AzizaRivers

When I first when gluten free after being diagnosed, I was RAVENOUS for about 2 weeks. I mean seriously hungry. Like I had to carrying around packs of gluten-free pretzels when I went to class because I couldn't make it from breakfast at 9 to lunch at 11 without becoming so hungry I would get intense hunger pains. I chalked it up to the fact that my body hadn't been absorbing nutrients for quiet awhile and now it was being given things it would handle so it was pretty excited.

I didn't want to try any tricks to curb the hunger because I had lost so much weight from being sick that I figured if my body was asking for it, that meant that it needed it. I just made sure the food I was eating was real food with real nutrients that would help me, not junk.

Your problems are pretty suggestive of celiac symptoms. So the nest step is to get tested. Keep eating gluten. Don't stop until you're finished testing because if you do, you may get a false negative. Visit your doctor, explain all your symptoms and insist on getting a full celiac panel done. If they won't, get a new doctor. Be aware than many doctors don't know as much as they should about celiac, hence the whole section of the foum dedicated to frustrations and celebrations about good and bad doctors.

I had that happen. I had been gluten free for only a month and I wasn't really feeling sick any more. I started eating gluten again and actually experienced NO symptoms and thought "Oh, maybe it's not the problem after all..." but gradually the symptoms began to return, including ones I didn't even realize had disappeared until they came back (yeast infections, anxiety, and more). Now that I've been gluten-free for much longer I'm having the severe reactions within hours to even small amounts of gluten. I know some celiacs that have lessened reactions over time, though. You're still getting the damage, just not feeling it the same way.

I live in a house of gluten-eaters. I know many think it's impossible, and it might be for some, but I do just fine.

-I'm sure you know this already since you mentioned the dishes, but don't share pots and pans, cutting boards, wooden spoons, etc. either.

-Don't be around while there's gluten baking happening, if there's going to be any. Be sure your friend is going to wipe everything everywhere down with soap and water when they are finished.

-Don't share butter, jam, peanut butter, anything that could potentially be contaminated by a gluten-covered knife. Do not trust your friend to have to remember to use a clean knife every time, mistakes will be made.

-If necessary, mark certain foods with a colored sticker or something like that to know whether they are or are not safe for you.

-Think about whether you are your friend will be preparing food together, and if so, do you trust him or her to safely make your food? Some of us here just are not able to eat anything made by other people because they can't know for sure that it's safe. I live with my boyfriend's family and I trust his mother to prepare food with/for me because she "gets it" and is probably even more careful than I am about avoiding contamination.

-Consider certain chores that may or may not be possible for you to do safely, if you're going to divide up chores.

-Are there any pets eating gluteny food that you might have to watch out for?

I'm sure other people will have more tips and things to think about.

I don't know how spicy exactly you made it, but have you eaten anything that spicy recently? Indian food of any kind will do that to my boyfriend and he has no issues with gluten. Some people just can't handle the spice. Any chance it was that? Or maybe your healing gut at least couldn't handle it quite yet?

A repeat of your blood test could be valuable. If you've been gluten free, but you're still experiencing symptoms, one possible reason for that might be cross-contamination or gluten sneaking in some way you're not aware of. Getting your blood-test redone might be able to shed some light on that.

On the other hand, getting retested might not give you any new information to go off of. Some people take a VERY long time to heal before they stop feeling poorly, and some people develop other intolerances that give them problems.

"we randomly test the product up to 20ppm (parts per million) to ensure that the wraps really are Gluten Free"

Many celiacs can't do 20ppm, it's too much for them (and still technically causes damage to the rest of us). But at least they're honest about what their standards are.

That said, it does look like they go to great lengths to make sure everything's clean. I think it depends on your level of sensitivity. Many won't risk it because they don't even eat products made in the same building as gluten products.

To sum it all up:

It's very possible that all of your symptoms, including the findings of your colonoscopy and even your endoscopy, are indicative of either celiac or gluten intolerance. You CAN have celiac with negative bloods and biopsies, though in my opinion, if you know gluten is causing a problem, it doesn't really matter what name you give it. You tried going gluten-free and felt better, and that was only after 3 weeks (many of us take months to start seeing a difference).

I strongly advise you to go back on a very strict gluten-free diet.

You are so good to be concerned and to want to help him. Also, you are completely justified in your feelings...it's a big deal for celiacs to need to be gluten free and avoid contamination. Since he's not living with you and just being over often, it's likely that you won't need to worry about having gluten in your kitchen, so long as you can clean up well and you aren't baking or playing with flour while he is around. It's so wonderful that you're thinking of giving him a little area! If you do that, make sure no gluten food is stored or prepared in that space, and keep in mind that cutting boards (especially wooden ones) cannot be used for both gluten and non-gluten, and neither can scratched pots, pans, cookie sheets, or wooden spoons (the gluten can settle in there and won't wash off). I know all that sounds scary, but that doesn't mean you have to buy him his own set of kitchen stuff. It's not a big deal for him to grab a frying pan from his house when he's on his way over, if you'll need it. At least, it's not a big deal to me. Sometimes we just have to do things like that. Dishes, in theory, should be fine as long as they are well-washed, and dried with a clean towel.

When celiacs eat out, we ALWAYS need to ask the ingredients of our food and how it is prepared so we know it is safe. Many of us don't eat out often simply because it's a hassle and may be low-risk without being completely safe. However, it IS usually possible to find trusted local restaurants and places that you have good luck at. I'm guessing he didn't check the preparation of the food he ordered.

Obviously I don't know him so this is just a thought, but perhaps he is feeling embarrassed about being so sick at your house and that's why he doesn't sound like he's looking forward to talking about it. But it's a good sign that he IS going to discuss it with you.

I agree with what has been said above. One more thing...Celiac is very misunderstood still by doctors, and so that might be why he doesn't seem to really know how to control it completely and why he made the comment about you knowing more about it than him. When I was diagnosed I was told "stay on that diet" and not given another word, no follow-up appointment, nothing. Left to fend for myself, like many of us are.

It's okay to be a little nervous, but don't let this turn you off from him. Maybe with a little encouragement you can help him get his health on track. He needs to understand that having celiac is not a life-sentence to be sick all the time--if you do it right you can feel great!

Websites owners or moderators can't choose the types of ads that appear on the site (except for ads from the site's sponsors). The ads aren't handpicked--basically whatever company (say, Google) provides the ads runs an automatic scan on the website and picks up words, and the ads get matched to that. They do that so the people who are on the website will see ads that might actually interest them, and click on them, and make money for the ad companies.

So a website that has the words "gluten" or "celiac" will get ads from gluten-free bakeries or companies, and multivitamins targeting Celiacs. But we also talk a lot of "pizza" and "cookies" and "bread," etc. and so you're bound to see a regular pizza ad on here every once in awhile. Sucks, but it will happen.

Perhaps we're talking about Food For Life?

I use their coconut oil without problems. I have sometimes reacted as super-sensitive when there was trace amounts, and I've also been fine on occasions when I was surprised to not have been glutened by my surroundings. So, I'm fine with Nutiva and I'm at least very sensitive, but better get some more opinions.

I'm planning a trip that involves all three west coast states, and the only part I'm stuck on is the 6 hours between Crescent City and San Francisco. I usually use Gluten Free Registry for things like this but they don't have Crescent City. I need to make a list of safe places to eat along the way, particularly because I'm traveling with 2 gluten-eaters and one other celiac, so we need a list places that the two of us can safely eat while also pleasing the other two.

Can anyone help with safe places?

I struggled with Candida for years in many different manifestations (I thought it was normal to have a yeast infection for two weeks after every period). It disappeared miraculously during my second week gluten-free. I've been gluten-free and Candida-free for 5 months now.

I'm sorry your family has experienced the stress of your sister being sick and not knowing why. As ravenwoodglass said, you are a very kind and loving sister to be concerned and want to make sure she's okay.

That said, celiac disease is not life-threatening and does not cause brain damage. It's possible that looking on here you see some people who have had celiac undiagnosed for 20, 30, 40 years or more and are experiencing the effects of having intestine damage go untreated, but it's not likely that your sister is at risk for many complications, and it's not likely that any issues she does have will be serious. Some common side effects of celiac are things like lactose intolerance (not so scary ) It is easily treatable with lifelong adherence to a gluten-free diet as said above, which is not that difficult to adjust to once we get used to it.

Don't worry, everything will be okay!

Could be. For me it often varies, sometimes I wouldn't feel the full effects of a Friday night glutening until Sunday morning. My gluten reactions always wait until morning, for some reason.

If you try it with the amaranth let me know if it works. Hope you enjoy them!

I am aware that celiac reactions vary greatly from one person to another, and some celiacs have reactions similar to this, but I think it's important to mention that you should consider the possibility of having an wheat allergy rather than celiac, particularly since you were self-diagnosed so I'm assuming that means you never had an endoscopy or anything that would indicate intestinal damage. Since you have a severe corn allergy, consider that it may be a wheat allergy.

If you have been gluten free for a year already and feel better that way, by all means keep doing it. If you've been gluten-free for that long there's a high likelihood that your results will be negative for celiac even if that's what it is. You know gluten/wheat makes you extremely ill, so regardless of your results, don't eat it! And see about getting an Epipen if you haven't already. You don't want to go into anaphylactic shock without one of those nearby, and it seems that's where your reactions could be heading.

I made these muffins awhile ago and someone asked me to share the recipe. I half invented them, half adapted them from glutenfreegoddess.blogspot.com...Karina's vanilla cupcake recipe. But these are definitely muffins. They are a sweet, spicy breakfast muffin. I fiddled with the recipe while I was making them in order to get them the way they ended up, so feel free to do the same. Also, substitutions work in many cases. Inherently gluten and soy free, potentially free of dairy, corn (if you choose ingredients and brands carefully), and eggs.

Dry Ingredients:

1 1/2 cups sorghum flour

1 cup tapioca starch

1 cup brown sugar

1/2 tsp. salt

1 tsp. baking powder

1 tsp. baking soda

1 tsp. xanthan gum (guar may work)

1 1/4 tsp. cinnamon

Wet Ingredients:

1 cup warm water (or rice milk)

2 eggs (or replacement)

3 Tbs. butter or olive oil

1 Tbs. vanilla extract

1/4 tsp. lemon juice

1/2 cup applesauce

Swirly Filling:

1 Tbs. butter or olive oil

3 Tbs. brown sugar

1 Tbs. applesauce

1/4 tsp. cinnamon

Directions:

Preheat oven to 350 F. Combine dry ingredients. Add the wet ones in and beat or blend well. Spoon into greased 12-muffin tin. Mix the filling ingredients together in a bowl with a fork. Spoon evenly over unbaked muffins (yes, on top--it will sink in by itself during baking). I put a few small lumps of brown sugar over the tops before baking them (optional). Bake 27-30 minutes. Freeze whatever isn't eaten in the first day, and microwave for 30-45 seconds to reheat.

These were so yummy when I made them, and I swear they would have fooled any gluten-eater in the world (yes, even the texture!). It's a flexible recipe, so do what works for you in terms of substitutions and amounts of ingredients. Let me know how they turn out and if you do anything differently.

I do want to say I think you're being an awesome girlfriend for being supportive of him, and especially going gluten-free for solidarity. I think sometimes people don't realize how good that makes us feel, someone saying "I'm in this with you, we'll do it together."

Have you had a long sit-down talk with him about this, or just bits and pieces here and there trying to get him to understand? I don't know what the rest of your relationship looks like, but I could never imagine saying "Sorry, looks like if you can't take care of yourself you can't take care of anything. Bye bye!" This is something he needs help with, and unless your relationship is strained in other ways, I could not imagine it would be the best thing to break up with him over this. No disrespect of course to those who advise you to think about your relationship (we all need to be evaluating our relationships) but I simply see a different point of view.

First of all, he needs to understand that celiac is not impossible to live with. It does not rule my life, and it doesn't really stop me from doing anything except eating gluten. There are so many worse things that can happen to a person besides celiac! I can go somewhere with friends and either bring my own food, or just enjoy their company and not let the food issue get in my way. There are so many things he can still eat, and he needs to learn how to appreciate them. Humans tend to compose too much of our diets from carbs and starches anyway, so there's no need to bother too much with replacements unless it's the occasional treat.

What are his favorite foods? Sometimes you can make really good alternatives if you do it right, if that would help him cope. I think one of the biggest things he needs is to realize this is not the end of the world. It's just gluten...who needs that, anyway?

If it's in the context of explaining that I can't eat something or can't order something, half the time I just say "I can't have wheat," especially if there's no chance that the item has rye, barley or oats. There's no point in complicating it.

A short way of explaining it in better detail, if you're going to use the words celiac disease, is to say it's an autoimmune disorder that means you can't digest a certain protein in wheat, rye, barley or oats and causes you to suffer damage to your intestines, and a lot of pain and illness, if you do eat it, even tiny amounts.

Those explanations are different that the kind you need to give to a waiter or restaurant manager of course, because then you need to cover cross contamination, etc.

two words: Open Original Shared Link. (< click link!)

My period's never been the same since I started using my Yuuki. And it's probably coincidence, but I swear my cramps have also gotten better since I started using it.

Also reusable cotton pads are gluten-free and good for the environment.

I second the cups. My debilitating cramps have gotten SO much better, I don't spend $15 a month on supplies, there's nothing to throw away, I don't have to empty it every 4-6 hours...the list goes on.

On another note, horrible periods were one of my symptoms. I had always had bad ones, but year before being diagnosed my 40-41 day cycle (long, I know) began to rapidly shrink and I would throw up anything I tried to eat for the first few days. At my worst it was 20 days long with spotting in between. Gradually as I got sicker, the stomach problems started spreading beyond my period, and that's when I finally started getting checked out. When I got diagnosed and started healing, the cycle started stretching out and the vomiting stopped at the next cycle. Now, 3.5 months post-gluten-free I'm back to 41 days and I'm not sick on it; with that plus my Mooncup (just switched from Divacup because I got angry with Diva while I was learning and maimed her with a hole puncher) I'm finally having manageable periods for the first time since puberty.

^ Goldfish! Yes. I also miss mozzarella sticks. I have tried making my own but they never turn out tasting very good. I miss pierogies, and soft, warm Italian bread. I seem to have found an acceptable substitute or recipe for everything else.

EnviroKids makes a line of cereals. They have something similar to rice krispies, something sort of like kix I think...worth checking out. They have fun animals on the box and are marketed for children but they're still yummy, just expensive.

I think Kix is also newly gluten free, but I don't know how safe they are from CC. Just a rumor I heard.

I'll try to help here because I think we're about the same age and I'm in a similar situation.

To start, even though you don't know how sensitive you are, you need to assume the worst while you're healing. You don't need to get new dishes (just make sure things get washed properly) but you should get new non-stick pans/sheets and a skillet if you use one, especially if these things are scratched. Gluten can get cooked/baked in there and make you sick.

Keep your gluten-free things in a separate place (a different cabinet or shelf will do) from gluteny things. Make sure your roommate understands just just because you aren't going into anaphylactic shock doesn't mean it's not important that you don't get contaminated at all. You will suffer damage to your intestines whether you react or not, and you will likely react and get sick. Your kitchen doesn't need to be a biohazard, but if your roommate bakes, she needs to make sure to wipe up well afterwards..and you probably shouldn't be baking in there at the same time or shortly afterwards as flour can hang out in the air.

Unfortunately, you can't take communion. Talk to your church about whether you can provide a gluten-free wafer (they do exist). I have heard of some members here having a hard time in certain churches because they believe the host must be made of wheat in order to be valid. I have been to Catholic, Episcopal and other churches since going gluten-free and have either just take the wine, brought my own substitute (a cracker, maybe) or sometimes had to just skip it. Talk to your pastor and try to work something out.

It's good that you're aware of the need to be very careful and take this seriously!