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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.

Possibility Of Food Intolerances? Suggestions Needed!
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10 posts in this topic

Hi, everyone!! I was diagnosed with Celiac Disease approximately 1 month ago, and I have been gluten free 1 1/2 months! I really do feel a lot better but still not "normal".  I know and understand that it takes a WHILE for your body to heal from all of the damage.  I am trying to be patient, but I really do feel that I have some intolerances to other foods as well (possibly soy, dairy, sugar).  I have been in denial...because well, I felt like I had already given up so much!!  :unsure:

 

I now realize, however, that I just have to do this 100%, regardless, if I want to feel 100% better! I just need advice on the best way to go about it!  Should I go to my GP and ask to be tested for other food intolerances (or do they even do that)?  I must add that I live in Mississippi...The Celiac diagnosis, from my personal experience, is not always well accepted and is thought of as a "fad".  Feel a little lost at times...not knowing where to turn...

 

I don't REALLY want to just cut everything out without actually KNOWING what is causing me to not feel well?? I just want proof, I guess.

 

What are your experience?? I would really like to hear...I have learned more from the stories on this forum than from any doctor or dietician that I have seen!

 

Thanks in advance for your help!!!!!!!

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You could try removing dairy for a while and see what happens. Some celiacs don't handle dairy very well when they are healing.

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Don't you have an actual diagnosis from a doc? If you have a doctor that thinks Celiac isn't real, you should get another doctor.

The best way to see if you are intolerant to a food is an elimination diet and food diary. I think you should give the gluten-free diet a few more months before you try to eliminate most all foods and try them on at a time. Don't eat dairy and gluten-free oats ( if you are eating them) and give it a few months.

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Don't you have an actual diagnosis from a doc? If you have a doctor that thinks Celiac isn't real, you should get another doctor.

The best way to see if you are intolerant to a food is an elimination diet and food diary. I think you should give the gluten-free diet a few more months before you try to eliminate most all foods and try them on at a time. Don't eat dairy and gluten-free oats ( if you are eating them) and give it a few months.

I do have a diagnosis from my GI doc.  My GP is actually the one who referred me for testing, but even he admitted that he didn't know much about it.  I was referred to a dietician.  I felt like I found more on google and was more prepared for the meeting than him.  He has actually only worked with one other Celiac.  My family members (who have symptoms and SHOULD get tested) are hesitant to believe that it's as serious of a condition as I make it out to be...Sad, really, but true.  So, now I feel like I just have to PRETEND to feel better just to not have to listen to anyone saying anything about how I'm overreacting, etc...

 

I guess the weirdest thing about it is...I was feeling SO GOOD last week...so much so that I thought I was "healed".  What changed!?! Why do I feel bad all of a sudden?  This is the most confusing disease, truly.  I mean, I can't figure if I've glutened myself somehow (my kids still eat it) or if I have some other intolerance...

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I read up on testing for food intolerances.  It seemed like the tests are expensive and not very accurate.  You can use them as starting points for challenge/elimination dieting, but you still have to do those diets to be sure of what bothers you.  Your problem may not be other food intolerances anyway.  It may be that you are sensitive to the low levels of gluten allowed in gluten-free foods.  The levels tolerated vary widely.  In any case, it helps to keep a food journal and do challenge/elimination dieting.  Basically, if you think that something bothers you, stop eating it and see what happens.  If you are uncertain, start eating it again and see what happens.  

 

I also felt much better when I first went gluten free and then started having problems again.  I had to learn a lot more about avoiding gluten before I could be completely symptom free.  I hope that you feel better soon.

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I read up on testing for food intolerances.  It seemed like the tests are expensive and not very accurate.  You can use them as starting points for challenge/elimination dieting, but you still have to do those diets to be sure of what bothers you.  Your problem may not be other food intolerances anyway.  It may be that you are sensitive to the low levels of gluten allowed in gluten-free foods.  The levels tolerated vary widely.  In any case, it helps to keep a food journal and do challenge/elimination dieting.  Basically, if you think that something bothers you, stop eating it and see what happens.  If you are uncertain, start eating it again and see what happens.  

 

I also felt much better when I first went gluten free and then started having problems again.  I had to learn a lot more about avoiding gluten before I could be completely symptom free.  I hope that you feel better soon.

Thank you for your comment!  I think at the beginning of this I thought I wouldn't be one of the "sensitive ones"...I'm starting to feel otherwise now.  Like tonight, my husband's family cooked dinner...Of course, I couldn't eat a thing and DIDN'T! BUT...my 3 kids DID! Despite thorough hand-washing and trying to not touch anything, I feel HORRIBLE! I just don't think I can even go over there anymore.  It all seems ridiculous, but I know that's why I'm feeling this way...because I haven't eaten anything! How do you stay away from it completely?? That's what I'm having the hardest time with right now.  I feel like I need cover myself in plastic wrap when I go in public!  So hard to explain that to "non-Celiacs".  That's why I'm so thankful for this forum.  It's at least a little relief to just know you are not alone!

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You have to learn to carry safe food with you wherever you go.  Always keep gluten free food in the car, in your purse, and take a meal with you when invited out to eat.  Always make sure your food is on a clean plate or on a paper towel on the counter, just take precautions, cover food you microwave.  You don't have to talk to anybody about it or explain anything to anyone beyond saying that you are intolerant of gluten and cannot eat food prepared by people who dont know how to keep it gluten free.  You can say it is hard enough for you to keep yourself gluten free without expecting someone else to be able to do it for you. :)

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I find that it really helps to control gluten intake where I can.  That way if I get some accidental gluten from elsewhere, it doesn't bother me as much.  I have a little bit of wiggle room.  Also, once you are well healed, you don't experience symptoms as easily.  I am not less sensitive at all, unfortunately, but it takes awhile to get re damaged enough to notice it.  I can take a hit from airborne gluten at the farmer's market, for example, and still go on with my life.  It just takes while to figure out your individual level of sensitivity and how to manage it.  There are a lot of ups and downs along the way, but you can get there.

 

I actually don't carry food around with me unless I am going on an overnight trip.  I just don't eat when I'm out.  I'll eat before I go or when I get back.  That's easier and safer for me.

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after I went gluten free I felt worlds better, but not fully. I was still nauseous and had terrible heartburn at times. I suspected dairy and soy. I tried an elimination diet for those one thing at a time. I then went to an allergist and found out I am allergic to both. so now, knowing that, I am gluten, dairy and soy free, and feel pretty darn great!

 

as far as the other issue, I know how hard that is. just carry your own food if you are going to social situations. it's hard around kids when they are eating. my grandkids always want to hand me their gluteny food with their precious gluteny fingers.

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Hello Jamie,

 

I felt better after going gluten free but in the following year my fibromyalgia pain returned.

I discovered it was the red kidney beans and later other foods.

Later, I did that expensive food intolerance test and I'm glad I did it because it pointed out other problem foods like peas which I never would have suspected.

But if you don't want to take this test, I recommend cutting out dairy, eggs, oats, and even all beans and peas.

Then reintroduce them one at a time once you feel better.

 

I understand about those dinners.

I wasn't invited to dinner parties after I went gluten free even though I could have eaten the vegetables and meat.

Also no one believed me, because I wasn't skinny.

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