dani nero

So I finally went to the doc today, and as I feared, it didn't go well. The doc won't give a diagnosis without a gluten challenge, but suggested we test for anti-bodies in hopes that there might be some left in my system (which I doubt will test positive). I asked if they would test for any deficiencies since I feel poorly, and she said it all depended on the presence of the anti-bodies. Which means I'm not getting my supplements or probiotics. I tried to explain to her that exercising makes me lose strength, but she insisted it was due to the fact that my body isn't fit. Even when I told her that the fatigue and weakness occured WHILE my muscles were in top shape. This means I'm not going back to being able to exercise as I please again because I'll be struggling to push my stupid sore muscles to work for god knows how long. And ALLLL of this means I might need to lie to my family about being diagnosed, so that they'd take me seriously.

I don't want to feel desperation though. In order to repel feeling down whenever something negative is expected to happen, I'm going to try to come up with things to think about that will allow me to stay positive.

Such as... having this place to turn to for both information and moral support.

My husband believes me and is supportive most of the time.

Being gluten free gets easier with practice.

My rabbit is so cute and funny (this might have sounded weird but he really does cheer me up).

Even if I'm not diagnosed, I was still able to dodge bullets.

The only thought I can't overcome is being deprived of exercising as much as I want to without experiencing muscle weakness.

What are your positive-vibe inducing thoughts?

Ok, so Dani Nero, this post isn't bad...well, at least for me. I am newly diagnosed and honestly had NO CLUE or even thought about the "kissing factor" with my hubby. I don't expect him to eat gluten-free and never gave that a thought after we've eaten a nice dinner and he's consumed GLUTEN!

I am totally bummed now that there is yet another thing I have to consider instead of just the proper food handling, preparation and consumption of my meals. Wow!

Sorry for being the bringer of even more bad news :-(

I really don't mind at all. Lots of wonderful recipes to try out once I add corn and potato :-)

Then there's Dead Bread Head for those who would "die without bread".

I like that one

See Dani, there are worse kinds of husbands to have than GE's!

No doubt!

I tried to figure out what GE was.. and only came up with gluten-enthusiast, gluten-elephant.. nope can't figure it out :-(

Doesn't make you a moron. I sadly don't know what it could be, but I never had problems with cashews, and now after going gluten free (since February) my body changed and so did my reactions to foods I used to eat. I can't eat cashews any more. They make me go crazy with anger and anxiety along with other symptoms that remind of me of what it feels like to be glutened. Maybe it's the same thing for you?

Could you suggest to the doc that you keep eating gluten for a few more weeks, and then redo the test? There are other ways to test for celiac too. If you have a rash (dermatitis herpetiformis) you can get it biopsied, or they could search for damage in your intestines.

Then there is the possibility you might want to keep being undiagnosed if you don't really need an official diagnosis.

There are many gluten-intolerant people with period-related problems. I'm one of them.. I didn't get them at all before I went gluten free. I know that symptoms vary dramatically from person to person. Are you experiencing any other symptoms, and have you tried going gluten-free? If you're giving it a thought I would suggest considering if you want an official diagnosis first. You should do all required testing while you're still on gluten.

That is really amazing :-) Is she also diagnosed and 100% gluten-free? Now you can share lots of treats and not feel like the only one with "special" needs in the bunch!

I would think that cookies ARE real, just an alternate recipe to ones made with wheat no? :-) I'm happy for you!

I'm sorry about this thread everyone... I posted it from my phone while we were sitting at the restaurant with our friends, because I really needed to blurp the vent out to someone who would understand how I was feeling at the time before I started crying or getting others aware of the situation. I didn't want to embarrass my hubs or myself and I knew our friends would have thought I was the type of woman who likes controlling her husband or something. He doesn't really suck, and I didn't really want to dump him.

Ranvenwoodglass, MitziG, and Bubba's Mom, your delicate way at putting it got me to re-evaluate the situation and be able to enjoy the rest of the day at the island with hubs and friends. Thanks for being frank, understanding and for the invaluable tip about the toothbrush! I probably would have spent most of the day sulking, but we ended up having a really fun day :-)

Jestgar, I read your response while we were in the car driving back home. It made me laugh out loud, so hubs asked what I was laughing about haha :-) He already knew I was upset earlier, but I explained to him about the post, and read your reply out loud, and he burst out laughing as well. Now being called stinky pizza breath will be one of our inside jokes!

GFinDC, that's ok.. Us women can be real hot-heads on the other side, but thank goodness for the men who are very understanding, regardless of how fast / slow they get used to things!! I really don't mind carrying the toothbrush for him, it'll fit in my handbag without problems :-)

bartfull, tuxedocat, and Motherbird7.. I'm not sure what to say. My hubs does get to indulge himself with gluteny things under normal circumstances, and I never read the story about a chef and his gluten free girlfriend. I set the bars as high as the expectations any woman would have when her hubs makes plans with her for a romantic day :0

My darling spouse and I were planning to go on a trip to an island with friend for a week. It so happened that we couldn't take our cars with us, so we couldn't take any of the food with us because we didn't want to carry it around. I suggested they eat at a restaurant at the island since I had an emergency food box packed in my handbag that I could take with me and eat later. Now the restaurant had lots of good food, but my darling hubs chose pizza. Pizza. .. really? He prefers a pizza over being able to kiss me all day.and what if he forgets as he usually does and kissed me without thinking. He did it on a plane once before. We planned to have a good time together and I was really excited.I would understand if he had the option to brush his teeth but we're trapped on a bloody island. I feel so. .. betrayed. I can't understand why food to him is more important than having a romantic day out with me. I just want to cry x(

He should be thanking god every day for having me in his life!

I too have fallen for the same mistake and feel your frustration :-( I hope you don't get too sick and get well soon.

But I had to take a lot of Tylenol throughout the day for 4 days. Then it caught up with me. Sals overload again. So, the sals are getting out of my system again & my rash is getting better.

Sneaky no good sals :-( I'm glad you're doing better now!

I have noticed I can't get them ON my rash - I was using almond oil/Shea butter salve on the spot on my hand and thought it was ok. Nope. I finally figured out it was making it worse, switched to Vanicream and it's finally healing. I also can't get fruit or vegetables on the rash or it triggers a new outbreak. Thus, the kitchen gloves.

Iodine was worse for me. I was much more sensitive to iodine with my DH. Still am. I can eat sushi and get a dry red spot immediately.

I did notice that when I ate seasoned chicken with my hands once.. The seasoning wasn't spicy but my rash felt burn-ie when some of it came in contact.. I guess these rashes reacts from both sides :-)

It's really amazing how fast reactions can be. I sometimes thought it's was all in my head because the moment I ate those extra portions of sweet potato or extra sips of carrot juice, my nose starts itching.. And I would think "Can't be that fast!"

Understood, and thanks for everything gals :-) This is so wonderful! I'll try not to overdo it :-D

Yay!

It's not just that, but even the sugar in these fruits have not been bothering me. I've not been getting anxious or bloated from the sugar.

I am starting to feel better after being gluten free for two weeks. Did you diagnose yourself and get better after going gluten free? Or did you see a doctor? I'm not sure what the best thing for me to do is!

I am self-diagnosed (but my doc appointment is in a few days), and while I did feel better in the beginning, I went downhill afterwards because I am lacking supplements and I started reacting to other foods. It would have been impossible for me to understand any of it if it weren't for the people on this forum, but I'm still going through difficulties because I'm in need of supplements and probiotics that pharmacies can't offer, so I need a doc's help in order to start feeling well. I also would like to be diagnosed so that my family members will stop saying that I'm making it up because no doctor told me to do what I'm doing.

You might might be able to manage your health by taking advice from the people here, because they lived through it and know more about it than anyone else, but there might also be certain situations that you will need medical help for.

Getting a diagnosis really depends on your needs. Do your family members and friends take you seriously? Will you be needing proof to show that you need to bring your own food in certain situations, and can you do all the blood-work and tests to see if you have any secondary problems without a diagnosis?

You've only been gluten-free for two weeks, which means your reaction might not hit you too hard if you go back to gluten now, but it's your decision of course.

I posted this thread here because my DH is the most prominent side effect that I get from consuming too large amounts of salicylates!

I'm experiencing some changes regarding my sals sensitivity, so I was wondering (for those who also react to sals) if they've experienced the same thing!

I've noticed that I can handle a bigger amount of foods that are high on sals, such as cherry tomatoes. I even tried to test this by eating frozen mangoes, frozen berries, and even a few fresh blue berries (which I'm immensely enjoying by the way) and I'm so far almost getting away with it!

I was feeling particularly greedy the past three days, cheating on my diet with unlimited cherry tomatoes frozen mangoes, and berries (most of them were frozen but I did also have a few fresh blue berries), and I'm not sure what's going on, but I haven't been getting any new blisters. My rash -does- get a little dry, and it burned a little two nights ago, but that was it. I tried pushing it again yesterday by spoiling myself, and I'm ok so far. I'm not getting bad DH reactions, and my throat and nose are not hurting either!

Could it be that I'm getting over the sals sensitivity? Is that possible?

Could this be due to the fact that sals sensitivity occurs when enough sals have accumulated in the body until they start causing reactions.. So going off them for a while means that the body can start handling them again, until another overdose occurs?

Or could frozen fruits contain less sals than fresh ones?

I don't know what this is.. but I'm very happy and thankful that it's happening!

Wow! I'm glad to hear you figured it out. I bet a lot of people with DH would like to hear about that in more detail. You can't be the only person with salicylate-sensitive DH. Maybe you could start a thread and tell your story in the DH section of the board.

Thanks :-) We found out about it with a lot of help from pricklypear. Eating foods that are high on sals do indeed cause DH reactions and even anxiety and bowel problems.

There are two threads discussing the problem :-) I'll post them here for reference

It's been a while since I posted this, but I was thinking back, and thought that I should give the product it's justice. I was sadly mistaken about the E551 in Santa Maria!

The brand's spices are probably gluten-free, and the cause of the reactions I was having was the high amount of Salicylates in the herbs which the spice-mix contained.

I didn't know much about Salicylates at the time and that an intolerance to them would cause Dermatitis Herpetiformis to surface if the person has it. Seeing the rash surface made me believe I was getting glutened, when in fact, it was the insane amount of sals in the herbs which the spice contained together with the olive oil and vinegar I was putting them in.

It's ok to delete this thread or correct the title again if it's necessary. I apologize for the mistake ;-(

It does take a very long time, and it usually involves fatigue, brain-fog, anxiety and dizzy spells.. for a long.. looong time, to the extent that you'll be doubting that you've gotten glutened again.

It took me months to feel better when I first went gluten-free, and it now takes three weeks if I get glutened by accident (but this highly differs from person to person).

I think though that you recover from these symptoms faster when you're taking probiotics and supplements.. I've still not been to the doc so don't take anything, which means my case is different from yours if you take supplements and probiotics.. That's also putting aside how much symptoms differ from person to person.

Don't worry, the light in the end of the tunnel will eventually show :-)

YVW Dani. And pain relievers aren't just for headaches. Who knows when one is going to twist an ankle or whatever & need the med.

I'm also going to ask for a doctor's note stating that I need to bring my own food .. I thought it would be a good idea after reading the thread about sea-world :-)

you need to think of anything else you will need a script for from the doc. Such as gluten-free & salicylate free Acetaminophen &/or Naproxen for those times when you need a pain reliever.

Critically true! I had actually forgotten about that because I haven't been getting headaches recently, so thanks :-)))

I don't have any of the cashews at home atm, so I'll check for contamination next time I'm at the market. I don't think I was getting glutened though because it goes away quickly when I stop them, and it doesn't agitate my DH.

Sadly not one member of my family is flexible to eating gluten-free.. They are even shunning the possibility. My parents are coming to visit soon and I'm still not sure how that's going to go.. If they'll choose to be a pain about it or actually give up their precious gluten at home. My husband eats gluten-free at home because I told him I would not live in the same house with him otherwise. It's my right to feel safe and comfortable in my own home after all. It would have been nicer if he had done it by choice :-P

I pieced together today that cashews were bothering me too! I realized it a week or so ago, but thought it was the brand that they were cross contaminated, so I waited a week and tried another brand and flavor (first ones were honeyroasted) it had no cross cantamination warning and no wheat ingredients ate some yesterday and today and had a reaction both days. It is the only thing I can associate with it, so no more cashews for me. What I wonder for me is it a Iodine issue?

I don't think cashews are high in iodine.. maybe the salted ones might be?

The ones I've been eating are sold raw and plain.. I either ate them the way they were or roasted them myself in sunflower oil and ate them unsalted.