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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.

Looking For Motivational Improvement Stories
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So I am looking for some motivational/positive "improvement" stories - how have you improved since going Gluten free. Has the improvement been significant? What was the before and the after?

I am not even sure I have gluten intolerance, but what I am sure of is that I am not healthy - and no matter what I do have, I need to take better care of myself (for my own peace of mind, peace of body, and sanity! LoL)

Thanks, in advance :)

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Im only about 3.5 months in. But not a single migraine since I stopped the gluten. Not one. And I used to get at least 2 a month. So it is like I have gained 14 days of my life that I would have lost to misery. And BM's are down from 5/6 a day to 2/3 and I am still improving. I find that my neuropathy waxes and wanes and does some strange things which I believe are signs of healing. My vertigo is slightly improved. But with neuro, I have to be very patient.

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Pre-diet -- Hospital for 11 days, missed 10 weeks work. SEVERELY anemic. Liver enzymes off. Unable to walk by myself or think. Losing weight rapidly. Bad DH. Mouth blisters. Daily headaches. Flatulence that could clear whole rooms (but little diarrhea).

Post-diet -- All gone, though it took almost 10 months to fully recover my energy.

richard

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First , of course, my stomach aches, gas and bloating are gone. I have...so far....lost 20 lbs. (YAY!!) My mind is so much clearer and sharper. It's strange, because I love to swing dance, and I've suddenly become much better at following guys leads! My mind can focus much better than before, and I have so much more energy! In the past I had so many projects I wanted to get done around the house but I just couldn't seem to pull it together enough to get anything done. I felt like I was lazy but deep down knew that wasn't it. I could have one good day and get a lot done, then be useless for the next 2 or 3. I remember a time when any time I took a shower I would be so exhausted I would have to go lie down. Of course even though I consider my energy level to be so much better, I also realize that I am comparing it to my past zero energy. I still am not what I consider *normal*, but I'm excited about how far I've come. My fibromyalgia is starting to improve a little. I no longer need meds for GERD, but had a recurrence until I realized I needed to cut the sugar.My blood pressure has gone down. Was on meds for high blood pressure for about 10 years, and now I'm off but monitoring my BP diligently. It is now lower than what the MD had me at with medication. And something weird I just realized the other day........my nails are extremely hard. Now I've always been lucky to have strong nails, but now they're like steel! It occurred to me that they've gotten much longer than usual with none of them breaking or peeling. I tried to file the ends down just to shorten them a little and totally destroyed the emory board!!!

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First , of course, my stomach aches, gas and bloating are gone. I have...so far....lost 20 lbs. (YAY!!) My mind is so much clearer and sharper. It's strange, because I love to swing dance, and I've suddenly become much better at following guys leads! My mind can focus much better than before, and I have so much more energy! In the past I had so many projects I wanted to get done around the house but I just couldn't seem to pull it together enough to get anything done. I felt like I was lazy but deep down knew that wasn't it. I could have one good day and get a lot done, then be useless for the next 2 or 3. I remember a time when any time I took a shower I would be so exhausted I would have to go lie down. Of course even though I consider my energy level to be so much better, I also realize that I am comparing it to my past zero energy. I still am not what I consider *normal*, but I'm excited about how far I've come. My fibromyalgia is starting to improve a little. I no longer need meds for GERD, but had a recurrence until I realized I needed to cut the sugar.My blood pressure has gone down. Was on meds for high blood pressure for about 10 years, and now I'm off but monitoring my BP diligently. It is now lower than what the MD had me at with medication. And something weird I just realized the other day........my nails are extremely hard. Now I've always been lucky to have strong nails, but now they're like steel! It occurred to me that they've gotten much longer than usual with none of them breaking or peeling. I tried to file the ends down just to shorten them a little and totally destroyed the emory board!!!

ShayFL & LoveGrov, thanks for your replies!

CurlyFries ~ When I read your response I started tearing up. Granted, I do have other autoimmune issues, but am not diagnosed (or following) any gluten sensitive diet/lifestyle, but I relate well with what you said about how showers made you so exhausted you had to take a nap (that was the part I started tearing up at!) I am 28 years young (but I feel OLD!) and I recently had to buy a walking cane because I often cannot walk without aid (I probably don't use my cane as much as I should, though.) I am also debating buying a shower chair, because I too cannot shower without being completely drained. I often take showers sitting down in the tub, or I will skip days showering because I just don't have the energy to do so. I also often feel like I'm lazy, even when I know I'm not, I feel like I could be doing better (even though I too deep down know, if I could I would!) My GERD is also awful, and I take prevacid every day. I know if I don't, I'm in big trouble and will pay for it (three-fold!) later <_<

I'd be interested in talking with you further, on PM maybe?

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Bloating, nausea, eczema, brain fog, fatigue, headaches, extremely severe acne, all gone (sometimes they come back, but I' ve had my accidents..........)

Meline

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In the past I had so many projects I wanted to get done around the house but I just couldn't seem to pull it together enough to get anything done. I felt like I was lazy but deep down knew that wasn't it. I could have one good day and get a lot done, then be useless for the next 2 or 3. I remember a time when any time I took a shower I would be so exhausted I would have to go lie down.

exactly the same thing....and the worse part is that people think you are just lazy......I even didn't want to have a shower cause I felt like I would collapse.

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So I am looking for some motivational/positive "improvement" stories - how have you improved since going Gluten free. Has the improvement been significant? What was the before and the after?

I am not even sure I have gluten intolerance, but what I am sure of is that I am not healthy - and no matter what I do have, I need to take better care of myself (for my own peace of mind, peace of body, and sanity! LoL)

Thanks, in advance :)

Hi!

My wife, kristen, was diagnosed with Celiac Disease a few years ago, but she had a really tough time with the major lifestyle change. She was very depressed, but after a year she decided she was going to accept the disease and become 100% gluten-free. I was truly inspired by her determination to "overcome" the disease, so we launched a social website were people post their inspirational stories of perseverance. The site is called Valley Rally. When you are there, do a search for "Celiac" and you will find numerous stories posted about other's struggles and success with the disease.

I wish you the best!

Take Care.

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Going gluten free has changed my life. I had never heard of Celiac Disease until my son was dx in March. He was a sick little boy but we didn't realize how sick he was until he started the gluten free diet. He has gained 7 pounds and grown many inches (I'm not sure how many but he has outgrown his jeans) in only 4 months. A few days ago my son and I were watching family videos and I was shocked at how he looked just a year ago. He was so small, skinny, and pale. He is a different kid now, the picture of health. I thank God every day for the Celiac dx and the gluten free diet. It gave me a happy, healthy son.

As for myself, I went gluten free with him about 4 weeks ago. I was dx with IBS when I was 14. My symptoms have varied as I've gotten older (I'm 33 now) but they increased a lot with the birth of my daughter 11 months ago. I was miserable. It was getting so bad that I was staying at home for fear of not getting to a restroom quick enough if needed. I was tested for Celiac a few months after my son and my test was negative. I decided to go completely gluten free with him anyway. Within a week I could tell a difference in my energy level. Now, after 4 weeks, I have not had to run to the bathroom once! My tummy bloating has gone away. I don't need an afternoon nap anymore. My headaches are completely gone. My skin even looks better. I have dx myself as gluten intolerant. I am being tested for food allergies next month just to be sure all my bases are covered but I am certain it's gluten that was making my life miserable. I can't imagine ever eating gluten again.

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Since this thread is in the Behavior section, I'll start with that. I was taking 2 Ritalin ER per day for about three years, including the two years in grad school. I couldn't function without them. I was also taking antidepressants off and on for about eight years. (Mainly SSRIs) Mostly that was for depression, but some anxiety as well. I've been off those drugs since going gluten free. I've only needed maybe 15 Ritalin pills in the last 2.5 years, and most of those have been during the week following bad glutenings. I stopped needing antidepressants probably one year after going gluten free. This is probably the most dramatic change, and the reasons why my psychiatrist is the most supportive of diagnosis through elimination diet. He's seen the results even though I didn't pass some of the blood tests.

I also solved the 3 year puzzle of my chronic anemia. I improved my allergies, although to some extent they are more sensitive now. I've improved my fatigue and acne. It's pretty much changed my life.

Oh, and have I mentioned my stomach? I lost a pants size even though I gained 5 lbs. Crunches actually work now. I can't say I have a flat stomach now... I don't think I ever will. But I don't look 5 months pregnant anymore.

All this stuff comes back with a vengeance for about one week when I get glutened. Then, after one week (two if it's really bad) it magically goes away again.

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I was very sick my junior year of college. Lots of D, lost lots of weight, and lots of gas. I was lucky to be diagnosed 9 months after becoming ill. I have be able to stay basically healthy because of the quick diagnosis for 30 years. No other autoimmune diseases, I have been able to work full time and have a child. I had a routine colonoscopy along with an endo when I turned 50 last year and all the results were normal.

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I have been gluten free for 30 days as of today! And it has been the best 30 days I've had in years!!! My family and myself have suffered for years with my depression, irritability, fatigue, constipation, SEVERE PMS, bloating, abdominal pain, heartburn, flatulence, joint pain, insomnia, headaches, ear pain for 2 years, you name it. Thank to God that He answers prayers! Finally, gluten has been my problem. I knew deep inside the person I had become was not the real me, but the Drs. for years have always said there was nothing wrong with me. I finally took matters into my own hands and God lead me to the right person to diagnose me. A gluten free diet and the proper supplements I feel awesome already. My ear quit hurting 24 hours after I stopped eating gluten and the rest of my problems have been steadily decreasing. I am so excited that it's only been 30 days and I feel this good, I can't wait for 90 days! I don't see this as a disease, allergy etc. I see this as a rebirth to the person I really am. YAY!!!!!!

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For me this Diagnosis has been a Great thing! I've been a mystery case my whole life, it has not been easy. This mew diagnosis gives me HOPE!

30 days Gluten Free:

* more energy that I have ever had, seems to be building by the day!

* the tummy I've had all my life is gone, looks like im getting a six pack!

* I realize the nausea I've had all my life is because I've been eating food I'm not supposed to, so now instead of an everyday/ all the time thing... it's a clue as to what I am and am not supposed to eat.

* putting on weight... but thats a good thing.

*I'm able to share this info with my family, several of them have similar symptoms and major allergy problems...my experience is helping them pin point their trouble foods...and feel better

* a diagnosis helps, before people (even my loved ones) seemed to think "but she doesn't look sick it cant be that bad" or people would think I was lazy, taking a free ride, or a hypochondriac.

* I'm able to share my experience, and help others who have similar problems... who knew there could be so many!

* It's an easy cure.... your not on Meds for the rest of your life

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I felt much better after about 2-3 weeks of being gluten-free. My stomach pain, soreness, and gas went away and i could get up and down from sitting and go up and down stairs much better without feeling like i should be 90 years old. My joint pain improved tremendously and my mind is sharper and clearer and memory is better. Of course i've had my share of being accidentally glutened but it's been 7 months and i feel so much better. I have a new life. I hope it continues to get better and better. I'm trying to figure out other food sensitivities so that's a challenge too especially when i feel so bad - i get that gloom and doom feeling of will i ever get better. But, when i feel like that i try to remember that there are days when i feel awesome....i love those days! :) I have a feeling it will take me a while to get to a point to where i constantly feel good, but that's ok - i'm in it for the long haul. I think I've had this for a very long time and it's just gradually gotten worse and worse but really don't know how long. It's wonderful though to finally know what is wrong with me and that i don't have to take prescription meds for it....good, wholesome, healthy, nutritious food is my prescription! :D

Oh and i used to feel the exact same way about even taking a shower - it makes me feel better that i wasn't the only one feeling this way. By Friday nights after working all week i would be just totally exhausted and try to clean the house a little on Saturdays. I would do a little cleaning and then felt like i had no energy to shower! I still fight fatigue some but am still figuring out what foods bother me and what doesn't. On my good days that i'm really feeling better, it's just amazing to me how i wake up and my stomach isn't sore and hurting and i don't feel so exhausted....i hope those days become more and more frequent in the future!! :)

fig girl

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So I am looking for some motivational/positive "improvement" stories - how have you improved since going Gluten free. Has the improvement been significant? What was the before and the after?

I am not even sure I have gluten intolerance, but what I am sure of is that I am not healthy - and no matter what I do have, I need to take better care of myself (for my own peace of mind, peace of body, and sanity! LoL)

Thanks, in advance :)

I have had sinus problems since I was a teen, about 5 years ago my general health went south, no energy, difficult time dealing with people, never wanted to have conflict, BRAIN FOG. 2 years ago I had some problems with my right arm, diagnosed with cervical spinal stenosis, a closing of the canal in your spine where your spinal cord goes. That was my trigger event . . . . . . in a few weeks, BANG, Dermetitis Herpetiformis (DH) explosion, over 50% of my body, along with the finer celiac issues of not ever getting to far from a toilet. 6 or 7 skin biopsies, 2 half done blood tests, 1 proper celiac panel, all non-conclusive. I have been getting Gluten free for about 18 to 20 months, ten of those I was on Prednisone (steroids), 6 weeks on dapsone, nastiest little drug any sadist could come up with. With no real support from anyone outside the Celiac support groups, I stuck to my guns and the diet.

I am now 99% gluten-free, who knows where and how they hide that stuff, I had a normal BM about 6-8 weeks ago, first in almost 2 years, and now I am very normal, the brain fog has lifted, www.glutenfreedrugs.com is your friend! I had been taking low dose aspirin, glutened again! grrr, found gluten free aspirin at only one store. I feel like I have my life back, I hope to start dating again, you know, maybe meet a nice Celiac girl. I have as much sympathy as I do respect for any gluten eater that is in a relationship with a celiac.

2 weeks ago my doctor finally agreed, it must be Celiacs and gave me a written diagnosis. Not because of the hell I lived for 2 years, but because it is mostly gone and the DH triggers with contamination. She actually took the time to call a Celiac Center, Stanford University, we have nothing in Utah and put her staff on task and found 2, not one but 2 dieticians locally that assist Celiacs. Not only can they spell Celiacs, not only have actually seen a Celiac in a photo once, they assist Celiacs in maintaining a healthy diet evry week. Being Gluten Free does not mean you are providing your body the nutrients to heal and thrive.

READ, Study, learn, if your lucky enough to have a knowlegable or sympathetic doctor, great, unless they are Celiac, it is not likely they truly understand and you need to take responsibility for your health, unless you know where to trade this body in for a new one!

Good luck, your success is entirely up to you! Rock that Celiac lifestyle! It's worth it.

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Going gluten-free has given me my happiness for life back. Sounds corny, I know.

But before I went gluten-free, I felt bad ALL the time. Everything I ate made me sick, and if by chance I didn't get sick from eating, I was too exhausted to care. I have a 3yr old, so a year ago, my little guy had a mommy who was always too tired to play with him. If I think about how irritable I was then, and how little patience I had for him, it sends me into horrible guilt. But now, that's all over. We sing, laugh, all of those things that I was jealous of other people for being able to do.

I had lost interest in pretty much everything. So we never did anything as a family, because, I was too tired and didn't care. And I'm sure my husband really didn't appreciate my lack of interest in anything... B)

Besides which, it has kept me from getting other ailments associated with undiagnosed celiac. And since I carry two copies of that lovely DQ2 gene, which is associated with type 1 diabetes, I figured that wasn't too far off in the horizon. Maybe now I'll never even have to deal with that.

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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. 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