Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      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.

Symptoms
0

23 posts in this topic

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?

0

Share this post


Link to post
Share on other sites


Ads by Google:
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.

0

Share this post


Link to post
Share on other sites
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

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites
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????

0

Share this post


Link to post
Share on other sites




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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites
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?

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites
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

0

Share this post


Link to post
Share on other sites

Dove products will clearly indicate gluten

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
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 :)

0

Share this post


Link to post
Share on other sites
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).

0

Share this post


Link to post
Share on other sites
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

0

Share this post


Link to post
Share on other sites
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. :(

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites
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.

0

Share this post


Link to post
Share on other sites
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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,344
    • Total Posts
      917,402
  • Topics

  • Posts

    • Daughter with celiac- need test result help
      Thanks so much for your reply and the encouragement! She has not had the dgp test. I will ask her doctor at the next appointment in two weeks. Her doctor is out of the country now for a family emergency so I can't talk to her before her appointment. Her thyroid is good. The whole thing has been tough - logistically dealing with the dietary change and how extremely careful we have to be. Emotionally - worrying about her health and her feelings about all of this. I'm happy her number came down so much. There's hope. I'm just praying there's not more wrong and trying to prevent any possible risk of cross contamination. It seems she's very sensitive. It's also tough she's a kid at school with gluten on every surface. 
    • Newbie: mother to coeliac kids
      Wonderful news to hear that he has finally had his testing done, and can go gluten free. I understand that he is afraid of needles. Most children are. It is great that the hospital have acknowledged his and your family's suffering. Hopefully now they will give him the A1 treatment that he deserves. I am really looking forward to hearing of his improvement, as no doubt he will come along in leaps and bounds. Children are remarkably resilient, and with any luck he will enjoy a healthy and bright future with adherence to his required diet. Way to go Mum, you have been through a lot, watching your boy suffer. I hope that you are handsomely rewarded with being able to watch him flourish now. Good luck with your older boy too. Keep us posted.
    • Newbie: mother to coeliac kids
      Well thank goodness the gluten eating is over for him now & he can begin the journey back to good health! Poor fella. He was so sick! Just a heads up --- he isn't going to feel better instantly but at least he's a kid & they heal faster as a general rule. Bone broth!!!! Yaaaaaaaaaaaaaaaayyyyyyyyyyyyyyyyy mom! That's really going to help him!   Do I recall correctly that you still have the 17 yr. old to go through testing yet?
    • Weird Reaction
      Hi Richard Glad you are feeling better!   Sorry - DX is an abbreviation for diagnosis.   Thanks so much  for the info about MSG, broccoli and IBS.  Like you say, there is v. little bad press about broccoli. My aunt, who is a farmer's wife, put forward another theory that it might not have been the broccoli itself but rather some insecticide a farmer sprayed on it.   I just can't bring myself to try organic broccoli however...  Thankfully cauliflower is fine.  I just can't figure it out as I thought they were the in the same vegetable family?  So maybe it is MSG. Regarding anemia, there can be a link with iron anemia and anxiety. http://www.livestrong.com/article/471225-iron-anxiety/ And I was definitely breathless before my diagnosis; I remember finding myself  walking up a hill behind a  huge crowd of friends on a church walk, and many of them were at least 20 years older than me, and wondering why I was in last place! My B12 levels were very low at DX and I found B12 supplements helped enormously with anxiety.   I remember drinking Berroca and feeling so much better within hours of drinking it, on more than one occasion, before even understanding the link. I have just been told however that I can't take any more iron because my hemoglobin is on the high side.  It is a good thing my doctor was monitoring my supplementation as I gather too much iron can be dangerous.  Have you been told to supplement by your doctor?  If you are supplementing make sure you get your levels monitored. All the very best - and welcome to the forum!    
    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,478
    • Most Online
      1,763

    Newest Member
    Andrew Miller
    Joined