BlessedMommy

Thanks for sharing. I noticed that you used the word "allergy." Are your kids gluten issues considered a wheat allergy or is it something different?

My oldest will break out in a rash after gluten exposure, but it can take up to 12 hours to kick in, so I've thought that it really didn't fit the profile of an allergy.

I just want to know what in the world is going on, so I can make a long term plan. 

Do you make waffles? If so, what types? I mostly make oat waffles (made with certified gluten-free oats of course) but I'm interested in finding more ideas, because my oat bin is running low at the moment.

You could get the kids gluten free play dough. 

Open Original Shared Link

So is there a separate skin issue that's connected to gluten, but is not celiac or DH? How careful do you need to be in regards to a gluten-free diet, if you have only gluten induced eczema? 

My kids are homeschooled, so unfortunately there's no school lunch option.

Wheat grass does not necessarily always contain gluten. Open Original Shared Link

Nor does maltodextrin always contain gluten either. Open Original Shared Link

These are iffy ingredients that may or may not be safe.

Have you contacted the manufacturer of the product to find out the status of it? 

Welcome!

Yes, you do more likely than not, have celiac. 

The great news is that from here on out, you can focus on getting better. There are many great foods out there that can help to take the place of some of your old favorites that you will have to give up. 

You should also get the children tested, since celiac is genetic.

Does anybody have any tips for stopping itching while healing up contact dermatitis on your hands? I've had skin troubles in the winter year after year, and this year was the absolute worst. Finally, a dear friend helped me to clue into the fact that I needed to be wearing gloves while doing dishes and other things like that, but I'm still trying to heal up the damage. My skin has thinned up a lot from damage and steroid creams, so it's quite sensitive and gets very itchy.

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.

You know, now that you mention it, the granola looks VERY similar to the Enjoy Life Very Berry Crunch granola. Hmmmm....Maybe I should do a blind taste test on them. LOL!

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!