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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.

Ladies With Celiac Disease
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17 posts in this topic

Hi all. this is my first post on the forum. well i heard that women are 9x more likely to get dx than men.

Is this true? if yes do we know why? I think it might just be that women are more likely to see a doctor, more likely to have insurance, and to admit certain symptoms, etc. thoughts?

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It is worth noting that, in general, women are more likely than men to be diagnosed with ANY autoimmune condition. No one knows why.

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It is worth noting that, in general, women are more likely than men to be diagnosed with ANY autoimmune condition. No one knows why.

yeah i remember reading that somewhere too

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I've heard its because women are more in tune to their body and more willing to go in and find out why.

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My doctor said people who are high-strung are more likely to get diagnosed because of their personality. But I wonder if people with severe GI issues are more likely to be high-strung. I feel out of control when everything I eat makes me sick, so I get anxious...which means anxiety all the time until my diet is resolved. I've noticed women with autoimmune diseases do tend to be high-strung. Could there be a connection there?

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My doctor said people who are high-strung are more likely to get diagnosed because of their personality. But I wonder if people with severe GI issues are more likely to be high-strung. I feel out of control when everything I eat makes me sick, so I get anxious...which means anxiety all the time until my diet is resolved. I've noticed women with autoimmune diseases do tend to be high-strung. Could there be a connection there?

That makes sense. when you are stressed your body releases cortisol, which disrupts your immune system. Which may be the reason celiac disease presents itself after a period of stress or illness. I myself still get panic attacks even after being gluten free a long time :\

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There is debate whether or not the diseases are more prominent in women or the fact that most men will ignore minor/medium symptoms. Since most autoimmune diseases cause very minimal symptoms until they progress in severity it is common for people just to think of a minor symptom as part of their life. It is also important to remember that autoimmune disease won't always progress to severe stages, take a look at the Chicago celiac center:

"Only 3% of people with the disease are diagnosed" -http://www.cureceliacdisease.org/medical-professionals/guide/diagnosis'>http://www.cureceliacdisease.org/medical-professionals/guide/diagnosis

"The number of Americans with celiac disease would fill 936 cruise ships. Passengers on 908 of the ships won’t know they have it." - http://www.cureceliacdisease.org/

I highly doubt that of these 97 percent undiagnosed celiac's they are all just ignoring severe symptoms and suggestive blood tests (I.e- anaemia) - The disease can very well have little affect on some people and show low positive results, sometimes these low positives will go to full blown positive and sometimes it wont. Autoimmune diseases in general are a guessing game with few providing a slam dunk diagnosis. Some people will go and live a completely normal and long life with a low stage autoimmune disease that never progresses.

I would be willing to bet that around 60 percent of the general population would have at least one slightly elevated antibody test if you ran the entire disease panels on them (I have had 15 different A.I antibodies tested and there are still more). Do these tests really mean anything at the current time? Sometimes they do, sometimes they don't.

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I saw a few reports on TV that said women would be more prone to the autoimmune diseases than men because our immune systems are slightly different. We have to be able to shut off the immune response to a parasitic invader living inside us for 9 months. I affectionately call mine M & J. :). I don't have time to google that, but maybe you could find something along those lines as an explanation. Female hormones may be a factor, too. I don't think there is a real answer.

I have also heard that women are more likely to talk to each other, on forums, and with a doctor about health issues than men. I think women may go to doctors more regularly as they tend to see an OB/gyn every year or two.

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There is debate whether or not the diseases are more prominent in women or the fact that most men will ignore minor/medium symptoms. Since most autoimmune diseases cause very minimal symptoms until they progress in severity it is common for people just to think of a minor symptom as part of their life. It is also important to remember that autoimmune disease won't always progress to severe stages, take a look at the Chicago celiac center:

"Only 3% of people with the disease are diagnosed" -http://www.cureceliacdisease.org/medical-professionals/guide/diagnosis

"The number of Americans with celiac disease would fill 936 cruise ships. Passengers on 908 of the ships won’t know they have it." - http://www.cureceliacdisease.org/

I highly doubt that of these 97 percent undiagnosed celiac's they are all just ignoring severe symptoms and suggestive blood tests (I.e- anaemia) - The disease can very well have little affect on some people and show low positive results, sometimes these low positives will go to full blown positive and sometimes it wont. Autoimmune diseases in general are a guessing game with few providing a slam dunk diagnosis. Some people will go and live a completely normal and long life with a low stage autoimmune disease that never progresses.

I would be willing to bet that around 60 percent of the general population would have at least one slightly elevated antibody test if you ran the entire disease panels on them (I have had 15 different A.I antibodies tested and there are still more). Do these tests really mean anything at the current time? Sometimes they do, sometimes they don't.

So basically a lot of men will ignore the problem, GI problems or whatever it is, for as long as possible? Yeah I know people who would rather die than have to eat healthy/different food than they are used to!

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LOL I'm "manly" and ignore the symptoms until a while after I should have gone to the hospital. LOL I ignored celiac for 30+ years.

I don't think acquiring an AI disease has to do with being highstrung. I've been called laid back to a fault so I know it's not the case for me, although I wouldn't doubt that a stressed person would end up with more symptoms.

I've read that they are looking into the link between the differences in our sex hormones. For some women, AI disease symptoms lessen after menopause because we have less hormones.

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I think it really has to do with the individual, not their sex. I am pretty laid back, always end up at the doc's after later than I should have been there (almost manly there :D but had to diagnose hubs' DH - which made a believer out of him when he looked it up)

I would agreen with Karen that my immune system appears to be different, and perhaps??? one which the TNF inhibitors were designed for - crossed fingers smiley --).

But I do think, in general, women are more likely to avail themselves of medical treatment, or force the men in their lives into it, than men. I don't know if it comes from the mothering instinct (I have no children) or a general awareness of the body or interest in its functions, but speaking for myself only, I want to know what's going on, gosh darnit !!! I hate that fuzzy IBS zone :ph34r:

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So basically a lot of men will ignore the problem, GI problems or whatever it is, for as long as possible? Yeah I know people who would rather die than have to eat healthy/different food than they are used to!

Well, I am a male. Since I have been going through a possible diagnosis I have talked to several friends about it and the surprising consensus among my male friends is that they all have pains that come and go and they just ignore, a few of them even have daily pains. I might be diagnosed although I have no symptoms of celiac, my way of thinking is treat it before it becomes symptomatic and problematic, my male friends all say the same thing "I would keep eating gluten until I was horribly sick and couldn't". My female friends are much more supportive of treating it before it becomes a problem. Once again you can't just simply group it as men do this and women do that but I do feel that men are more likely to ignore pains.

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I saw a few reports on TV that said women would be more prone to the autoimmune diseases than men because our immune systems are slightly different. We have to be able to shut off the immune response to a parasitic invader living inside us for 9 months. I affectionately call mine M & J. :). I don't have time to google that, but maybe you could find something along those lines as an explanation. Female hormones may be a factor, too. I don't think there is a real answer.

I have also heard that women are more likely to talk to each other, on forums, and with a doctor about health issues than men. I think women may go to doctors more regularly as they tend to see an OB/gyn every year or two.

This is very close to what I was about to respond - thanks for typing it out for me K!

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This is very close to what I was about to respond - thanks for typing it out for me K!

This is very close to what I was about to respond - thanks for typing it out for me K!

My poor tired fingers! Glad I could help.

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but I do feel that men are more likely to ignore pains.

I believe women are more likely to ignore all minor pain and are more likely to realize and ADMIT something is not quite right in the bathroom.

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LOL I'm "manly" and ignore the symptoms until a while after I should have gone to the hospital. LOL I ignored celiac for 30+ years.

I don't think acquiring an AI disease has to do with being highstrung. I've been called laid back to a fault so I know it's not the case for me, although I wouldn't doubt that a stressed person would end up with more symptoms.

I've read that they are looking into the link between the differences in our sex hormones. For some women, AI disease symptoms lessen after menopause because we have less hormones.

I used to ignore my symptoms when I was in middle school/high school (I'm in college now)

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Well, I am a male. Since I have been going through a possible diagnosis I have talked to several friends about it and the surprising consensus among my male friends is that they all have pains that come and go and they just ignore, a few of them even have daily pains. I might be diagnosed although I have no symptoms of celiac, my way of thinking is treat it before it becomes symptomatic and problematic, my male friends all say the same thing "I would keep eating gluten until I was horribly sick and couldn't". My female friends are much more supportive of treating it before it becomes a problem. Once again you can't just simply group it as men do this and women do that but I do feel that men are more likely to ignore pains.

A possible dx of gluten sensitivity you mean? Yea I have had people (mostly guys) tell me, "Well if I was you I would still eat whatever I wanted LOL"

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
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      I have not. I'll talk to my doctor about it
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