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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.

Other Food Allergies May Be Appearing?
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8 posts in this topic

I was diagnosed with Celiac 8 months ago, and at first I felt MUCH better. Almost all my symptoms went away and I was happy to be able to wake up without pain and be able to do more than lay on the couch all day sick. The past month or so, however, I've been slowly getting sick all over again. I realize that once you go off gluten, you have to give it at least a year until you're healed, but I feel a bit discouraged since I make sure that nothing I put in my mouth has gluten in it. The pains are coming back, along with joint pain, the occasional (painful) digestive issue, and somedays I just feel miserable.

I've been dairy free since diagnosis as well, but I'm thinking it could be a soy or casein allergy? Recently, I seem to be getting sick from anything salty or sugary, and I've been making sure to write down what I eat and the reactions. (Sometimes I get sick, sometimes I don't so I become quite frustrated.) I have gained only a few pounds since going gluten free, and I struggle quite a bit to keep my weight above 100.

I guess my question is does anyone have any idea of what I could be doing wrong or if I do have other food allergies appearing?

(Also, the doctors around here aren't any help. It was a pain to get my GI doctor to even test for Celiac, and when I got my endoscopy/colonoscopy, he focused on testing for Crohn's Disease.)

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I was put on a fairly strict elimination diet. (am still on it...) Basically, limited foods until you feel fine and then add new ones slowly and keep a detailed journal of what you are eating and how you feel.

Start: Lamb, turkey, rice, millet, cooked carrots, summer squash/zucchini, applesauce, canola oil, and salt. (I also added almonds-- not something I eat regularly but that could be portable snack food. Generally, nuts are out because they are a common problem.)

Added first week: sweet potatoes, canned pears

Second week: dairy, canned pineapple, egg

Third week: Soy, beans or lentils.

And so on... I dropped all meds and supplements for the duration because everything seemed to have corn or soy in it. A nutritionist or decent GI doc should be able to guide you through it. IgG and IgE testing are also options, but how you feel in response to the foods is a bit more reliable. It's a pain, but useful and I've found that I do quite well on lamb, rice, veg, and applesauce even if it's wicked boring.

Good luck.

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Similar situation here! I went gluten-free in August and was super excited when I started feeling better. Then around November, everything went crazy. It was like everything was making me sick. I started cutting foods out and noticed things that made it worse but not better. I have been down to so little, I've lost a lot of weight and still have no clue. Something I have noticed about the elimination diet though...don't count out foods unless you've TRIED them. For example, I ate brown rice and was soooo sick. I figured all rice was out but white rice is pretty good. Brown rice made me feel like I was going to vomit at any second. Now I live on white rice. Don't assume anything.

Good luck, let me know if anything works.

PS, I feel your doctor frustrations. I'm always tempted to call my first GI doctor just to tell him to go to hell. He basically laughed in my face. Won't be going back to him, ever!

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I've been gluten free for 9 years. Now I've come to the undeniable conclusion that dairy's the thing that's been giving me new and different problems for months! Believe it or not... I'm finding going dairy free much harder than going gluten free!

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Just saw you were searching for answers and figured I'd ask: have you looked at (dietary) fructose malabsorption? The rice thing made me think of it, as brown rice is bad for people with this issue, and white rice seems to be okay. Involves fruits and veggies and grains, so it can cover a lot of foods!

This site talks about some of the foods that are good and bad, if you care to take a look:

http://www.healthhype.com/low-fructose-diet-in-fructose-malabsorption.html

Similar situation here! I went gluten-free in August and was super excited when I started feeling better. Then around November, everything went crazy. It was like everything was making me sick. I started cutting foods out and noticed things that made it worse but not better. I have been down to so little, I've lost a lot of weight and still have no clue. Something I have noticed about the elimination diet though...don't count out foods unless you've TRIED them. For example, I ate brown rice and was soooo sick. I figured all rice was out but white rice is pretty good. Brown rice made me feel like I was going to vomit at any second. Now I live on white rice. Don't assume anything.

Good luck, let me know if anything works.

PS, I feel your doctor frustrations. I'm always tempted to call my first GI doctor just to tell him to go to hell. He basically laughed in my face. Won't be going back to him, ever!

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Some quick ideas:

- genetically modified foods seem to cause an increase in allergies to OTHER foods in animal studies. My GI is starting to see this in his auto-immune patients, too, so he recommends eating everything organic.

- if you try the elimination diet, I would dump the 8 most common allergens, everything in the grass family, and then do a bit of research on corn allergies, too. And actually...the grass family issue? That would pretty much cover 'salty and sugary.' Sugarcane is in the grass family along with corn, and corn is in everything, from ALL iodized salt to baking powder to a dusting between paper plates. It's VERY hard to avoid. I mention it because I was reacting to more and more as well, and it didn't stop until I managed to avoid all the foods that were 'bad' for me, completely. I notice now that if I start getting something that I'm reacting to, all the other reactions start getting worse as well, and I'll react to things that didn't bother me before. So I think it's definitely possible that you are reacting to something in the diet.

- for an elimination diet, my dietician gave me this advice: record down brand names of everything you try, as well. You never know what company might have something contaminated by something else, use a certain pesticide, etc... Also, if you stick to the same food for, say, 2-3 days, and then switch to another set that doesn't have ANY of the same ones, and then switch back, you might be able to notice a pattern better between reactions and foods. Since some reactions can be delayed up to 48 hours, I think the 2-3 days to stay on one food might be useful to get a better handle on things.

- you might also wanna check out fructose malabsorption ( http://www.healthhype.com/low-fructose-diet-in-fructose-malabsorption.html ) and sulfite allergies. Those both involve a wide range of foods, so that might apply in your case. :-)

I was diagnosed with Celiac 8 months ago, and at first I felt MUCH better. Almost all my symptoms went away and I was happy to be able to wake up without pain and be able to do more than lay on the couch all day sick. The past month or so, however, I've been slowly getting sick all over again. I realize that once you go off gluten, you have to give it at least a year until you're healed, but I feel a bit discouraged since I make sure that nothing I put in my mouth has gluten in it. The pains are coming back, along with joint pain, the occasional (painful) digestive issue, and somedays I just feel miserable.

I've been dairy free since diagnosis as well, but I'm thinking it could be a soy or casein allergy? Recently, I seem to be getting sick from anything salty or sugary, and I've been making sure to write down what I eat and the reactions. (Sometimes I get sick, sometimes I don't so I become quite frustrated.) I have gained only a few pounds since going gluten free, and I struggle quite a bit to keep my weight above 100.

I guess my question is does anyone have any idea of what I could be doing wrong or if I do have other food allergies appearing?

(Also, the doctors around here aren't any help. It was a pain to get my GI doctor to even test for Celiac, and when I got my endoscopy/colonoscopy, he focused on testing for Crohn's Disease.)

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Well our experience with the elimination diet was due to eosinophils. (Your brief description of your doctor I am going to assume the lab work was not ordered for the pathology report.)

Advice on the elimination diet...

Eliminate all top 8 allergens and PEAS (if you suspect a food add it on your avoid list) 2 weeks

Introduce the challenge food in its purest form available, 3 days in a row, wait 2 weeks

Challenge each food one at a time, Journal everything i.e. amount of food, brands, reactions, BM, headaches, your environment, anxiety feelings and it might be helpful to see amount of sleep too.

Eosinophils are connected to food or airborn triggers. Once these white blood cells are activated, they are active for 12 DAYS with NO further stimulation.

I do not believe every one in the world has eosinophilic reactions going on :rolleyes: , but for the sake of going through a LONG, tedious, elimination diet ~ best to do it right the first time! ;)

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Similar experience for me too. You can see the details in my signature. It wasn't until my doc suspected fructose malabsorption and I went on the FODMAP diet did I truly start to feel better.

I say that this experience is like peeling an onion. Just when we think we have it figured out there's more layers to go.

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