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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Guest LisaB

How Long Have You Been Gf And How Do You Feel?

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Guest eileen

I have been gluten-free foor 4 months now and I do feel better. the diaherra has stopped and the abdominal pain has stopped. I do still have some bad day of fatigue.

I have learned so much from this site. It has be a life saver.

I hope that the years to come are better than the past 55years and I am feel so positive now that I can hear what others have been through, don't feel so alone with celiac disease.

THANK YOU

eileen :D

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Guest aramgard

Hey Darwyn, Welcome. I am 69 and holding, was diagnosed 3 years ago. I've had Celiac since I was around 14--with severe allergies first, then the dermatitis which the doctors thought was psychological--then alternating diarrhea and constipation. I was terribly thin until I broke my leg at age 38 and then began to gain weight. No one ever suggested Celiac disease until I saw Danna Korn on TV talking about her son. I went on the web looked at the symptoms and since I was dreadfully ill asked for the testing. After my doctor picked himself up off the floor because I tested positive, they did a biopsy and it also was very positive--no villi. When I think back about all the doctors who said I was a hypochondriac, I could just smack all of them. Stay with us, we've all had much of the same experiences as you with our health. And we really need to support each other, because the health care system really doesn't seem to care. Hang in there and feel better. Shirley

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Hi everyone,

I would just like to say that we all seem to have had similar experiences over the years trying to find out why we all felt different, bloated, ill, psychopathic, being labelled a hypochondriac, and simply misunderstood. It took me years to find out why I was suddenly constipated and then had 'the runs' quite badly. I laugh now at all the times I went to doctors with dermatitis, etc, etc, only to be told that there was nothing wrong, and to "be a good girl and go home and rest". I can laugh now as, I have the last laugh being diagnosed as a chronic celiac sufferer. In terms of the depression, I suffer that too. I hate having to explain to most people that I do not have a communicable disease that can be caught by simply being in my company. I have made it my ambition to try and educate the rest of the population about celiac disease, and that it has nothing in common with leprosy or SARS! :lol::lol: For all of those of you who are recently diagnosed, this is a life changing event. On the positive side, you WILL feel better, this is NOT in your head, you are NOT feeling ill to gain attention, you are NOT crazy! On the negative side, there will be persons who will not 'get it' and still try and feed you cake, biscuits, etc. You will feel isolated and a bit lonely sitting in the corner with your gluten-free lunch, trying to explain to your colleagues that you are not on a diet, but have dietary issues. Sorry, I sound very frustrated, but I am! Keep posting your messages on the board, and ask questions. It has been my experience that this is an individual thing, and some will have similar symptons and really suffer once they ingest gluten and others will not. I have found going to the gastroenterologist somewhat unpleasant as all he does is lecture me about my weight. He does not suffer celiac disease! I would also like to know if any of you have been diagnosed with other medical issues that are related to the celiacs. I have been diagnosed as having Osteopenia, which is the prelude to Osteoporosis. At the ripe old age of 35, this is a bit scary. I have also been told that having this disease also places us all at a 50% more chance of developing soft tissue cancers such as stomach, and bowel to name a few. Has anyone else been given this advice? Did any of you have to see a dietitian upon being diagnosed? I would like to know and if this was helpful. Talk to you all soon.

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Lily,

I believe I have read that the increased cancer risk applies to *untreated* celiacs, while those of us who are successfully healing on a gluten-free diet have about the same risk as the general population.

Since I am self-diagnosed, I don't know whether I have any associated conditions or not--but I wouldn't be surprised to learn that I have osteopenia/osteoporosis, especially since I experienced quite a bit of bone pain during adolescence. I am pretty sure I would benefit from some sort of specific nutritional supplementation, and my naturopath would be delighted to run tests to determine exactly what sort, but I can't yet afford the testing!

It's too bad that your doctor doesn't seem to realize that your weight will probably start to normalize on its own as your body heals. It is unfortunate that many people tend to be more free with criticism than they are with empathy and compassion!

On a happy note, my 89-year-old grandmother is trying really hard to wrap her mind around the idea that some foods are poisonous to my system. (It's difficult for her because she is as healthy as a horse--I certainly didn't get my celiac disease from her!) I was talking to her on the phone last night, and she said, "Oh, Sarah, I saw in the paper that the medical column was about celiac sprue, so I read it and thought 'yes, yes, Sarah has been telling me all of these same things about wheat, barley, and rye!'" That made me happy! :lol: I doubt she will ever truly "get it," but she's not so skeptical anymore, and that makes me feel better.

I hope you're doing well!

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lily....

Before I was diagnosed with celiac disease, I was in really bad shape... But mine seemed to be more neuro than anything.. Muscle pain, dizzyness, extreme cloudiness, ataxia, but I have had stomache problems since I was a child. I was seeing doctors for the completely wrong areas.. I would have chest pain and whenever i ate something, my heart would race... Just alot of wierd things... everyone told me I was crazy... I was diagnosed with osteopenia, and the docs were clueless as to why... I had another episode and landed in the ER where they told me that sodium and calcium are low... just go home and put more of those in my diet... I am a 24 year old college student, and pretty much lived on fast food... so i knew the problem was not lack of them in my diet.. (which i tried to tell them with no avail) I made myself an appointment with a GI, and they did a complete blood work up.. when the doc got the results, he called me to his office and told me that I had celiac disease... I was immediately like O MY GOD!! HOW LONG DO I HAVE!! lol.. having never hearing of it and being soo sick... I was terrified when I first found out I had osteopenia and they told me it could be leukemia... and that was just a few short months ago.. But I have done my best to be gluten free, and I have been with any exceptions of accidental ingestion... it's just so frusterating.. alot of things are sooo much better, but some things are beter for a few days and back again... So you're not alone in the osteopenia.. I read somewhere that 50 to 75% of people dx'd with celiac disease will have osteopenia or osteoperosis.. Has anyone taken the actonel and had any reactions?

~erich

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Guest LisaB

Hey guys about the osteoperosis, you may want to read this: http://www.celiac.com/cgi-bin/webc.cgi/st_...-52104104611.2b

I personally take Natural Calm which states that it is gluten free on the bottle and is taken in liquid form and is highly absorbable, I guess not all magnesium is absorbable. Anyway, it has helped me in other ways, my nerves are getting better for the first time in my life and it helps with constipation which is why I tried it in the first place and found out all the rest later.

Lisa

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Seven months ago, I broke out in hives that turned to blisters. My dermatologist ordered a panel of blood test but came back negative for celiac. Then, after six months of watching this spread over my body and scalp, he biopsied a blister that came back consistent with DH. I ran to the internet and discovered the celiac link. I called my gastroenterologist and scheduled the test. ( He was the same one that diagnosed me with IBS 25 years ago. ) He said it was a waste of time but ran the test which came back positive. Two weeks gluten-free and all the GI symptoms were gone. Unfortuately, I was now on Dapsone. My folates are still out of range and I am anemic because of the Dapsone.

Over the years there have been so many unexplainable medical events in my life. One of them was two years ago, when I started having retinal bleeding. I lost the sight in one eye. Since being gluten-free, that eye has stablized and the "good" eye has cleared. Good medical support is the most challenging thing about this disease. Finally, we traveled 500 miles to the University of Chicago celiac center where the right tests for absorption were done. Getting diagnosed early would have been a blessing. Now, my daughter can benefit from this knowledge.

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Guest aramgard

Yes, getting diagnosed early would have been a help. I was only diagosed also after insisting on the testing, which was confirmed by biopsy. But my first indication was "exzema" at age 14/15. The DH is a real problem. If I were you I would wean off the Dapsone as quickly as possible. Get yourself a cast iron skillet, which will help increase your iron stores and give you more energy. I know, that sounds really silly. But years ago I read a study that when women started using non-stick skillets, they became more anemic. As for the itching, I now use an over the counter cortizone ointment with aloe now and it works just fine. I've been gluten free for 3 years and the rashes are now beginning to subside. Good luck. It's a long hard course for us Celiac's but we will overcome. Shirley

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Hi, I'm Tyler. I have only been on the diet for 3 weeks now, but I can already tell the difference! Before switching my diet, I was tired 100% of the time and I had many symptoms like ulcers in my mouth, upset stomach, fatigue and I also had hives. Yah...not very fun. Anyways... my grandfather and my dad have Celiac so that's how I found out about it. But it is easy for me to be on the diet since my mom is used to cooking gluten-free meals for my dad.

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lily 80: I was diagnosised with celiac disease 4 months ago I also have DH, it took me almost a year to get diagnosised, after I lost 72 pounds within 4 months!! Was very sick DH rash kept getting worse, finally the ER Doc called a GI Specialist told about the rash and fast weight loss, vomitimg, diareaha/constipation, tired all the time, and increased liver enzyme level, the GI Doc said have her come in to my office first thing in the morning I know what this is. So I went in and he told me about celiac disease that next day he had blood work done and did an endoscopy and biopsied the sm. intestine. Sure enough it came back as celiac disease. I am doing so much better I'm still getting used to the diet so I have times I have gluten by accident , but its like 90 % better, I'm keeping food down!!! About the intestinal cancer, I want every one to read this and pass this on!!! My aunt had celiac disease for 30 years she did good on the diet for a long time but then went off of it, cheated alot here and there it adds up! She started feeling bad, had CTs, MRI, xrays, endoscopys, everything came back nomal, finally a doctor went in and done a laporscopy outside of the intestines, where they found cancer lymphomia it was around the liver and bile duct, they sent her to IN. to try to take the cancer out, thought they got it, but she got sicker , they went back in done another laporscopy and closed her right up, it had spead everywhere, they sent her home to let hospice take care of her, she died 2 months ago all of this took place within 7 months!!! It was a terible painful death, she told me to really stick to this diet, because a bite here and a bite there adds up to alot of damage. So please make sure your doctors don't just do the endoscopy to check on the progress of your celiac disease, if you notice even the littliest change in your norm health, ask for a laporscopy to look outside of the intestines, our liver, pancreas, bile dust, all are at greater risk for cancers, and to really see things well you need a laporscopy, remember she had the CTs, X-rays, blood work, MRI, everything kept showing up normal!!! Also I suffered from migraines for over 20 years, once I got on the gluten free diet- Don't get them, unless I have an accident! Amazing-huh? The best of luck to all God Bless and you all are in my prayers! Faith

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my blood tests (antibodies) showed up positive for probable celiac disease in late November, and my EGD tested positive in late December. after going gluten-free for several weeks, the improvement in how I felt was amazing, although I was still hugely fatigued. it just made such a difference not to be throwing up, or feeling like it, all the time, at every meal! and to finally know why that had been happening!

unfortunately, in about March, I started feeling almost as bad as ever. my antibody levels still showed significant gluten intake, even though I had been really vigilant, I thought. I found out a few things I had overlooked, and I'm being even more careful now (chapstick? otc meds? dental floss?) and things are improving.

the more I read about it and the more info I get, the better I feel. the same with cooking/baking. I never EVER made meals before. Now I've made the transition at least part-ways and it's empowering. I know I have a long way to go, but I finally have a lot of hope about the journey.

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    • Hello all! I am new on here, and I was wondering if it worth a look for me to get tested for celiac disease. I've been experiencing severe stomach aches accompanied by issues with loose stool, constant fatigue, lots of infections, worsening of skin on my face, frequent nausea, lots of trouble losing weight. I'm asking because I was feeling better at home from vacation after having a very rough semester at school and I'm not very good at keeping track of what I eat typically, but at home it is mostly vegetables and meat, with the occasional rice thrown in. This morning I had my first bagel in months and was extremely nauseous with severe pains and urges to run to the bathroom.  Do y'all think it is worth a try to get tested for celiac disease or some type of gluten intolerance? I'm so tired of being sick and not knowing why... Thank you <3 
    • LexieA, I agree with Plumbago. The symptom's of low stomach acid and high stomach acid are similar so it is easy to confuse the symptom's of one as the other. Dr. Myatt explains this well in her online article about stomach acid. http://healthbeatnews.com/whats-burning-you/ quoting "But My Symptoms Feel Like Too Much Acid…" Strong stomach acid and pepsin quickly "emulsify" fats and proteins, making them ready for the next step of digestion, passage into the small intestine. When these digestive factors are weak, food remains in the stomach for longer and it begins to ferment. Gas pressure from the fermentation can cause bloating and discomfort and can can also cause the esophageal sphincter to open, allowing stomach contents to "backwash" into the esophagus. Even though weak stomach acid is the central cause of this, even this weak stomach acid, which has no place in the esophagus, will "burn." This burning sensation confuses many people, including doctors, who then "ASSuME" that excess acid is to blame. Too little acid, resulting in slowed digestion, and gas which creates back-pressure into the esophagus is the real cause of almost all "heartburn" and GERD." so  you can see how they can easily be confused for each other. you no doubt are having stomach acid issues but it is because it is too little or too much? Timeline helps us determine which it is. If it happens when we eat something it is already to low to  digest the food we are eating. if eating something cause the heartburn/gerd to improve (especially meat) then your stomach acid is really too high especially if this happens between meals. because eating something will naturally dilute/lower the stomach acid pH. I wrote about my stomach acid being misdiagnosed on my celiac.com posterboy blog. ( have summarized most of what you need to know in this reply but the post is still there if you want to study it more for yourself. if your not taking an antacid now then taking BetaineHCL should improve digestion. If it does then raising your stomach acid by lowering you pH should improve your digestion. study on the best way to take powdered stomach acid before trying this. but I found taking 3 to 4 capsules in the beginning was easier than taking only 1 or 2 in the beginning .. .  until I could back it down to only needing one per meal or now none per meal to aid digestion. which is what we are shooting for.  The place where our body is now producing our stomach acid naturally at a healthy level. if you feel a "warm sensation" in your stomach you have reached a good level. I hope this is helpful. I only know it helped me. *** this is not medical advice but I hope you have as a good experience with it as I did. Usually peopledon't  have a trouble taking BetaineHCL unless they have an ulcer or already taking PPI's which are actually lowering  their stomach acid contributing to a viscous cycle of being locked into taking PPI's long term. if PPIs are taken for more than 6 months they can be almost impossible to stop/quit because of the acid rebound people experience when trying to stop taking them cold turkey and why they recommend stepping back doses by 1/2 gradually so they don't get overwhelmed by the stomach acid your stomach is  able to produce again naturally itself (hopefully). . . if taking betaineHCL jump started your ability to produce stomach acid again. . . if not taking betaineHCL (Powdered Stomach Acid) can replace what the body is missing much like taking a hormone. chris kresser has a good online article on this subject as well. https://chriskresser.com/what-everybody-ought-to-know-but-doesnt-about-heartburn-gerd/ he says it well. quoting chris kresser. "If heartburn were caused by too much stomach acid, we’d have a bunch of teenagers popping Rolaids instead of elderly folks. But of course that’s the opposite of what we see." **** this is not medical advice but I hope it is is helpful. posterboy by the grace of God, 2 Timothy 2:7 "Consider what I say; and the Lord give thee understanding in all things".  
    • Lex_ I agree with Ennis_Tx. You need to take some Magnesium.  It works best as a Magnesium Citrate or Magnesium Glycinate. Magnesium Citrate are easiest to find. Take it 2/day for the first couple weeks to see how much more energy you have. Then you can take it with each meal or 2/day and one hour before bedtime if it is not convenient to take it at work. If it is working you (right form of as a Magnesium Citrate or Glycinate) you will will experience vivid dreams. And wake up with enough energy to take on the day. **** this is not medical advice but it really helped my chronic fatigue symptom's. It is good for leg cramps too also known as charley horse's. posterboy,
    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
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