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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.

Feeling A Little Down After A Visit To The Allergist
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7 posts in this topic

Yesterday, I went to the allergist in hopes of getting to the bottom of my symptoms. I've been off gluten since early October after a positive result on the Celiac blood panel. I also just rec'd my results back from Enterolab which confirmed the gluten intolerance as well as casein. So, now I'm off dairy too and went to see the allergist to see if he could confirm the food intolerances. He did some scratch tests, which he warned me in advance aren't real reliable and of course I didn't come up with anything on the scratch test. He started me on an elimination diet and told me that if I don't improve in the next 10 days on the diet that we are "going down the wrong path". Ugh.. not what I wanted to hear. I have passed every blood test imaginable and I feel like I'm at the end of my rope with the pain. Can any of you share how long it took you to feel better after going gluten free? My symptoms are mostly musculoskeletal with migraines, not any with my gut.

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If you say you tested positive for gluten intolerance then you have to let the diet run it's course for the time being. I don't know what this ten days is all about. Some people like me noticed a difference in a couple of days and others take longer. This is why we are all different. I would suggest doing one thing at a time. To try the diet and continue to get tested may affect the test results. If anyone tries to do too many things at one time it may get things so out of whack that no diagnosis is possible. Have you noticed any difference while on the diet? Also what are your instructions on this "elimination" diet?

Tom

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Yesterday, I went to the allergist in hopes of getting to the bottom of my symptoms. I've been off gluten since early October after a positive result on the Celiac blood panel. I also just rec'd my results back from Enterolab which confirmed the gluten intolerance as well as casein. So, now I'm off dairy too and went to see the allergist to see if he could confirm the food intolerances. He did some scratch tests, which he warned me in advance aren't real reliable and of course I didn't come up with anything on the scratch test. He started me on an elimination diet and told me that if I don't improve in the next 10 days on the diet that we are "going down the wrong path". Ugh.. not what I wanted to hear. I have passed every blood test imaginable and I feel like I'm at the end of my rope with the pain. Can any of you share how long it took you to feel better after going gluten free? My symptoms are mostly musculoskeletal with migraines, not any with my gut.

Scratch tests are NOT reliable to confirm delayed reaction IgG or IgA Antibody allergies, because we do NOT put food under our skin when we eat. You need allergy blood test. The ELISA panel tests 100 different commonly eaten foods. My naturopath gave me that as well as a comprehensive stool bacterial, yeast and parasite test. Those tests showed I had egg and cane sugar allergy (as well as my previously diagnosed gluten, dairy and soy), Klebsiella bacteria and bacterial dysbiosis (my good guy bacteria were too few and my bad bacteria were too many. Food allergies and bacterial imbalance can cause all kinds of symptoms. So you may want to do tests for things you haven't yet checked.

After almost 50 years of digestive problems, I finally self-diagnosed celiac disease 2 years 7 months ago. Then I bought Enterolab tests to diagnose my gluten intolerance and casein allergy. I guessed I was soy sensitive from my reactions (until this year when I retested with Enterolab). After 2 years I was STILL having intestinal symptoms. So I saw my current naturopath who gave me ELISA and stool tests. After treating for bacterial dysbiosis, I FINALLY understood what 'normal' digestion was ... UNTIL I picked up more bacterial infection on vacation. I'm back on antibacterial/antifungal herbal supplements with probiotics to restore my normal digestive bacterial balance. Nevertheless after over 2-1/2 years of working on recovery I feel much better than I felt ever before.

Elimination diets are VERY difficult to follow and use to determine allergies. There's too much room for error and guessing. I prefer getting blood (ELISA) or stool (Enterolab) tests for food allergies. Keep looking for a good allergist or naturopath who will give you reliable tests. Your health is worth the effort. You WILL recover enough to feel 'normal', if you persist and settle for nothing short of reliable medical tests.

BURDEE

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Ok, you went gluten-free a while ago and then recently took out casein and, are you feeling better at all yet? Do you suspect that you have issues with other foods or are you just not feeling better yet? Your doctor isn't suggesting you add casein or gluten back in if you aren't better in 10 days, is he?

I used to get very bad headaches from gluten. I don't know if they were migranes, but they were certainly close. When I am glutened the headache starts a day later and lasts for a full 24 hours. I have also found it takes me about 3 weeks to feel 100% after gettting glutened.

In the beginning I started feeling better after 2 weeks. Then I could tell when I glutened myself because I had good and bad days. It took a couple of months for me to really get the hang of it and stop glutening myself all the time. If you don't have immediate gi symptoms, does it make it harder for you to tell if you have been glutened? My symptoms kick in right away so I realize what has happened and can something stop eating what I'm eating. If you always have headaches or get delayed headaches that may make it harder to tell if you ate something bad and you may be glutening yourself without realizing it.

Also, I realize that you don't have gi symptoms but when I first went on the diet my stomach was so upset that anything hurt it. I had to eat bland foods and take aloe and all sorts of stuff to get it not to be so irritated. Whatever your symptoms are, I wonder if you are also irritated and maybe it will take a while to calm down.

I found my other intolerances by keeping a food diary. It wasn't easy but I was told that there aren't any reliable tests to determine other allergies/intolerances. I do get symptoms if I eat these other foods but they aren't the same as my symptoms when I'm glutened, I can tell a difference.

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I did do an IgG test through the Great Smokies Lab which came up with a mild sensitivity to a few things like yogurt, alfalfa, cane sugar and corn but it didn't pick up on dairy or wheat. I have seen a naturopath, osteopath and chiropractor but now I'm back under the care of a MD. The only time that I saw a turnaround of my symptoms was last spring when I went on the Paleo diet for about a month. It took a while but I did feel better. I ended up back on all the foods for the blood tests. I may have to go that route again.

The allergist plans on seeing me back after I've been on this elimination diet and if I improve then he would reintroduce some of the foods back but he seemed confident that the gluten is an issue for me. Dairy is still up in the air, although it did show positive on Enterolab's casein test.

Cassidy, over the last couple of weeks, I was glutened twice that I can think of off hand. Once was just last weekend, after having some McDonald's fries. I felt so bad the next day and what I experience is almost like an all over headache, as my Chinese doctor describes it. I also had this happen after eating chocoate from Whole Foods, and it has happened with other chocolates. I am somewhat in denial about those episodes and I don't know if it's a reaction to what I am eating or something else that's causing it. I think the elimination diet will help me understand those episodes, and a food diary is also a good idea. At this point, I can't tell if it's gluten or something else that is causing it, I wish I could. Just after I went off dairy I did experience some stomach issues, which I thought was odd but the same thing happened when I went off gluten, except it was headache and muscle issues.

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Cassidy, over the last couple of weeks, I was glutened twice that I can think of off hand. Once was just last weekend, after having some McDonald's fries. I felt so bad the next day and what I experience is almost like an all over headache, as my Chinese doctor describes it. I also had this happen after eating chocoate from Whole Foods, and it has happened with other chocolates. I am somewhat in denial about those episodes and I don't know if it's a reaction to what I am eating or something else that's causing it. I think the elimination diet will help me understand those episodes, and a food diary is also a good idea. At this point, I can't tell if it's gluten or something else that is causing it, I wish I could. Just after I went off dairy I did experience some stomach issues, which I thought was odd but the same thing happened when I went off gluten, except it was headache and muscle issues.

If you have been glutened twice in the last few weeks then I really think you need to try a bit harder to limit your diet so you can see how you realy feel if you are gluten-free. I know it is hard and sometimes gluteny foods are tempting and sometimes you think something is safe and it isn't, but if you eat natural foods then you probably won't get glutened as often. I highly recommend staying off dairy and cutting out McDonalds and anything processed, including chocolate. I'm not sure what the Paleo diet is but I think it is very natural - that may be the way to go and then you can add things back in after you are feeling well again.

It is completely understandable to be in denial and not to be ready to exclude other things from your diet. The tough part is if you are telling yourself you are gluten-free and so your symptoms can't be due to gluten, but really you are glutening yourself enough to where your symptoms may be due to gluten. You may be putting yourself through extra eliminations and pain by not admitting what is going on. If chocolate has gotten you sick several times then you either have to admit you can't have it, or realize that when you sick afterwards you knew it was going to happen and you chose to eat it anyway.

Good luck figuring everything out and I hope you feel better soon!

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Thanks! Yes, I know about McDonald's, it's rare that we go there and I thought I was safe with the fries but obviously not. Same with chocolate, it just can't be a coincidence if it's happened three times after eating various types of chocolate. I've come along way since a year ago, when I wasn't interested in trying an elimination diet during the holidays. I'll stay with it and be extra careful, hopefully the turnout will be coming soon.

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