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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.

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7 posts in this topic

Hello,

I almost don't know where to start. I have been reading through many of the posts here. I have had health issues my whole life. In my first year of life I received one anti-biotic shot per week. At the age of two I started taking gamma globulin (not sure on that spelling) shots. That went on for 2 years. During that time I was given a small pox vaccination and had a nasty reaction to it. I broke out in sores on my torso. Recovered from that and then they gave me ANOTHER small pox vaccination....that one took and I was ok. During my childhood I would eat many odd things. I had a huge craving for rocks and dirt. I ate paint, paper, glue, some household cleaning products, anything that was metal was appealing to me. Drove my mother nuts. I had problems with milk but my mom did not realize it at the time. When I was 12 I broke out in what they thought was ring worm or eczema. It rapidly spread to all of my joints and my tail bone. It was so bad and itched a lot. I went under the care of a dermatologist at that time. He treated me for eczema with little success. I was miserable. I would often vomit after I would eat, not on purpose, and I would get a terrible head ache. We had a lot of high carbs while I was at home. Lots of corn, fish, breads, potatoes..... I could not learn in school. I passed - barely. I was in a fog. I was over weight and my body hurt. My skin was a mess and I could not make it through a day of school without wanting to take a nap. After I had my first baby at the age of 20 I had my gall bladder removed. That helped my stomach feel better. But I continued to have problems so I went through allergy testing. I found out I was allergic to many of the things I ate on a daily basis. Fish, nuts, mushrooms, yeast, oranges, apricots, arrowroot (tapioca), onions. Those are the things I tested highly allergic too. I immediately went on a very strict diet. Basically low carb. I lost 60 pounds, my blood pressure was down, my heart rate was down, my "eczema" went away...... But that was hard to stick too. I started to add things back to my diet and when I did that the intestinal stuff started. The kind that you better be within a few feet of a potty or you are in real trouble! I thought my problems were due to the things I had tested allergic too. But I was finding just avoiding those items was not working any more. My "eczema" came back with a vengeance. My joints were covered and it started working it's way up my legs. I itched so bad I couldn't sleep. I had to go on antibiotics for infections I had caused from all of the scratching. One doctor did a biopsy on the skin patches and said it may be psoriasis, but it was not conclusive. They did not know for sure. So over the next several years I struggled. I thought my agony was due to my weight, but I have never been that over weight. I am 5'6 and have weighted at my most around 180. So I have never been severely over weight. I tried the weight watchers diet and that almost killed me. I ate whole wheat everything. I broke out in a mess of sores along my hair line, chin, and upper back. The sores reminded me of a chicken pox.

This is getting to long so I will wrap it up. I am 41 now. My doctor has tried to diagnose me with everything under the sun!! MS, Psoriatic arthritis, Chrons, IBS, panic attacks, FMS, trigeminal neuralgia.....Then he gives me a pill and thinks I will be happy! I don't want medication. I want to know what the problem is. Two years ago I went on the Atkins diet. Lost 35 pounds, my "psoriasis" cleared up, I had no more sores on my back or hair line, no more acne, I did not have loose stool for months (I used to get pain so bad that I had to call my mom for help because I thought I was going to vomit and pass out on the floor. I was BAD) My body pain was gone, my vision was better (no more floaters), I could stay awake all day, much more energy! I started to add carbs back to my diet and I am finding I am a MESS again. So I just started lo carb again two days ago. I am feeling a bit better already. It is just pretty hard to stick to it. But the big thing that motivates me is being able to eat and not run to the toilet. It really restricts my life. I can not eat out, I can not go shopping without knowing where the potty is. It has been very frustrating for me. Another benefit I have found is around mid cycle. I have so much pain for the last two weeks of my cycle when I am eating a normal diet. It is so bad I can hardly sit down! I have severe low back pain while eating grains but it was totally gone when I was eating low carb. I am not familiar with gluten free yet so I am going to stick with low carb until I learn more about gluten-free. I am allergic to yeast but can not seem to give up my cheese! funny thing is everything I LOVE to eat seems to make me sick. :(

Thank you for listening to this. Do I sound like I am anywhere near an answer by coming to this board? Oh, and I read some threads about people eating the tips of matches, I though I was the only one who ever did such a thing!!! I used to chew on them too. Those cravings are not such an issue any more. I have never tested anemic in my adult life but I did as a child. Can it take this long to figure out you have Celiac? If that is in fact my problem. My doctor said I have white flecks on my finger nails but he related that to psoriasis. funny how my "psoriasis" goes away totally when I don't eat grains! Right now if I eat the wrong things my heart races, I get sick to my stomach, and I get a smashing head ache. It does not take long to learn what NOT to put in your mouth with those sorts or reactions. I have no idea if I have Celiac or not but I do know avoiding grains it a good idea for me. It makes it hard to stick to the food pyramid!!

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Good gosh, if a doctor's never done a celiac blood panel on you please demand one now. If the doctor tells you you can't have celiac because you're overweight, tell him that's been completely disproven. Or have a dermatologist do a biopsy on your sores to see if you have DH. If you do have DH, that means you have celiac.

If all else fails, just go on the gluten-free diet. You don't have to avoid ALL grains, just wheat, rye, barley, and oats. But it is important to avoid it completely. Forget the food pyramid -- you can eat very well without those grains.

You have many symptoms and you feel much better when you don't eat gluten. The doctors can't find anything else wrong and have been no help. That's nearly a diagnosis in itself.

richard

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Hi Richard,

Thank you for you help. The doctors have discounted many of my complaints because I am not "unhealthy" looking. My weight has always been about 20-30 pounds over the top range of my ideal weight. I have become so frustrated by the amount of pills the doctors try to get me on. I have no intention of taking any more meds than necessary. I have to take my bp meds and I also take a beta blocker for my heart rate. Other than that I have refused the other meds for pain or what ever else. I went through a series of tests including two MRI's just about 3 years ago because they thought I may have MS. I do have very strange skin sensations BUT I get almost total relief on a low card diet. It has taken many years for me to put this all together. I have decided I am not going to live the second half of my life in misery.

I think what I need to do is find another doctor. Getting another skin test would be a good idea since the other one was not conclusive.

Thanks so much!

Lee Ann

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Here's a line from the recent NIH consensus statement on celiac. RThis document contains a lot of the latest info.

"The presence of obesity does not exclude the diagnosis."

You can see the whole document here:

http://consensus.nih.gov/cons/118/118cdc_intro.htm

richard

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i feel for you lee ann :( and i truly believe that if doctors were better informed, then we celiacs would not suffer for so many years before finding out that gluten free makes such a difference to us--i do believe that you have been celiac all of your life and would have been so much better off knowing gluten-free would have helped---i wish you luck and i do hope you get to feeling better soon--i do know how you feel--i didnt go gluten-free until i was 46 and i have been celiac all my life too--deb

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Hi Deb,

Thank you. Did you feel like you were nuts? Or being treated like you were? I have become so tired of feeling like the doctor is rolling his eyes at me. If I could find a good woman family doctor I would do it! I am not sure if a woman would be any different, hopefully she would. I was told that I was having panic attacks when I was in my mid 20's. So of course tid bit is in my records and in the doctors mind everytime I go through their door! I do not visit the doctor often. I have not been there in over a year. I just got so sick of it I decided I would NEVER complain to the doctor again and figure it out on my own. I am not depressed. I am not having panic attacks. I have nothing to panic about. I am generally a happy person. I have 6 children at home(2 of the 6 are our biological daughters. The other children are adopted) 2 waiting in Haiti to come home (waiting for the adoption to be processed), and I am VERY happy with my life. It is sad but when you get to this point you have basically lost all confidence in doctors. I have even been tested for Lymes and Lupus because of mysterious rashes. You would have thought the doctor would have gotten a clue when those tests came back ok!

I have done Atkins twice in the past 6 years. Both times I had wonderful results in the way I felt and weight loss. I felt so much BETTER that I did not even care if I lost weight. The problem has been sticking to it. I think I will have more luck maintaining the way of life if I am able to stay gluten-free instead of carb free. gluten-free has a bigger variety of things I can have in my diet. Eating meat all of the time is hard to tolerate. I had been doing a strict lo carb diet until about the middle of July. I lost it when the fresh fruit pies started coming out! Then birthday cakes............But I have been struggling for the past 2 months with overwhelming fatigue and other problems that I know are diet related. Same old stuff as before only worse.

It has taken years of experimenting with my eating habits but I think I have finally figured it all out. It is like a jigsaw puzzle that had to be pieced together. My siblings have very obvious allergies so they got all of the testing and meds they needed while they were young. I did not present with anything obvious so no one knew. My mother has the same type of problems I have. I need to get her information on Celiac. I have not been officially diagnosed but it really would not make a difference one way or the other. Why give the insurance company another reason to raise my rates!!

Thanks so much! :)

Lee Ann

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I have not found a female doctor that is any more understanding than the male doctors I have seem. In fact I have found at least 6 really good male doctors, of course almost all of them are pediatric doctors! My current Gastro-Intestinal specialist is a female and she is horrible. I just don't ever want to go back to her.

You sound very similar to me in how you found out that grains were a problem for you. I had never even heard of gluten or Celiac before I went on a weight loss diet (for me it was the Eat Right 4 Your Type blood type diet) and finally had relief of many of my lifelong symptoms. For my blood type some of the foods I was not allowed were wheat, and most dairy products. When I was able to buy some of the alternate grains I made some homemade bread, which was wheat free but not gluten free. The stomach pains were horrible. That is when I came acrossed Celiac and gluten. I was looking for help in baking wheat free breads, since I was sure I had done something wrong to cause me so much pain! I read the first part of one of Bette Hagman's bread baking cookbooks and she was telling her Celiac story. It was like being hit over the head with a ton of bricks. I really truely felt like I had finally figured out what was wrong with me. Of course I had to fight for a diagnosis for two years. I still am not officially "Celiac", but I have a diagnosis from Enterolab that tells me that gluten free is the right thing for me. I feel so much better now. I still have health issues, but not nearly as bad and many of those will get better the longer I am gluten free.

There is only one problem with your being tested now. Unless you have severely damaged intestines, there is a possiblity that you could test a false negative on the blood tests. I did low-carb off and on for a few years, and then when I was on the ER4YT diet I was gluten free. What this did for me is it gave my intestines time to heal each time I was off gluten, and then the damage would start again. So by the time I needed to get tested I had not been on gluten long enough for my antibodies to be in the positive range. The damage to my intestines was minimal and I was not willing to stay on gluten any longer than I had to. The difference in my health is like night and day when I am gluten free. It might be wise to collect as much information as possible about Celiac and all the testing options. See what is best for you. If you feel better off grains, then by all means quit eating them. But if you need to know for sure, for me I had to or I would not be able to stick to the diet FOREVER, then there are choices to be made. Below is a brief breakdown of my diagnosis and as you can see I pretty much had it all done. Blood tests, biopsy, and then the Enterolab tests (stool and gene tests). This doesn't even mention the years of testing for everything else, only to rule them all out. None of my doctors EVER mentioned gluten to me or gluten intolerance/Celiac. Then when I brought it up to them, one told me I couldn't possibly have it because I was overweight and he was going to test me for everything else first before he would test me for Celiac. He actually did the Endoscopic exam and didn't even bother to take one tissue sample while he was in my intestine, because he wasn't looking for Celiac! The next doctor told me that it was IBS and she wouldn't even think about doing a biopsy unless I was anemic. Which of course I wasn't. And those were just my last two GI specialists. I had been made to feel like it's all in my head for so long, that sometimes I thought maybe they were right. I finally got her to do a biopsy, which was negative, but I had only been back on gluten for two months. The top Celiac doctors are now saying it should be a minimum of 6 months. Two months on a lot of gluten was more than I could handle. I was so sick afterwards.

Hang in there. It sounds like you might be on the right track. Doctors drop the ball a lot, especially in the GI field, just make sure you pick it back up and keep running with it.

God bless,

Mariann

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      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
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