BlessedMommy

I think that the most important thing to do is to read the ingredient list on each and every product that you buy each and every time. I don't think that anybody here is saying that we should eat food without reading ingredients.

There can be risks, yes.

Keep in mind that your mileage may vary from mine. I had neurological complications 10 days into my gluten challenge. (though I had NEVER had neuro complications from gluten before the challenge)

Due to not wanting to have a stroke at my young age, I decided on being strictly gluten free. My complications, though, were RARE. The vast majority of gluten challenging people will not have a TIA. Only you can access the benefits and risks and weigh it out for yourself. What I would suggest if you want to do a gluten challenge is that you only eat 2 pieces of bread per day (or equivalent) and otherwise eat your regular diet. If you don't overdo it, it will increase your chances of getting through the challenge better.

After time and practice living the celiac lifestyle, it gets easier. The rule of thumb is always bring your own food. (my family and I abbreviate it to BYOF.) I have a car kit where I carry a knife, a flexible cutting board, a minature skillet, a roll of aluminum foil, packets of nuts, salad dressing packets, individual peanut butter cups, individual packets of hummus, lara bars, soy jerky, stuff like that, etc. That way when I'm out and about, I don't have to starve. I can grab a salad at the store's deli section and an apple in the produce section and be able to throw together something on the fly.

Much of the stress in the celiac lifestyle comes from when people try to get other people to cook gluten free for them when the other people don't understand celiac. There's simply too many possible mistakes to make and too high of a learning curve. If you just BYOF, you can focus on the joy of enjoying your friend's company and not be focusing on whether they cooked the food right or not. Life is just too short to spend much time quizzing people on their food prep methods.

The only exceptions to BYOF are either people who have training in preparing safe food or food that's very difficult to mess up in the first place. When I go out to Wendy's, I ask for a baked potato and ask them to please leave it in the original aluminum foil and not to unwrap it. Or I'll get things like smoothies from restaurants. The only types of restaurants that I usually get anything resembling a normal meal are restaurants that have a protocol for safe gluten free dining. Even there I tend to emphasize that I'm not a fad dieter and will get sick from small amounts.

As far as your 3 options that you listed, I think that 1 and 2 are probably the most reasonable. Here's how I see it, a negative biopsy doesn't mean that your intestines aren't damaged, it only means that no damage was found. If you actually have celiac and you assume that you have some other type of gluten problem other than celiac and allow trace amounts in your diet, you will be damaging yourself. It only takes a very small amount to start an auto immune reaction.

This is true of all celiacs, whether they have symptoms from cross contamination or not.

I understand the dilemma that you're facing and I only wish that science had come up with a better diagnostic process. If you don't have violent symptoms and you want to try a gluten challenge, you could start with small amounts and proceed carefully.

Good luck!

Personally, I would not cut something out altogether unless I had a severe intolerance or true allergy to it. I think that moderation is key. I try to be very moderate on sugar and that is the main reason why I don't bake much these days. But I might have some on occasion.

For example, I limit brown rice in my diet, because of the arsenic issue. But I probably won't cut it out altogether, because the sheer amount of work to avoid all brown rice in a gluten free diet would be staggering. So I do have things with some brown rice flour in them. I do buy non-gmo corn pasta usually instead of rice pasta (it's a lot cheaper too) but I do make lasagna occasionally with brown rice noodles. 

I try to limit sugar to the amount suggested by the American Heart Association, which means that I plan my treats around that. If I have one treat for the day, I'm likely done. 

I think that the key is to listen to your body. For many of us, we feel fine with limited amounts of gluten free packaged foods and it makes our life that much easier to not have one more food restriction. If you feel totally lousy when you eat baked goods or pasta, maybe it's time to mostly avoid them for a time.

Everybody's healing journey is going to be a little different.

I'm probably the odd one out, but I actually think that Udi's is marginally better than the Aldi's bread. It's not bad, though, especially for that price and so I'll likely buy it from time to time.

There are a lot of scenarios like this in a celiac lifestyle. For example, drug companies don't test their medications for gluten either. 

I think that we just have to evaluate the level of risk based on what is known about the company. If 95% of a companies products contain gluten and they make one with no gluten containing ingredients, but that's made on shared equipment (even with GMP) and it isn't tested, I won't eat that product. Nor will I eat baked goods made in shared bakeries.

However, if most of a companies products are naturally gluten free and they disclose ingredients rather than hiding them, I would feel okay with their food.

In the end, it's a personal choice and we all have to choose the level of risk we're willing to live with.

But it is not so cheap. For example, one of the criteria to be certified is that even the employees can not bring in gluten free food in their lunches in the manufacturing facility (I toured a commercial gluten-free bakery in Atlanta). The certification is super strict. They just do not test the end product but suppliers as well.

I assume that you meant that the employees were prohibited from bringing in gluten?

Wow.   

No, unfortunately there isn't a way to test for celiac, without extensive gluten exposure.

If your reactions to gluten exposure are that violent, then you likely have your answer already.

I attempted to gluten challenge and to had to quit after 10 days, due to severe neurological symptoms that landed me in the E.R. I just made the decision that I was going to be gluten free for the rest of my life. For me, getting a diagnosis is unquestionably not worth it. 

Really, if you want a diagnosis so that other people will take you seriously, a diagnosis may or may not help you with that. There are many DX'ed celiacs who have to deal with people not taking them seriously.

My close friends and family know what I've been through and where I'm at. My inlaws even purchased  a separate grill for gluten free only items for me to use at their house. (I didn't ask or even imply that such a thing should be done, they just bought it out of the goodness of their hearts) Many people don't really know or care what my DX is, they just know that I can't and won't eat gluten, period, end of statement. Overtime, if you display consistent behavior and never willfully cheat on the diet, most people will understand that it's serious and that you're not a fad dieter.

If you decide to stay with a gluten free diet without a diagnosis, being up front with your family and friends helps. Let them know that you may have celiac but are unable to safely nail down a diagnosis, so for your own safety, you have to follow a strict gluten free diet. Let them know what that entails and also let them know that you don't expect them to go out of their way for you and that you will plan to provide your own safe food items for any event.

I've often seen hospitalization cited as a reason to get a diagnosis (i.e. getting safe food if you had to be in the hospital) but I don't think that's a huge issue. When I was with my son in the hospital for a broken leg, they cheerfully allowed us to order off of the gluten free menu, no proof of diagnosis necessary. And if you're in a hospital without a reliable gluten free menu, you can pretty much plan on eating whole fresh fruit until your spouse/friend/parent/child brings you food from home.

Good luck!

Another cereal option is Cream of Buckwheat. Open Original Shared Link

Just reported the phone as stolen to Apple. If a user attempts to activate it, they will get that message and we will be contacted. Then hopefully with the help of the current owner, we can track the bad guy down eventually. 

I'm going to file a police report this morning too.

Unfortunately what Paypal gave us was essentially a temporary "courtesy credit." The chargeback continued and the credit card company ruled in the buyer's favor, even though he never returned the phone. So he kept our brand new phone AND all of his refunded money.

We're now pursuing reporting him to law enforcement and reporting the phone as stolen to Apple.

We've implemented even tighter security on our Ebay sales, such as blocking foreign payments through our Paypal account, etc.

If those white collar criminals would put all that energy towards an honest living, they would be just fine.

My Aldi's hasn't been able to get it yet, but they have a shelf tag, so they plan on it. I have been able to buy quinoa and gluten free pasta at my Aldi's though.

If you feel you really can't wait the choice is yours. But if you go gluten-free now you won't be able to get tested later unless you do a gluten challenge, and from what folks here have said, that's a real bear.

 

Yep, a gluten challenge can be a real bear and there's no guarantee that you can get through one at all. (see my sig)

I would suggest that you pursue absolutely every testing option available, be it more bloodwork or endoscopy. With your symptoms paired with your family history, though, I'd say there's a good chance that it's celiac.

You said that she doesn't give you money....do you have your own job and income source?

Are you a minor or are you a young adult living with your mom?

^Yes.

I'm putting my kids through a gluten challenge to finally end limbo land and if I had it to do over, I would've never tried to take them gluten free without a diagnosis.

I find it hard enough as an adult without a diagnosis, though I've been able to adapt over time, but for kids it's even more difficult and realistically it's very hard to enforce a 100% celiac diet for a kid, without medical directives. Thus, for many kids, lack of diagnosis could harm their harm in the long run. Even if the diet is helping your kid, there will always be that doubt of "do they have celiac or not?" and when there are doubts, there's the temptation to cut corners or be a little less careful about cross contamination, which will harm their health in the long run if celiac is the issue. (just speaking from personal experience here with my own kids)

I'm fortunate that my kids are able to tolerate the gluten challenge, so that I can end this and bring us to a permanent dietary decision for them.

However I wasn't able to tolerate the gluten challenge and so now I'm facing the fact that a diagnosis is forever closed to me...unless of course science comes up wtih a way to get one without taking the risk of brain damaging myself.

The best time to get a diagnosis is right now, while gluten is still in the diet.

Also, this diet is not easy to enforce when your child is in the care of others, such as grandparents or other caregivers. Having the gravity of a celiac diagnosis can really help, when it comes to taking all necessary precautions to keep your child healthy.

If something is old and you don't want to donate, but feel guilty throwing it out, repurposing works as well. My old beat up gluten cookie sheet became the base for a model village that my kids made as a social studies project. It holds the plaster of paris really well and gets the job done.

Is it possible for you to do a compromise, like maybe a high protein, lower carb lacto ovo vegetarian diet with lots of nuts, eggs, quinoa, etc. instead of going directly to eating meat?

I don't blame you for not wanting to eat meat. I would have a hard time starting to eat it also.

I am vegetarian (although not vegan) because of religious and cultural reasons and I know that the decision to possibly change your diet under those circumstances is not an easy one.

I hope that you can come to the best solution for you. 

Exactly!

I've come to the conclusion that gluten free is not, and cannot be a fad. Why? Because I've never seen a person who cleaned all cross contamination from their kitchen, religiously brought their own gluten free food everywhere, and only ate out at restaurants very carefully, do this just for fun. I'm sure that there theoretically could be a person who was that strict who didn't have a medical problem, but in my opinion, they're about as rare as a unicorn.

I think that the fad diet is the "gluten light" diet. But a strict gluten free diet is so stringent, that it's highly unlikely that someone would do it just for kicks.

WITHIN REASON...those two words say it all. LOL!

OP, I noticed that you mentioned in your signature that your symptoms were chronic fatigue and decreased cognitive function. I know those may be more subjective than other symptoms, but have you noticed improvement in those areas since going gluten free?

I live in Small Town, USA, but I'm still going to check our Aldi's and see if they have it. It sounds great!

The recipe worked out really well and the kids really loved it! I picked up some more ingredients and made a few batches with my own kids later in the day too.