BlessedMommy

If I ever have a non-emergency hospitalization, I'm totally going to Bronson hospital in Kalamazoo, MI! When I was there with my son for his femur fracture, they presented us with a full gluten free menu, including gluten free bread and gluten free veggie burgers. They even had a gluten free quesadilla! I'm wondering if their accomodations have something to do with the fact that the area celiac support group meets in their building, because the other hospital in KZoo (Borgess) doesn't have hardly any gluten free stuff in comparison to them!

I'm wanting some ideas, because it seems that I often get into a rut and bring boring personal food for potlucks. When I say "food for potlucks," I mean personal food to eat while others are eating off a buffet. So if you have potlucks that you go to, what interesting things do you come up with to bring for yourself?

I have a 4 cup size glass dish with a snap down lip that is great for portable foods. So pretty much I can make something up at home, then pop it in the microwave at potluck location and sit and eat my safe food while I visit with people. 

I was thinking about getting a 2nd glass dish for carrying a salad and maybe bringing a packet of salad dressing. 

Anyway, so if you belong to a church that does potlucks regularly or have other buffet occasions, what stuff do you bring for yourself?

I have hope that in my lifetime they will come up with celiac tests that don't involve gluten consumption. You never know what possibilities could be out there.

I'm sorry that you still don't know what's going on. If all testing is negative or conclusive, there's always the option of trying the diet 100% for 6 months and seeing how your iron levels do and seeing what happens with any other symptoms that you have.

WOW without Wheat

1754 Central Park Dr, Okemos, MI 48864

I thought that it would be fun to have a thread with the weirdest places that we've spotted gluten.

I think that the winner for me would be when I found jelly with gluten in it. It had wheat glucose syrup.   Also, barley sweetened soymilk.

Yep, the baking version does contain flour. Sorry that you're sick and hope that you get on the mend quickly!

I also keep a box of shelf stable snacks in the car. Things like GoPicnic's, Larabars, packets of Planter's nuts, etc.

Yep, it's my understanding that it's best not to test for an allergy unless you've had a clear reaction to that particular food. The false positives can lead to lots of unnecessary dietary restriction.

We live in Tiny Town too, Cathy! We're in rural Michigan, so we don't have a lot of choices. We have to go to a bigger city area even to go to a Red Robin's.

I'm going to my SIL and BIL's, and I'm packing KIND granola, fresh fruit, hard boiled eggs, and assorted types of yogurt (dairy for others, non-dairy for me) for the road. For lunch, I got one of those preassembled veggie trays and a jar of shelf stable hummus. I also have Udi's bread for sandwiches.

I have a 4 cup glass container with a snap on lid that to put homemade soup in, to eat that night. (SIL has soup on the menu that night) I also bought precut sweet potatoes to pop in the oven for sweet potato fries. I let SIL know that I would be providing my own food this weekend so I went through the menu that she sent me and decided on a gluten free choice for myself to bring for each meal. For meals that are complex like lasagna and macaroni and cheese, I'm just going to buy the Amy's frozen versions of those and pop those in the microwave.

Can you shop around for a GI who can get you in earlier?

I agree, the avoidance of gluten could have contributed to the negative biopsy results.

There's actually no such thing as a gluten allergy, but sometimes people call celiac that to get across the need to avoid gluten. 

Do you have your bloodwork from 2 years ago handy?

Yep, I agree with the above. Get a new doctor that will listen to you. If that fails, self-pay for celiac tests at a private lab. It's worth it to know if you truly have celiac or not. Good luck!

Is there a medical test for lactose intolerance?

It looks like they ran a celiac panel and she came back strongly positive on one of the tests that is less specific to celiac. So, they didn't refer you for any follow up?

I'm sorry that you're dealing with these issues! It sounds like no fun at all!

Is gluten challenging your kids and getting full celiac panels for all of them an option, preferably with a doctor that will seriously explore that avenue? Being in dietary limbo land is no fun at all. My kids had serious eczema when they were little and I attempted to take them gluten free at that point. Now we're reintroducing gluten and surprisingly, gluten really isn't causing any noticeable skin issues.

Your kids issues sound serious, particularly the broken bones.  Have you ruled out genetic disorders and other diseases that may have caused the broken bones?

Your Ttg was sky high! You definitely should get levels rechecked as time goes on.

Brown rice is significantly higher in arsenic than white rice, as the arsenic tends to settle in the outer hull. I picked white basmati rice from India as our rice to stock up on, as I read that had one of the lowest arsenic levels. 

Open Original Shared Link

Here's a chart with levels of arsenic in various rice products.

Open Original Shared Link

We still eat rice, but I eat a lot more white rice than I used to and try to somewhat limit the brown rice. I buy white basmati rice from India. We eat some brown rice, especially if I can find Lundberg rice at the Amish discount store.

Rinsing rice is a good idea because it helps lower the arsenic content as well. 

Lundberg Farms rice is completely safe. (processed in a dedicated gluten free facility) According to my wholesale/retail outlet, you can get a 25 lb bag of it for around $31. Do you have a source where you can order stuff like this?

Do you know of a family in need who could use the rice that you have? Maybe you could donate it.

I agree! Definitely very strong positives on several of the tests.

Ditto to the above. Have you tested for celiac and ruled it out? It's possible to have celiac and not have visible outward symptoms when cross contaminated with gluten.

Serving everything sounds like a good plan!

Hang in there! Remember any ill person can start a strict gluten free diet with no permission from anyone. I'm working to get to the point where I don't care about what people think anymore. I still struggle with it sometimes, but I'm getting better at advocating for my need to bring my own food and avoid CC. 

If you've exhausted all testing means and are still ill with no explanation, then just treat yourself like a celiac and do a 100% strict gluten free diet  for 6 months. If it helps, then you have your answer. It's not always easy to do a strict gluten free diet, especially if you don't have a firm DX, but if you know gluten makes you sick, it sure beats the alternative!