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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.

Tried Gluten For First Time
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jhol    0

so last week was so fed up i bought some lactose free cheese- out of desperation, hoping it was just the lactose that was the problem. well, had all the intolerance symptoms, cold, ache in cheeks,tingly cheekbones, tired, achy. so i now know cheese is out!

 

had a few days off over easter so decided to try wheat. had 2 white muffins ( english -so bread rolls)  went really cold and shivery, felt like my sinuses were getting bunged up,got all the same intolerance symptoms as above plus the weird tingly feeling i get in my mouth with what i think is the rice milk or some ingredient in it. got very mild pains in stomach, glands in my neck felt swollen,burping, arms achy and my scalp was itchy. waited for the "other" symptoms- but non came!!!! i know i never had any gastro symptoms anyway- but i was expecting something!!

 

so now i dont know what to think - maybe all my problems are just to do with food intolerances  and not wheat at all!!

so my diagnosis was right, not celiac!!

the only thing i noticed last night was- extreme depression, it all came flooding back - it took me a while to realise what i,d done and why i was feeling like that .when it clicked that it was the bread it scared me that this is what i used to feel like every day. checked the ingredients in the bread and it contained soya, so maybe thats the one to try next.

 

im a bit flummoxed by this and not sure where to go next -i dont know if im on the right track or not..

 

 

 

 

 

 

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shadowicewolf    166

so last week was so fed up i bought some lactose free cheese- out of desperation, hoping it was just the lactose that was the problem. well, had all the intolerance symptoms, cold, ache in cheeks,tingly cheekbones, tired, achy. so i now know cheese is out!

 

had a few days off over easter so decided to try wheat. had 2 white muffins ( english -so bread rolls)  went really cold and shivery, felt like my sinuses were getting bunged up,got all the same intolerance symptoms as above plus the weird tingly feeling i get in my mouth with what i think is the rice milk or some ingredient in it. got very mild pains in stomach, glands in my neck felt swollen,burping, arms achy and my scalp was itchy. waited for the "other" symptoms- but non came!!!! i know i never had any gastro symptoms anyway- but i was expecting something!!

 

so now i dont know what to think - maybe all my problems are just to do with food intolerances  and not wheat at all!!

so my diagnosis was right, not celiac!!

the only thing i noticed last night was- extreme depression, it all came flooding back - it took me a while to realise what i,d done and why i was feeling like that .when it clicked that it was the bread it scared me that this is what i used to feel like every day. checked the ingredients in the bread and it contained soya, so maybe thats the one to try next.

 

im a bit flummoxed by this and not sure where to go next -i dont know if im on the right track or not..

I would certainly call that something. That sounds somewhat like an allergy (tingly mouth, ichy, swollen glands).

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bartfull    565

I'm confused. Why would you think wheat is NOT a problem? You had a reaction. Sure, maybe it wasn't gastro but a LOTof us don't get gastro symptoms.

 

You probably do have other food intolerances AS WELL. Many of us do. The best way to find out is to stick to a whole foods diet for AT LEAST six months before trying soy or dairy or anything else you suspect bothers you.

 

Be kind to your body. Instead of trying to figure it out right now, give yourself time to heal. Keep a food diary and note your symptoms. You might develop even more intolerances for a while but they will most likely be temporary. It's been two years for me and after about a year (?) I got corn starch back. I lost it again after a glutening but I plan on trying it again in six months. In the meantime I am back on whole foods only. I'd rather feel good than get to eat whatever I want.  

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jhol    0

I'm confused. Why would you think wheat is NOT a problem? You had a reaction. Sure, maybe it wasn't gastro but a LOTof us don't get gastro symptoms.

 

You probably do have other food intolerances AS WELL. Many of us do. The best way to find out is to stick to a whole foods diet for AT LEAST six months before trying soy or dairy or anything else you suspect bothers you.

 

Be kind to your body. Instead of trying to figure it out right now, give yourself time to heal. Keep a food diary and note your symptoms. You might develop even more intolerances for a while but they will most likely be temporary. It's been two years for me and after about a year (?) I got corn starch back. I lost it again after a glutening but I plan on trying it again in six months. In the meantime I am back on whole foods only. I'd rather feel good than get to eat whatever I want.  

sorry - yes when i said wheat i kinda mean gluten as in a celiac problem. i must admit im struggling with not being diagnosed with anything yet. i feel like i need to apologise for not having a diagnosis and feel my family would take me seriously if i had one . anyways just a little tired and confused at the moment -probably delayed symptoms. gonna phone docs 2morrow and see if i can hurry up these intolerance tests. im trying to stick with plain foods but i seem to be limited - veggie,no gluten,dairy,egg,nightshades - im worried i,ll lose others by eating them all the time. ive even considered buying some chicken to try!!!! now thats desperate for a veggie (for over 20 years) lol  

i,ll stick with plain foods - not even havin gluten free products now an see how it goes

thanks for the reply

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cavernio    9

I was diagnosed with a completely wrecked small intestine where damage was seen at the top of it that very likely went all the way through the intestine as where the small intestine switches to the large one, it also didn't look good, despite a very healthy looking colon.

 

I have never had an upset stomach or what I would call diarrhea or constipation. (Granted, apparently just by have bowel movements more often and having the stools be softer, that's apparently diarrhea even if it doesn't bother or discomfort me, so technically I guess I do have diarrhea.)  Caffeine can give me more explosive diarrhea, and when I first went gluten free, is was clear that lactose was going to be a big issue. Point is, you can't judge whether you have celiac disease from how you react to eating gluten, even if you have been gluten free 10 years and then eat some. 9 months gluten free, and my gluten reactions still don't involve stomach issues. Also, your sinuses are a part of your mucous membranes where IgA resides/gets released (whatever it is), so those might not even be an IgE response.

And finally, even if you don't have celiac disease and rather it's a gluten intolerance, they're very obviously connected, and not just because it's the same food that causes the reaction. A lot of gluten intolerant people have many of the same antibodies celiacs have, and some celiac issues, like dermatitis herpetiformis and neurological damage, are caused by different T cells than those that damage the small intestine. But there's no way of physiologically testing for a gluten intolerance, not that I know of.

 

My dairy ingestion symptoms (not just lactose) feel like a mild flu, especially the hot and cold feelings.

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nvsmom    332

Your neurological symptoms (depression) and your tingling, mouth sensations, itching and pain certainly sound like gluten intolerance symptoms to me, and there is NO way to tell celiac symptoms from non-celiac gluten intolerance (NCGI) symptoms - they are the same. I don't know what symptom you think you are missing... that's a lot!  :(

 

I don't believe you can develop food intolerances by eating them all of the time. I do think people are likely to develop other intolerances if they continue eating a food they are intolerant too (gluten). I'm not a medical professional though and this is just my own opinion and observation.

 

You'll probably have to remove offending foods for 4-6 months  to see real improvements (if you're done testing) so hang in there.

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jhol    0

thanks everyone for your reply,s,

 

just feeling so sorry for myself today, and thinking about it, this is how i felt every single day before i started this diet. its hard to believe how far ive actually come. ive gotta stop being so hard on myself. phoned the doctors today- no appointments for a week!!!! :blink:  oh well ....

found a wholefoods store in manchester (uk) so im gonna go and see what i can find - hopefully some lovely different food ideas. and some natural gluten free toothpaste/shampoo ect..

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commercial bread has so many ingredients, the only way to test what the offending allergen is at home is to mix a bit of flour into plain water and drink it but not with a meal and if you react to the floury water, then you know.

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jiggles    2

Hi Jhol I used to be a vegetarian too but when I was in hospital the food was so limited I decided to eat all the meat I could to try and get better ,

I felt really guilty but I needed to build myself up , I still eat meat and I eat the crispy fat too as I don't eat dairy either,

Chicken sounds a really good way to start or fish if you like it , and you will have lots more to choose from

I know what you mean about those depressing feelings when you eat gluten really scares me it is one of the worst feelings I have ever known :(

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jiggles    2

Hi again b when you say you found a "whole foods store " I am a bit confused , I thought whole foods were things like potatoes, vegetables, un processed meat, fruit ect , just the one food ,

I am new at all these whole foods too , I am thinking have I got it wrong , or is whole foods lots of other special things too ?

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jhol    0

Hi again b when you say you found a "whole foods store " I am a bit confused , I thought whole foods were things like potatoes, vegetables, un processed meat, fruit ect , just the one food ,

I am new at all these whole foods too , I am thinking have I got it wrong , or is whole foods lots of other special things too ?

hi jiggles,

 

dont know where youre from but im in manchester, england. a wholefoods store is basically a health food shop! from what ive read on here in america it seems like you can virtually buy anything at the big supermarkets but here if youre looking for something a bit different like an organic,gluten free make-up range, or flouride free toothpaste,dairy and soya free chocolate- you have to visit the local wholefoods store. the supermarkets are getting a bit better -just taking their time!!!!!

 

 

your right whole foods are just plain foods and thats the best thing to be eating - lots of rice and beans for me lol. i just got a bit fed up with the foods i was eating an thought id see what they had to offer. got some maize and buckwheat flour to make some tortillas, some toasted broad beans to snack on and some raw dairy free chocolate ( which was absolutely disgusting) that i wont be buying again!!!

 

stick with the "wholefoods" for a while until you heal. good luck x

 

hi jiggles, just seen another of your posts and see your in the uk too! - thought maybe you were in america or canada. your probably thinkin - what is she talkin about! lol. maybe its a manchester thing callin a health food shop a wholefoods store. hope it helped anyway :)

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bartfull    565

There is a chain of health food stores in America called "Whole Foods".

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jiggles    2

Hi jhol yes it did help thanks , I understand a bit more now , yes I am from the UK too , not far from Chester, Manchester isn't that far away either , yes kthe UK is a bit behind for gluten free shampoo and gluten free make up ,

I just got a lovely lipstick from Red apple in America , they are really lovely gluten free lipsticks and lip liners ,

yes the gluten free ranges in the supermarkets sections in the UK are getting much better

someone told me if you like dark chocolate Kinnerton do a really nice dairy free gluten free dark chocolate in the free from section in Sainsburys they have milk chocolate buttons too,

Yes I too think I have more healing to do before I add anymore foods that aren't whole ones, but I am really happy to be enjoying eating some fruit again :)

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