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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.

My Celiac Life Story.
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9 posts in this topic

Welcome. I am glad you have found relief. As long as you do not need the reassurance of a dr to tell you what you already know, I see no need for testing. Remember too, the vast majority who are gluten intolerant will not be dx as celiac, for various reasons, so there is no guarantee a test would be psotive for you. Gluten intolerance is every bit as real as celiac, and should be viewed as seriously. Clearly, you don't tolerate gluten. I hope knowing that will be enough for you to commit to what is a huge lifestyle change. If you take the diet seriously, eventually others will too. However, if you are wishy-washy, or cheat occasionally, or even less than super strict, not only will others dismiss the seriousness of your illness, but they dismiss the seriousness of OUR illness, and it makes it very difficult for us to get "safe" food at restaurants, etc. I hope you will stay committed to being well- you will find it really feels quite wonderful! :)

Welcome Pro, I'm not an MD, but I think you can cross off Failure to Thrive....

Welcome Pro. Many of us are self diagnosed due to "failing" the not so perfect celiac testing. Failing a test for celiac doesn't make our symptoms go away though, or our need to eat gluten free.

Lactose intolerance is a common problem for us, especially at the beginning of the diet. But it does go away in time for some. .Whole foods cooked at home are a good way to start the diet.

Since celiac is hereditary it wouldn't be a bad idea to suggest the other family members get tested though. It might also be worthwhile to look at the family history of diseases. People with celiac tend to get other auto-immune disease more often the most people do. So a family history of thyroid problems, arthritis, diabetes etc might be an indicator.

Well, somebody asked if I had made a thread with my own story and I hadn't, so figured I would go ahead and start one. I've been doing a ton of research on this site for the past week or two, and it has been so extremely helpful to me. Self diagnosing here, but I believe I have celiac disease. I've never noticed major problems with eating anything gluten before, so it is a pretty big surprise to me, but it makes sense that the stress of my wedding and being drug all over Disney World is the reason that my symptoms were exacerbated.

"Experts think that surgery, pregnancy, childbirth, a viral infection or severe emotional stress may trigger the beginning of the disease in people who are genetically prone to it."

As of this post I am 22 years old, 5'5, and 160 lbs (about 30 lbs more than normal). Let's begin with a list of symptoms I have that I believe tie into celiac.

Bloating / Gas, Diarrhea

Constipation

Fatigue

Itchy Skin Rash

Tingling/Numbness

Mouth Sores

Joint Pain

Delayed Growth

Poor Weight Gain

Thin Bones

Infertility (have not been tested, but am pretty darn sure)

Headaches

Depression

Irritability

Discolored Teeth

Anxiety

Short Stature

and Brain Fog

-- I am sure I am missing some things.

At first I thought maybe I was making a big deal out of nothing, surely I don't have celiac, I mean I've eaten gluten my whole life, and surely most of that list can be caused by other things as well......

Then it kept getting worse.

The first thing I remember noticing that made me do research and landed me here because it was abnormal to me was numbness/tingling in one of my hands. As we were driving to Florida I noticed this and it kind of freaked me out a little bit. Then, almost the whole week (my entire honeymoon) I was extremely tired, cranky, and hurt just about all over. The back of my foot, and my wrist were both hurting really bad most of the trip. I had the numbness/tingling in my leg. I was having all kinds of problems every time I ate. I wouldn't be able to finish my meal because I would immediately bloat, lose my appetite, and have to go to the bathroom where I would stay for 30 minutes or so. I thought it had to be the food, but my wife wasn't having any issues at all and we were eating the same things. Then my buddy convinced me I probably just had traveler's stomach or something like that. I'll just add in that I am pretty short, 5'5. I have gained about 20-30 lbs over the past month or two putting me at 160lb - which is pretty strange since I have been pretty skinny my whole life, actually I have always been pretty malnourished and we always thought it was just my metabolism. I usually weigh 120-130. Obesity runs pretty strong in my immediate family as well, so it was even more odd I thought, that I was skinny regardless of what I ate.

Then it got to the point where I wouldn't be able to sleep at night because I would be in so much stomach pain while it "rumbled" away. I would run myself a bath just to try and make it bearable. The morning before we left Disney (shortly after I realized something was very wrong) I decided to have a gluten free breakfast at the same place we ate 90% of the time, just to see what happened. Nothing, no pain at all. I thought, okay, my brain is messing with me now, the bug must be gone or something. At this point I decided I was just going to tough it out so that I could test for celiac. So on the way home we stopped at a chicken place, and I got two chicken legs and a biscuit. Well, needless to say, I didn't make it to the biscuit thankfully. This time it really got me good -- My stomach felt HORRIBLE. I was trying to lay down in the car and take my mind off of it, but it was just too much. I became very nauseous to the point of having my wife pull over and get me pepto bismal. I felt like a little kid when she told me the cashier asked if her little one's tummy hurt (we don't have kids yet for the record). She said "no, my husband, the big one's tummy hurts." lol. Here I am having just got married, and my wife has to go into the store and get me bismal tablets because my tummy hurt... and I couldn't open my eyes while she drove without feeling the need to hurl. I have also noticed that anything dairy has really been messing with me as well, which is also new for me.

So I decided at this point I didn't really have the money for testing to begin with and no health insurance. I thought maybe I had something besides celiac because I get reactions so quickly, but then found on the net that celiacs actually have faster reactions to gluten than intolerant people. So instead of waiting around in pain every time I ate for it to stop, I chose to go Gluten Free. Honestly by the third or fourth day I noticed my back pain was completely gone, i felt confident with way less anxiety than normal, and my face is really clearing up a lot. I am usually broken out all around my mouth and neck and only have maybe 1-2 spots right now that are left and are clearing up. I felt motivated for work, had a rush of energy and cleaned the entire house haha.

Then something happened.... I overlooked a label on some cheddar popcorn (my subconscious (AKA the devil) was telling me "ehh.. you don't have celiac.. you just had a bad run at disney, i'm sure you are better now") that looked fine and dandy except for "Made on a line with wheat and peanut products"- which I went back and found after I spent about an hour in the bathroom at work with my stomach in a vice grip. I have felt brain fog, weak, and tired since, but this was only 2 days ago. I can't wait to see how I feel in a few weeks, or months.

I also think celiac is the reason I did so terrible in school after 4th grade or so and dropped out in the 9th grade. I would be so tired every day and miss the bus or have my parents call because I didn't ever feel energetic enough to do anything there. Then I joined the navy, which lasted a year. My symptoms became much worse in boot camp when I first got there. I had major depression almost the entire time I was on active duty (about 1 year). I had never noticed too much of anxiety problems before, but during/after boot camp I have had nothing but problems with it. So that's why I got discharged, because I was suicidal and more or less crazy by a years time.

Anyway, I am pretty sure I have celiac and don't need a test to tell me so. Obviously eating gluten free is good for me, so whether I have it or not I am not going to pay a doctor to tell me to keep dieting. Everyone out there that doesn't have problems is going to be skeptical, because they can't feel it for themselves. They can call me a hypochondriac or whatever they want, but all I know is gluten free keeps me from hurting. I can only associate gluten products with pain now, and it grosses me out. Just eating that popcorn has made me feel disgusting since, like I ate dirt or something.

I really wanted to say I have a new respect for all celiacs. I never even heard of this before and I now know what pain you go through not only physically, but mentally when you eat gluten. From people's ignorance at restaurants "what do you mean you don't want a bun??", to some doctor's ignorance at hospitals as I have seen a lot of on here. We can't forget the skeptical family and friends that think we are all just complainers.

I will keep you all updated as I continue to eat gluten and dairy free. Thanks for dropping by my thread and I appreciate any kind words in advance.

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Welcome. I am glad you have found relief. As long as you do not need the reassurance of a dr to tell you what you already know, I see no need for testing. Remember too, the vast majority who are gluten intolerant will not be dx as celiac, for various reasons, so there is no guarantee a test would be psotive for you. Gluten intolerance is every bit as real as celiac, and should be viewed as seriously. Clearly, you don't tolerate gluten. I hope knowing that will be enough for you to commit to what is a huge lifestyle change. If you take the diet seriously, eventually others will too. However, if you are wishy-washy, or cheat occasionally, or even less than super strict, not only will others dismiss the seriousness of your illness, but they dismiss the seriousness of OUR illness, and it makes it very difficult for us to get "safe" food at restaurants, etc. I hope you will stay committed to being well- you will find it really feels quite wonderful! :)

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Welcome Pro, I'm not an MD, but I think you can cross off Failure to Thrive....

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Welcome Pro. Many of us are self diagnosed due to "failing" the not so perfect celiac testing. Failing a test for celiac doesn't make our symptoms go away though, or our need to eat gluten free.

Lactose intolerance is a common problem for us, especially at the beginning of the diet. But it does go away in time for some. .Whole foods cooked at home are a good way to start the diet.

Since celiac is hereditary it wouldn't be a bad idea to suggest the other family members get tested though. It might also be worthwhile to look at the family history of diseases. People with celiac tend to get other auto-immune disease more often the most people do. So a family history of thyroid problems, arthritis, diabetes etc might be an indicator.

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Welcome. I am glad you have found relief. As long as you do not need the reassurance of a dr to tell you what you already know, I see no need for testing. Remember too, the vast majority who are gluten intolerant will not be dx as celiac, for various reasons, so there is no guarantee a test would be psotive for you. Gluten intolerance is every bit as real as celiac, and should be viewed as seriously. Clearly, you don't tolerate gluten. I hope knowing that will be enough for you to commit to what is a huge lifestyle change. If you take the diet seriously, eventually others will too. However, if you are wishy-washy, or cheat occasionally, or even less than super strict, not only will others dismiss the seriousness of your illness, but they dismiss the seriousness of OUR illness, and it makes it very difficult for us to get "safe" food at restaurants, etc. I hope you will stay committed to being well- you will find it really feels quite wonderful! :)

Thanks for your kind words. I am definitely committing to the diet, when I think of gluten foods I think of the pain that accompanies them now - which makes it pretty easy to steer clear of. That one little mishap with the popcorn was enough for me to say, "ok - all done". lol. I've decided eating out is pretty much impossible unless I go to PF Changs. Thanks again for the reply!

Welcome Pro, I'm not an MD, but I think you can cross off Failure to Thrive....

Haha yes, sorry I missed that one.

Welcome Pro. Many of us are self diagnosed due to "failing" the not so perfect celiac testing. Failing a test for celiac doesn't make our symptoms go away though, or our need to eat gluten free.

Lactose intolerance is a common problem for us, especially at the beginning of the diet. But it does go away in time for some. .Whole foods cooked at home are a good way to start the diet.

Since celiac is hereditary it wouldn't be a bad idea to suggest the other family members get tested though. It might also be worthwhile to look at the family history of diseases. People with celiac tend to get other auto-immune disease more often the most people do. So a family history of thyroid problems, arthritis, diabetes etc might be an indicator.

Good points. I definitely can't afford 10 years of misdiagnosing :P Very glad to hear that the lactose intolerance goes away, I looove dairy :D I've talked to my family about it, but nobody thinks they have it (of course). Some of them have arthritis, and some diabetes.

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Thanks for your kind words. I am definitely committing to the diet, when I think of gluten foods I think of the pain that accompanies them now - which makes it pretty easy to steer clear of. That one little mishap with the popcorn was enough for me to say, "ok - all done". lol. I've decided eating out is pretty much impossible unless I go to PF Changs. Thanks again for the reply!

Haha yes, sorry I missed that one.

Good points. I definitely can't afford 10 years of misdiagnosing :P Very glad to hear that the lactose intolerance goes away, I looove dairy :D I've talked to my family about it, but nobody thinks they have it (of course). Some of them have arthritis, and some diabetes.

Family members, who may have celiac or gluten intolerance are usually in denial. Little piece of advise here. If they haven't personally seen you suffer and experience your newly found change, you may want to "feed" them your celiac knowledge in small pieces, because they tend to shut you out, if it's too much at a time.

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With all due respect, I think that anybody who tries to self-diagnos a medical condition is playing with fire. What if all those problems arent from gluton but from cancer? If you have any ability to see a doctor about those problems I think you should. If I had self-diagnosed myself two years ago,I would not be here today. I'm just saying, or perhaps begging you, to see a doctor. Because , what if your self-diagnosis is wrong?? Some things to think about..........

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With all due respect, I think that anybody who tries to self-diagnos a medical condition is playing with fire. What if all those problems arent from gluton but from cancer? If you have any ability to see a doctor about those problems I think you should. If I had self-diagnosed myself two years ago,I would not be here today. I'm just saying, or perhaps begging you, to see a doctor. Because , what if your self-diagnosis is wrong?? Some things to think about..........

I really can't afford to go see the doctor at this point in my life. I appreciate your concern, but doesn't it matter that I don't have the symptoms when I eat gluten free? Then when I do eat gluten I get them again...? When I am not eating gluten I feel fine, no issues that make me raise an eyebrow at all.

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If your symptoms go away when you are gluten-free, and come back when you eat gluten, then I would feel safe saying it isn't cancer!

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But I want to say why while you so want it to be "Celiac" and not the "C" word I think Pellagra should be considered as a differential diagnosis. I say this and repeat it to those who will listen.  Niacinamide helped me. This article on celiac.com explains why this might be so https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html and if taking a b-complex 2 to 3 a day (and Niacinamide) for a couple months greatly alleviates many of your GI problems then you also  have had pellagra co-morbid and the doctor's don't recognize it in a clinical setting today .  . .  mainly because they don't know to look for it any more today. I wrote about how to take niacinamide in my blog post about this topic so I wouldn't have to retype it several times. I want to quote from the discussions section the heart of most good research from the American Journal of Clinical Nutrition research article linked in my posterboy blog thread about how to take niacinamide and why you would want too Faq. poster here again for those who want to do the deep research from their discussion section. http://ajcn.nutrition.org/content/85/1/218.full "Random spot urine sampling, together with the measurement of 1-MN and 2-PYR concentrations, has been suggested as an alternative because it avoids these issues and would provide a guide to status (22). However, the ratio of these metabolites has been shown to vary according to the time after the last meal because they are sequential intermediates on the same catabolic pathway (21). This makes the ratio an intrinsically unstable variable for use in population surveys; in the present study we chose to use cutoffs previously established for the excretion of individual metabolites expressed relative to creatinine. The subjects whose excretion fell below the established cutoffs for either metabolite were considered to be deficient." A little technical but essentially we soo need b-vitamins that even if you have a test for low vitamin b-3 the amount of the b-3 in your meal (f you have not fasted before the test) can cause us to test in a low normal range thus making taking of the b-vitamin a self test of cause and effect. Did you get better after taking Niacinamide then if taking Niacinamide helped your GI problems you were low in Niacinamide. This is typically a 24 hour test and most people don't fast 24 hours before going to the doctor and will often fail this test since our body has absorbed enough from our food to help us pass the thresh hold set at the minimum level. Here is why it is good to take a b-complex with Niacin/niacinamide because it interacts with other nutrients. https://www.ncbi.nlm.nih.gov/pubmed/3804611/ including b-6 which is one of the metabolites measured to determine a pellagra diagnosis. see this mdguidelines link that summarizes this well. http://www.mdguidelines.com/pellagra where they say  quoting there treatment section "Treatment consists of high oral doses of niacinamide, a form of niacin. Usually, supplements of other B-vitamins are also given because many individuals with pellagra also have low levels of B1, B2, B6, and pantothenic acid." and possibly Zinc if the other research is correct. ***** this is not medical advice just my research on the topic and experience with taking Niacinamide to treat many of my GI problems. Prousky wrote about this 15+ years ago and still people are not aware of this fact that Niacinamide treats digestive problems. http://www.yourhealthbase.com/database/niacin-treats-digestive-problems.htm and if they are are aware of it are they are slow to accept that a vitamin could help with their GI problems. the gluten free works site also has a great article on this topic. http://glutenfreeworks.com/blog/2010/06/23/niacin-vitamin-b3-deficiency-in-celiac-disease/ while it is recognized that celiac's have many of these deficiency it is not well accepted/understood today low Niacinamide alone can treat many GI problems though the research is 15+ years old .  . . still people suffer. I don't want you to have pellagra or celiac but I want you to be aware there is a another valid differential diagnosis that can make sense for many people seeking to be diagnosed as a celaic disease patient. because people with pellagra often get better very quickly it is worth a try or least some of your time to research it some more. ***again this not medical advice.  Please check with your doctor about this possibility but don't be surprised if he doesn't know much about pellagra and probably less than he does about celiac disease. Dr. Heaney talks about why this is today on his blog about the 4 D's of Pellagra and why doctor's don't recognize it today in a clinical setting. http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ good luck on your continued journey. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God,
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