BlessedMommy

If someone can "tolerate" 20 PPM of gluten, does that mean that your body essentially doesn't recognize that small of an amount? Do people's body's abilities to "recognize" gluten vary?

I talked with my mom on the phone and I again asked her to please consider celiac testing. Crossing my fingers and hoping that she does eventually--for her sake as well as for mine.

I've been wondering that very thing as well and I'm not looking for permission to cheat either, so I understand where you're coming from.

Thank you! For years, I'd been overly careful about vanilla and vinegar, now I can possibly have more options. So good to have a community where we can ask questions and learn.

So, the generic term "vinegar" always refers to white vinegar and if it's malt vinegar, that's clearly specified.

Okay, something that I don't understand, if you just see the word "vinegar" on a salsa label or salad dressing label, can you assume that that vinegar is gluten free? Or not? I've heard such mixed reviews (and I know that vinegar is typically made from grain) so I play it safe and don't buy any salad dressing or salsa with vinegar unless it's either labeled gluten free or I've checked elsewhere to verify.

I'd like to feel less restricted though and be able to know a products status by reading the label. Is that possible?

Is the term "vinegar" generally used to describe distilled vinegar? What about when it says "white vinegar?" 

Thanks in advance.

I see. So it really isn't very helpful, because it can't rule it out?

What is the disadvantage of only testing for the beta?

I don't go to doctors much at all.  I even had home births with all 3 of my kids. I don't get routine check ups of any type at Dr's. I only go if there's a dire need (like UTI or 2nd degree burn or something) or go to the ER in an emergency, like when I had my TIA or when I cut my finger badly and needed it stitched.

Being uninsured makes it financially tough, too. 

Does it do the complete testing, though, alpha and beta?

You know, something recently occurred to me. If I got to a celiac potluck, should I even eat the food there? Or should I find out what the celiac's practices are who cooked it? There are many celiacs who will do stuff like discard the bun and eat the burger. I also don't really know if they cleaned their house out and got rid of old pans and utensils after getting dx'ed. What would you/do you do? 

Gemini, which lab or provider did you get your test through?

No offense to anyone else who feels differently, but personally I feel fine with going along with the University of Chicago research. Being that they are the leading celiac researchers, I will accept their findings. And as of now, they're saying that unless you have either HLA-DQ2 genes or HLA-DQ8 genes, you cannot develop celiac. Perhaps in the future, they will develop more research and come to different conclusions, but as of right now, this is the most current research.

So I'm going with that, and if it turns out that I don't have those genes, I'll assume that "all" I have is NCGI and not a life threatening auto immune disease.   Either way, though, I'll still going to be faithful to the diet. 

For thriftiness sake, I usually use white corn tortillas in the place of something a gluten eater would use a flour tortilla in, like soft tacos or burritos.  White corn tastes less corn-y than yellow.  I like Rudi's gluten-free fiesta tortillas, but because they are about a dollar apeice, I only use them for quesadillas.   Yellow corn tortillas are good for use inside things like enchiladas or casseroles, and I will bake them into taco shells to save on fat.

 

As for the non-gmo part, I have seen organic corn tortillas, but it may take some looking.  Bob's red mill has non gmo masa harina.

Thanks for the recommendation! I'll look into getting it on Amazon. I have a tortilla press and have made lots of corn tortillas in the past, but prefer to switch to organic or non gmo masa harina and it's much harder to find than the regular.

Thanks for all the advice and thoughts. I know there's a lot of different viewpoints on the genetic tests and it's good to hear both sides of the coin. I wish that NCGI was better understood and I wish that there was a way to test for celiac without a gluten challenge. In the future, if they make a test like that, I'll be the first in line to take it. LOL!

At this point, I probably will start the conversation with my husband about pursuing genetic testing. I'm also going to talk to the local naturopath and see if she has any recommendations, because she herself is a celiac (blood and biopsy dx'ed) and so I'm sure that I'm not the first person that she's run across who's interested in genetic testing.

Though I would've rather gotten a DX, I'm thankful for good health. If I had waited 10 more years to go gluten-free, I could very well have developed permanent health problems. (I've heard that it takes the average celiac over a decade to nail down a DX)

I bought the flav-organics brand which says gluten free right on the front. 

Are you doubting that you have Celiac or NCGI and looking for a diagnosis?  Still having symptoms?

I'm fortunate in that I'm very healthy. I'm 32 and I would say my health hasn't been this good since I was about 16. So apparently the gluten-free diet has been working really well, because my health had started to go downward in my early 20's. I have a mom and older sister who both have very poor health (whom I suspect have un'dx'ed celiac based on their gastrointestinal symptoms, mal absorption symptoms, neurological problems, symptoms when they eat gluten containing grains) and my older sister is in her 30's and already disabled and not able to work. So those are also clues in the puzzle.

My 2 real concerns are:

1) My children. Celiac is genetic and I really want to know how "at risk" they are, if that makes sense

2) I have to eat this way forever and it'd be nice to have some slip from the doctor documenting it, especially in more difficult situations. (staying over at people's houses for a full weekend, etc.)

I'm so sorry for all that you've been through. I'm undiagnosed (but maintain a 100% gluten-free diet) and I think that it's best to get a DX while you can. Adding gluten back in later can be extremely difficult or impossible, if you ever want a DX later on.

Like the PP said though, it's a personal choice that only you can make.

Best of luck!

I am definitely having a hard time deciding which way to go, especially being that I'm uninsured so I can't afford to choose the wrong/unhelpful way since I have to pay for every penny of it OOP. Thanks for understanding and being patient with all the questions. I've done a whole hoard of google searches too. 

I know there's no looking back, I'm definitely not trying gluten again. I'm also going to continue to maintain a gluten free home, watch for cross contamination, etc.

I think that you summed it up, I know that I obviously have a gluten issue, but it would be nice to get it narrowed down a little bit so I don't have to spend the rest of my life wondering which one it is. Given my symptoms (and also they fact that everything started with a trigger: pregnancy), if I come up with something really obvious like celiac genes as well, I'll say that narrows it down to celiac. If I don't have celiac genes, I'll say that it's NCGI and live the rest of my life gluten-free anyway, but at least I'll know.

It sounds petty to some, but I'm one of those who would have really benefited by a DX if doctors had run the right tests and asked the right questions to begin with. I don't have the time or inclination to be hospitalized so that's obviously not possible now, but I still want it narrowed down as much as possible.

Thanks for boiling it down for me!

I see, thanks for your explanation.

Why  is it impossible to get it via blood test? Do you mean that they were negative

My doctors initially didn't know what my problem was and didn't even suggest the possibility of gluten. I eventually had to figure out myself that gluten triggered my problem. By the time I was gluten-free for a few months, I was wanting a DX, but I ended up having major troubles with the gluten trial and abandoned it rather than going on to have a full blown stroke. My history is in my signature.

Yeah, you are all but guaranteed to get CC'ed there. Same with Subway, I won't touch their food with a 10 foot pole. 

So all alcohol in vanilla is always distilled?

I'm glad that you had a good experience! It is nice when employees really take the time to listen and cater to your needs. 

I went to a nut milk class today and double checked that their samples were gluten-free. I asked about their vanilla too and the host checked it for me . Now I'm seeing something stating that pure vanilla extract is all gluten-free and that the alcohol in it is not concerning? I thought that alcohol could be a potential hiding place for gluten?

We have a doctor near our area who is very knowledgeable about celiac and has it as one of her special interest. She sometimes DX's patients with celiac based on factors other than blood tests/biopsy in certain circumstances.

Is a DX based on symptoms, symptom resolution, and genetics useful? Is it worth getting if its impossible to go the blood test/biopsy route?