BlessedMommy

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? 

What do you do for tortillas? Anybody found a gluten-free flour tortilla recipe that works? What about non-gmo masa harina?

IrishHeart, do a lot of pasta places that offer "gluten free" pasta, boil it in the same water?

I would not go to any place where the primary food offering is wheat filled pasta.

 

Look at Find me Gluten Free for ideas. I post there frequently.

It's my understanding that Olive Garden pasta isn't cooked on site, that it's basically prepackaged and heated up in the microwave. Are there CC problems with Olive Garden that I'm unaware of?

After getting glutened at Taco Bell, I won't eat there. CC is a major issue for Taco Bell. If I'm faced with the choice of Taco Bell or skipped meal, I opt to skip the meal. 

I avoid most fast food places but I've had good luck with Wendy's and Qdoba's. At Wendy's I say "allergy" and ask them to change gloves and I do the same at Qdoba's.

If you've only been off gluten for just 13 days, I'm not sure that you would need to eat it for a full 3 months in order to get DX'ed. It seems like the antibodies wouldn't go back to normal that quickly, especially since you still got a little gluten during that 13 days.

But hopefully someone more knowledgeable than me will chime in.

I will say, right now, I am not formally DX'ed and I'll be the first person to say, if you possibly can get a DX, do it now! It makes life easier for you, in terms of people taking you seriously and also gives you information on how to proceed with your kids, if you have any.

Oh and I understand the frustration of doctors writing off your condition as eczema. My primary gluten symptom was a severe skin rash and my dermatologist just DX'ed it as eczema and sent me home with a prescription for steroid cream. It took me experimenting on my own to figure out that it was food triggered.

If you can tolerate Benedryl, that can be helpful. One time when I got a flaming itchy face I took Benedryl for it. The Benedryl knocked the itching and burning out. I also got the rare side effects from the Benedryl, though, which was no fun.

According to the University of Chicago, though, lack of having the HLA D2 or D8 genes does rule out celiac. My main purpose of looking into it in the first place was to assess my daughter's risk for celiac and determine whether to put her through a gluten challenge, but I also would like a little more info on my own genetics.

I feel very frustrated that due to circumstances and the doctors that I saw/consulted with, that I was denied the chance to get a DX in the first place and I'm looking for any pieces to help put together the puzzle, especially for my kids.

I can't do the celiac blood panel, unfortunately. It would undoubtedly come up negative (regardless of whether I am or not) since I've been gluten free for over 4 years. 

I have the benefit of being in a tri-state area (MI/IN/OH), so it's possible that even if one state has no option to order blood tests yourself, that one of the other states might. It's looking like Indiana might have a lab that is geared towards self pay patients.

I don't have insurance.

Are the cheek swabs just as reliable as the blood testing?

I prefer not to have to talk a doctor into ordering the tests for me.