in VVS/vulvodynia circles, has noted that many of his patients have gastrointestinal issues, and a celiac diagnosis (suspected, really, I didn't have a biopsy) didn't surprise him at all. There does appear to be a genetic component to VVS/vulvodynia.

I'm probably 90-95% improved in my VVS symptoms through a combination of topical estrogen, anticholinergenic antihistamines, and physical therapy with biofeedback. My doctor's theory on my particular subtype of VVS is that an overload of histamine in the vulvar tissues causes pain itself (burning, particularly), as well as degrades the collagen in the skin, thinning it, bringing the nerves closer to the surface and making it more prone to tearing, and causing more histamine release when it's subjected to tactile pressure - which causes a lovely reinforcing loop.

Besides the above, a few other things that my doctor and I figured out was that seeing a sex therapist was helpful - chronic pain conditions can affect basic drives and extend beyond pure physical effects, but create feedback loops that worse physical effects. (Resting tension levels of the pelvic floor muscles, for instance, are prone to physical/psychological interplay - and I'm not even talking about vaginismus here.) Also, just having sex more often keeps the pain in check - for partly physical reasons in chemical reaction and effect on tissue.

I did have to not wear pants (skirts only) for over two years and still can't wear jeans. I also can't sit a regular bicycle (recumbent only). But it's still *vast* improvement over the constant pain, inability to sit for extended periods, and feelings of never ever being able to be "normal" again.

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I have been dealing with VV for over 6 years. I was just talking with hubby the other day, we have both noticed everything "down there" seems to be better now. I have been gluten-free for about 2 months now. No it is not 100% great now but at least not always "closed for repairs" lol

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I have vulvodynia, Fibro, had/have severe endometriosis (hysterectomy in 01 relieved most). Then also a bladder disease I noticed that was not mentioned called interstitial cystitis ( theory is it is also allergy and autoimmune related).

Since DX allergies and gluten intolerance much improved in all of the above! It was a never ending cycle of each aggravating another. Recently I have not been so strict and sure enough it all comes back.

I found this message board after looking for more resources to stay on the no gluten wagon! I fell victim to poor me I want this or that and now I keep relapsing into major poor me who is sick!

Another easy help for the vulvodynia-plain olive oil! My gyn is a specialist and it turns out I am allergic to glycerin which I was using for vestibulitis. In the rare circumstances that I flare I now use olive oil!

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Another easy help for the vulvodynia-plain olive oil! My gyn is a specialist and it turns out I am allergic to glycerin which I was using for vestibulitis. In the rare circumstances that I flare I now use olive oil!

Another common irritant - besides the spermicide nonoxyl-9 - is propylene glycol, when used topically, and it's in most lubricants, something most of us use (or should use). I can deal with it in small quantities, but have to be careful of it.

(I should have noted that I too had to go off the pill to get improvement, and take testosterone, as my levels were undetectable.)

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I was always bothered by that when I had to use it also. Most lubricants have glycerin and some sting me. If I ever get over my exhaustion from docs I will go get a check up and ask if olive oil can just be a lubricant!

Side note used to spend every week at one doc or another for many years and last few avoid them as much as possible other than allergist/chiropractor!

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Wow, thanks for all the responses.

Sounds like some with vulvodynia or vestibulitis improve on the gluten free diet, and some don't. I guess I'll just have to wait and see. Mine isn't so bad that I can't wear jeans, although it was before I went through physical therapy. And it's not really something that prevents me from sitting for long periods of time - I don't often find myself sitting at work thinking "wow, this really hurts." So maybe I'm lucky in that respect.

I've actually never had intercourse, but because of the vulvodynia, my expectations for the first time are now so low that I'm not expecting much. I just started dating someone, and I'm dreading the vulvodynia conversation. Of course I keep telling myself that if the guy wants nothing to do with me after he finds out, well then he's not the kind of guy I want to be with. But the conversation is still nerve wracking.

Julie, as far as the olive oil, yes, you can use it as a lubricant. That and vegetable oil. My physical therapist suggested both. When you think about it, they're as natural as you can get. Why subject such delicate skin to lubricants with chemicals in them, when you can use plain old oil. If you don't already own it, I hightly recommend "The V Book: A Doctor's Guide to Complete Vulvovaginal Health," by Elizabeth Stewart. My physical therapist recommended it and I find I reference it a lot. There's chapters on vulvodynia, UTI's, yeast infections, etc. etc. I believe she mentions using vegetable and olive oil as lubricants in the book too.

As far as condoms go, does anyone have any non-latex suggestions? I suspect I might have a latex allergy, and would just assume not use latex condoms. I guess I'm a bit scared about getting pregnant when I start having sex too. Since going off birth control helped the vulvodynia, I don't want to go back on it, I don't want to mess with my hormones again. I've heard diaphragms are a pain, and was thinking that when the time comes I might get an IUD. But I've since heard lots of bad stories about them.

Tarnalberry, I definitely think seeing a sex therapist is a great idea, and something I might consider in the future. I'll just have to see how things turn out.

Anyhow, wow, never revealed so much personal information in a public space. But it's great to hear stories and suggestions from others in similar situations.

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You can try polyurethane condoms - they're compatible with more types of lubricants than latex ones, too. My husband and I found that we didn't like them, and it turned out that it wasn't latex that was the problem (there are lots of other sources of latex that don't irritate me) but the N-9 that is/was on a lot of latex condoms as a spermicidal. Once we found one without N-9, it helped tremendously. I can't overstate how irritating N-9 is, so much so that it is being phased out of use.

We use a combination of condoms and FAM (fertility awareness method) now for birth control, because I didn't want anything with hormones, and the copper IUD wasn't appropriate for me (cramping issues - my doc and I decided I was far from an ideal candidate).

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I was never diagnosed with this. I did think that I may have DH. I had to vaginal biopsies, one came out eczema and the other spongiotic dermatitis. I went gluten free because it was a natural cure for spongiotic dermatitis. Although my symptoms were more itching, it made me realize that I'm not swollen down there anymore. I also tried all sorts of lubricants because I felt dry, which caused more irritation. Makes me wonder what I'm allergic to in them. Even plain KY was aggravating. I did go off my estradiol because they couldn't guarantee it was gluten free. I really didn't have any bad side effects, but maybe a little dryness. I'll have to try the olive or vegetable oil. Thank you for all the info.

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My Gyno recomends the use of mineral oil for a lubricant and it works very well. He also gave me a scrip for lidocane. - A numbing agent that has worked wonders for those times when I am ready but the body is not.. kwim...

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Wow, thanks for all the responses.

Sounds like some with vulvodynia or vestibulitis improve on the gluten free diet, and some don't. I guess I'll just have to wait and see. Mine isn't so bad that I can't wear jeans, although it was before I went through physical therapy. And it's not really something that prevents me from sitting for long periods of time - I don't often find myself sitting at work thinking "wow, this really hurts." So maybe I'm lucky in that respect.

I've actually never had intercourse, but because of the vulvodynia, my expectations for the first time are now so low that I'm not expecting much. I just started dating someone, and I'm dreading the vulvodynia conversation. Of course I keep telling myself that if the guy wants nothing to do with me after he finds out, well then he's not the kind of guy I want to be with. But the conversation is still nerve wracking.

Julie, as far as the olive oil, yes, you can use it as a lubricant. That and vegetable oil. My physical therapist suggested both. When you think about it, they're as natural as you can get. Why subject such delicate skin to lubricants with chemicals in them, when you can use plain old oil. If you don't already own it, I hightly recommend "The V Book: A Doctor's Guide to Complete Vulvovaginal Health," by Elizabeth Stewart. My physical therapist recommended it and I find I reference it a lot. There's chapters on vulvodynia, UTI's, yeast infections, etc. etc. I believe she mentions using vegetable and olive oil as lubricants in the book too.

As far as condoms go, does anyone have any non-latex suggestions? I suspect I might have a latex allergy, and would just assume not use latex condoms. I guess I'm a bit scared about getting pregnant when I start having sex too. Since going off birth control helped the vulvodynia, I don't want to go back on it, I don't want to mess with my hormones again. I've heard diaphragms are a pain, and was thinking that when the time comes I might get an IUD. But I've since heard lots of bad stories about them.

Tarnalberry, I definitely think seeing a sex therapist is a great idea, and something I might consider in the future. I'll just have to see how things turn out.

Anyhow, wow, never revealed so much personal information in a public space. But it's great to hear stories and suggestions from others in similar situations.

Don't let IUD's scare you away. They are much safer today than they used to be! Many many women are happy and healthy with IUD's both Copper and Hormonal types.

As far as condoms go, you can use polyuratane condoms or if you are monogomous and can deal with the idea... sheepskin condoms. Sheepskin do not protect against STD's but are effective against pregnancy.

good luck!

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I was just diagnosed with Vulvar Vestibulitis yesterday, although I've suspected it for 2 months (and hoped and prayed it wasn't going to be VV).

I love my Gynecologist, but am considering going to a specialist since it seems that many women with VV and Vulvodynia attribute their improvements to getting to a doc that knows the condition well!

Do you recommend the doctor you saw in San Diego? Can you give me his name?

Thank you,

Emily

I was diagnosed with vulvar vestibulitis about seven years ago (about a year before my wedding). It is what led me to finding out I was gluten intolerant, actually, as someone on a VVS forum swore up and down that the latter causes the former. I didn't believe her, tried the diet, and while I didn't see my VVS symptoms change much, I noticed a change in other things that I had never thought were abnormal.

The doctor I see in San Diego, who is well known in VVS/vulvodynia circles, has noted that many of his patients have gastrointestinal issues, and a celiac diagnosis (suspected, really, I didn't have a biopsy) didn't surprise him at all. There does appear to be a genetic component to VVS/vulvodynia.

I'm probably 90-95% improved in my VVS symptoms through a combination of topical estrogen, anticholinergenic antihistamines, and physical therapy with biofeedback. My doctor's theory on my particular subtype of VVS is that an overload of histamine in the vulvar tissues causes pain itself (burning, particularly), as well as degrades the collagen in the skin, thinning it, bringing the nerves closer to the surface and making it more prone to tearing, and causing more histamine release when it's subjected to tactile pressure - which causes a lovely reinforcing loop.

Besides the above, a few other things that my doctor and I figured out was that seeing a sex therapist was helpful - chronic pain conditions can affect basic drives and extend beyond pure physical effects, but create feedback loops that worse physical effects. (Resting tension levels of the pelvic floor muscles, for instance, are prone to physical/psychological interplay - and I'm not even talking about vaginismus here.) Also, just having sex more often keeps the pain in check - for partly physical reasons in chemical reaction and effect on tissue.

I did have to not wear pants (skirts only) for over two years and still can't wear jeans. I also can't sit a regular bicycle (recumbent only). But it's still *vast* improvement over the constant pain, inability to sit for extended periods, and feelings of never ever being able to be "normal" again.

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Yes, I have gluten intolerance (tested through enterolab) and was first diagnosed with vulvodynia in the mid 90s. I also have interstitial cystitis and back pain and rib pain and I'm convinced these things are related. The IC doctor believe there could be a bacterial infection that is yet unidentified that could cause IC but they have not proved this and I have tested negative for everything including Lyme. I believe there is a possibility all of this could be related to diet (yeast?) but of course I can't prove that. I haven't found a way to solve the vulvodynia problem. I've tried desipramine, elavil, Lyrica, physical therapy (biofeedback) and none of it seems to help. I imagine the nerve damage is pretty extensive. But I would think the celiac could be a culprit here as it damages nerves.

Leslie

Has anyone noticed a connection between vulvodynia and celiac disease?

I was diagnosed with vulvodynia two years ago. My gynecologist, who specializes in vulvodynia, sent me to physical therapy, which I did once a week for six months - it helped a great deal. My physical therapist suggested going off birth control, and the imipramine I was taking for the vulvodynia. Doing so also improved the condition.

Two weeks ago I was officially diagnosed with celiac disease through an endoscopy. I've only been gluten free for a week, but it seems that maybe the vulvodynia is improving. I don't feel as much stinging and burning on a daily basis as I normally do. I'm wondering if there's a connection. Seems like it might make sense.

I just read "Celiac Disease: A Hidden Epidemic" by Peter Green. While he mentions connections between celiac disease and all sorts of medical conditions, vulvodynia isn't specifically mentioned. I have yet to read "Dangerous Grains" - I wonder if a connection is mentioned there.

I'm just wondering if there are any other women out there who had vulvodynia and noticed the condition improving or disappearing on a gluten free diet. Wow, I'd love it if it disappeared, but I'm not getting my hopes up.

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Interesting! My friend suffers from this. Her dad was a celiac. AFAIK she hasn't been tested for celiac but she has been told to change her diet and she refuses to do so. Alas, she has some other medical conditions and each one calls for a different diet. Because of this she just gave up and decided to eat whatever she wants. Sad. but I don't think she's going to change.

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Holy crap! I had no idea there were so many people with both celiac and vulvodynia! Sorry to say ladies, but I'm so glad I'm not alone. This had been a nightmare. I just said a bunch of bad words before the word nightmare...I am trying my best to figure out some kind of solution/plan for all of this but it is painfully slow. I was diagnosed with celiac August of 09, had a fibroid removed September of 09 and a few months later my body went crazy. I slowly started cutting foods out and kept finding foods that didn't work but not enough that are safe. The weight loss has been a little scary. I have been following the low oxalate diet and of course staying gluten free but I haven't seen an improvement. If anything, it seems going gluten-free has made things worse! My intestines are constantly inflamed no matter what I eat. AND I get weird reactions on my lips too. They feel like they are super chapped at times or I get a hive/bump/thing that doesn't hurt or itch but it happens immediately after eating something that I can't pin down...when I eat certain foods, my lady parts itch. It's almost instant. I am 99% sure it's sugar. I only eat a few kinds of fruit. When I mention that to doctors they think I've lost my mind.

Has anyone had diet troubles? Any success?

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Holy crap to the entire subject!!! I had no idea something like this exists. I just thought I was a weirdo. And because of the matter of this subject, naturally you're not talking about it much. Man, if I would have known this 3 years ago, I'd still be married today. Do you know, if there's a good doctor for this in Pennsylvania? I did some research and it seems like most doctors/gynocologists don't even know about this condition or say, it's mentally.

Could there possibly be help in sight???

Wow, I can't even say how relieved I am to give this baby a name. I'm seeing a man for like over a year now and I'm just afraid of even dating him. We are like seeing each other once or twice a month, if. You can't call this dating. I've been excusing it by saying I'm so busy. Luckily he is, too. At the beginning he asked, if I was avoiding him. I'm just so scared of ever having normal intercouse again, because it just plainly hurts. I hate it <_< . I don't know, what to do anymore :o .

Hope for some help here, Stef

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I have had vulvodynia on and off for 27 years. What helps me as prevention is doing 10 -15 minutes of Kegel exercises every day, and taking calcium citrate 1200 mg. Flareups have thankfully become rare, but I do follow the low oxalate diet during a flare and take antihistamines - for me, Zyrtec lessens the pain and duration of a flare. Also increase time with Kegel exercises and up calcium to 1600 mg. Unfortunately, there seem to be many different causes and contributing factors, so what works well for one VV patient doesn't always work well for another, and the doctors are useless. Educate yourself, read everything you can find on it and experiment to find a healing plan that works for you. If anyone is interested, I would be glad to recommend books I found helpful along the way.

I've only been gluten-free less than a week, so I can't say whether that is a help or not, but I do think a connection between Celiac and VV is probable.

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I was diagnosed with this condition in 1997 and with vestibulitis several years later. I was just diagnosed with Celiac about a month ago. I, too, was wondering if there were any connection between the 2. My pain gets worse if I eat foods with a high oxalic acid content. That is a pretty limiting diet in itself. So when I found out that I have Celiac, that just added to the list of foods that I have to avoid. I feel very frustrated and some of the flours, such as soy flour, nut flours, cornmeal, etc, are a problem for me because of the high oxalic acid content. My pain comes and goes in waves, although I have the vestibulitis all the time. But I get flareups with that, too. It seems like there are some other women who have both of these conditions. Are you also on a low oxalate diet? If so, what kinds of foods can you not tolerate? The worst ones for me are spinach, parsley, beets, rhubarb, dark green vegetables, berries, citrus zest, very spicy foods, tea,peanuts pecans. To a lesser extent, chocolate, other nuts, soy products, fresh pinneaple, cornmeal/grits, sweet potatoes, other herbs.

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PrincessHungry;

it sounds like the so called doctors who dismiss your vulvodynia as something you're making up are full of crap. Unfortunately, there are a lot of doctors who still have this mentality, especially with women. That it must be psychological, they are overreacting, etc. The best thing to do is to keep searching for a doctor who is more sensitive to your needs and willing to listen and give suggestions. There are several major vulvodynia sites out there (just google the term) and they should have lists of various doctors all over the country (and other countries, perhaps) who are knowledgable in this subject. I had this condition for several years before any doctor could actually pin it down.

I, too, am very sensitive to foods with a high oxalic acid content and this is even more challenging now that I've been diagnosed with celiac disease.

Trust me, I understand your frustration.

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The uro-gyno who diagnosed me with vulvodynia

The diagnosis was fairly quick but dealing with other symptoms that are related or unrelated has been difficult. She prescribed imipramine and sent me on my way. Anything that I tried to mention she disregarded as crazy. All the food stuff, weird intestinal stuff, weird lady part pain and itching...she had nothing to say other than, you're nuts. I think the meds have helped but I'd love to take less or even discontinue them. They make me dizzy and my sleep schedule is all messed up. I'm going to try more acupuncture and Chinese herbs. I went to a nautropath but haven't been there long enough to tell a difference yet. I have my fingers crossed.

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WOW this thread shocks me. I am excited to find it. I have been having lots of female issues and have been told I have vulvodynia. I am not sure that I do, I get these horrible flares at times. However the last gyno I seen didn't feel I had vulvodynia. I am getting closer and closer to figuring out what's going on with me. I personally think vulvodynia is a bs diagnosis just like IBS. Okay why are people getting symptoms of vulvodynia! The last gyno I went to see has referred me to a urologist to talk about possible IC intersticial cystits. I have also seen a nautropath who has said almost always IC is linked to a food allergy. The nautropath gave me a IGG test and it all apparently came back negative. This is very interesting all you ladies are having the same issues as I am. I am also off of Birth control stopped taking it due to these flares hoping it would help. I also think there might be a hormonal link to my problems, possibly estrogen imbalance. I could cry reading this the doctors think I am nuts I think.

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what do you mean by saying that vulvodynia is a bs diagnosis? Can you please elaborate?

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Hi Rachel,

I know, what bekkaz meant, when she said, it is a bs diagnosis. She doesn't exactly mean, that our pain and our disease isn't real. It is very real. What she means (I think) is, that the diagnosis of vulvodynia (or vestibulitis) is a mis-term kind of, just like IBS a mis-term is. That's what I meant, when I send you the link. I don't know, if you read it yet. It was from that woman, that got diagnosed with vestibulitis and instead got diagnosed with IBS first. I have to come to my point here. What I mean is, that people, who get diagnosed with IBS first, don't really have IBS. They actually have something like celiac disease, but the doctors were so unknowledgeable and didn't see the actual disease. And because they had no clue, that what caused the pain was actually celiac disease, they just diagnosed their patient with IBS. So bekkaz thinking was probably, that while the pain and suffering is very real, the vv diagnoses is probably wrong (in her words bs), because there is an actual disease going on, that doctors have no clue about and that is actually "cureable" like celiac disease, if you do not eat the offending allergens. Does that make sense? If not, I try to explain it in other words.

So bekkaz is right in a sense, but describing it as bs sounds a little harsh.

Hope I could shed some light on this. If I'm wrong, please, correct me, bekkaz.

Have a good evening everyone, Stef

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      I use Liquid Health for my spectrum B vitamins and vitamin D. Might look into them, being in liquid form you can just add it to a beverage. Might see about magnesium also, huge issue with many with this disease.

      On other after thought, your probably already very aware of...but you mention your not "diagnosed yet" you will have to do a gluten challenge of eating gluten for a extended amount of time daily prior to getting tested. http://www.cureceliacdisease.org/screening/
    • Thanks guys! I have an endoscopy/colonoscopy  feb 5th, so we will see. I have had digestive issues for the past like 10 years. GERD, migraines, lactose intolerant, dizziness on and off starting last year. My test just always show chronic inflammation, I thought they tested for celiac last time but it was only H. pylori samples. As much as I don’t want to have celiac I’m hoping this could be the root of my problem! My doctor said I should probably go gluten free after the test regardless of the results. You guys have been so helpful!! 
    • Well was trying it in smoothies, and puddings...but yeah  I can see it especially with the jelling effects causing some issues...will try again later. I changed over to pumpkin seeds higher in zinc today for my rotation.

      PS I am allergic to corn..and any kind of sugar messes with me. SO most meds are off limits. I went with Immunity Tea from Republic of tea, Ester-C Capsules, Thayers slippery elm lazenges sugar free, and a zinc Supplement for my remedy. Oh and sugar free meds normally contain that asu what ever stuff......makes me go off the deep end mentally.
    • I am not diagnosed yet. Have been gluten free for almost 4 months. Felt incredibly good for the first couple of weeks. Eczema disappeared. Fatigue disappeared. Gastrointestinal discomfort disappeared. Then I had a couple of inadvertent gluten exposures with terrible symptoms ensuing - the common celiac symptoms. As the symptoms subsided, I started to feel better again. Not as good as the first couple of weeks but much better compared to the pre-gluten-free time. For the past 2 weeks, however, I have had an unprecedented sense of fatigue, brain fog, and headache. I have no other symptoms generally associated with celiac. Only fatigue and headache. I am guessing it might be nutritional deficiency due to the change in my diet [I understand this happens to many who go gluten free].    I will be seeing a doctor soon. In the meanwhile, the fatigue is so bad that it's interfering with my daily activities. I have never felt this weak in my life. Few days ago I tried exercising - I thought maybe it would generate some energy. But it made matters worse.   If this is indeed due to malnutrition, what nutrients could I be lacking? I have a rather diverse diet with a lot of greens and fruits, so I have no idea what the problem might be. I am getting tired even writing this now.   Any advice will be appreciated.
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