dani nero

The learning curve is very tough the first few months...grocery store missions took so much time reading every flipping label...but you do learn what is safe and what is not...go easy on yourself during these first days...you will make mistakes...we were extremely careful, but it took quite awhile to completely rid our kitchen and my shopping missions of gluten. When in doubt google the item with the words gluten free...it will usually bring you back to several threads right here on celiac.com of people's experiences. Emailing the food manufacturer has worked well for me...I kept a list at the store if I had a question of an item I'd send an email and nearly always had an answer before my return to the store. Some folks like to call the manufacturer, I just prefer email so I have a record of whom I contacted...makes it easier to share the info with others

Hang in there...you will have other days of frustration...but eventually you will become an expert and feel safer and confident in what you are eating.

Thanks Lisa. You make things sound not as hard as I think them to be :-) I should start keeping records and making a list as well.. there definitely is no downside to that!

It was very difficult for about two years, because, as the thyroid slowly died, my medication had to be adjusted up and down. Sometimes I would become hyperthyroid and then bounce back to being hypothyroid. Now that I know the symptoms of both, I can usually detect when I need to adjust my meds. Even after five years, it sometimes still becomes an issue. Otherwise, it just comes down to taking meds forever.

Hang in there. You sound like you have more better days than bad though :-)

Xoxo

I'm sorry to hear that it takes so long to see a doctor. When you attempt to get an appointment, please stress that you're experiencing muscle weakness upon exertion that worsens the more you exercise. Hopefully, they'll wake up and schedule an appointment soon.

Good luck! And please let us know what happens, okay?

Thanks for the support, and will let you know :-) Xoxoxoxo

Sorry to hear that :-( What is it like to live with hoshimoto's?

Geez....you're experiencing a lot of symptoms. All I can say is that Hashimoto's Thyroiditis (which affects quite a few people with celiac, including me) can present with a sore throat, fatigue, joint pain, foggy thinking, and dry eyes. Also, it can cause constipation. It can come on suddenly because the thyroid will produce enough hormone, and then, all of a sudden, it stops producing enough...and then the cycle can begin again until the thyroid finally stops completely. I believe you mentioned elsewhere that you were tested for thyroid problems a few months ago. I had also just been tested when I suddenly began experiencing thyroid problems--I was tested again, and my thyroid was in big trouble. However, for a while, I thought I had the flu because the sore throat wouldn't go away and I felt so terribly fatigued, and the doctors kept giving telling me it was just the flu. Even with thyroid medication, it took about eight months for the sore throat to go away (it's because the thyroid was inflamed).

I'm going to keep positive thoughts for you with regard to getting a doctor's appointment soon. And perhaps you DO just have a virus--let's hope!

Gosh sorry you've had thyroid problems :-(

This is really worrying. I really hope it isn't the case though. I thought all the problems would go away once I started a proper gluten free diet, but it's a real bumpy ride.

When we went gluten free, everyone said, "Oh, you'll lose a lot of weight then." Great!

I did go down a size, but that was just from not being inflamed on a daily basis anymore. I can even wear pants with a zipper and belt without pain now!

But, I have not lost a single pound. This is really disappointing!

I have been training for a 5K but is that not enough? Do I need to consider giving up another food group, such as dairy?

Any ideas would be appreciated.

From what I gathered by other posters, weight does not have to be linked to gluten intolerance. It more depends on the individual and how they react to gluten. I also don't lose weight :-)

Hello again,

Sorry for posting a lot recently. This is all new to me.

I'm only on the second day of elimination diet, and aside from the leftover symptoms, I've been noticing that my throat gets sore a lot, specifically after eating. My eyes are also extremely dry and head feels as if I'm going to get a cold.

It's all so confusing because I have no idea whether I'm getting a reaction or if I'm actually sick X(

I will see a doctor. It can take a while as the health-care here is as fast as a turtle unless someone is dying.

Nope, I don't take any drugs. The only thing I used to take was birth-control for the amenorrhea which I stopped two months ago.

It's quite possible that you're unable to absorb supplements right now, so you may find that the supplement the pharmacist gave you won't help at all. For some of us, we need to get our iron intravenously and either B-12 injections or sublingual tablets. The sublingual tablets are really inexpensive, so you might just try picking some up. If it's a B-12 problem, you'll see almost immediate improvement.

Thanks for your advice Rosetapper xoxo :-)

Yes, I started the diet yesterday, and I've been keeping a journal for three weeks now. I just needed to vent yesterday because everything was piling up and I felt useless. In case anyone might be wondering I managed to keep with my deadline today :-)

I'm on meat and veggies now, and I'm using olive oil and unfiltered apple cider vinegar. Nothing else. I'm not sure if it's necessary to exclude fruits though.

Thanks both of you for the input. I haven't been checked yet, still waiting for appointment, but I did have thyroid checked two years ago I think, and it was fine. I would say it might be b12 / iron since I'm getting these sores at the corners of mouth.

I got myself some all-round supplements a few days ago. It was all the pharmacist could provide until I see the doc.

You may not like my reply. I am about 2 yrs post dx. I found I don't deal well with any flours or cereals.

My favourite snacks are a dried fruit and nut mix, date and coconut rolls (a new find at my supermarket - they are 100% date and coconut!) and I do love yogurt even tho I was told I was lactose intolerant. I gave up cow dairy for a while but didn't notice any improvement.

To begin with I desperately tried cooking my favs with gluten-free flour. Most work well. But I didn't get better and I got fatter.

I sometimes bake a gluten-free treat and have a small amount. My hubby eats the rest. To tell the truth I am much happier and healthier now I am not eating gluten-free cereals and cookies but it has been a long road. And now I am at that stage where I don't crave carbohydrate. Thank goodness.

I actually do like your reply. At the point I'm at right now, I'd give up anything to get rid of the fog and anxiety. I'm behind with my schoolwork every single course, and I don't like getting irritated at the poor hubs.

It sounds like a good plan of action to have some of the bad stuff every once in a while just to avoid deprivation-cravings which can get you in trouble. Thanks!

Sorry, BRM is short for Bob's Red Mill. They make a lot of gluten-free products.

Your symptoms could be an actual intolerance, or the back and forth of healing. There don't have to be specific symptoms for an intolerance. People can have a lot of varying symptoms. That's what makes it kind of tricky. You need to eliminate the possible food item and keep track of all your symptoms, not just digestion. For example, I had joint pain from eating soy and nightshades in the past. Now I can eat some potato without problems. But I don't ever plan to eat soy again.

We all have our own bodies, so my joint pain from nightshades could be a rash or migraines in another person. The symptoms of food intolerances can vary widely.

Do you take pro-biotics? They may help the bloating some.

I'll make sure to keep track of every last symptom. Thanks.

What are pro-biotics? Like actevia yogurt?

But the path to wellness is worth never putting another croissant into my mouth!

I can't help you with when to eliminate more items, since I did the opposite way. But I can send hugs and empathy for your frustration and physical symptoms!

Good luck!

Thanks for the comforting. I woke up feeling just a little foggy, but then the anxiety decided to kick in and I felt devastated. I'm starting from 0 and eliminated everything today. Hubs will have to eat up everything!

Hi there, I noticed you mentioned anxiety - which for me was a major sympton. I went to see a Naturopath this past summer and she put me on a Calcium Magnesium Citrate (powder)supplement. She told me that undiangosed Celiac can lead to Magnesium deficiencies (among other things)if you are deficient in Magnesium you can experience anxiety. When I get get glutened my axiety becomes worse so I increase my Cal Mag supplement. If you are not already on a Cal Mag supplement you may want to consider it.

Thanks for the tip Molly. I'm in the middle of changing clinics so I'm on my own for a while. I'm taking supplements which include everything at the moment. Don't know how effective that is.

Could I still be detoxing from soy and lactose?? When should I decide if more foods are to be eliminated

I don't know what to do. I have a deadline tomorrow and I can't think. My house is so bloody messy and gets dusty faster than I can think. Everything is disgusting

My new years motto was stop whining since I finally found out why I was feeling poorly, but I can't help feeling so yucky with anxiety, headaches, gasses, and busted sinuses every day. When on earth am I going to get well :-( I'm tired of feeling anxious, and oh my god I'm so over the mind-fog. I just want to focus, put my mind into something productive and just get on with my life. On top of all the foods I've eliminated, seems that even more are going out the window until there is nothing but meat and veggies left. It sucks to have to cook yummy sauces, pasta, and potatoes for my husband while I eat a bloody salad :-( I miss cheese, and I miss eggs and creamy lasagnas. BLah

Would you like for me to share a recipe I just got from a friend (sort of an oat flatbread) once I get it to work for me? I'll ask her if it is ok but I am pretty sure she'd like to share.

The bonus is that it requires no yeast or machine--just oats, water, onions, sesame seeds, and salt!

YES I can do sesame and I love flatbread! :-D If it's ok with your friend of course!

Sorry you're not that pleased yet. This is such a different life, isn't it? I feel like I spend half the time cleaning, chopping, and cooking, and the other half eating because I am famished 1 hour after I eat!

Hahahaha :-D

Yes it is difficult! I've been gluten-free for a while, but we didn't realize I was that sensitive until a short while ago, which is why the strict changes need some adapting to. The cooking I've gotten used to, but the good news for you is that the chopping and cooking (maybe not the cleaning haha) will become enjoyable and a means to relieve stress through if you get into it.. and then you'll even start getting creative by coming up with your new personal flavors and recipes that you'll really enjoy and be proud of. Cooking has to become part of our lives, so might as well enjoy it.

I have a chance to get over to Whole Foods tomorrow--so I am looking for olive oil, more gluten-free oats, some milk substitute, and

#1 what kind of yeast?

#2 do I HAVE to have a bread machine for this to work or can I do it normally for awhile until I can save for a machine?

#3 which machine are you using?

THANKS again!

If you're using a bread maker then you usually use instant yeast powder (which of course has to be gluten-free as well), but of course you don't need a machine to make bread.. it just makes things easier and less fussy in the kitchen. I'm honestly not very happy with mine because it doesn't mix the dough very well, so I wouldn't recommend it. I think your best bet is to go to the store and ask for advice, or maybe someone else on this forum who's happy with theirs can suggest one.

The type of yeast varies depending on the recipe you're using. I haven't baked much so I'm afraid I don't have much experience with good recipes. I'm sure there are good recipes on this website somewhere.

The oat bread mix that I liked most was Open Original Shared Link

The page includes recipes that are suitable for the flour.

I noticed that it contains more ingredients than what I originally specified (potato and sunflower seeds) but the same brand has pure oat flour as well.. The pure oat flour won't raise as well as the oat bread mix but it will still taste good.

You do not have to move to Canada to eat safely or be able to read labels. There is a big learning curve with this diet but, in time, you will figure out what you can safely consume. The vast majority of Celiacs can eat safely from companies with dedicated facilities without fear of cc or ingesting gluten at unsafe levels...or any gluten at all, as Peter stated. Both Canada and the US do a great job with this. I do not rely on government to decide what is safe for me to eat. I eat products from both Canada and the US without issue and I am extremely sensitive to trace amounts.

As for Rodney Ford, I take whatever he spews out with a huge grain of salt. Banning gluten worldwide? Ridiculous. Not everyone has a problem with gluten and I am not a control freak who wishes to deprive others of what I cannot eat myself. He's an alarmist. He also thinks everything is contaminated with gluten and if that were true, no one would heal. It's nonsense.

If you feel a product is safe, the give it a try. If you react, it doesn't always mean it was from gluten. Celiacs have sensitive guts and other food that does not contain any gluten may bother you for awhile. Do not despair and be patient...you will learn like everyone else.

Thanks Gemini. I really hope I will get the hang of it quickly.

What brought this "despair" was a serious labeling issue I found at supermarkets here. All manufacturers are required by law to inform whether their food contains trace amounts of gluten or not. I was eating Lindt dark chocolate for some time, but since I wasn't feeling well I went and googled their website. Turns out ALL Lindt's products may contain trace amounts of gluten. ALL OF THEM!

I checked at the store and none of their products stated that in the labeling. I live in Sweden by the way, and they take celiac and labeling very seriously here, but this makes me wonder what other products could contain trace amounts of gluten without stating it. It made me wonder just what "trace amounts of gluten" is classified as.. it doesn't mean gluten-free.. it shouldn't.

Yesterday was the first day of 2012 which I cycled as the snow has melted away :-) It went great, the whether was nice and I really enjoyed it because paddling was not a challenge. I know however that if I keep on cycling.. let's say one-hour rides once every two days, I will be getting weaker and weaker until I'm not able to push on the paddles anymore (by the middle of week 2), and cycling even on straight roads will become a struggle, as if the bicycle is refusing to move forward. I would then stop cycling all together for more than a week or two. After that I notice that my bicycle can be pushed forward with ease again.

From what I know, the more one exercises the stronger they get. So obviously I'm either lacking supplements or not stretching enough. Anyone else have this problem, and how did you solve it?

might i say the person who leads this has healthproblems of her own but i have never made fun of her for how she looks because of it)

She wouldn't be bullying you if she didn't have problems of her own that made her feel bad about herself. She wants to mask her problems, and being hard on others is how she copes. I'm not defending her but explaining what pushes her to be a bully.

Seal your food like the others suggested, and don't let the bully's problem become yours. You know when a fly flies by we just wave at it so it would stop bothering us, but then completely forget that the fly ever existed, because who would spend time thinking about why the fly is buzzing around? These so called friends are just flies haha :-) You don't need to spend hours of your life thinking about them because then you'd be missing out on what you should really be doing, which is having a good time.

Seems to me your friend was trying to explain or discuss why "you" are feeling poorly and what is making "you" feel that way because he cares.

We always interpret people's intentions based on the way we are feeling. It's normal to feel that way and have these misinterpretations.. and it's a good thing that you are reminding yourself that your illness is responsible for these feelings and that they are not caused by reality :-)

When I'm feeling down because I got glutened I usually always have negative and dark feelings like no one is on my side and no one understands me when in fact it is the opposite. If I'm having a really bad reaction to gluten, I can isolate myself and stop contacting friends because I see myself as an ugly loser who has no place in this life.

Life would be brighter and easier to enjoy if you keep reminding yourself that your psychology is not so stable when you're off the gluten-free wagon lol :-)

I used to get sick only once every two years or so when I a teenager. Now I can't seem to stop getting cold symptoms, sore throats and my sinuses are always buggy in the mornings. I haven't been on the diet for long though and I'm also still in the elimination process to see if other foods are bothering me.

Do not assume that products labeled "gluten-free" do in fact contain gluten. Depending on where you are, some content may be present.

In Canada, a product can not be labeled "gluten-free" if it contains ANY ingredient derived from wheat, barley, rye or oats. That usually means no gluten at all. Any gluten that is present is from accidental contamination.

A limit of 20 ppm does not mean that the products, in fact, contain 20 ppm. Because of variances and accuracy of the testing, to consistently test below 20 the manufacturer must aim far lower. Remember, zero is less than 20.

I should move to canada

I'm not sure what you're asking. Are you asking about the gluten-free designation of 20ppm, or the very low gluten? (or both?). I know there are proposed regulations in the US for <20ppm for a gluten-free label, and some places that test to that level are still bothersome to some of us (i.e. Quaker Oats rice cakes). Personally, given the above information, I would avoid anything labeled 'very low gluten' since that's still more than should be consumed by one with celiac disease, I'm pretty sure. If I'm wrong someone please feel free to correct me.

I was worried about the safety limit for most celiaks. I've been eating products labeled "gluten free" thinking they contained 0 gluten, but turns out only "naturally" gluten free products are 0.

My symptoms are extremely sneaky and I would hate to think I was being glutened then blamed it on something else.

and do all of these classifications contain less gluten than products labeled "may contain traces of gluten"?

This is how foods are labeled gluten free here.. I'm not sure if it's right or wrong. I really need your insights on this. The text might sound funny because I translated it through Google translate:

Most people who have celiac disease can not tolerate more than 50 mg gluten per day. There have been clinical research has emerged is the general limit in celiac disease. Based on a recommendation to that effect from the Codex (a global regulatory framework for food under the UN) has, since the EU Commission decided:

products that do not have more than 20 ppm (parts per million = 1 mg gluten per kg = 0.0001%) may be marked with gluten-free

and those with 21-100 ppm may be marked with very low gluten.

Some need naturally gluten-free

A smaller number who have celiac disease can tolerate less than 20 ppm gluten or no gluten at all. They then need to eat a diet that is naturally free of gluten, thus avoiding all that is derived from wheat, barley and rye.