dani nero

Well, I wouldn't say I'm having iodine w/o problems per se. I'm having iodine but not lots of seafood. I have 2, only 2 shrimp, medium sized once a week, having milk & cheese but they are from a local dairy & have less iodine than anything in the grocery store. I had my first WHOLE egg in forever it seems, this week (soft egg on flax toast) & ohhhhhh it was GOOD! I'm eating some yogurt. And there is iodine in almost everything we eat. I'm taking it a bit easy until I find my limit or breaking point. But I feel I'm getting the proper amount of iodine now for health --- just not going nuts on it.

Earlier you asked what I am eating & I realize now that you may have been asking for more detailed. Here goes: Fresh low sal vegetables but I am having some carrots which are in the mid range but I am limiting the amount. Chicken, beef & pork, golden delicious apples, pears, pecans, cashews, sunflower seeds, walnuts, brown rice cakes, cashew butter, sunflower seed butter, rice, potatoes - still eating them w/o skins, leeks, quinoa, Glutino's flax bread, pumpkin seeds, a small amount of sweet potato (med. sals so I limit my intake), milk, cheese. I adore salads & am using the interior leaves to try & limit the sals; I should be eating iceburg lettuce but I simply can't hack the stuff -- it sucks -- so I'm keeping the salads to 2 small ones per week & I put cheese & garbanzo beans (chick peas) in them. Black beans, white acre peas, green peas, green beans. And I had cut out ham b/c of the iodine but am now having ham once a week. Onions, sugar snap peas, celery.

Who says celiacs don't get enough fiber? LOL! I sure am getting it!

Yes that was what I meant :-)

Your diet is really high on the yummy factor.. I drooled just by reading it!

I'm thinking about starting with nuts once I'm sure I'm symptom-free.

I'm also eating carrots and sweet potatoes in limited quantities. I was never able to find safflower oil though.

I am so happy for you Squirming! I hope you'll always be well from now on :-)

Pear thanks for making both of us feel better! I don't know what was going on the past month but I am feeling much better energy-wise and mentally now.

Thanks guys. I was really hoping you would say not to worry about the bloat since the pears were the only sweets i could have haha :-) It seems anything sugary will still be off the menu for a while!

I so hear you!

Good for all of us :-)

I'm gonna give the previous posts some serious reinforcements. I've never gotten any information off this forum that was harmful. Without the experience of the people here I would have still been lost and itching my skin into oblivion.

Guuuuys what should I do about the pears? ;-) Does bloat indicate a problem?

I've been doing low sals & getting more iodine. I have documented a true & real correlation to stress & yesterday an event happened that sent my stress levels off the charts. Places that had not completely healed but had not itched for days suddenly became raised, red & itching. Today has been pretty calm & I've had far less itching.

I sure do hope your itchy scalp & arms is all in your head! LOL! I wouldn't wish the scalp lesions on my worst enemy! They are GROSS!!!!!!

You're having iodine without problems? :-O That is great! Can't wait until I can have seafood again!

And you Dani, how are you doing?

And me, well, I'm better but sort of in a holding pattern right now. Got to a certain point & then just kind of holding. A few heal & I get a few. At least it's at the point where I can deal with it.

I've noticed that with celiac it's quite often that healing doesn't happen without comebacks. It's usually better -> stops or comes back but milder -> better, and so on. It resists completely going away until it can no longer be there. Hang in there squirming :-)

I've been ok thanks :-) The DH on my finger healed but the skin has been refusing to become normal.. it's still very dry and it doesn't matter if I put cream on it, but no more blisters.

I got glutened a few days ago but thankfully no blisters.. My finger is just slightly irritated. My scalp and arms are a little itchy but I'm hoping it's just my head being a little paranoid :-)

What have you been eating by the way?

Hi Dani,

It is a good idea to consider all the ingredients in the chocolate as possible problems. If it has soy, which most chocolate does, that could be a problem. If it has milk(dairy) that could be a problem too. Of course it could be the chocolate itself causing a reaction. In that case you could try carob as a substitute.

If you can get 100% chocolate you can make some candy yourself and test the chocolate reaction. Or you could get some soy and test that. Or some milk to try, and then try hard cheese. Not all the same day of course. Spread it out over a few weeks. And trial them for 3 days running. The problem with that approach, is if you are already reacting to some other food in your diet, it can be harder to define the reaction. But the idea is to try foods in their whole state, not mixed in with other ingredients that you haven't already eliminated as problems. If you were going to mix them with other foods, you need to be sure those other foods are not a problem first.

Makes sense :-) Yeah I think I was having reactions to other foods and thought I was still being glutened.

I'm getting better everyday since I went low sal soooooooo

I'm very happy to hear that :-)

I agree with and echo all the previous posts. If you really like him give him another chance, but it seems to me that he's not really absorbing all that there is to know about you.

Maybe reading really isn't his strong-point.. Perhaps try by telling him a story of how celiac disease was discovered.. that might be a little more interesting... but I can't think of any other way of making a person want to learn about your condition without being genuinely interested.

Edit: I forgot to mention that I added pealed pears to my diet three days before the glutening. They cause a major bloat. Does that mean I should take them off my diet?

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Original post:

Hi guys. I've been away for a week visiting family. I really had fun with them, and they tried to be as supportive as their interest in understanding the whole situation allowed, so as much as I did enjoy their company, I didn't really enjoy washing my hands every few minutes as well as washing everything I was about to use or put in my mouth with dish-soap and my fingers (instead of a sponge). To be fair, they still did put a lot of effort in making food that was suitable for me, and I even got my own personal towel for drying my hands.

Although I was very careful, I still managed to get glutened near the end of my visit. My sister in law offered some spiced chicken and I put one in my mouth before actually checking if the spices she used were gluten-free (I was seriously hungry), and they weren't. My only symptoms so far are anxiety and poor sleep.. Not sure if swelling up, DH and C will come later.

Now I'm not sure if I should add a new food to my elimination diet or wait until the current symptoms go away. My food journal sadly isn't "complete" enough to show how long gluten symptoms last for me.

I think I've been missing a lot of posts the past few days, so I'm going to browse through these boards now! :-)

Sorry about the way you've been treated. There sadly is nothing we can do about people's lack of understanding.

My whole family is telling me to "drop the whole idea of being gluten intolerant the moment my doctor finds nothing wrong".

People think they know it all and that they have it all figured out. They think they live normal healthy lives because they have the will-power and popper lifestyles, and that we are having problems because we lack that will.

At least we understand sympathize with you. I really wish this wasn't an online place and that I was talking to everyone here face to face.

Hi Dani,

That's good that the sweet potatoes work for you. I would not add oats back so soon though. They cause some f us to react just like wheat, rye, and barley. So you don't need to be in any hurry to find out they are a problem. If you do react to them it could set you back several weeks.

I am heating up some sweet potato beef soup right now. I cook beef in a pressure cooker with the sweet potatoes and then mash them up together. You can add any spices like garlic, salt, pepper etc or lentils etc. Onions too. Makes a nice soup.

I'd think about something different too ad besides oats though. How about avocados? Do they work?

I'm afraid I can't add avocados (as squirming stated). I had them in my diet earlier but had to remove them because they're very high on sals. I need to limit the sweet potato intake as well since they are high as well (yet not as high as avocados).

I'm thinking about adding pears maybe. They are very low on sals.. While I do like them, they're still not one my favorites.

I was very excited about the oats I was counting the days for a long time. Someone told me earlier (don't recall who) that a month would be enough but I guess that's not gonna happen ;-( Too bad for me.

I'm gonna have to go through the low sals list of foods until I find something that works

If you love chocolate you're in luck. Just be sure to read the labels. My favorite is Snickers bars.

Snickers are not gluten free in Sweden.. Are they gluten free in the US? :-O

I probably should have double checked before, but I just realized that sweet potatoes are high on salicylates.. not very high but still high. This means I would have to eat them in a very limited amount. Go figure!

Thank you everyone :-)

Yes I loved them! They're like a yummier version of chestnuts! So good and easy too cook!

They first time it was cooked perfectly, but I sadly overcooked it the second time and didn't like it too mushy :-)

By the way it's been a month since I started the elimination diet. If all goes well this will be the second ok food I've added. In four days I'm trying oats!! :-O

For those of you who found that oats don't work, what type of symptoms did you experience?

How do you guys stay gluten free and resist the temptation to eat normal food? I'm in high school so it's really hard to not eat normal food especially when i'm with my friends.I had very minor symptoms. My only problem was that I was too short when I was little so I was gluten free for about a year but then i stopped because gluten free food is GROSS! I hated all the disgusting breads and snacks my parents made me eat. The bread was all frozen and sour and disgusting. I actually lost weight when I was supposed to gain it because I didn't eat much. I never went to parties or anything because I knew I would give in and eat good food while I was there. And it doesn't help that while I'm eating rice and vegetables everyday, my family gets to eat out and order delicious treats like pizza, pasta, and burgers. I don't really see the point in being gluten free either because I feel no different than when I wasn't gluten free. I was never sick or tired or anything like that. I was just short. But I'm actually taller than three of my aunts and my two of my grandparents because I come from a family of tiny people on my mother's side.

Wow.. Ok, where to start.

Gluten-free food doesn't have to be disgusting. In order to get to eat treats like everyone else I had to develop my cooking skills. My gluten-free cooking isn't identical to wheat foods but it can be equally delicious.

Your friends and family should be able to understand that you can't eat the same things they do, so while they can't really change what they eat, perhaps they can help you out a bit by going to places that offer foods for everyone, including yourself.

Everyone goes through this in the beginning: feeling bitter about not eating wheat products anymore, but the thing that makes most of us stick to it is that we really, really feel crappy if we eat gluten, so no tasty bread in the world is worth the suffering it would cause. While Your symptoms might be unnoticeable now, they still can develop and get nasty later in life, and maybe even as serious as giving you cancer, kidney or liver failure.

I'm not telling you to put up with bad tasting foods, but you need to come up with new solutions. Find food alternatives you really like which can make the change in your life more bearable. It's not easy but you will get more creative the more you do it. Talk to people on the board whenever you feel upset or need to vent and they'll probably inspire you and make you feel better.

Sorry I'm really tired and my typing and grammar are probably off, but I had to reply anyway.

Hang in there and keep in mind that a few moments of munching are not worth years of suffering.

Guys, I added my first food today since I didn't itch last night and I woke up with milder cold symptoms this morning.

And of course I bought myself a small cute sweet potato.. I want to let you know I'M LOVING IT :-D

Thank you so much everyone who's been helping me. I owe you so much and you will forever be my friends! I don't know you I know, but you're the first people who actually listened to me and took me seriously.

I hope my post and happiness aren't premature haha :-) But whatever happens I'll be taking it one step at a time.

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.

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?

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

Open Original Shared Link

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.

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!) --- 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.

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! 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!

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.

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.

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.

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.

Dani, the one thing to remember is they guides are just that - guides. Some of them say different things, and everyone is sensitive at different levels and to different things. The tricky thing about sals is they are cumulative so you may not see an immediate effect - a high sal food may hit you 2 days later when you hit your body's threshold.

Personally, I'm still suspicious of that mouthwash and gel you were using. They are, I suspect, high sals. You may be ok with most foods but not something strong like that. I sincerely hope so.

I agree about the mouth wash and gel. I sadly had another reaction last night though, so I'm thinking the wash was not the only culprit. Probably the same problem as squirmingitch with Sals. If this is really DH.. My nose was so itchy I was about to scratch it off, and my finger was burning with lots of new tiny blisters. The strange thing is that my finger used to itch, but now it only burns, swells and get lots of small dry lines all over it. The only things itching are my scalp, nose, feet and legs. And then this morning the blisters are almost gone, just small bumps remain where they were and agitated skin.

Sorry for redirecting the attention from squirmingitch X(