BlessedMommy

I think that a lot of people on here don't fit neatly into either category. Because medically speaking NCGI only applies to individuals who have ruled out celiac disease as a possibility. 

But I think that NCGI people could comfortably fit with people who have to live indefinitely with no confirmed diagnosis (i.e. neither confirming nor ruling out celiac) because the issues that they will live with are much the same.

Skin issues are really my kids main symptom. My daughter's is clearly triggered by wheat, even 1/4 of a slice of bread or 1 cookie will cause her to develop a rash in the exact same place. Other than that...she's had some tooth problems at an early age and has vitiligo. 

So I think that I might go by the "family members should be tested" mantra. 

My kids doctor IS my doctor, so he has a record of my medical history. (my kids see a family practice doctor, not a ped)

Congratulations on getting a DX! You've already crossed one of the harder hurdles.

Here's hoping that her health will improve rapidly on the diet. You're in the right place for information, this forum has surely helped me.

Thanks for your help. I felt like I was in a no win sort of situation and I didn't want to be annoying or rude, but I didn't want to eat gluten either, so I didn't know what to do. (so I guess I ended up being annoying, ouch )

We had brought a giant storage container of food on the road, a whole box of fresh produce, my own waffle iron, my own rice cooker and a whole slew of stuff--and they still wanted to make stuff for me.

This should help me prep better for next time so that I don't have to avoid visits with family.

That is a great idea to make up some main dishes ahead of time to share. Have you found that people are less likely to try to plan the menu for you, if you bring stuff premade, instead of bringing ingredients and cooking supplies?

In our case, we were driving from FL to NC and had been on the road for days, but it still is probably doable if I worked at it, particularly since I'm vegetarian so making up a dish and then transporting it 10 hours without normal refrigeration probably would work.

It was kind of awkward, because I didn't know what else to do. I had brought my own food, but she still wanted to make stuff for me.

My children are 5 and 7 years old. I maintain a 99% gluten free home. (my husband is a gluten eater, but anything that comes in the house has to be carefully segregated or pre-packaged and can't be cooked on my pans.) If I were to do a gluten challenge for the kids, I would probably take the bread outside, make their sandwiches outside, and make them eat them outside and then wash up before coming back in the house. LOL!

What are other possibilities for gluten induced skin issues, other than celiac?

No, I don't know my children's genetic risk factors yet.

I think that it's hilariously funny (in a kind of sad way) that they've said that it's been "thoroughly proven that gluten sensitivity doesn't exist." 

A study of 37 people (most of which probably didn't have severe issues if they were willing to be guinea pigs for gluten) is not a thorough proof that an entire medical condition doesn't exist.

I have real issues with gluten and I would NEVER sign up for a study like that! Even if they signed a form saying that they would pay my ER bills. 

^^^EXACTLY!

Okay, this is honestly one of my least favorite parts of being gluten-free. (other than well meaning people trying to cook for me maybe, though this is a sub category of that)

Last time I went to my SIL's house for the weekend, I was so glad to get home! I was so sick and tired of harping on proper gluten-free food prep and hanging out supervising cooking and nagging about washing everything, etc. etc. (and she really wanted to cook for us).

Should I bring my own safe pots, utensils, and cutting board next time and simply say, "You know, with me being very careful about my food and all, I think that it's best to use my kitchen equipment with gluten-free food, that way there's no worry about washing your stuff well enough? (and I'll hang out in the kitchen while said food prep happens?)

I don't want to avoid going away to people's houses, but the stress is annoying.

If anybody has any additional thoughts to add to my "speech" that would be great too. I will likely only get one chance at this and I don't want to mess it up!

My kids need to be tested for celiac. I've been trying to organize my thoughts so that I have the best chance of convincing my doctor to listen to me.

Here's some of what I am thinking about telling him:

"You know, I changed my kids diets and removed most gluten several years ago, due to their skin issues. But now I'm realizing that I should have had them tested for celiac first before making any dietary changes. In the long run, gluten free is a very difficult diet to have to follow and I don't want to needlessly restrict their options, if they don't have a real issue with it. It's also very difficult to get accomodations for children in school or camp without some sort of diagnosis. I would like to add gluten back into their diet and pursue celiac testing for them."

And then show him whatever literature is applicable and discuss the gluten challenge.

I'm pretty sure that my doctor will be skeptical that celiac can even exist in the absence of GI symptoms, so that's another objection that I'll have to most likely cross as well.

Is there any sheet of information that is a very concise summary of the points that I mentioned? I know that he likely won't read stacks of paper, so I had better nail it down to the absolute bare bones and the main points.

I think that I'm going to start buying Golden Prairie millet. Open Original Shared Link

I already buy their certified gluten-free organic rolled oats.

Does anybody have a good source for certified millet and buckwheat?

Bob's Red Mill has sorghum flour, but I'm not having good luck finding the other ones.

I agree, there's a lot of choices!

I think, if anything, I eat more variety now that I'm gluten-free, than before.

Thank you! That is very good information! 

So, really for millet, sorghum, buckwheat, and soy, I should be looking for the Bob's Red Mill bulk bags.

That's a great idea Cathy! Not only for cutting, but also for making a gluten free sandwich or any other kitchen activity. It'd sure be easier and less intrusive than giving your relative's counter a thorough scrub down with soap and water. LOL!

And I hope along with you, that the medical community gets onto the idea of doing a petri dish endoscopy some time in the future. It makes logical sense that if you put gluten into a dish with intestinal tissue, that if the person is a celiac, you should see damaged villi on the tissue sample. And in that case, there would be virtually no false negatives or false positives, nor the need to subject oneself to a painful gluten challenge. 

GottaSki, thanks for giving out good information about getting a DX. That could spare more people from the frustrations of being undiagnosed. 

I laughed at their final line. I hope that people with real gluten issues don't go and say, "Oh I read an article that said that unless I had confirmed celiac disease, science has confirmed that I can now chow down on the bread!" 

That would be a disaster.

I hope that this study serves as a springboard for larger studies.

Thanks for the feedback.

I don't have any plans of getting one for my kitchen (my kitchen is 99% gluten free), but when I go to my SIL's house, it's good to know that it's perfectly safe. I might still bring along my wooden cutting board, though, because wood is my favorite. 

In addition to the dedicated facility part, since the FDA came out with their analysis on arsenic in rice products, I tend to favor Lundberg because much of it is grown in California and it's organic.

Rice is a good crop to buy organic because it absorbs a lot from the soil.

I use mostly Lundberg Family Farms rice. They have a dedicated gluten-free facility.

Yes, yes, and yes!

That's the main reason that I hate not having a DX is because I have to defend and explain why I need to be so careful. I also hate all the stuff circulating around about gluten free fads and so on, so forth. Because then people perceive that if you don't have a DX, you've jumped on the fad bandwagon.

I would give almost anything to have a "real" DX, but I wouldn't do another gluten challenge for a million dollars! 

There are a lot of psychological and social issues surrounding having to eat this way without a DX, that's for sure.

^Exactly!