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A commonly undiagnosed issue: CELIAC

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  • A commonly undiagnosed issue: CELIAC

    Our fellow Tapper RoseTapper has experience with this issue and has posted other articles you can search for if you wish. We may try going gluten-free for 8 weeks and see how we do if I can get DH on board. We don't each much gluten, but any can be a problem if one has the conditions below.

    Why Haven't Infertile Couples Been Told These Facts?

    Millions of people have celiac disease, but most donít know they have it, in part because symptoms can be so varied. It is an often overlooked digestive disorder that causes damage to the small intestine when gluten, a protein found in wheat, barley and rye, is eaten. Infertility seems to be more common in women with untreated celiac disease. Other gynecological and obstetrical problems may also be more common, including miscarriages and preterm births.
    For men, problems can include abnormal sperm -- such as lower sperm numbers, altered shape, and reduced function. Men with untreated celiac disease may also have lower testosterone levels.
    The good news is that with proper treatment with a gluten-free diet and correction of nutritional deficiencies, the prognosis for future pregnancies is much improved.

    New York Times February 3, 2010
    Dr. Mercola's Comments:

    Celiac disease -- which prevents your body from properly digesting gluten, a protein found in wheat, rye, and barley Ė may be far more common than previously thought. A decade ago, it was believed that celiac disease affected just one in 10,000 Americans.
    But a 2004 report by the National Institutes of Health (NIH) estimates that as many as one in every 133 Americans have it. That equates to roughly 2 million people suffering from gluten intolerance in the US alone.
    There are many millions more that suffer from sub-clinical gluten intolerance Ė some estimate as many as 30 million Americans -- so there is a very real possibility that you or someone you know is affected by this.
    Unfortunately, celiac disease can manifest in so many ways, itís frequently misdiagnosed and/or mistreated. One study showed it takes an average of 11 years for patients to receive a correct diagnosis!
    What is Celiac Disease?
    Celiac disease (CD) is an autoimmune disease, much like lupus and rheumatoid arthritis. To get the disease, you must have both a genetic predisposition plus an environmental factor that triggers the disease.
    In this case, the environmental trigger is gluten.
    If you have celiac disease, eating gluten triggers an autoimmune response, provoking your body to attack itself and destroy healthy tissues, especially the villi in your small intestine. This can also have a detrimental effect on your bodyís ability to absorb and process nutrients.
    Some of the most common symptoms of this disease process include:
    • Chronic diarrhea
    • Gas
    • Bloating
    • Acid reflux
    • Constipation
    Even a small amount of gluten can trigger a response.
    How Celiac Disease Can Affect Your Fertility
    In the New York Times article above, Dr. Sheila Crowe, a professor in the division of gastroenterology and hepatology at the University of Virginia, provides information about a slightly lesser known side effect of celiac disease, namely infertility, which can affect both men and women with the disease.
    Studies from various countries indicate that fertility problems are indeed more common in women with untreated celiac disease, compared to women who do not have it.
    The risk of suffering other gynecological and obstetrical problems like miscarriage or preterm birth is also higher for those with celiac disease.
    In addition, other common menstrual disorders that frequently affect women with celiac disease include:
    • Later onset of menstruation
    • Earlier menopause
    • Secondary amenorrhea (a condition in which menses starts but then stops)
    These menstrual abnormalities, along with other hormonal disruptions they cause, can lead to fewer ovulations, which in turn results in a reduced chance of pregnancy.
    Men with the disease, especially if itís undiagnosed, can also face fertility problems due to:
    • Abnormal sperm (reduced sperm count, altered shape, and reduced function)
    • Reduced testosterone levels
    How to Diagnose Celiac Disease
    As Dr. Crowe recommends, it might be wise to get screened for celiac disease if you suffer from repeated miscarriages or are unable to conceive for unknown reasons Ė especially if you suffer any of the most common symptoms.
    Just remember that symptoms can vary widely, and symptoms are easily confused with those of other diseases, such as irritable bowel syndrome, iron-deficiency anemia, or even chronic fatigue syndrome.
    Fortunately, there are now more reliable blood tests that can screen for the disease, so that youíre not left guessing and wondering.
    People with celiac disease have higher than normal levels of certain autoantibodies in their blood. So to diagnose celiac disease, your doctor will need to test your blood for high levels of anti-tissue transglutaminase antibodies (tTGA) or anti-endomysium antibodies (EMA).
    Please keep in mind that you need to continue eating a diet containing gluten, such as breads and pastas, in order to obtain an accurate test result! If you go on a gluten-free diet prior to being tested, the results may come up negative for celiac even though you might in fact have the disease.
    If the test is positive for celiac disease, a biopsy of your small intestine may be performed to confirm your diagnosis. The biopsy checks for damage to the villi, which is a sign that celiac disease is damaging your intestines.
    The Case for a Low- or No-Grain Diet Ė Whether You Have Celiac Disease or Not
    The prevalence of celiac disease is yet more evidence that contemporary humans simply arenít equipped to consume mass quantities of starch and sugar rich foods many modern diets consists of.
    Most people simply consume far too much bread, cereal, pasta, corn (a grain, not a vegetable), rice, potatoes, snacks and junk foods, with grave consequences to their health.
    A diet high in grains causes insulin resistance which causes far more problems than this dangerous autoimmune response. Itís also a leading factor of obesity, which now affects a whopping two-thirds of all Americans.
    Many of you are still focused on fat intake, but itís really not the fat in the foods you eat but rather the excess carbohydrates from your processed food diet that is making you overweight and unhealthy, and contributing to epidemic levels of other diseases such as diabetes.
    How to Treat Celiac Disease
    In my experience, gluten intolerance can be treated quite easily by eliminating gluten and most grains from your daily diet.
    Itís important to realize that gluten can be hidden in many foods including soups, soy sauce, candies, cold cuts, and various low- and no-fat products, so check the labels before you eat it.
    Also watch out for malt, starches, hydrolyzed vegetable protein (HVP), texturized vegetable protein (TVP) and natural flavoring.
    Some pharmaceuticals, vinegars and alcohol can also contain gluten.
    If you have celiac disease, itís imperative that you do not eat gluten in order to avoid further damage to your health. But itís not only people with gluten intolerance who would benefit from avoiding grains--in my estimation over 85 percent of the population would benefit from avoiding them, and this includes even whole, organic grains.
    Remember, if you stick to a diet consisting mainly of whole foods, preferably locally-grown organics, youíll reap all the other beneficial side effects as well, such as increased energy, an enhanced mood, and a lower risk of other chronic illnesses.
    Once you realize how good you can feel on a gluten-free diet, youíll probably have no problem avoiding it and living a full, healthy life!
    Additional Resources
    For more in-depth information about celiac disease and going on a gluten-free diet, here are three good sources:

    Pamela, Type 3, strong secondary Type 4

    "that through his death he might bring to nothing the one having the means to cause death, that is, the Devil;" Hebrews 2:14
    "As the last enemy, death is to be brought to nothing." 1 Corinthians 15:26

  • #2
    More Prevalent Than Previously Thought


    Thanks for bringing this matter to Tappers' attention--this message bears repeating on a regular basis.

    The latest studies have indicated that rate of celiac is actually closer to 1 in a 100 Americans, and the incidence of celiac has increased five-fold in the past 50 years (not just because more people are being tested--they used blood samples from 50 years ago and current blood samples). Also, while celiac affects nearly three million Americans, 30 percent of Americans are gluten sensitive and also should not eat gluten. Certain ethnicities also tend to have a higher incidence of celiac: Scandinavians, Scots, the Irish, English, Italian, and German.

    While many people with celiac never exhibit any symptoms, others may simply appear to have hormonal problems (such as infertility or miscarriages). Oftentimes, celiacs will have symptoms that indicate mal-absorption of vitamins and minerals--iron anemia, brittle teeth from lack of Vit. D and calcium, bleeding due to lack of Vit. K, neuropathy from lack of B vitamins, pain in the bones and/or joints because of lack of D and Calcium, night blindness from lack of Vit. A. Migraines and depression are also common complaints.

    There are currently four very different tests for celiac, and if you're concerned that you might suffer from this genetic auto-immune disease, your doctor should order a minimum of TWO of these tests --and preferably three or four. However, most doctors are unaware of the various tests or may use an older test that has a high false-negative rate. In the end, regardless of what the tests say, if you feel better without gluten, that's the way to go.

    Laura (Rosetapper)


    • #3
      Facial Features that May Indicate Celiac

      I forgot to mention that at the last conference I attended on celiac, an expert described a study that had just been completed in Italy. Apparently, the results of the study indicated that because the facial bones of celiacs tend to "set" later in life due to mal-absorption of calcium and Vit. D, their faces tend to have prominent cheekbones, foreheads, and/or jaws/chins. I found this information interesting because everyone with celiac in my family had one face as children and teenagers and quite another face as an adult--our faces ended up with prominent cheekbones and square jaws.

      What is even more interesting about this is that other studies (unrelated to celiac) have determined that we tend to be attracted to people of the opposite sex whose faces mirror our own. I've always wondered how so many people with celiac ended up being married to other people with celiac--and neither knew! Of course, they were diagnosed later in life, and perhaps they were attracted to the other's "mirrored" face. At last year's conference, I'd sat down next to an extremely attractive man with celiac (a total hunk!), and he seemed equally taken with me. Then when the information was presented about celiacs' facial bones setting later in life, we turned to each other, stared a bit, and then laughed like heck! I have a feeling he was thinking the same thing I was.

      Anyway, I've mentioned this because perhaps you'll recognize yourself in my description of a person with celiac.

      Laura (Rosetapper)


      • #4
        This topic needs a bump!

        PLEASE read this information!

        Laura (Rosetapper)


        • #5
          Pamela, thank you for bringing this issue to the forefront again. I'm always happy to see this information repeated.

          I was desperate for help 3 years ago, due to body pain and being extremely tired and other problems that I can't remember right now. I spent 5 years going doctor to doctor and no one could or would help me. I was desperate and because of RoseTapper and her persistent posts on gluten intolerance decided to go gluten free. Withing 3 days my health started to change and I was feeling much better.

          Every time I think about eating something I shouldn't, I try to remember where I came from. I have had gluten by accident and I was reminded and it took a while to feel better again so why would I deliberately put myself through all that again. More and more foods are now available gluten free and most restaurants offer gluten free menus. Being GF is not hard. I don't care if you're eating a piece of cake, If I really wanted cake I can bake a GF cake and eat it, but it isn't important to me. I make sandwiches with corn tortillas etc.

          If you aren't feeling well think about what problems you may be having and give this way of eating a good try. That doesn't mean for just a week or 2 and say "Okay I tried it now I"m going to eat what I want". Sometimes it takes a lot longer for people to experience the changes.

          I also noticed that my belly fat isn't there the way it was. Gluten intolerance also has a lot women walking around looking like they are pregnant.

          Good health to all of you who go GF and for those of you who don't.



          • #6
            I was told I wasn't gluten intolerant and then two years later I read an article about how the test results are often misunderstood. According to the article, I really was gluten intolerant. I decided to do a little self test by not eating gluten. Everyone is different and it could take a year to notice any change. For me, I noticed the very next morning. When I got up, my feet no longer felt like I was walking on pins and needles. I looked down and said to my DH "I have ankles again!" Imagine that! After just one day of not eating the stuff. I'm very fortunate because I don't think I would've made it a year while being in limbo.

            As far as gluten free food goes, it's harder for me since I'm allergic to the gums that most bakeries add. Sami's Bakery in FL has great tasting gluten free food without the added gums. However, they do bake non-gluten free goods so it is possible that traces of gluten could get into the food.



            • #7
              Mary, my naturopath also told me I'm not gluten intolerant based on a test he did. Try telling my GI tract that!

              Thanks for this information, Pamela. I have a friend who has suffered several miscarriages. I will pass this information on to her.


              Mom of three amazing little ones and wife to my best friend. Incorporating T-Tapp, diet, spirituality and energy healing to improve my whole being.

              Combo w/ LT tendencies
              DYT Type 4/2


              • #8
                I tried this recipe today:


                and had to use equal parts tapioca flour/oat flour/buckwheat flour. I couldn't find any arrowroot at home, so I added a little more tapioca and we'll see how it turns out. It smells great!

                Pamela, Type 3, strong secondary Type 4

                "that through his death he might bring to nothing the one having the means to cause death, that is, the Devil;" Hebrews 2:14
                "As the last enemy, death is to be brought to nothing." 1 Corinthians 15:26


                • #9
                  Mmmm...that recipe looks good Pamela! I might try it with the Bob's All Purpose flour I have on hand. I was doing all my own flour grinding but have gotten into some survival modes with being in the rental and all the moves. I've also (finally!) discovered I can make a good biscuit with the Bob's flour! Trust me I've had many many failures! A gf biscuit was a hard one to come up with!

                  I want to say that many celiacs and gluten sensitive people cannot eat oats or oat flour. Unfortunately most of the oats have cross contamination from the fields or from processing with wheat. HOWEVER, there are gluten free oats that are grown in non-wheat fields and processed on non-wheat equipment. Bob's Red Mill has a good one. McCann's is not certified gf but they do process or grow them safely...don't remember...but many do well with McCann's. When my system is being challenged I don't do well with oats or if I've had to many but love McCann's oats when I'm doing good. It did take me over a year of being gluten free and no oats before I could handle them from time to time.

                  We've been gf for nearly 3 years now. We've had a few periods where we ate wheat (one was when we moved a year ago) and willingly go back to a gf lifestyle. It is worth feeling better!! We felt better immediately upon cutting wheat out and saw benefits for months afterwards. It wasn't until a year later that we saw significant improvement in my husbands psoriassis. It's not all gone now but so much better its a small issue.

                  Good health to all!

                  ~* Rose *~


                  • #10
                    Good reminder, Rose! It's so TOUGH going GF! It's in EVERYTHING! Oh well, new habits take time.

                    The bread turned out wonderful. Loved it. We added some caramel chips, too and YUM.

                    Pamela, Type 3, strong secondary Type 4

                    "that through his death he might bring to nothing the one having the means to cause death, that is, the Devil;" Hebrews 2:14
                    "As the last enemy, death is to be brought to nothing." 1 Corinthians 15:26


                    • #11
                      Yes, it does take some time Pamela to get it all figured out! You'll get it! Are you noticing any differences being gf?

                      Laura, I forgot to comment on the facial thing...very interesting!!! My mom's side of the family has VERY prominent chins as do several of us. I've always thought the chins got more prominent as time goes on! I do wish two sisters of mine would take me seriously but they won't. Also as time goes on more of my cousins are being diagnosed with Celiac. A full cousin of mine just recently was diagnosed and many in her family are trying a gf lifestyle.

                      Kate, good for you for giving wheat free a try against what the doctor said! I went to a naturopath after being gf for a few years. I just went gf too as I didn't feel a doctor would be able to locate the source of my horrible daily stomach aches (not trusting...I know...). Coincidentally the stomach pains went away after being of wheat...that was enough of an answer for me.

                      ~* Rose *~


                      • #12
                        My friend has intolerance to the gluten. There are certain digestive enzymes that help with hidden gluten(like when you eat out and it might be lurking in the sauce or something. Here is one of them

                        "A happy life is just a string of happy moments. But most people don't allow the happy moments, because they're so busy trying to get a happy life!" Abraham-Hicks


                        • #13

                          I just wish listed that item. It looks like something that would be good to have.

                          Thank you!