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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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  1. Celiac, Candida And Nystatin

    Hello Lisa......I am another Lisa.  I have met a lot of people with Celiac whose names are Lisa so it has been joked around here that having the name of Lisa is a symptom of Celiac Disease.  On to your question.......I have had candida and was diagnosed with Celiac in 2005.  Your doctor is correct......the two problems are not strangers to each other.  I believe that systemic candida problems can result from years of undiagnosed Celiac and the resultant leaky gut and annihilation of good gut bacteria. It's the good bacteria that keep yeast in check so it's not a stretch to think that one can be the result of the other.  I would add that I saw a real MD about this issue and not a naturopath. I had chronic thrush which would not go away until I used an anti-fungal and followed the candida diet. I initially felt fantastic after following the diet for about 2 years but then the Celiac symptoms reared their ugly heads and I got sick all over again.  No return of thrush but all those other horrible gastric problems that go hand in hand with Celiac. I did not take Nystatin for 2 years......just long enough for all my symptoms to go away and then the diet alone to bolster healing.  I also used DiFlucan for about 2 weeks when the worst of the die off was happening. Yes, these meds are not something to use without medical supervision but systemic candida can really do a number on you too.  I don't think many people understand how badly it can mess you up. The end result has been, between the treatment I did for candida and the diagnosis of my Celiac and following a strict gluten-free diet, that I can consume sugar without any return of symptoms.  I will say that my consumption of sugar is low and I am not snacking on sugar all day, like many people do.  I tend to crave a cookie or two in the evening, with my tea. I have taken probiotics for about 30 years now so keep up with that. I will pig out on Thanksgiving, like everyone else, and not worry about it. That means pie.  The restrictions this doctor has you on is really meant for the treatment phase. I eat cheese, vinegar and soy with no problems. I do not go overboard with sugar but enjoy some every day. I could not stay on that diet forever because I struggle to keep weight on so was strict with it for treatment only. I eased back into those forbidden foods gradually with good results. I think as you have the Celiac diagnosis also, once you get your gut back into good working order, you could try and introduce those foods when you find your gut feeling a lot better with no symptoms. Good probiotics are essential to repopulate your gut. The root cause of this problem is the Celiac so once that is taken care of, everything should heal.  Just don't tell the doc, if you think it will create an argument. I was successful in adding sugar back into my diet, in reasonable amounts.....not the amounts that mainstream Americans are eating it.  You will also find you can be satisfied with smaller amounts because you are going to feel so good after doing this, you won't want to return to feeling like crap from eating too much sugar.  The first real dessert I ate in a restaurant after about 2 years of having little to no sugar (only the sugar that happens from breaking down complex carbs) I was so buzzed, I could not sleep all night. That is what too much sugar will do!  One more not think you have to give up sugar for 2 years. You might heal faster.  I healed well enough but wanted to ensure the thrush would not return so I ditched the sugar for longer than I probably had to. Give it at least 6 months and see how you do but I am guessing that the undiagnosed Celiac had a lot to do with you relapsing.
  2. The DGP tests are for reaction to the gluten you are ingesting.  Needless to say, your body does not like gluten.  The Ttg IgA tests for damage to your intestine but the high number does not necessarily correlate with more severe damage. Some people have low numbers with a lot of damage at biopsy and others have high numbers with more moderate damage. Doesn't matter.........damage is damage. The Total IgA test is just to check to make sure you produce enough IgA antibody to make the test reliable. Some people are IgA deficient so they would have to revert to the IgG antibody testing or biopsy.  You definitely have enough antibody for testing. The EMA IgA is the slam dunk for Celiac Disease.  No other disease but Celiac will trip that for positive. With all of your testing in the high positive range, you have Celiac Disease and biopsy would be a choice matter for you.  I was in the same boat at diagnosis.  Very high numbers at diagnosis so I skipped the endo and never looked back. 10 years later and I am doing great!  But if you want to know how much damage you might have, then you will want to have the biopsy. I have never personally met any doctor in 10 years who doubted my diagnosis, once they saw my Celiac panel. Good luck and welcome to the club! 
  3. Are the 2 top tests the AGA IgA/IgG, to test for your reaction to gluten that you are consuming?  What are the reference ranges on each test you listed for the normal ranges?  It would help to know the answer on both. Looking at this without knowing the above, I would say you have been doing a good job of avoiding gluten overall.  Your Ttg looks like it might be in the normal range at a 5, after an initial diagnosis at >100.  Remember, your Ttg could have been much, much higher but they only report up to 100.  I hate that.  They did that to me also so I had no idea exactly how high it was beyond 100. So, to bring it down to a 5 in 2 years is good.  I do see that your numbers bumped up by a couple of points but that is such a slight difference, I am not sure it is worth worrying about it right now. Most labs use ranges for normal as follows.......<20 or < 10 will get you a normal reading, so you are not far off. You have brought your numbers down from pretty high values and it can take 2-3 years, depending on age and other factors. I would have her test for SIBO anyway if you have had a problem with heartburn. Then I would re-test your panel in 6 months and if those numbers are still slightly elevated, you'll have to go over your routine to see if you are ingesting gluten anywhere. Could they run the DGP test? That is a more sensitive version of the AGA Iga/IgG tests. Overall, I would not say this panel is something to freak out about but doing the DGP would be better to gauge dietary compliance and getting tested for other possibilities is a good idea.
  4. I found a store in NH that stocks this milk.  My father lives in NH and I am visiting this Christmas so I am going to try and buy some and test it out.  It's right on the way to his house.  I am not so much interested in becoming a milk drinker again but it would be nice to enjoy a good cream sauce or pudding now and again. I also could use all the calcium I can get!
  5. Dandelion.......I think you may have solved one of my life's greatest mysteries for the past year!    I read your post and had to admit...what the hell is a1/a2 milk?  I am in the States and thought you might be from Europe or the UK so I did a google to see what this milk was all about.  This is what I came up with....... There were many references to a1/a2 milk on the internet but I had never heard of it.  But here is my story so see what you think! I went on a trip to England in October of 2014, one of many I have made over the past 20 years.  I was diagnosed with Celiac in 2005 and have never really gained much dairy back.  I can eat harder cheeses and some yoghurt, in limited amounts but forget milk, pudding, or ice cream. I would get sick.  Soooooooo......I was in a restaurant in London on the day I landed and was so tired from jet lag but needed to eat. The restaurant is called Cote', a chain, and they have a very good gluten-free menu. French food....yum!  I ordered this fish pie because you can't get French fish pie in the States unless you make it yourself.  Of course, it is in a milk based sauce but I was tired and it was calling my name. Yes, it was delicious and I figured I would just deal with the discomfort so I could have this great meal. Well, the next day I felt fine.  Odd, I thought, as I could not do that at home.  So, I became more daring. I ate more dairy than I do here at home. I bought delicious milk from your local stores and it was not 1% milk fat that they have in the States but 4% full fat milk that was so creamy and good, I loved it. I never actually drank a glass of milk but used it freely in my tea. I ate meals with cream sauces at French restaurants, put milk in my tea, and had those great Cadbury's dairy milk chocolates I wish I could get here. I felt great the whole vacation and my gut felt even better than the good it feels when I am here in the States. As you can imagine, I was going crazy trying to figure out what the hell was going on that I can have dairy with no issues across the Pond and not be able to tolerate much at all here at home.  I then returned to reality and the first thing I did was trial some dairy and it was an immediate no go!  For the past year, I have still been trying to figure it out and now you post this thread that has got me seriously wondering if there is anything to this?  Maybe the reason I do well with cheese is that I buy a lot of imported cheeses from France, Britain, Spain and Italy????????  The company in the article says they are going to try and market the a2 milk in the States again so I am going to find out if I can buy this somewhere here and give it a go. I will say that I agree with the article.....the milk I had in England was so much creamier than the milk here. Of course, Americans are afraid of milk and drink this watered down stuff. That is what I like about Europeans....they are not afraid of their food.  After eating there many times, I have come to the conclusion that your food and milk is better than here in the States. It just is!    Thanks for bringing this subject up!
  6. NickiRose....with test results like this, you don't even need a biopsy, unless you want one.  You have Celiac Disease, based on these results. You failed all of the tests, except the Ttg IgG, which is not as specific for Celiac but useful when a person has IgA deficiency...which you do not.  Concerning the Endomysial Antibody Iga, no other disease will cause a positive on that one except Celiac.  Couple that with a positive Ttg, which is the test for intestinal damage and your Deamidated Gliadin high results, which tests for reaction to the gluten you ingest in your diet and I would say.....Welcome to the Club!  You now have an answer to all of your symptoms.  Should you decide on having the biopsy anyway, you could possibly have a negative biopsy because there is no telling how much damage you have accumulated and it is quite common for docs to miss the damaged areas if damage is patchy.  I would imagine that any good GI doc with Celiac Disease themselves, would diagnose based on these test results but you never know. Do not grieve too much as there is so much available today, there is absolutely no need to feel deprived. You will be amazed at how good you will feel and how many symptoms you have that are related to undiagnosed Celiac.  Good luck, whatever you decide to do!
  7. Hidden Gluten?

    MSG is safe and does not contain gluten.  It does not always agree with people but it has nothing to do with gluten. Most likely, the stew might have been too heavy for a newly diagnosed Celiac.  gluten-free foods can still make you sick until your gut has a few months to calm down from all the inflammation.  Or the MSG bothered you, as it does me....I never eat it.  Don't worry about this small happens to us all in the beginning and it will not interrupt your ability to heal.
  8. I found those cookies a week ago and am happy to report that my husband and I demolished a boxful over a week's time and I felt great.....NO PROBLEMS!  They are a little sweet but I am not used to eating boxed cookies.  They are delicious and taste like the Girl Scout ones. We have our Thin Mints back, people.........
  9. It is recommended that all those new to Celiac invest in one of the many great books out there, written by nutritionists or medical professionals that teach about label reading.  Many companies will not put the easy gluten free stamp on their products, even though they are gluten-free, due to the sue happy people who exist today. Can't say that I blame them. Modified food starch is gluten free unless labeled like this: modified food starch (wheat).  If there is wheat in the product, it must be declared and that is how it would appear on a label.  Most food starch is made from corn, at least in the US.  I have never been glutened by food starch and I have been gluten-free for 10 years.  The only time I have seen wheat labeled with it was on food products from Europe.
  10. How serious?

    Let me expand on what has been said about cooking pans so you won't think you have to have separate everything....because you do not!  Stainless steel or aluminum pans or other metals which are not porous can be shared, as long as you give them a good wash.  Teflon which has been scratched up needs to be replaced and cast iron should be dedicated to gluten-free only.  One is porous and the other, Teflon, is OK as long as it is not all scratched and old. Gluten can become lodged in the scratches, over time, and then you end up getting sick or becoming slowly symptomatic.  I know you said you are not symptomatic but as time goes on and you heal, you might find down the road you start to suffer symptoms if you take a hit. Utensils like wooden spoons or plastic ones should be replaced.  It is a good excuse to buy new stuff for yourself!  I usually never buy plastics and use metal utensils that can be easily washed but wooden spoons have to be dedicated to gluten-free use only.  I also only use glass bowls and containers for food storage at home because they keep food fresher longer than plastics do and I don't have to worry about anything.  You have to be careful and learn how cc works and not be paranoid. As for shared facilities, that is a lot different than shared lines. I am an extremely sensitive, diagnosed Celiac and will eat things from shared facilities but not from shared lines. Calling manufacturers to find out their processes for keeping food separate can be very helpful in making a decision on what to do.  Make sure to buy any books on the subject from good medical sources and not from celebrities....they tend to be the fad dieters who really don't have Celiac. You do have to take this very seriously for good health down the road.  But it can be done and gets easier with each passing year. I have been doing this for over 10 years and it's second nature to me now.  I rarely take a hit, at this point. Good luck!  
  11. Yes, I do take the recommended amount stated on the bottle.  It has something to do with the MCHC compound in the supplement but I need to get a better explanation for it.  I also try to get the rest of what I need for calcium from my diet.  I think it would be OK to take a higher dose if you need to build bone aggressively but you could always talk to a customer service person at Metagenics or ask your doctor, if you had additional questions.  Or, if you are comfortable swallowing pills vs. chewing them, you could try the extra strength version.  Metagenics make great supplements so I think any one of them would be good.
  12. I feel your pain!  It is very hard to deal with this because you do your best to improve your bones and then there isn't as much improvement as you want there to be.  I am 56 years old, went through early menopause at 45 and then was diagnosed with Celiac at 46.  I did bio-identical hormone replacement for about 4 years right after menopause because the hot flashes were so bad, I was freakin' miserable.  They helped with the flashes but did nothing for my bones.  I think you would have to take much larger doses to improve bone density with hormones BUT once you get past menopause, there is that damn cancer risk so I wasn't willing to use them for too long. As for vitamin brands, I use a lot of Metagenics vitamins.  A few doctors I have seen who practice functional medicine and whose opinions I trust (yes, they are real MD's) have said that the MCHC ingredient is one of the best things to look for when picking out a calcium supplement. I like Metagenics...they are gluten free and these are also chewables. I think for those of us who have compromised absorption, it can't hurt to use a chewable as they are easier to absorb. Plus, I got sick and tired of swallowing horse pills. These are chocolate too....not bad tasting at all.    I also take 5,000 IU per day of Vitamin D because I live in the Northeast and don't get a lot of sun so I need all the help I can get. I take a more generic brand of those from my doc but am thinking of switching to Metagenics to see if I do better with that.  I also take K2 and buy those at my local health food store.  K2 is expensive so I tend to buy cheaper brands but they still have to be gluten free, of course. Now, these vitamins are not cheap but they are not too outrageously expensive either. I have used Metagenics for a long time but was using a non-chewable type of calcium, which they also offer.  My last bone density was about 2-3 years ago and I had stopped the progression of osteo in my hip and spine, which my doc was thrilled with. I was pissed because I guess I thought that with all the stuff I was doing, it should have been better. That's when she pointed out that for someone my age who had gone YEARS without a diagnosis and suffered severe malabsorption, weighs in at 112 pounds and is post-menopausal, my expectations were too high and I should be happy that the disease process was stopped. OK....I get it now.  So....I switched my calcium to the chewable kind and upped my intake of all those green veggies that are good for bones.  I exercise twice a week in the gym with a trainer but cannot increase that amount until I retire. Maybe I need to exercise 3-4 times per week to actually gain a little bone but with all the time I spend on food prep and working a full time job, there is only so much time in a week.  I have not been in any hurry to repeat the bone density test because if I do too many of them and I still see no reversal in the right direction, only the stoppage of the destruction, it will depress me.  I don't know what else I could do to make things better. primary care doc did not recommend that I go on bone meds. She said I was too young, the problem of long bone fractures from the meds are a real threat to a younger person taking those meds and they are also an irritant to the GI tract. Just what we Celiac's need, huh?  I also have had 3 dental implants, with more on the horizon.  Guess what?  You have to sign a waiver when you have an implant done because these are the people who run the biggest risk of jaw necrosis when on bone meds.  They can cause failure of the implant. My implant guy was happy I refused to take them as they see the results of what happens when women are goaded into taking them by their doctors. Listen to your intuition.  If that little voice is telling you no, listen. I also know that healing is a continual thing in us older folks. I have been gluten-free for 10 years and am VERY strict with my diet. Maybe it takes much longer for us to see results because of our age. You may want to see a bone specialist to rule out everything else that can cause osteo because you can still stand your ground with them when it comes to meds. The halting of the progression of my osteo came only after I started doing weight training at the gym.  The work out is hard. I try and lift as heavy of a weight as I can manage for the particular exercise I am doing without doing harm to myself. For each exercise that you do with weights, you should get to the point where at the end of the set, you feel like you cannot do one more. Jello muscles, I call them!  If you have any more questions, feel free to ask away!        
  13. As a diagnosed Celiac who is post menopausal with osteoporosis in my spine, I can tell you that if you fall into my category, the vast majority of cases cannot be reversed.  Osteopenia is different...that is earlier stage and can be improved. But HRT will not do much at all, except improve the hot flash problem....and those will return when you stop using HRT, for awhile anyway. The goal is just to stop the progression of osteoporosis, as most doctors who know about this will tell you. I will never take any meds for it because they can cause long bone fractures and problems with jaw necrosis if you have ever had dental implants done. I eat a good, bone friendly diet and do weight training in the gym, along with the right supplements of calcium, magnesium and Vit.D with K2 added. I do not worry about it anymore because all that stress will only make things worse. If you tone your body and build muscle as best you can, that goes a long way to support your bones. Some people might have miniscule improvement but osteoporosis is almost impossible to reverse in older, post menopausal women...especially with Celiac Disease. There is no magic bullet for this, unfortunately. I have stopped the progression of mine, which is huge apparently...or so the docs seem to think. I have also never broken any bones. Just remember to do weight bearing exercises...those which shock the bone. Walking, running, and weight work.  Swimming and cycling do not build bone, although they are an excellent cardio exercise. Above all, do not obsess about this. You do the best you can and let it go. Just be wary of the meds because they can and do cause other problems that can be just as bad as osteo.
  14. How sensitive am I?

    There is some genetic involvement with Celiac Disease that can make a person more highly symptomatic.When I had gene testing done after my diagnosis, it revealed I have a double DQ-2 and the notes on the testing results indicated that the 2 particular genes I have were associated with more severe cases of Celiac. I presented with classic Celiac........the skinny, malnourished kind.  I have been gluten-free for 10 years and although my symptoms when glutened are still pretty severe, I have noticed with healing that the duration is shorter.  I can go from being extremely sick and symptomatic to feeling almost normal again in 2-5 days. The longer lasting symptoms are the neuro ones.  The GI symptoms go away more rapidly now.  I don't know if this means we are more sensitive or that we are more symptomatic than some. People who are mostly asymptomatic still have the same damage done to their gut as we do but luckily, they don't seem to present with such severe symptoms. I know this probably didn't answer your question all that well but it's what I've learned/observed over 10 years. What I do know is that you can heal well and gain your life back if you are careful with your food and cc issues, regardless of the hype about not healing that is all too prevalent on the internet today.  I am no spring chicken yet I am doing worlds better than I was even 5 years ago. 
  15. Valtrex DH & HSV Question

    Valtrex is an anti-viral and that is why it is prescribed for use in HSV as it is a virus.  DH is not a virus but an autoimmune reaction to gluten and only occurs when you ingest something with gluten if you have Celiac Disease.  The only treatment for DH is a strict gluten-free diet...... Valtrex will not work on DH. Do you have Celiac or have you been tested for it? I would imagine that anyone with DH could also contract HSV so it is possible to have both.