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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.

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Rachel--24    4

It seems like after I get an initial reaction I might feel bad for a day or two. Sometimes after this I'll start to feel better...maybe for a day...but then the symptoms will return. It will go back and forth like this for a couple weeks. Is this normal or is something else causing me to start feeling bad again? I'm wondering if other people get these "off and on" symptoms or is it more like you feel bad right away and gradually get better with each day?

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laurelfla    5
I'm wondering if other people get these "off and on" symptoms or is it more like you feel bad right away and gradually get better with each day?

<{POST_SNAPBACK}>

i want to know too!

i had tummy troubles, nausea and fatigue when school started a couple of weeks ago, then i felt better for about 2 days, then the symptoms came back, then they went away again, then they came back, and i'm finally feeling okay now. i have tracked down a couple things i was using (moisturizer, shampoo, etc) that contained gluten, but am not sure if those were the problem or whether i ate something sketchy. and if i ate something sketchy, was that all one reaction or several? no idea! :( i gues it is a tough question to answer, though, since everybody's experience is so individualized.

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Drew    0
It seems like after I get an initial reaction I might feel bad for a day or two. Sometimes after this I'll start to feel better...maybe for a day...but then the symptoms will return. It will go back and forth like this for a couple weeks. Is this normal or is something else causing me to start feeling bad again? I'm wondering if other people get these "off and on" symptoms or is it more like you feel bad right away and gradually get better with each day?

<{POST_SNAPBACK}>

My best guess would be that you are getting dosed with gluten again and again. It is extremely difficult to actually eat gluten free unless you completely give up on eating out.

For me, if I am eating gluten free my symptoms clear up within a week. I get DH and there are days when I thought I was doing well but those spots appear. Sometimes I feel like crying at that point because its too late and I know I will have to wait it out as more sores run their course, for up to a week. However I would say that symptoms appear worst 1 to 2 days after being glutenized, then get steadily better if no more is ingested

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Rachel--24    4

Thanks for your reply :)

I'm sure you're right...I just found out today that I've been eating some tortilla chips which are no longer guaranteed gluten-free. :o That could very well be the cause of my ups and downs the last couple weeks. I'll just have to wait it out...again. :(

Oh yeah...I haven't eaten out in months and I dont plan on trying it till I get much better. Does your DH ever show up as a single blister or do they always have to come in groups? On my arms there are usually several of them but occasionally I'll get a couple blisters on my face...right now there is one on each cheek. The same spot...both sides. They don't itch like the ones on my arms but they take forever to go away when I get them. Its definately a reaction but I don't know if its dh or not. Do they ever show up like this?

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BabySnooks    0
i want to know too!

i had tummy troubles, nausea and fatigue when school started a couple of weeks ago, then i felt better for about 2 days, then the symptoms came back, then they went away again, then they came back, and i'm finally feeling okay now. i have tracked down a couple things i was using (moisturizer, shampoo, etc) that contained gluten, but am not sure if those were the problem or whether i ate something sketchy. and if i ate something sketchy, was that all one reaction or several? no idea!  :(  i gues it is a tough question to answer, though, since everybody's experience is so individualized.

<{POST_SNAPBACK}>

I still have a lot of questions. I have no symptoms (diagnosed in July, 2005). Why is a moisturizer or shampoo containing gluten bad? I thought you had to ingest gluten for it to harm you????

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Guest katzmeow21   
Guest katzmeow21
I still have a lot of questions.  I have no symptoms (diagnosed in July, 2005).  Why is a moisturizer or shampoo containing gluten bad?  I thought you had to ingest gluten for it to harm you????

<{POST_SNAPBACK}>

If you go to celiacdiseasecenter.columbia.edu/CF-HOME.htm it gives great info on many aspects of celiac disease. I just read tonight that they feel(and they are researchers) that probably gluten-free moisturizers, shampoos are most necessary for celiac disease'ers with skin problems but can be done as extra precaution if you choose. I guess I would choose especially to make sure that lipstick is gluten-free as you literally eat that off. And another consideration is how frequently we are using patches to deliver everything from birth control to nitro glycerin. So its very factual to realize that our skin could possibly absorb this also.

mary jane

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aikiducky    1

I think that what a lot of people are concerned about (me too) isn't shampoo, conditioner etc. being absorbed by the skin but getting in your mouth while washing, or getting on your hands and then in your mouth later when you eat etc. Personally I prefer gluten-free shampoo etc. because then that's one less thing to watch out for in the house...

Pauliina

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Rachel--24    4
I think that what a lot of people are concerned about (me too) isn't shampoo, conditioner etc. being absorbed by the skin but getting in your mouth while washing, or getting on your hands and then in your mouth later when you eat etc.

<{POST_SNAPBACK}>

This is the reason I switched to gluten-free...I got sick from my lotion because I was touching my food, licking my fingers and I discovered that I absentmindedly touch my lips everytime I'm sitting here on the computer. :blink:

Also its not that hard to get shampoo in your mouth while showering...or maybe its just me but for that reason I switched.

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leudy    0
It seems like after I get an initial reaction I might feel bad for a day or two. Sometimes after this I'll start to feel better...maybe for a day...but then the symptoms will return. It will go back and forth like this for a couple weeks. Is this normal or is something else causing me to start feeling bad again? I'm wondering if other people get these "off and on" symptoms or is it more like you feel bad right away and gradually get better with each day?

<{POST_SNAPBACK}>

I do the same thing! It seems to last for 2-7 days and then I will be okay until another atttack. Are your symptoms only gastro? I am having swelling in the throat and eso. and I feel like I have been blown up with air. Sound familiar?

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KaitiUSA    7
I do the same thing!  It seems to last for 2-7 days and then I will  be okay until another atttack.  Are your symptoms only gastro?  I am having swelling in the throat and eso. and  I feel like I have been blown up with air.  Sound familiar?

<{POST_SNAPBACK}>

Swelling is a sign of an actual allergy and that can be serious so don't mess around with that at all. I have an allergy to wheat in addition to celiac and that sounds very familiar...a few times I had to go to the ER because I felt like I could not breathe.

BabySnooks- in regards to the products to be gluten free..it's not a concern about being absorbed in the skin because it can't enter through skin unless you have an open cut. The problem is there is high chance of ingesting trace amounts of products in some way, shape, or form. If you wash your hands with gluten containing soap and then prepare your food, now your food is contaminated with traces of gluten. There are those things that need to be addressed as well.

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Rachel--24    4
I do the same thing!  It seems to last for 2-7 days and then I will  be okay until another atttack.  Are your symptoms only gastro?  I am having swelling in the throat and eso. and  I feel like I have been blown up with air.  Sound familiar?

<{POST_SNAPBACK}>

I rarely get the "typical" gastro symptoms. My symptoms are muscle/joint pain, burning/tingling, depression, brainfog, weight loss, fatigue, headache, burning eyes and mouth. Bascially everything but the cramps and diarreah. I've never gotten swelling in my throat though....I think probably Kaiti is right about that being an allergy symptom.

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Guest katzmeow21   
Guest katzmeow21
This is the reason I switched to gluten-free...I got sick from my lotion because I was touching my food, licking my fingers and I discovered that I absentmindedly touch my lips everytime I'm sitting here on the computer.  :blink:

Also its not that hard to get shampoo in your mouth while showering...or maybe its just me but for that reason I switched.

<{POST_SNAPBACK}>

Please advise what shampoo you use. Also what dish deterget, hand soap and moisturizer :) I have been looking online and found Johnson baby shampoo and suave. What about conditioner?

Thanks

PS. I have found that Lancome and Avon have lots of lipsticks that are gluten free

Waiting to see if my favorite MAC lipstick is gluten-free. :unsure:

mary jane

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Rachel--24    4
Please advise what shampoo you use.  Also what dish deterget, hand soap and moisturizer :)  I have been looking online and found  Johnson baby shampoo and suave.  What about conditioner?

<{POST_SNAPBACK}>

I use Dove soap, Planet dish detergent, Lubriderm Extra Sensitive lotion, All free and clear detergent, California Baby super sens. shampoo & conditioner or Paul Mitchell instant moisture conditioner.

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jenvan    7

mary jane-

i use a softsoap hand soap...and for my body washes i now use California Baby products. they are all natural and the entire line is gluten-free. you can see them at californiababy.com oh, and i just see rachel posted that she uses those products too. they are great. what mac lipstick do you use? i used to have a ton of their makeup, and in the end i got rid of it all...i always felt like i was still taking a risk. 2 types of their lipsticks definitely contain wheat germ oil. i posted what ones here before: http://www.glutenfreeforum.com/index.php?s...407entry42407

benefit says all their lipsticks are gluten-free. i now use only bare escentuals lipsticks. if you read the post above it might give you more info...it is on makeup, skin care products etc that are gluten-free.

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Guest katzmeow21   
Guest katzmeow21
mary jane-

i use a softsoap hand soap...and for my body washes i now use California Baby products.  they are all natural and the entire line is gluten-free.  you can see them at californiababy.com  oh, and i just see rachel posted that she uses those products too.  they are great.  what mac lipstick do you use?  i used to have a ton of their makeup, and in the end i got rid of it all...i always felt like i was still taking a risk.  2 types of their lipsticks definitely contain wheat germ oil.  i posted what ones here before:  http://www.glutenfreeforum.com/index.php?s...407entry42407

benefit says all their lipsticks are gluten-free.  i now use only bare escentuals lipsticks.  if you read the post above it might give you more info...it is on makeup, skin care products etc that are gluten-free.

<{POST_SNAPBACK}>

thanks to both Rachel and you for the info. much appreciated :)

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Rachel--24    4
mary jane-

i use a softsoap hand soap...and for my body washes i now use California Baby products.  they are all natural and the entire line is gluten-free.  you can see them at californiababy.com  oh, and i just see rachel posted that she uses those products too.  they are great. 

<{POST_SNAPBACK}>

Yup...you recommended them to me awhile back. Thanks for that! I ordered them online but also found them at Whole Foods. Perfect for me since I have chemical sensitivities (which seem to be improving).

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Drew    0
On my arms there are usually several of them but occasionally I'll get a couple blisters on my face...right now there is one on each cheek. The same spot...both sides. They don't itch like the ones on my arms but they take forever to go away when I get them. Its definately a reaction but I don't know if its dh or not. Do they ever show up like this?

<{POST_SNAPBACK}>

Yes the bumps can show up one at a time. And if they show up symmetrically as they have on your face, thats a classic symptom of DH.

Well it sounds like you are commited to eating gluten free. I am too but so far I have only succeeded for at most a month at a time. I keep getting zapped ! We just have to keep trying and I am sure things will get easier as more people recognize that they too are Gluten Intolerant

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Rachel--24    4
Yes the bumps can show up one at a time.  And if they show up symmetrically as they have on your face, thats a classic symptom of DH.

<{POST_SNAPBACK}>

I hate these bumps. :angry:

I'm thinking they're probably not DH since they don't itch at all. I just call them gluten bumps since they come if I get severely glutened. Funny...I only had them in the very beginning of my illness...then none for 2 years...and now that I'm gluten-free they are back! <_<

They've been on my cheeks 3 weeks now and I know they'll probably be around for a long long time. They just look like sores now. :(

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Guest BERNESES   
Guest BERNESES

I actually get cystic acne on my face when glutened (OUCH!) and then as the gluten gets out of my system, it goes away. Weird!

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Rachel--24    4
I actually get cystic acne on my face when glutened (OUCH!) and then as the gluten gets out of my system, it goes away. Weird!

<{POST_SNAPBACK}>

What is cystic acne like? Are they like bumps that stay for a really long time? Mine don't itch or hurt. Also they don't have pus or fluid or anything. They just look like blisters at first and then they dry up and look like little sores.

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Guest katzmeow21   
Guest katzmeow21
After 4 !/2 months gluten-free I'm only just starting to feel that I can tell what's going on as to whether I've had gluten or not.

At first I felt fantastic, as lots of people say, and I think that might be just taking away the big gluten load. There've been lots of ups and downs when I haven't been able to tell whether I've glutened myself or have developed another food problem. I think it might be a mixture of both, plus it just takes time to get better.

I've had 1 definite glutening where I felt horrible for 2 weeks, which helped put the other ups and downs in perspective. Recently I licked an envelope and watched the same symptoms come and go over just a couple of days. It's really hard to be completely gluten-free at first, and it's really hard to pin down symptoms to a particular thing.

Two things I've found useful: firstly really limiting my diet to things that definitely seem ok, and not experimenting at the moment, and secondly keeping a food diary. Most days if I feel ok I can't be arsed to write anything down, so it's become a diary of possible glutenings, and is really useful to look back over. Also, it makes it very obvious that things are getting better when I see I haven't written anything for a couple of weeks.

I got very cross with myself earlier this week when I knew I had definite gluten symptoms without having eaten anything suspicious. It's taken me a while to sort out what gluten symptoms are for me, but I've found the sure one's are diarrhoea, then itchy feet, exhaustion, indigestion pains, twitches and aching muscles. I double-checked everything I could think of. I was giving my husband nasty hints about maybe getting a muffin crumb somewhere. Eventually I checked my new Dove face wash. I'd remembered something about Dove being ok, but had forgotten it was ok because gluten is labelled, and I hadn't read the label - this stuff was full of gluten. I was really pleased to find the cause of my symptoms. A little while ago I just wouldn't have been able to tell that I'd definitely had gluten or narrow down where it came from.

So, I mainly wanted to say it does get easier. And Kaiti is absolutely right, I'm sure you can get glutened by stuff you put on your skin if it gets in your mouth.

Best wishes,

Matilda

<{POST_SNAPBACK}>

Matilda- I just read your symptoms and felt like you are almost the first who I've read gets this twitching. I'm new to this forum and there has been one other of all I've read that gets this(or maybe it was you :unsure: . Is it actual muscle twitching all over the body or more in the legs . Also the itchy foot thing... I'm trying to figure out why my hands and feet get this burning feeling on/off and it's induced by pressure or rubbing .. then it gets kind of an itch.

mary jane

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