BlessedMommy

Maybe I have the wrong idea about this thread, but as a NCGI who tested negative for Celiac because my Dr. told me to go off gluten before getting tested, I really wouldn't want to be lumped together with non-celiacs who don't have to take gluten seriously just because they don't have an official dx. I've been extremely sick for two years and consider this a very serious disease for me no matter what my diagnosis is. I see this as a site for those who have been or are seriously ill in relation to gluten. I wouldn't dare touch the stuff again.

 

I may be overly sensitive about this since I sometimes feel I'm not in the "club" of those who have a positive dx, even though I've been so sick. This just struck a chord in me I guess because I wouldn't want to be further separated or put into a category of "the people who aren't really sick" by opening the forum up to potential fad dieters or others who don't take this issue seriously.

 

Again, no offense to anyone's ideas, and I realize this is my issue, but I found myself feeling potentially down graded to a non-serious category and it really upset me, so I felt the need to respond. I guess I'm in some sort of an in-between category which can be really hard. I don't know if NCGI is accepted as a serious thing, I don't mean on this site, but just in general. I don't know if I like the "NC" part of it. Gluten Intolerant can be serious without considering it's relationship to Celiac disease, or at least that's how it seems to me.

 

I may have opened up a can of worms not intended by the original post, but it seemed relevant here.

I totally get what you're saying, because I fall in a similar category.

I understand your frustration.

I'm gluten free without a DX and my path is fairly similar to yours. I ended up deciding to go strictly gluten free after a failed gluten challenge (with hospitalization) over 4 years ago. I know that I will be gluten-free for life and it's frustrating to have to do so without a firm DX, but it is what it is, and I know that gluten is poison to me. I won't try another gluten challenge, because I may not survive the next one! What I tell people is that given my family history, my personal medical history, and the fact that celiac was never ruled out, I must treat my diet as a celiac diet, although celiac wasn't confirmed.

It doesn't sound like you have very many options, other than taking the gene test unfortunately. I look forward to the day when celiac can be determined without gluten exposure.

I agree, I think that most people who think of themselves as NCGS really didn't rule out celiac. The way I describe myself (gluten free after a failed gluten challenge) is that I don't really know what I have. I don't know 100% that I have celiac and I don't 100% know that I don't have it. So since I don't know what I have, I'm going to be careful and follow the diet as strictly as I can, since 2 out of the 3 possible things that I could have could kill me if not managed properly.

I also agree that it's a little premature for people to decide that a medical condition doesn't exist based on a studied sample of 37 people. If they're going to rule it out as a medical condition, they need a really large study, like with thousands of people.

Is bunny raising complicated? My daughter loves bunnies and would love to have one as a pet.

One thing that I've noticed about gluten-free living is that generally this diet gets picked apart, judged, and cross examined more than just about any other.

I mean, generally people with any kind of other dietary restriction, be it medical or moral or just because they think a food is bad, don't get nearly as much flack for it, as the gluten-free'ers do. I notice that I don't see articles saying that the soy free diet is a fad. I avoid shrimp, lobster, pork, etc. for religious reasons and I don't get much, if any, flack for that.

I know lots of people who avoid milk, eggs, chocolate, etc. and aren't allergic to any of them.

It seems when it comes to debate about diets and which is best, people would do better to cut each other a little slack. I agree with you, Irish, I'm not a fan of social media debates on stuff like this.

I had a very severe skin rash that the dermatologist said was eczema. Going gluten free has greatly improved my skin.

Also, if you're ever making food at anyone else's house, double wash bowls, pans, and utensils before cooking in them. I was at our friend's house and going to make some food for myself--and sure enough I saw some crumbs sitting in his "clean" stainless steel bowl in his cupboard.

I can definitely see the dangers in people quickly taking a study like this at face value. There are a lot of people who didn't get a DX for whatever reason (doctors refused, no insurance, non-classical symptoms, bad medical advice, false negative tests, etc.) who really do have severe issues with gluten and have to be 100% gluten-free.

I had to chuckle a little bit at the end of the article when it said that, "Will people accept the science or will they keep on buying gluten-free products that they don't need?" Unfortunately, science or no science, I can't go start scarfing down glutenous bagels without consequence. Of course, in my case, celiac was never ruled out due to my failed gluten challenge. 

There are many people who don't have severe symptoms, but have some vague idea that their brain fog or tiredness might be due to gluten and then they self-diagnose. These people often don't follow a gluten-free diet strictly at all, just a "gluten light" diet. Perhaps they were the people that the article was referring to.

I wonder if deciding that NCGS doesn't exist will improve the diagnostic rates for celiac. I've wondered if most people who thought that they had NCGS actually had celiac, but weren't diagnosed. We all know that celiac is a grossly underdiagnosed condition.

I'm sorry, that is a really lousy situation. Dealing with well meaning friends and relatives is absolutely my least favorite part of being gluten-free. 

It sounds like you'll probably just have to explain to her why you don't feel comfortable, so that the situation doesn't repeat in the future.

Waffle irons should be replaced, it's well nigh impossible to clean out all the crumbs.

I make gluten free waffles in my dedicated waffle maker regularly--yum! So much cheaper than frozen gluten-free waffles.

Just wondered, are glass cutting boards safe to share between gluten-free and regular food, if thoroughly washed? 

I hope that the diet changes help you! I had a very severe skin rash in my pre-gluten-free days and gluten-free has helped my skin a lot!

If there are specific things that you miss, I would try to find satisfying replacements for them.

My favorite bread brand is Canyon Bakehouse bread. It is 100% whole grain and tastes great. 

Being gluten-free is also a great opportunity to try different foods! I have a Farm Share where I get a different box of produce each week and that has helped me in learning to try new things and enjoy new ways of fixing veggies.

I noticed yogurt on your list. If you need a dairy free substitute for that, there is soy yogurt, almond milk yogurt, and coconut milk yogurt. 

Last year, in response to some health issues, I decided to try to go sugar free (including honey, maple syrup, etc. in addition to regular white sugar) for a period of time.

Now I do use some things with very small amounts of sweetener, but I do severely limit them. The health difference is amazing! I don't get sick all the time anymore and I can breathe so much better. My chronic sinusitis is going away.

The difference is like night and day.

I would like to learn how to bake better though. Before starting to be more careful about sugar intake, I was big into baking things. Now I hardly ever bake. Does anybody have some good tried and true no sugar gluten-free recipes?

This is interesting. I've wondered for awhile if many people who thought that they had NCGS actually had celiac, but weren't diagnosed.

Is there any way of finding out whether deli salads (like potato salad and the like) at Meijer's and Wal-Mart are gluten-free?

Anybody have any info? I've looked for it and come up dry.

Waffle irons (if you use them) should be replaced. I can't imagine ever getting all the gluten off a waffle iron. (and they're not really designed to be washed anyway)

I understand not wanting to ever eat gluten again.

I would not do another gluten trial for a million dollars. 

I'm newly diagnosed, also.

 

What I've told friends is this:  For right now, until I have everything under control and feel comfortable, I'm just going to have to stick to eating only foods I prepare for myself.  I'd love to come to their house and have dinner, and my husband would be happy to eat what they prepare .... rather than have them go to a big fuss and worry about me getting sick, I will just bring my own food .... and we can have the joy of spending time together while not worrying.

 

Good friends have said "Sounds like a great idea!"

Not-so-good friends have said "You're being ridiculous."

My response to the not-so-good friends is along the lines of "I'd rather be ridiculous than be in and ambulance, again, and in the cardiac unit of the hospital for three days. So, I'll just be ridiculous, and we'll pass on the dinner invite for now."

 

At my age, I can appear ridiculous and don't really care what they think.  I want to be alive and enjoy all these grandkids !!!

 

I love it Kathy! Great job sticking up for yourself!

I'm not quite as spunky as you, but I'm making progress.

A friend is hosting a bridal shower for her daughter and I mentioned that I would be coming. She said, "We'll have wheat free stuff there." I said, "Thanks, but I'll provide my own food, don't worry about me!" My friend said, "Oh it's safer to bring your own, isn't it? I can understand that you'd rather not risk it."   

So I called her later and found out what the menu was so that I could bring something similar. 

I'm sorry that you got misleading advice from the doctor. You do need to be eating gluten in order to get accurate antibody testing.

Flour stays airborne for hours and pretty much goes everywhere. That's why baking gluten free bread in a gluten containing bakery is virtually impossible. I hope that you figure out a solution that works for everybody. It's no fun being sick!

Ah, looks like this is a pretty good guide. And it looks like there's no reason to be fearful of my Crest toothpaste.

Open Original Shared Link

Which toothpastes are safe?

It sounds like you probably do have celiac, however without currently consuming gluten, you are most likely not going to get a DX unless you start eating gluten again. You have to decide how important a DX is to you, can you stay gluten free without it?

In my case, at a certain point I didn't really have much of a choice about pursuing further testing, as I had a failed gluten trial with extremely severe symptoms. (see sig for details) Really, the main reason for conclusively DX'ing celiac is so that people will follow a gluten free diet carefully. I figured that in my case, a $3,000.00 hospital bill was essentially my "biopsy substitute."  I committed to being gluten-free for life at that point.

In the end, you have to make the choice about whether to go gluten free without diagnosis or pursue a gluten trial. If you pursue a gluten trial, I highly recommend consulting a physician and doing it under their supervision and with their guidance.

Good luck!

Welcome to the board!

No, I would not take a positive gene test as a definitive answer.

Since you are still eating gluten, I would suggest getting your doctor to order the full celiac panel blood test. It's important to do it now, as after you've been gluten free for awhile the results will be negative, regardless of whether you're celiac or not, since it measures the gluten antibodies in your blood.

So in the end, I ended up buying up buying basically a few of each type (except plastic):

I got some wooden,some silicone utensils, and some metal utensils for my kitchen.

The metal ones are great for when I'm making a dish to pass for a potluck and want to ensure that they can be washed thoroughly. I love the silicone spatula because it doesn't scratch up my non stick pans, nor does it melt, like plastic. 

I think that silicone is a lot better than plastic, in terms of heat resistance.