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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? - 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
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tarni

Testing Other Allergies Pre Gluten Free?

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My recent blood tests said possibly for celiac, but endoscopy results yesterday said no. So, with information gathered from this forum I had decided I would immediately go 100% gluten and dairy and soy free (just eat fruit vegies potatos fish and herbal tea). I know it will be difficult, but hey I want to get out of this non-life. I was thinking of gradually re-introducing cheese and soy milk, and see how I go. However, I'm just wondering whether to just keep on my normal diet for a while so I can have other allergy/intolerance tests to see what is really a problem and what is not. And I've seen nuts, eggs, legumes, potatos also seem to present problems with others on this forum. I have found (online) that a doctor at my local practice specialises in nutrition, so I'm thinking make an appointment, get the allergy tests done and then go gluten and dairy free (I think dairy/soy is in there, as my sinuses are pretty swollen and wrecked.)

Do you think, it is worth coping with a week or two more on a normal diet in order to get a comprehensive diagnosis in order to move forward with all the information possible? And what to these tests involve? Ta

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I don't know what possible Celiac means, you either are or you aren't, but having a negative biopsy means you might be gluten intolerant/sensitive. Even still, you might test negative on bloodwork as well and STILL be intolerant/sensitive, as is the case in my daughter. She feels better eating gluten free, so she eats gluten free.

I believe they can test for other intolerances/allergies regardless of your gluten status. I am doing some testing now for dairy, fructose and Small Intestine Bacterial Overgrowth and all these tests have their own diet restrictions for that test. Your doctor should be able to let you know what you can eat before testing. Now, if you want to retest for Celiac, you have to be consuming gluten for a month or more to make it a good test.

Hope you find the answers you seek soon!

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If your blood tests were postive you are one of us despite the negative scope. You have 22 ft of small intestine and the biopsies can miss the damaged spots.

I would go ahead and get off the gluten since you are done with celiac testing. Dropping the gluten will not effect the results of any testing for other intolerances. Also do not assume you have other intolerances or allergies. Not all of us do. While you should drop dairy since the damage done by celiac can prevent us from digesting it until we heal I wouldn't drop other foods until you have been gluten free for a while. Also the gluten reaction in the body can make you show up allergic to a lot of stuff that you might not be allergic to once your body heals. This happened with me prediagnosis because, as my allergist said, my immune system was in hyperdrive so I was reacting to a lot of stuff. Once we got gluten out of my system the other allergies for the most part resolved.

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Thanks to both of you. Yes, although my blood tests were positive (right genes etc), my doc was very clear to me that the endoscopy would be the real decider. Thus I believed his 'possible' diagnosis. However, in my research (inc and esp this forum) I have learnt a lot, including that yes I am in the same club! :) I went gluten and dairy free 48 hours ago (was planning to see a dietian, but, fed-up with the med system, decided I would just listen to my body and head! :) ). So, day-1 fell (crashingly) asleep in the afternoon, woke up fuzzy, but made it to a short walk to the post-box. Fell asleep again and woke with massive headache, but drank some Red Bull, as suggested by a member of this forum, and it worked a treat! Day-2 (inc ginger tea for breakfast, another suggestion from here) I feel much better and my sinuses are clearing. Should I start taking B12 and magnesium, or wait for a bit? Any advice welcome. Ta, tarni

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    • It's good to know it was of use, thanks for letting me know   All the best, Matt
    • Hi Matt,   Thank you very much for a thorough response. Your link seems to cover pretty much all the questions one might have in my current situation. I appreciate it.   Have a wonderful day, Lex
    • I am worried about the cost but I think having that test done would help me rule things out. Either way I need to see a G.I my issues are getting out of control.
    • Thank you for all the information. I am sorry for the late reply to everyone. I have been feeling worse and worse lately. Got the blood test results, it came back negative. Seeing a G.I specialist in three months (too long for me :/) I've been keeping a food diary and realize I feel worse after eating gluten. After the G.I I want to start the diet. I'm going to call him and see if I can get seen sooner. The bloodwork said theres no signs of inflammation and they don't suspect it to be autoimmune but they want me to do the diet anyway. I wish I had answers because my vision is getting worse, cramping, nerve pain and trips to the bathroom are amplifying. Meh. Also I have a vitamin d deficiency so I am taking d3 2000iu with vitamin b12. Thanks for the help! 
    • I'm sorry you are dealing with this. My son deals with food intolerances that are not identified by any biomarker as well. I hear the same response from doctors in that, "if the food makes him feel bad then it's probably best to avoid the food." (Thanks for your insight doc!) His symptoms are not dermatological though. His symptoms are mostly neurological and psychiatric with some bloating and mild digestive issues. He loses his mind quite literally if he digests gluten. Also develops what is known as a stereotypy, involuntary movement of hands. He is otherwise a normal child. We are unable to obtain any kind of diagnosis though.  I know you're avoiding a lot of foods right now, but don't get discouraged. It's just a way of life and you're doing the right thing. Right now we are avoiding foods such as soy, all types of grain, chocolate, dairy and nightshades. I have limited his iodine intake as well. I have personally found that gluten, iodine and soy cause intensely itchy blisters and joint pain for me. Perhaps have you tried cutting back on iodine intake?
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