• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • 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.

Upset, Confused, Venting, Scared & Frustrated
0

102 posts in this topic

Sometimes I think it's a chain reaction. Right now your ai system is in overdrive.

You may have to pull all of it waaaay down - gluten, sals, iodine then cautiously add back.

I bet the mouthwash/gel was like the straw that broke the camel's back, though.

Keep the rash lubricated. Find a cream/lotion that is no sal - which will mean synthetic. Sorry. I like Vanicream, if they have it there. Try covering the finger with a band-aid. Irritation just exacerbates skin conditions.

At the risk of sounding mentally challenged, synthetic cream means no natural ingredients?

Thanks for your advice. You're a life-saver.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


At the risk of sounding mentally challenged, synthetic cream means no natural ingredients?

Thanks for your advice. You're a life-saver.

Yes. Nothing natural. You may find something low-sal with extracts but not easily. There may be some no sal natural stuff out there but it will take some researching (and probably ordering). It's an unfortunate fact. That's why I stuck with Vanicream - gluten-free, no sal. Not all chemicals are low sal, but some are. I found Vanicream listed as no sal on some site, don't remember where.

Oils like jojoba (what I used) are high sal. After I healed it was ok to use, but I didn't chance it during my worst DH days.

0

Share this post


Link to post
Share on other sites

Here's a list. I don't know if ingredients are different in Sweden, or what's available to you.

http://www.reyessyndrome.org/pdfs/MoisturizersSalicylateFreeProducts.pdf

You might try safflower or sunflower oil if you want a natural moisturizer. I don't know how they feel on skin. Try it? I find my DH needs super-moisturizing.

0

Share this post


Link to post
Share on other sites

I was using a bunch of herbals & homeopathic remedies recommended by

a Naturopath (before DX) and later learned that THOSE are loaded

with sals, too. Oils, too. My system was saturated.

0

Share this post


Link to post
Share on other sites

I was using a bunch of herbals & homeopathic remedies recommended by

a Naturopath (before DX) and later learned that THOSE are loaded

with sals, too. Oils, too. My system was saturated.

Yep. Botanicals would be. I was a jojoba oil /almond oil girl. Natural salt deoderant....natural hair sprays, gels, Aveeno powder for exfoliant, henna hair color (had wheat in it). Skin care had oats and wheat germ oil in it.

I had to change EVERYTHING.

Wow. That trip down memory lane made me want a drink...luckily I have Ciroq on hand :).

0

Share this post


Link to post
Share on other sites
Ads by Google:


Boy! Did I ever miss out on a lively discussion today! Where the heck do I start?

IH, I echo Dani in that your "but" is welcome anytime!

And NO ONE is taking this thread away from me (I own it & I'm not giving it up!tongue.gif) --- just kidding you know ---- all of the discussion is relevant. And why the heck can't we have a round table discussion? That's the way I feel & I'm sticking to it.cool.gif

Prickly, you have helped me so much since the first day I came on this board that I am thrilled that I could inspire you & return the favor in some small way. YAY!smile.gif And I adore this milk. It's pasteurized (by law) but not homogenized & only comes in whole milk --- no low fat stuff. I need it. I'm 5'2" & 98 ibs. --- I can use some fat to fill out these wrinkles!blink.gif

It has been a very busy, very stressful day. I did feel so optimistic this morn that I actually began working on our income taxes. Then I was interviewing listing realtors to sell our house we moved from. WHEW! Reading contracts & comps. & gobs of detailed info. all day long. And trying to decide who is schmoozing me, who is being honest & who is being lazy. But this will all be worth the stress as it will take tons of stress off us once we sign with the realtor we pick.

I had a low sal lunch & dinner. Get this.... how freaking weird is dh? I've had 2 itsy bitsy "bite" type of itchies arise today & all the others seem to be on the wane. Now there's no way that I believe low sals worked that fast. But WTF? The dh just up & decided to start going away? I don't trust it! It's determined to torture us, I know it is. But I'll take what relief I can get & be thankful for it.

And oh, IH; I just LOVE your red toenails! Good for you girl! And walking 3/4 mi. 2 days this week? Sounds like great strides to me. Be proud. And enjoy!

And Dani, about the IQ thing. it's part of the process. I went through a phase where my IQ was about -20. I literally couldn't think of the name for a fork & would finally end up saying, "You know those things you spear your food with to eat?" Honestly.

Well drat! Beer is out b/c of gluten & I just bought some wine Monday & now that's out b/c of sals. I KNEW there was a reson I always like Wodka.laugh.gif

And I have to give up the Olive oil. Guess I'm back to safflower oil.

Prickly, Are you kidding me? Jojoba oil is high sals? Oh crud. It's in my body wash. And I just bought some almond oil too. ph34r.gif

Hopeful, I hate to hear dh is striking you this long after being gluten-free. Seems like we're hearing a lot of people with similar happenings. And the scarier part is that there have been a lot of posters who were only GI symptoms & gluten-free for many, many years & now when they get cc'd they're turning up with dh. ?????HUH?????

I would like you guys opinion. Do you think I can go back to eating my Ouinoa? I have no idea if it's high sal or not as I couldn't find it on any list.

0

Share this post


Link to post
Share on other sites

YAY! Happy dance.biggrin.gif Thank you Prickly! You are very good at finding things.

And I just thought of something..... I could swear that this morning I saw on one of the sal lists that fresh tomatoes were okay but canned were not. Saw the discussion about it & I must have been hallucinating b/c you're right --- all the lists list it as high sal be it fresh or not.

0

Share this post


Link to post
Share on other sites

YAY! Happy dance.biggrin.gif Thank you Prickly! You are very good at finding things.

And I just thought of something..... I could swear that this morning I saw on one of the sal lists that fresh tomatoes were okay but canned were not. Saw the discussion about it & I must have been hallucinating b/c you're right --- all the lists list it as high sal be it fresh or not.

I thought I saw it listed as moderate (fresh), but tomato products were high. I dunno.

0

Share this post


Link to post
Share on other sites

raisins were a really good 'sals' trigger for me. ((Can you believe a DH trigger can be "good"!!! The more we know the more we cure.)It was the first and most obvious thing that led me down the sals path. They are easy and cheap to acquire and you can eat a heap of them with only (if like me) a temporary reaction.

http://everydaywithadhd.createyouroutcome.com.au/user-assets/Info_Sheets/Salicylate_Food_Chart.pdf

0

Share this post


Link to post
Share on other sites

Boy! Did I ever miss out on a lively discussion today! Where the heck do I start?

IH, I echo Dani in that your "but" is welcome anytime!

And NO ONE is taking this thread away from me (I own it & I'm not giving it up!tongue.gif) --- just kidding you know ---- all of the discussion is relevant. And why the heck can't we have a round table discussion? That's the way I feel & I'm sticking to it.cool.gif

Prickly, you have helped me so much since the first day I came on this board that I am thrilled that I could inspire you & return the favor in some small way. YAY!smile.gif And I adore this milk. It's pasteurized (by law) but not homogenized & only comes in whole milk --- no low fat stuff. I need it. I'm 5'2" & 98 ibs. --- I can use some fat to fill out these wrinkles!blink.gif

It has been a very busy, very stressful day. I did feel so optimistic this morn that I actually began working on our income taxes. Then I was interviewing listing realtors to sell our house we moved from. WHEW! Reading contracts & comps. & gobs of detailed info. all day long. And trying to decide who is schmoozing me, who is being honest & who is being lazy. But this will all be worth the stress as it will take tons of stress off us once we sign with the realtor we pick.

I had a low sal lunch & dinner. Get this.... how freaking weird is dh? I've had 2 itsy bitsy "bite" type of itchies arise today & all the others seem to be on the wane. Now there's no way that I believe low sals worked that fast. But WTF? The dh just up & decided to start going away? I don't trust it! It's determined to torture us, I know it is. But I'll take what relief I can get & be thankful for it.

And oh, IH; I just LOVE your red toenails! Good for you girl! And walking 3/4 mi. 2 days this week? Sounds like great strides to me. Be proud. And enjoy!

And Dani, about the IQ thing. it's part of the process. I went through a phase where my IQ was about -20. I literally couldn't think of the name for a fork & would finally end up saying, "You know those things you spear your food with to eat?" Honestly.

Well drat! Beer is out b/c of gluten & I just bought some wine Monday & now that's out b/c of sals. I KNEW there was a reson I always like Wodka.laugh.gif

And I have to give up the Olive oil. Guess I'm back to safflower oil.

Prickly, Are you kidding me? Jojoba oil is high sals? Oh crud. It's in my body wash. And I just bought some almond oil too. ph34r.gif

Hopeful, I hate to hear dh is striking you this long after being gluten-free. Seems like we're hearing a lot of people with similar happenings. And the scarier part is that there have been a lot of posters who were only GI symptoms & gluten-free for many, many years & now when they get cc'd they're turning up with dh. ?????HUH?????

I would like you guys opinion. Do you think I can go back to eating my Ouinoa? I have no idea if it's high sal or not as I couldn't find it on any list.

Be careful with the Quinoa Squirming! I saw a post on the gluten-free group on facebook about it being CC. I have not verified this story by looking it up on other sources yet, but here's the post I read:

"Recent news about some quinoa being dried under a covering of barley has raised concerns about gluten free for Passover products that may not be as suitable as previously thought for those who are gluten sensitive or celiac. Some of these products test at 100ppm, which if you are not sensitive is ok. How do people feel about this? Share your insights and knowledge as many people will be out there purchasing non-gebrochts for Passover products that are readily available at this time of year. Help others be informed through personal experience."

I tried googling about it but only got some facts about quinoa.

I'm glad you guys are managing to get lots of things done and achieving. Hope I join you on that wagon soon by producing more as well! I would go get myself a manicure but it seems I'll be needing to focus on getting new soaps and creams. I would really like to paint my nails but I haven't managed getting myself a gluten-free nail polish yet.

I'm super glad your DH is subsiding Squirming :-) Let's hope this lasts! Do you notice that if your DH surfaces that it happens at a certain part of the day? Mine seems to be waking up in the evenings and not being there when I wake up.

0

Share this post


Link to post
Share on other sites

Here's a list. I don't know if ingredients are different in Sweden, or what's available to you.

http://www.reyessyndrome.org/pdfs/MoisturizersSalicylateFreeProducts.pdf

You might try safflower or sunflower oil if you want a natural moisturizer. I don't know how they feel on skin. Try it? I find my DH needs super-moisturizing.

Thank you sooooooo much for this list Prickly! Really makes my search easier. They still might contain gluten though which is the hardest part.

I've been having trouble finding products here actually. Everyone gives me these funny looks and the standard "on come on products can't possibly contain this" when I ask if they know what toothpaste is gluten-free. I've been even asking pharmacists about G6PD friendly pain killers and they don't know what G6PD is!

I don't have favism but I'd be hoping they'd understand what I'm talking about when I tell them "favism", and they still stare at me as if I'm a crazy person.

0

Share this post


Link to post
Share on other sites

Dani thanks so much for the alert on the Quinoa! I found some info. on it.

http://www.glutenfreewatchdog.org/blog.php?id=8

http://www.crcweb.org/alerts.php

This should be posted in a new thread to the entire board not just the dh area. I don't have the time this minute but will get to it later when I do. HOWEVER ---- If someone has a moment now to post it in a new thread in the appropriate forum then PLEASE do so.

0

Share this post


Link to post
Share on other sites

I got some of that special passover quinoa and I had problems with it too. Yet, I have another quinoa source which can eat every day. Unfortunately I can't get any more and I'm running out! I'm very sensitive by the way.

0

Share this post


Link to post
Share on other sites

Your story sounds a lot like me. I am 1 1/2 months gluten free and still having skin problems. I know it will take a some time to get better we didn't get here overnight. Hope things start going better for you soon.

0

Share this post


Link to post
Share on other sites

Oh Steph, that's awful. It seems the more celiac is diagnosed & the more people go gluten-free the more we are going to encounter this kind of thing.

I'm sitting here with 4 boxes unopened which I am not going to touch b/c I can't be sure of them. I do wonder if I rinse it very well before I cook it if it would make it okay? Would that clean the particles off of it? I have to order mine online & that's why I get so much at one time. I may have to ask the supplier to give me a refund.

0

Share this post


Link to post
Share on other sites

Is there a complete list somewhere. I looked at the list above but read that coconut was very high and coconut wasn't on that list. I have looked all over the internet and can't find one. :huh::blink:

0

Share this post


Link to post
Share on other sites

Thank you sooooooo much for this list Prickly! Really makes my search easier. They still might contain gluten though which is the hardest part.

I've been having trouble finding products here actually. Everyone gives me these funny looks and the standard "on come on products can't possibly contain this" when I ask if they know what toothpaste is gluten-free. I've been even asking pharmacists about G6PD friendly pain killers and they don't know what G6PD is!

I don't have favism but I'd be hoping they'd understand what I'm talking about when I tell them "favism", and they still stare at me as if I'm a crazy person.

Dani, do you realize if you do have DH with your g6pd you can't use the traditional treatment of dapsone?

0

Share this post


Link to post
Share on other sites

Dani, do you realize if you do have DH with your g6pd you can't use the traditional treatment of dapsone?

I don't use it. Didn't hear of it before now actually. I'm not using any medicines at all. Are you all using it?

0

Share this post


Link to post
Share on other sites

I don't use it. Didn't hear of it before now actually. I'm not using any medicines at all. Are you all using it?

I don't. Some people have used it and find it quite helpful. It requires monitoring since it can have severe side effects.

I think one barrier is that most people can't get a DH dx, so no prescription.

0

Share this post


Link to post
Share on other sites

I don't. Some people have used it and find it quite helpful. It requires monitoring since it can have severe side effects.

I think one barrier is that most people can't get a DH dx, so no prescription.

Good to hear it's not a must :-) I'm done with medications. Spent two thirds of my life taking pills I never needed which are probably behind some silly OCD habits. I would rather remedy myself by avoiding whatever makes my systems crash.

0

Share this post


Link to post
Share on other sites

Oh Steph, that's awful. It seems the more celiac is diagnosed & the more people go gluten-free the more we are going to encounter this kind of thing.

I'm sitting here with 4 boxes unopened which I am not going to touch b/c I can't be sure of them. I do wonder if I rinse it very well before I cook it if it would make it okay?

I have 12 boxes of the stuff. I usually wash my grains, seeds and nuts. I think that it helps somewhat. Fortunately I have a not so sensitive celiac husband to eat my rejects. I also have a freezer full of rejects.

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
      106,395
    • Total Posts
      930,317
  • Member Statistics

    • Total Members
      63,813
    • Most Online
      3,093

    Newest Member
    Teressa
    Joined
  • Popular Now

  • Topics

  • Posts

    • I would say get retested, to be sure, do a gluten challenge with her where she eats gluten for 12 weeks, not much just a half slice of bread a day or a wheat cracker for the blood test and 2 weeks for the biopsy. You mentioned bumps, and dry patches...this might be DH from celiacs and if it is you can go to a dermatologist and they can test it. In some people with DH reactions to gluten, their intestines do not show much damage as most of the antibodies are directed elsewhere. In this case you would have your symptoms. Now Celiac is a autoimmune disease that commonly has other auto immune diseases associated with it. NOW if your daughter has the gene for it she could have another automimmune disease I am not very familiar with and someone else might be able to help you more on suggestions for testing. Now in my personal opinion it sounds like she was still getting into gluten when you said she was off of it. NOTE gluten is a tricky bugger, it is a protein smaller then a germ that can stick in cracks and scratches on all your utensils, food prep area, knifes, etc. As a flour it can hang in the air for hours and even be inhaled effecting some of us. It is present in a lot of things we do not consider, like makeup, playdough, shampoos, seasonings, sauces, even some dry wall spackles.  Now if she is in a shared house hold with other kids and not everyone is on this diet she has likely been getting into gluten somewhere, like touching glutened surfaces the other kids touched after eating gluten foods then putting her hand in her mouth or on safe foods. Or just randomly eating gluten foods, note symptoms can last weeks and wane from how it is effecting you. It does not take much to trigger symptoms you might have to be more careful and move her to a whole foods only diet, and have a separate prep area, utensils, cooking zone for her if you wish to keep fixing separate meals for her vs the gluten family.     I would suggest just changing the entire family over, anyway perhaps start with a separate fold out table, use freezer paper to line the prep area, a microwave, mini toaster oven, and some microwave cook ware like steamers, steam bags, etc. and using gloves to fix her meals. She will need her own condiment jars (crumbs in hte jars) and area for safe snacks. I would suggest getting her only gluten-free CERTIFIED FOODS for now. You can find some whole food healthy snacks at mygerbs.com, and a few other places. I will provide a link to gluten-free food list. PERHAPS you can change the entire family over....now days it is more like changing brands as everything you used to eat is available in a gluten-free brand. ALSO have a lot of dairy free options there. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/  
    • Hi wondering if someone could help. my daughter has mildly raised TTG  levels and the gliadine levels, she has one Coeliacs gene, but her biopsy came back negative.   We have kept her off gluten (and low dairy) for nearly a year to see if her symptoms improved.  They haven't.  But I don't know if they are related to gluten specifically.  Just wondering if anyone has other suggestions that may be going on with her.  Her symptoms are: - Short stature, she's nearly 9 and my 6 year old boy is nearly bigger than her - bumps on back of her arms - urine leaking and occasional soiled pants, which could be from constipation she has at time's - sticking out stomach - dry patchy rashes on her face - joint pain sporadically - vomits every 6 weeks, but hasn't had gluten and seems to be no food connection - reoccurring thrush She had gluten last night at a party and was fine today. I'm a bit lost and not sure where else to turn.  Thanks for any help.
    • We have gone gluten free, our whole house, as of a month ago. It was pretty seamless since I had been gluten-free for 5 months last year. I have found many good recipes, and my picky husband and one of my boys who is also a picky eater, even prefer many gluten-free recipes to the regular ones.  My husband did see my point about the size of the gluten protein means nothing. Its a gluten protein period, that's what you are avoiding. It doesn't matter if its hiding in the scratch of your baking sheet and you can't see it. You can't see the wind, but it's still there. I hear you on the anemia. I've been anemic for several years, I just thought it as because I was getting a little older. Has your anemia gone away or do you still have problems with it? 
    • Ennis, it is made out of metal, coated with plastic I think. You have such a hard time, my heart really hurts for you. But you are such a support to those on this board, and a great teacher for those of us who are new.  
    • Thanks everyone! I think its hard for people to fully accept because they cant see the damage it does every time you get glutened. It's invisible. Im glad to know I wasnt being paranoid. I sure was when I was first diagnosed. I laugh at myself now, but its a pretty steep learning curve. 
  • Upcoming Events