BlessedMommy

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. 

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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!

What kind of tortillas do you use for wraps?   I'm craving a good veggie wrap.

Celiacs can and do still eat at restaurants, though most choose not to go too often, to limit the risk.

I'm eat out on occasion. I don't eat at places like Taco Bell, though. I try to be selective as to where I go.

I prefer to go to places that have a better gluten free reputation and an established protocol for handling things. Some of my favorites are California Pizza Kitchen and PF Changs. I also like BD's Mongolian Grill. (they have a separate grill for allergies)

I will get a plain baked potato at Wendy's on occasion and request that they change gloves before handling.

I would suggest going back to eating a regular gluten containing diet now so that you can get the bloodwork done.

I am one who can never do a gluten challenge, due to the severity of my symptoms and I really wish that I would've gotten properly tested before cutting gluten to begin with.

It's very possible to eat a 100% gluten free diet without a DX, but I would never suggest it as a first resort. It's much better to get DX'ed while you still have the opportunity.

Great thread!

I'm a gluten-free vegetarian myself. Some of the products that I like are:

Beyond Meat Chicken Free Strips

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Gardein Ground "Beef" Crumbles

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Butler Soy Curls

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I started eating gluten free over 4 years ago, a couple of months before I turned 28. Though I've had a number of health issues in the past, overall I feel fine now. Actually I rarely go to doctors, period. No anemia, osteoperosis, diabetes, lupus, arthritis, etc. that I know of. I also don't have violent symptoms if I accidentally get some gluten. Maybe a headache or a skin rash at the most. 

Many people in this forum went undiagnosed for a number of years and developed debilitating permanent health problems. Those of us who were diagnosed at a younger age have the benefit of avoiding many of the pitfalls that years of undiagnosed celiac brings. 

It's not just a matter of dying earlier, it's also your quality of life in your later years. Staying gluten free could mean the difference between being disabled and in pain, versus being able to get out and be active and do the things that you want to do.

I agree with us needing natural sugars! I joined a Candida support board and I didn't feel like I fit in there, because the folks there tended to be militant about cutting even natural sugars like fruit or stuff like potatoes. They considered stuff like eating fruit to be "playing with fire."

Yes, we love fresh fruit and typically consume at least the recommended 2-4 servings, if not more.  We've eaten a lot of fresh berries and melons lately. Yum!

I found that once I cut out sugar, my cravings went way down. Now, lots of sugary things seem too sweet to me. I do use some sweeteners in moderation now and it's fairly easy to stop when I need to. I think that going without sugar for a period of time reprogrammed my taste buds.

I really don't get why some doctors put up such a fuss about testing. I'm sorry that you're having difficulty! 

If you can't convince your doctor to order it, it's possible to order the test yourself and pay out of pocket if you have to, but it's probably best to convince your doctor to order it. (especially if you have insurance)

I use the American Heart Association recommendations as my baseline. I try to keep my daily intake of all added sugars (honey, maple syrup, etc. count as added sugar) to around their recommendation--which works out to about 6-9 tsp per day. It's easy to get over that amount without thinking about it, so as a rule of thumb I try to avoid most things with sweeteners, unless it's something that I really enjoy. For example, spaghetti sauce doesn't need sugar, nor does seasonings, etc. I try to stick with buying unsweetened non-dairy milks, etc. 

So basically I save my daily allotment of sugar for certain condiments that I really like (such as vegenaise, stir fry sauces, etc.), granola, an occasional treat, etc.

Good to know, thanks! We vacation in Florida a lot.

This is one in the Chicago area that I haven't tried yet, but want to:

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I was wondering if there was any nationwide directory of restaurants that only serve gluten-free food? I was curious because I find them rather hard to find and it seems like there should be a few out there!

I got sick constantly, had back to back bouts of bronchitis, and was sick with various forms of allergies all the time. 

Cutting out sugar for a period of time really helped me a lot. My health is improved, my allergies are much better and I can enjoy the spring weather without feeling miserable all the time.

I now use some sweeteners very, very sparingly. I can usually tell when I've had too much.

If you're not sick and feel fine, though, you may not have to cut it out altogether. I think that low sugar is a good idea for everyone, but using no sweeteners of any kind is difficult.

I could be wrong, but I think that the OP is referring to this label:

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So, I'm looking to put together a travel kitchen kit. It would be super helpful for when we're out and about, or if we end up staying the night somewhere unexpectedly, etc.

I've already bought flexible cutting boards and a collapsible colander. What else would you recommend carrying with you? And what type of a box do you store it in? I would like something that could be locked up so that my kids wouldn't get into it.

That is bewildering that the doctor would state that the biopsy was negative, when your biopsy found evidence of celiac. If it were me, I would take that copy of the pathology report and take it to a doctor (a new one if need be), get that diagnosis and keep eating gluten free for life.

It seems like the "negative biopsy" could have been a communication error.

^Yeah, like making a cheese cake with a gluten-free graham cracker crust. Yum!

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