BlessedMommy

Well another hurdle is down! I saw my daughter's new doctor today and she was awesome! She's referring us to a pediatric dermatologist (she said that my daughter had one of the worst cases of vitiligo that she had seen in an 8 year old), among other things, and had no problem ordering a celiac panel for us to do after the 3 month mark of gluten challenge.

Whew!

I'm glad that you have an answer, but sorry that the answer frustrates you. Best wishes in healing!

SMRI, things are confusing, very confusing. I got to the point where I probably annoyed people with the amount of threads that I posted here asking questions on every minute detail, because I felt that my instincts/common sense had failed me before and I didn't want to make any further mistakes. Celiac has a steep learning curve.

I know what you mean and it gets easier, really it does. As far as label reading, the fewer ingredients the better, and if I'm not absolutely sure about it, it gets tossed back on the shelf.

And over time, you get to know policies and manufacturing practices of companies and you develop a repetoire of your favorites.

It gets easier. You'll be okay. Hang in there!

No prob...have to spread the love around!

I used to be the one who would eat things that other people had made as long as they hadn't used any gluten ingredients and hadn't done any obvious CC like using CC'ed peanut butter in it or something. This board has taught me that that's very risky business at best and it's best to just give people a polite, "Thank you, but I prefer to bring my own food."

I don't think that I would've developed that confidence without the support of the board.

I tried them and I really like them! They are much cheaper than the little packets of peanut butter and much easier to work with because you can just dip your apple or celery directly in and avoid the mess of squeezing a packet. Very nice and convenient!

Can you not tolerate vegetables, eggs, nuts, beans, and gluten free grains like rice or quinoa? Why just meat and fruit?

I'm guessing that the wording of the policy is mainly trying to prevent parents from being items that are at high risk for nut contamination, like granola bars and such. I could be wrong though.

If the school also has a shared kitchen with peanut and nut products, then I would take this rule to mean that the rule for dedicated facilities doesn't include one's home. I'm all for keeping kids safe, but it wouldn't be realistic to expect every family in the school to run a nut free house.

The mistakes that I made were mainly things like using scratched non-stick pans for regular food and then cleaning them and using them on gluten free food. Same with cast iron. I also didn't really know much about wooden spoons and I don't know that my wooden spoons were necessarily dedicated to gluten free food.

I already knew stuff like not double dipping condiments and the like.

After I learned what I was supposed to be doing, I did a kitchen purge and ran my cast iron pan through the self clean cycle of the oven to clean it and reseasoned it. I kicked the non stick pans out of my kitchen (or designated them for gluten food only) and bought new versions for my gluten free food, including replacing an old scratched up non-stick pot with a new stainless steel one. I bought a bunch of new dedicated gluten free utensils and a bunch of other new dedicated gluten-free stuff.

After really cracking down and getting strict on CC, I eventually let gluten back into my house so that my kids could do a gluten challenge. I started getting sick with headaches and some speech issues. I've removed the gluten from my house (other than one bag of pretzels that the kids can eat outside on the lawn) and now I'm not sick anymore. I don't think that it's a coincidence. I think that when my kids are done trialing gluten, I will remove all gluten from the house and whoever can still eat gluten can eat it at restaurants or friend's houses.

That would be really something if going gluten free caused adults to all of sudden start growing again!

That is so absurd. It sounds like a meal for the fad dieters. 

For a second there, Ruth, I thought you were going to tell us that you had gained a few inches! That you were taller (or wider) 

Just teasing you!

 

I am very happy for you. Give yourself some major props. You worked hard to sort all this out.

Yes, you got some assistance.....and now, you are helping others--- to pay it forward.

 

It's all good.  Cheers, hon !

LOL!!

I actually went gluten free in 2010, but I made a lot of newbie mistakes, due to lack of information and support. That's why I'm so happy to have this forum now, they've taught me how to be strict in my diet and given me the courage to advocate for myself.

Thanks to all of your support, I feel like I've made such strides and improvement! Thank you for the support and information.

In the past 7 months, I've corrected my CC mistakes in my kitchen, had symptoms resolve that I thought for sure I was stuck with for life, successfully started my kids on a gluten challenge (since July), and learned to advocate for myself. I've learned that it's perfectly okay to refuse all forms of gluten even if you don't have a note from your doctor. 

I now have a much easier time saying, "No thank you," to the CC'ed bag of gluten free pretzels or chips or in politely telling someone that I will bring my own food. I've learned that it really doesn't matter what anyone else thinks of my diet because they only see me in public, they don't see what health issues I might have to deal with.

So thank you, thank you, thank you! I feel like my life is so much better for the support I've received here and I will continue to hang around and support other people so that they can get the same benefits. 

Thank you. I don't think that I would have gone through with challenging my kids  without the support from this forum. The help and encouragement really means a lot to me!

Have you tried doing antibody testing anyway to see what your levels are? There is one member here who got a positive result on a blood test after 3 years gluten free!

As far as the gluten challenge, keep in mind that you have to eat a lot of gluten to complete a gluten challenge. (1-2 slices of bread per day for 8-12 weeks) If your symptoms are severe, then it may not be worth it. I was hospitalized with neurological complications on day 10 of my gluten challenge. Though I wonder if I have celiac, it's not worth risking a stroke to nail down a diagnosis. Therefore I'm firmly in the "can't get tested" camp. Keep in mind that my complications are RARE. Most people who gluten challenge will not have those problems. 

But for my kids, the benefits of getting a DX (or not, but either way knowing what was going on and getting out of limboland) were so overwhelming that I made the decision to gluten challenge them. They have been doing their gluten challenges since July and are doing okay. I'm pretty certain that they will have no trouble completing a full 12 weeks on gluten.

Only you can decide for sure what the risk/benefit ratio for you is, when it comes to gluten challenges. 

However, keep in mind that if you decide to continue gluten free and forgo a DX, you have to assume that you have celiac and treat it as such with a 100% strict gluten free diet. No cross contamination and no cheating. I know that celiac is a definite possibility for me and I really, really don't want to suffer the complications of untreated celiac, so I just live like I have confirmed celiac. Then if science ever advances and I get a confirmed DX, I don't have to live in regret for having a lax approach to my diet and worry about health complications.

My daughter does not have any other diagnosed AI diseases.

What I plan to do though is ask the doctor to order the bloodwork now but let me go get it at our convenience, after we've done a full 12 weeks of gluten trial. I want the best chance of an accurate result.

My daughter is almost 2 months into her gluten trial and her vitiligo seems to be getting somewhat worse. My appointment with the doctor is on Wednesday.

I plan to ask her to test for celiac and also to check for iron and B-12. Is that a good start?

That is a big deal! Congrats on finding a healthy safe place to eat!

With all your food restrictions, that is a big accomplishment! I know what it's like to have to deal with multiple food restrictions and it's always such a great feeling when you find a place that serves safe delicious food.

Scrambled eggs, sliced avocado and tomato, and zucchini potato patties with ketchup.

I love breakfast and can eat any type of food in the morning. Stir fry, salad, pizza or whatever depending on what mood I'm in.

Nonstick coating easily gets scratched and any scratches can harbor gluten.

I'm curious, when people say grain free, do they mean literally grain free, as in eliminating only grains or do they also eliminate seeds like quinoa, amaranth, and buckwheat?

Welcome to the forum!

Congrats on finding the source of your health problems, now you can focus on getting better!

As a severe anxiety sufferer myself, I'm pleased to report that my anxiety has improved greatly on a strict gluten free diet.

I have been known to take my personal dedicated gluten free waffle iron with me on road trips. I have this one: Open Original Shared Link

It's expensive, but well worth it because it's heavy duty, lightning fast and makes two at a time. 

Usually for road trips where we're going to be at a hotel, I pack some KIND granola and non-dairy milk  and have some hardboiled eggs and fruit from the hotel continental breakfast.