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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-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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Trudyjerry    0

I finally found a good doctor after years of dealing with GI issues. I have been told that it's acid reflux, ulcers, and problems with my gall bladder. When I was at the point were I was sleeping 18 hours a day, running for the bathroom after everything that I ate, could not drive myself anywhere due to the joint pain and muscle weakness, and was thinking death would be kinder, I decided enough was enough. I did some research and realized that celiac's could be my problem. I went gluten free, unfortunately before finding this doctor.

I finally saw him a month ago and I spent about 2 hours in his office discussing all of my issues and symptoms. He ordered 29 blood tests and prescribed all sorts of medications. Last week I went in to get the results of the blood tests. Honestly, I'm completely confused. The celiac test did come back negative. We were expecting that because I had gone gluten free for so long. He did refer me to a GI, who I will be seeing soon. Given my symptoms, I did receive a clinical diagnosis of celiac's.

I should mention my bad cholesterol is good, my good cholesterol is bad, and my triglycerides are 405. I am also pre-diabetic with my A1C being 5.7 and my estimated 3 month glucose at 117. I do suffer from migraines and was diagnosed with Raynaud's. I am lactose intolerant, have acid reflux, and have arthritis in my shoulders. I'm going in for an abdominal ultrasound of my gallbladder in two days. I also an an iron deficiency but am not anemic. I also have pretty bad seasonal allergies.

He was suspecting Lupus but after the blood work came back he could not tell me either way. Instead we would just wait and see. I don't understand the results. It came back Pos Abn, 1:40, and speckled. I guess my question is if I should get a second opinion on this or if I should just leave it alone for right now.

Now that I see this all written out like this, it's a lot. I am a 33 year old woman, two weeks away from her birthday, with too many health issues. Any insight would be greatly appreciated.

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Gemini    785

I finally found a good doctor after years of dealing with GI issues. I have been told that it's acid reflux, ulcers, and problems with my gall bladder. When I was at the point were I was sleeping 18 hours a day, running for the bathroom after everything that I ate, could not drive myself anywhere due to the joint pain and muscle weakness, and was thinking death would be kinder, I decided enough was enough. I did some research and realized that celiac's could be my problem. I went gluten free, unfortunately before finding this doctor.

I finally saw him a month ago and I spent about 2 hours in his office discussing all of my issues and symptoms. He ordered 29 blood tests and prescribed all sorts of medications. Last week I went in to get the results of the blood tests. Honestly, I'm completely confused. The celiac test did come back negative. We were expecting that because I had gone gluten free for so long. He did refer me to a GI, who I will be seeing soon. Given my symptoms, I did receive a clinical diagnosis of celiac's.

I should mention my bad cholesterol is good, my good cholesterol is bad, and my triglycerides are 405. I am also pre-diabetic with my A1C being 5.7 and my estimated 3 month glucose at 117. I do suffer from migraines and was diagnosed with Raynaud's. I am lactose intolerant, have acid reflux, and have arthritis in my shoulders. I'm going in for an abdominal ultrasound of my gallbladder in two days. I also an an iron deficiency but am not anemic. I also have pretty bad seasonal allergies.

He was suspecting Lupus but after the blood work came back he could not tell me either way. Instead we would just wait and see. I don't understand the results. It came back Pos Abn, 1:40, and speckled. I guess my question is if I should get a second opinion on this or if I should just leave it alone for right now.

Now that I see this all written out like this, it's a lot. I am a 33 year old woman, two weeks away from her birthday, with too many health issues. Any insight would be greatly appreciated.

Welcome!

I think you may be another candidate for Celiac Poster Child of the Month! ;)

What are confused about, exactly? You have to be consuming gluten on a daily basis for a blood panel to be accurate. If you went gluten-free, then don't bother with testing, including a biopsy. You will have started to heal and they won't find anything to back up a diagnosis. But then, they have given you a diagnosis based on symptoms and dietary trial results so that is your diagnosis. You have many of the problems associated with

Celiac. Have they improved on the diet?

My blood work mimicked yours, except for the triglycerides. My bad cholesterol was great, my good cholesterol was 20....really low and I was anemic. My testing for lupus was the same as yours, only much higher and speckled. I don't have symptoms of lupus so I don't worry about it and don't follow up on it. I do have other AI diseases that could produce this result so I deal with the ones I do have and don't sweat any more.

Your inflammatory markers are high and it's most likely from gluten. Gluten produces massive inflammation in the body and it will take time to return to normal. Most of what you suffer from should reverse itself, over time, if you stay strictly gluten-free. Be patient and try not to take a lot of meds. Whatever you do, DO NOT

re-introduce gluten for a definitive diagnosis. GI's like to do this but it will only create further damage and inflammation and set you back on recovery. Don't despair...many of us were the living dead at diagnosis and have made good recoveries. You are young and will recover. If you have questions, ask away! :D

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Skylark    935

I should mention my bad cholesterol is good, my good cholesterol is bad, and my triglycerides are 405. I am also pre-diabetic with my A1C being 5.7 and my estimated 3 month glucose at 117. I do suffer from migraines and was diagnosed with Raynaud's. I am lactose intolerant, have acid reflux, and have arthritis in my shoulders. I'm going in for an abdominal ultrasound of my gallbladder in two days. I also an an iron deficiency but am not anemic. I also have pretty bad seasonal allergies.

He was suspecting Lupus but after the blood work came back he could not tell me either way. Instead we would just wait and see. I don't understand the results. It came back Pos Abn, 1:40, and speckled. I guess my question is if I should get a second opinion on this or if I should just leave it alone for right now.

The "Pos Abn, 1:40, and speckled" means you have a small amount of an autoimmune antibody called antinuclear antibodies or ANA, and the pattern is speckled. This link lists the staining patterns and diseases. http://www.fpnotebook.com/rheum/lab/anstngptrn.htm It looks to me like speckled isn't terribly specific, and you would need rim or homogenous pattern for lupus? We have people on the board with ANA that didn't mean much because they can show up with other autoimmunity. You have plenty of it with the celiac and Reynaud's. My mom has them and my doctor doesn't know why but she doesn't seem to have Sjogren's or lupus. Also 1:40 isn't much antibody. High amounts would be 1:160 or 1:320. Seems to me like your doctor shouldn't be diagnosing lupus.

How long have you been off gluten? The low iron, gall bladder issues, joint pain, lactose intolerance and reflux are all celiac symptoms and may be a result of simply not being gluten-free long enough or carefully enough to heal. With severe celiac it can take a year or two to really recover from the autoimmune damage. Also some people need a super-careful gluten-free diet. They just don't heal if they are exposed to gluten cross-contamination at restaurants or eat too many processed foods with traces of gluten. If you're sure you're doing the diet right you may need to eliminate dairy, or possibly corn and other grains.

Obviously you need to be eating a diabetic diet. Getting your blood sugar under tighter control may help how you feel. There is also growing evidence that eating a high-glycemic diet that requires you to produce a lot of insulin worsens inflammation.

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TeknoLen    4

Your cholesterol and blood glucose numbers indicate metabolic syndrome. Gluten-free diet will help but will probably not entirely solve that problem. You might consider eliminating sugar, ALL grains, starchy vegetables like potatoes, yams, sweet potatoes, etc, and also dairy. Check out the wiki on "Paleolithic diet" for more info. I hope you feel better.

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Trudyjerry    0

Thank you all for the replies. They did help to answer my questions. I have been gluten free for three months now. I am extremely careful with making sure that there is no cross contamination and I rarely eat out anymore. Actually the only restaurant I eat at now is a Chinese place where we've gotten to know the owner and she personally makes sure that what I get is gluten free.

I have been working hard on eliminating dairy from my diet. I'm doing okay as far as actual milk is concerned but honestly, chocolate is my weakness. Put a bag of m&ms in front of me and 9 out of 10 times I won't be able to say no. I try but it doesn't always work. It's a work in progress.

I'm doing research into low carb foods now, seeing as my doctor recommended that to bring down my sugar level and the triglycerides. He's also given me 4 months to loose 10 pounds. I'm sure that will help as well.

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