BlessedMommy

I think that it all depends on the circumstances.

One possible drawback with a biopsy is that sometimes you can get positive bloodwork and a negative biopsy even with someone who is really celiac. (the biopsy can miss the damage) Then sometimes the doctor will send the patient on their gluten eating way based on the negative biopsy.

Irish, my oldest daughter had brown spots on the back of her front teeth from an early age. I wonder if that piece of info would be enough to convince the doctor to test her for celiac.

Thanks, good to know since we go to NC sometimes to visit family!

I agree that it's wise to get a physical check up to rule out other health issues. I'm sorry that you're feeling so bad!

Right, the main people that need to understand are close family members and friends whom we interact with on a regular or semi-regular basis. Even with them, it's hard for me to discuss it sometimes.

I absolutely agree that my medical history is none of the waiter/waitress's business. I usually say that I have a severe gluten intolerance or a wheat allergy or something to that effect when dining out and ask that they be careful when prepping my order.

My approach to communion for the last few years has been simply to skip the bread and drink the grape juice. I'm considering finding an option for bread though. If you go to a church that practices communion, what do you do? Homemade, commercial, or go without?

Any recommendations on recipes or products?

I went gluten free over 4 years ago. In that amount of time, I've only had a handful of noticeable glutenings and most of them were skin related (skin flaming or start of itchy rash) Though I've tried to be quite careful with my diet, I didn't have much guidance and so I made some gluten free mistakes. (not crouton picking or contaminated condiments, but stuff more along the lines of washing a cast iron pan and using it on gluten-free food)

Part of my pre-gluten-free symptoms were headaches and neurological problems. Recently, I had a headache and a low grade fever for a whole day after kissing hubby before I remembered that he had a pizza dinner and hadn't yet brushed his teeth. The headache and fever then abruptly went away and that was that.

Today, I am feeling achy and my head was feeling a bit off and sure enough I'm running another low grade fever. They only thing that I can think of is that I grabbed some gum out of a bag that probably previous had gluten eaters grabbing from it.

Am I imagining things or are those really glutenings?  Is it possible to become more sensitive over time? If they really are glutenings, then I would be scared, very very scared to see what happened if I accidentally got a full dose of gluten. I don't think that I've ever gotten a full dose of gluten since going gluten-free, but one time I came awfully close, when someone mislabled couscous as quinoa. 

Any personal experiences?

A good cheese substitute is Daiya cheese. It is gluten free, dairy free, and soy free and melts great.

Vegetarian Pecan Loaf

1 cup pecan meal
1 can mushroom soup
1 cup grated cheese or cheese substitute
3 eggs
4 c. rice krispies
1 medium onion, chopped
½ tsp basil
¼ cup oil

Sauce:
¼ cup BBQ sauce
¼ cup ketchup
½ cup brown sugar

Preheat oven to 350 degrees. Mix everything well. Bake for ½ hour covered with foil. Add the sauce and bake for ½ hour uncovered. Delicious! 

Vegetarian Cabbage Rolls

1 large head green cabbage (about 2 pounds)
1 tablespoon vegetable oil
1 medium onion, chopped (1/2 cup)
1 medium zucchini, diced (1 cup)
1 cup cooked white rice
1/2 teaspoon salt
1/4 teaspoon pepper
1 teaspoon dried basil leaves
1/2 teaspoon caraway seed
1 bottle (12 ounces) chili sauce
1 cup shredded Cheddar cheese (4 ounces)
1/4 cup dry white wine or vegetable broth


Directions
1) Heat oven to 350°. Spray rectangular baking dish, 11x7x1 1/2 inches, with cooking spray. Remove 8 leaves of cabbage while holding head under running water. Cover leaves with boiling water. Cover and let stand about 10 minutes or until leaves are limp; drain.
2) Heat oil in 3-quart saucepan over medium heat. Cook onion and zucchini in oil about 3 minutes, stirring occasionally, until crisp-tender. Stir in rice, salt, pepper, basil, caraway seed, half of the chili sauce and 2/3 cup of the cheese.
3) Place about 1/4 cup rice mixture at stem end of each leaf. Roll leaf around rice mixture, tucking in sides. Place seam side down in dish. Sprinkle wine over cabbage rolls.
4) Cover and bake 30 minutes. Spoon remaining chili sauce over rolls. Sprinkle with remaining 1/3 cup cheese. Bake uncovered about 5 minutes or until cheese is melted.

Yeah, it was a pretty freaky experience. After that, we decided, no more gluten. It really didn't matter what any tests said anyway, I wasn't going to start eating it again.

I won't do a gluten challenge to satisfy anybody's diagnostic requirements. No way, no how.

It sounds like in the future, celiac testing could be done without eating it at all, through an in vitro gliadin challenge. I hope that becomes mainstream soon!

I've survived without even having positive blood tests. (Not for lack of trying, though, the gluten challenge that I tried to do to get the blood tests landed me in the hospital!)

I would agree that there is really no point in going back on gluten to get a biopsy. You've already been diagnosed. 

I'm sorry that you're feeling so sick!

Can you tolerate chia seed? That is a great source of Omega 3's. 

^Being celiac and vegetarian is totally doable. I'm vegetarian and still find that I have a ton of gluten free food options.

^Those were my thoughts as well. If you live in Ontario, it may be worth your while to cross the border over to Michigan, New York, Wisconsin, or Minnesota. (depending on whichever one of those is closest to the part of Ontario you live in) 

Can you have nuts?

I'm a gluten free, dairy free vegetarian myself. I find my diet to be relatively easy, however I don't have the additional intolerances that were mentioned.

That is awful!

OP, I guess that your best shot is simply be firm with the doctor and insist that it is worth it for you to order out of pocket. And if that doesn't work, shop around for a doctor who will help you.

That is very frustrating! Does Ontario have the option of private "direct to consumer" labs where you can order yourself and pay OOP without permission from your doctor? I know that some folks in the states have had good luck with that option if their doctor or insurance company refused to cooperate.

A new thread sounds good! I would like to hear if anyone has tried Canyon Bakehouse rye style bread and what they think of it.

NCGI/not categorized gluten-free people, let's talk about ambiguity and the issues that stem from it!   What are you doing to help yourself feel comfortable with the need to advocate for yourself, despite your lack of definite celiac DX?

I had a great talk with my MIL today. I explained to her that due to the severity of my response to the gluten trial and therefore the inability to finish celiac testing, that's it's extremely important to me to treat this like celiac and be just as careful as if I had a definite doctor's note. I told her about some of the things that I had recently learned about how to do gluten-free correctly (when I first went gluten-free, I didn't have a lot of guidance) and she was so receptive to it all and understood!

It was such a relief to me to be honest about my needs. A lot of times I shrink from being direct with people about my expectations for fear of being mocked for being too OCD. I'm realizing that I'm starting to work into the groove of being more uncomfortable with my uncertain status and realizing that yes, it is okay to ask for celiac accomodations and be direct with people. 

So, share your experiences. How are you learning to advocate for yourself and be comfortable with your status?

Sounds like a great plan!

I'm glad that you are relaxing a little bit. You got this, you can do it!

Congratulations on getting an answer finally! I'm sorry that your insurance company was so ridiculous about it. I have no doubt that that is one reason for the low diagnosis rates of celiac.

Here's a guide that may be helpful for you in cleaning out your kitchen. 

Open Original Shared Link

I don't think that I've ever consumed a full dose of gluten accidentally since I went gluten-free in 2010. I have noticed what I considered to be a changing reaction recently. Usually my sign of accidental gluten is skin related, flaming face, or start of rash on my neck. However, recently when I kissed my husband when he hadn't brushed his teeth after eating a whole dinner full of pizza, the next day I had a low grade fever and a headache the whole day.

Considering that daily headaches were my portion a few days into my gluten trial, I wonder if my body has become more sensitive and will now generate headaches due to smaller amounts of gluten. 

Chances are very high that it was a false negative if you were gluten light during testing.

Hang in there, maybe the endoscopy will give you some more answers.

You could make your own. We bought a tortilla press awhile back and have made lots of homemade ones and it's super easy!

I remember finding KIND bars in a gas station! Yum!