dani nero

That is a real kick in the bum and really not fair!

Regardless of the fact I would still not touch it. You shouldn't, specially since you've been gluten-free for a while, which means you're way more sensitive now and the reaction will from at you with a vengeance! It will bring you so much pain, so much itch, so much fatigue and fog. Your taste-buds can wait for another occasion though and you can spare yourself the suffering. Make another batch and eat it all by yourself ;-)

Hi Giggleburner! I just saw this post on the gluten-free page's wall on facebook, and I thought of this post immediately. I don't know how "valid" or true it is since I didn't looks it up from different sources though.

"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."

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You can bake them like a regular potato. You can out them in chunks in a soup. I like to scrub them, boil them about 5 minutes (depends on how big they are). You don't want them mushy just partially cooked. Slice up thin, toss with olive oil & a sprinkle of salt. Spread out on a baking sheet. Roast them in the oven. When done, I like a bit of cinnamon on them some like sugar, too.

That all sounds yummy thanks! What type of soup do you put them in? My choices are very limited.

Do you have a microwave? My microwave has a "Jacket Potato" setting and I just push that button, it asks me to turn the potato over halfway through, and then when done wrap it in foil and let it steam for about 10 minutes. It is so easy. Or you can bake in the oven. Or you can cut in wedges and slices and spray with oil and oven bake. Or cut them in cubes and steam/boil them. Mash later if you want.

I don't have a potato button but I'll figure it out :-) What spices do you add when you mash them?

E551 is gluten-free so it wouldn't go on the unsafe list. As Pater says, it's silicon dioxide or sand.

It sounds like they are adding flour or some other form of undeclared gluten along with the silicon dioxide. It's maddening when that happens and zaps you! Maybe you should retitle your thread to be a warning against Santa Maria products with E551? Or Santa Maria products in general if they're going to add gluten to what should be a safe additive?

Agreed :-) Thanks for changing the title for me, I didn't find an option to do it myself.

I'm watching the carbs, but need some or I keep losing weight. Sweet potatoes are my main carb, and I have zero reactions to them. I might have rice once or twice a week, and that seems to be ok too. I have been trying potato, but am not sure about them just yet. I keep making the mistake of expanding my diet too quickly because my appetite comes roaring back when I feel better, and I get the munchies really badly. I paid for my ill discipline last week with a migraine and severe nausea over the weekend, and I have no idea what the culprit was. Ho hum, back to basics again!

Glad you had good news Dani!

Thanks Gail :-)

You're my absolute opposite by the way. My body loves to gain weight, which is why I watched my carb intake before starting this elimination diet.

I don't think you have ill discipline.. it's called being human. If we crave something for long enough we get opposite reactions. Sorry you have to back to basics :-(

The clementines were ok :-) I had two more last night since the glutenation symptoms are subsiding, and without problems. I just hope it stays that way, I love them sooo much lol!

I'm not sure about root veggies (since I reacted to carrots and beetroots) yet but I think I'll give the little sweet potatoes a go in a few days, and I'll alternate between them and brown rice like mushroom suggested. I have no idea how to cook them though!

Your DP is really sweet Marilyn :-D

These additive codes are used in Europe, Australia, and (I believe) New Zealand. In North America, the actual name of the substance is used.

I don't have access to a complete dictionary, but I believe E551 is silicon dioxide--quartz. Not being of organic origin, it would not have any vegetable protein of any sort--certainly not gluten.

Is made from sand and not supposed to contain gluten, so I used it and I got a reaction, which is when I found the response of the manufacturing company. They clearly stated that celics are not to consume it. They didn't say why but my guess is it might be cc with traces of gluten during the manufacturing process. I don't know, but I did get a reaction from it.

Here is their message (I translated it from swedish through google translate)

Santa Maria:

The easiest and best way to ensure this is to read on Santa Maria packaging (glass, bag, etc). If it does not say that it contains anti-caking agents E551, it is ok for you. All our spice jars with as black pepper, allspice, pepper, cayenne pepper, etc. are without E551. We also magna spice blends that do not contain E551, but the easiest is to look at the list of ingredients on the package.

Sincerely

Santa Maria AB

I wish they would do more studies on DH--the textbooks simply have all the "facts" mixed up...and in most cases absolutely incorrect. Yes, DH CAN present symmetrically, but it has been my own personal experience (and that of my son) that it can also present in a way that is NOT symmetrical. As for the DH on my face and neck, the symmetry can be uncanny--if I get a lesion on the left jawline, one in the same place appears on the other side. My facial and neck DH is ALWAYS highly symmetrical. However, sometimes I get it on the sole of my right foot and the palm and fingers of my left hand. The DH my son gets on his face and neck is also symmetrical, but he also gets DH on the sole of his left foot and the fingers and palm of his right hand (just the opposite of me). So, I wish the medical books would get updated to help people understand the different ways in which DH can present and to inform people that DH can occur anywhere on the head or body, not just on elbows and knees. From what I've read on this forum, it is extremely common on the face, neck, scalp, feet, and hands--all places where the textbooks say it can't occur or doesn't commonly occur. The medical community's lack of knowledge on this condition is shameful.

I've read a little more about DH, and one website stated that people sometimes mistake cold sores (herpes) with DH because of the blisters.

Since I got glutened my immunity went really low, and I usually get cold sores on my lip and inside my nose when that happens. I never thought of this before but the sore on my lips never itched, but the ones in my nose always make my nose itch and they always, always, come out on the exact same spot. I always thought they were cold sores because they're incredibly painful.

Nothing is textbook with celiac. When will doctors and researchers start realizing that.

I have not been officialy diagnosed with DH and only first heard of it a couple of weeks ago. But even before I heard of it I thought how strange that my rash is symmetrical. Both elbows, both hips, both knees. Though when it first started it was on one side of my neck only. I'm continually breaking out in new spots and it seems almost all of them have a corresponding breakout in the opposite side.

HOWEVER, even though this may sound like a "typical textbook case" the dermatologist tells me it isn't DH, but scabies. He further told me it doesn't look like DH and that DH doesn't itch (that's the first and only time I heard it doesn't itch). If this really is scabies it certainly isn't a "typical textbook case" becuase my elbows are the only spot I have it that corresponds with scabies. I don't have it in any of the other typical scabies spots.

I think that just like the intestinal version of scabies, with DH we all have variations that are our own.

I have completely lost faith in doctors. How on earth do they get "qualified". I'm not a doctor, I've never had scabies, yet I know what it looks like. Maybe he needs glasses!

Hi everyone!

Just thought of posting a little warning about anti-caking agent E551 which can be found in some spice mixes.

I checked the unsafe foods page and didn't find E551 on it so I went ahead and made a salad dressing with an Italian spice mix containing E551. Just a few hours after my rash fired up, and I had not so cooperative bowel movements for days after although I took fiber the moment I saw the DH on my hand :-/

So I googled santa-maria and found that some kind soul posted a letter from them stating that anyone with celiac should NOT be consuming any santa-maria spices containing E551. Wonderful.. why wasn't that stated on the label X( I really wish that "trace amounts of gluten" would be taken more seriously.

Anyway, just thought I'd warn others about it. I think it should also be added to the unsafe foods page. Anyone know how to suggest it?

Thanks all of you, this was incredibly helpful :-)

I've been reading a lot that the distribution of dh is typically symmetrical. What does that mean?

Like if it shows on the right index finger, it has to show up on the left index finger too?

My rash shows up only on one finger, but if it gets really bad then I get another patch on the back of my other hand (this happened only once), not the finger. The blisters are really tiny and it used to itch like crazy, but recently it has been burning more than itching.

Oops, sorry, you stated no carbs. Sorry about my not so good advice. One thing that helps me mentally when I'm challenged with my diet is to take a deep breath and think about how much better I'm doing now then how I was doing then. We didn't sign up for the club, and learning the ropes isn't easy, especially since they're different for everyone. Wishing you the best, Gail.

Hahaha I was actually desperate enough that my mind started to think that sweet potatoes are "ok" carbs just like brown rice.. I was actually considering adding them :-)

Learning the ropes is a kick in the butt I have to say hehe

I actually saw my husband eating clementines yesterday, and I could smell their amazing scent .. I couldn't resist and had to eat one lol

Sorry to hear that Dani. Maybe those wheaty pellets really gave you major dose? I've read a few more posts recently where people say it takes a few months for their periods to come back properly. Maybe you just need a bit more time. I hope you feel better soon.

Thanks Gail, I'm starting to feel a little better and somewhat more alert. It's just hard to stay positive when a person eats the same things every day and still feels worse than everyone else haha :-) But I'm glad I have this place to turn to for good and bad things.

I actually got my period today, so that's a lesson about being patient for me. I really feel like a drama queen and I'm a little embarrassed :-)

Thanks for all the advice. I appreciate all your help guys. I put off adding anything, but I'm feeling pretty devastated and hopeless at the moment.. I didn't get my period. I got my first period last month on the 23rd, but nothing this month :-( Maybe this is all in my head and I just truly have a hormone imbalance.

Feels like there's no light at the end of my tunnel

It is best if you can to wait until the glutening symptoms resolve before you add a new food. If you think you had problems with the peppers then drop them for now and wait till you are feeling better before you add them back in. I think a doctor can tell you if you have a candida issue. Some of us get rashes and itchy from gluten so it may be that causing the itch.

Sounds like good advice, thanks :-)

Luckily the clinic called yesterday and told me my appointment details are finally in the mail! I hope the appointment won't be too far from now!

Hi again everyone. It's been two weeks since I started the elimination diet!

I'm sadly still recovering from the rabbit pellet glutination so I'm not free of symptoms.

I think that I also had candida, since adding fruit to the diet caused an itch. I had to remove fruits again and the itch is subsiding. I have no idea how long it takes to get rid of the candida.

Anyway, it's time to add a new food, and after two weeks of fantasizing I have no idea what to add, specifically because of the candida (which means no sugar, carbs or dairy). I read somewhere that wholegrain rice should be ok for candida so I added that.

Here is what I've been eating for the past two weeks (except for the rice):

Red and white meat

Brown Rice (added one week ago)

Green-leaf vegetables

cucumber

sweet pepper (maybe not ok)

Onion

tomato

aubergine

zucchini

garlic

Avocado

Unfiltered apple cider vinegar

olive oil

herbs and spices

Foods I know I react to

eggs

dairy

fruit

nuts and beans

carrots

Experienced Celiacs, what food should be next?? I'm thinking maybe coconut? Is that safe for candida problems?

I missed this reply you made and wanted to clarify the problem with Lindt chocolates. The gluten in Lindt is from barley and in the States, barley is not one of the 8 major allergens that require label warnings...that's where the ingredients listings come into play. This is the learning curve we are talking about and it can seem confusing and daunting at first. Barley is used commonly as a sweetener in candies so you do have to be careful of that.

I had to give up Lindt chocolates and now eat Ghirardelli.

I have heard that Sweden is excellent at labeling but it looks like maybe the barley may not be required along the same lines as here in the States?

It cannot be marked gluten-free if it contains barley but if you are looking at something which is not officially labeled as gluten-free, then you have to scrutinize the label or call the company. I know...it's a real pain at times, especially when I see those barley pops I used to love as a kid. I miss barley but don't miss the wheat!

Sadly the hard way is the only way to learn in these situations :-(

It's not a very excellent system here. I got a reply from the responsible department about this issue and traces of gluten are sadly considered gluten free as long as it doesn't go over 20ppm.. so for a food that is guaranteed to contain as much as or less than 20ppm, the company is not obliged to label the product as gluten-free. I don't like that but the advice I got from everyone on these forums was invaluable and that I like :-) It has helped me immensely! I owe all of you :-)

I think this is true for me too. Airborne fumes normally inflame my sinuses very quickly, followed by migraine, joint and muscle pain. A mild stomach ache will follow if I haven't gotten away from the contamination quickly enough. I only seem to get a big GI problems if I have managed to ingest a bigger dose, which might be difficult via airborne contamination. I spent yesterday evening at the mall with my kids, and we had supper at a popular restaurant, which is supposedly ok for gluten free food. I just had some spicy fried rice, which seemed the safest thing to eat, but my children were eating large portions of smelly garlic bread (they don't get to eat hot gluteny foods at home any more). This morning I woke up a tell-tale headache, and am achy all over, but my stomach is fine. So I suspect the fumes from the kids garlic bread, and maybe other minor environmental CC, rather than any contamination of my rice. I can't keep anything in my stomach for a day or so if I get a dose of contaminated food. I do wonder if the airborne reaction is just a lesser reaction due to a smaller dose, or whether it is an allergic reaction rather than a celiac one. Mood swings can be a problem for me too, but it has't happened today.

GAIL! I went to the pet shop today to see if they'd start distributing the zupreem pellets, and they had a different product which they just started with. They seem to not contain gluten but I emailed them to make sure. They also have chinchilla pellets Open Original Shared Link

It seems to be a European brand so perhaps getting it would be easier.

In January I began the elimination diet by doing the "detox" period eating only safe foods, then trying one food at a time. Now that I've gone through most of the foods I am going through some one more time to be sure. Wheat is for sure though not clear on whether or not that means "gluten". Dairy is for sure. Mushrooms and eggs are also for sure allergic reactions.

What I don't like about oats is that they seem to really mess with my blood sugars and, since beginning all of this testing, I have learned that blood sugars above a certain number come from foods I cannot tolerate. But I hate to just dump them for that reason since I don't seem to be having asthma or itching or the other more serious results. Still, I am learning SO MUCH about my body that I hate to just ignore this sign.

Thanks for always replying

What do you usually eat them with? Oats are mainly fiber.. I don't think they're that high on energy, but then again I'm no expert.. and they are still considered carbs :-/ I hope you figure it out and they work for you. Sorry you're having such a tough time.

Try going to your profile. Click on "Find my Content." You will see a list of all topics in which you have participated. They in order by most recent post, not the order that you took part.

Oh now I see them! Thanks :-)

I'm trying to find the very first topics I posted. I tried searching for them through the search functions, as well as looking for them through my profile but couldn't find them.

Hi Dani thanks for pointing this out. These pellets look great for all small animals. It seems that importing this into Europe is a bit of a pain though. The UK importer quoted me a lead time of 3-6 months to delivery because it is manufactured to order and they need to gather sufficient customer orders before they can approach the manufacturer. Given this I think I'll approach our local pet food shop (who are quite helpful), our exotic vet, and maybe also our chinchilla's breeder to see if I can garner any support/combined orders to hurry things along a bit. Have you looked into ordering yet? I see they don't list an importer for Sweden.

Ah - see I picked up the wrong post from you - oops! I meant to thank you for the link to Zupreen pet foods. Thanks to the OP about this too.

Best wishes

Gail

Save some of your chinchilla's current pellets when it's time to switch with new ones in case she doesn't warm up to them quickly.. You can then give her mixed feeds until she eats them! (you probably already know that!)

I was planning on doing the same thing through pet stores.. no other way. If all fails, Soot (my bun) will be loving his new fresh veggie diet anyway, just that it will have to come slowly :-)

I thought about giving him to another family but I couldn't part with him! He's my little black fur-ball!

I have been reading this thread with interest because I just cc'd myself last weekend while cleaning out the bin that my sheeps' alfalfa pellets were in. I developed muscle and joint pain and stiffnes and am still having some wild mood swings - usual symptoms for me when I get contaminated - but all the GI symptoms are missing...so I am getting different reaction to breathing in the offending gluten as opposed to eating it. Maybe that is the case with you too.

I checked out the alfalfa pellets last fall - they are made with pure alfalfa, no wheat starch filler, so I have not been as careful as I should be when working with them. But I never considered til now that the alfalfa itself is more than likely contaminated with wheat. And it would be if it was grown in rotation with grain crops. Ugh, live and learn.

The food industry needs to consider so many changes, but they sadly don't care as much about people's health as much as increasing production ;-(

YOU SAID "Decided to cut oats for a month (based on recommendation)"

Would you mind sharing why? I keep trying oats and getting iffy results but I know they are gluten-free.

To test if I react to them, and that's the only way to be able to tell. I don't know if you're reacting or not but the only way for you to know is to do an elimination diet like me. I ate nothing but meat and green vegetables for a week. When I started feeling that I detoxed, I added a food back to my diet and tried it for three days, then added a new one if all went well. Oats have to be cut off for a month to know if it's the culprit for sure.