BlessedMommy

Maybe it's time to relax a bit and not try to think about cleaning out your kitchen until after your DX. Sounds like maybe you need to take time to process everything.

Keep in mind  that although CC seems scary, that cleaning out your kitchen and keeping gluten out of the house (or carefully segregated) is probably 50% or more of the battle with cross contamination. If your house is safe from gluten, that is the #1 thing right there.

Quinoa is a great food to have on hand and makes a good rice substitute. It is very high in protein and very nutritious.

Wait a second, so snicker bars are gluten-free? LOL!

Keep in mind, that celiac may run in your family, the people who have it might be just undiagnosed. That's why it may be worth running the genetic test to evaluate your risk if the other tests are inconclusive.

If you have a positive biopsy, it's quite possible that you have celiac.

Are there any clues other than the biopsy that your doctor could use? Have you had genetic tests done? When you got your blood tests, did they check your total IGA levels?

Have you been checked for any other medical conditions? The intestinal damage is concerning. No symptoms definitely doesn't always mean that you don't have a problem with gluten. I would not rule it out until there's further investigation.

I'm not allergic or intolerant to it, small amounts don't really bother me. (though I do prefer to avoid HFCS as completely as I can)

Like you, I just try to stick to a very low sugar diet overall (staying within the government recommendations of 6-9 tsp per day), because I feel so much better that way.

I'm sorry to hear about your cancer. My MIL has cancer and she does a very low sugar diet as well. 

Hi and welcome to the boards!

I'm sorry for the hassle that you're going through. It's entirely up to you as to whether to do a gluten challenge or not. 

If you do a gluten challenge, make sure that you don't overdo the gluten. Eat a mostly gluten free diet and then add something like one grilled cheese sandwich a day or so. I tried to go cold turkey to eating normal and had very serious complications and wound up in the hospital 10 days into my gluten challenge. I've been gluten free ever since that day.

Good luck with whatever you decide!

Gotcha. Brush, floss, rinse. Can do!

I think that I may have got glutened in this fashion recently and really not wanting to do it again. 

Have you given him literature on celiac yet? Some people are not trying to be difficult, but it's truly hard for them to understand celiac. If you end up getting married later on, you'll need him to understand and be fully on board with the way that you need to live for the rest of your life.

One possible option if you live with a gluten eater is to simply have a gluten free kitchen (or a 99% gluten free kitchen, I allow prepackaged gluten foods and similar things if they're carefully bagged up and segregated from my food) and to let the gluten eater eat gluten out of the house.

We do that and it seems to work great. My husband doesn't mind eating gluten-free at home to keep me safer. 

What is your spouse's oral hygiene routine to prevent glutening from kissing?

Well, first of all you DO have a severe reaction to gluten. It's just not one that can be measured by getting visibly sick. Villi damage can lead to cancer and other difficulties. And if you're celiac, then each and every time you get glutened, you're getting damaged, regardless of the amount of symptoms. Perhaps sharing literature with celiac on family would help them to understand that "no symptoms does not equal no problems."

2ndly, I would avoid having other people prepare your food as much as possible. If you have little time, there's casseroles that can be thrown together in 5 minutes. I can give you a recipe for my tater tot taco bake. It's delicious and fast to throw to together and you could use a disposable foil pan.

If you don't have time to cook, I would strongly suggest just buying some gluten free frozen entrees and heating them up in the microwave. It's a little pricey but it's better than getting glutened. That way you won't be setting a precedent for your host that they are allowed to cook for you, because it's hard to start one way and then switch later on.

It is very, very difficult to prepare gluten free food in a gluten filled kitchen. Most people can't do it without some education.

Also, you could do ready made stuff for breakfast. I like to bring Kind brand gluten free granola on road trips along with a shelf stable container of non-dairy milk. Along with fruit and eggs, it makes a good breakfast.

GL!

Hmmm...I didn't find a date where that rule went into effect. Have they yet to enforce it?

Just wondered because there's one product labeled gluten free and I'm fairly familiar with the company that produces it and I'd be shocked if they tested for gluten and it's definitely made on shared equipment. 

I'm glad that you will have more leverage to deal with the insurance company. It's just kind of ludicrous how many hoops you have to jump through nowadays to get tested for celiac. I remember getting a gastroenterologist back in the day to ask about celiac testing and they said, "Oh well we might not test you for celiac. We don't always do what the patient wants. We'll determine what's appropriate screening for you."

Sometimes it surprises me that ANYBODY gets a DX, with the way doctors and insurance drag their feet on it.

Best of luck to you!

I'm feeling much, much, much better!

Before, I was sick basically year around with debilitating sinus problems to the point where functioning through daily life was often difficult and now I enjoy lots of sunny days outdoors with the kids in the pollen filled spring air. I also cleaned up a dirty room the other day without sneezing which felt like a miracle because I'm allergic (or was allergic) to dust mites.

I don't know much about histamines in food, but I'd love to take a look at it, if you have a link to share. 

I hope that you feel better soon!

Okay, this is one thing that I still don't understand:

Apparently the government regulation for gluten free is under 20 PPM. I get that.

But, are there legal requirements for manufacturer's to test their products to under 20 PPM in order to slap a gluten free label on? Or can any manufacturer just claim that their product is gluten free even if it contains over 20 PPM or is untested?

And no, I don't think that I'm technically allergic to sugar, but it apparently suppressed my immune system.

About 7 months ago, after suffering through 2 bouts of bronchitis back to back, catching nearly every bug that went around, and having debilitating environmental allergies (year around) that were only getting worse year after year, and reading lots of material on the subject, I hesitatingly decided to go sugar free. (including honey, maple syrup, etc.)

Frankly, it sounded really difficult and unpleasant, but with my deteriorating health, I would've done anything. Surprisingly, giving up sugar was very easy. I soon ceased to crave it so much. Other things started to happen, my chronic sinus problems started to go away. I stopped catching colds every other week. I also took some candida cleansing herbs as well. It is the height of allergy season right now and I'm breathing much, much better. No days spent constantly sick from the pollen floating around.

I now use some sweeteners very, very sparingly. I find that I have no trouble knowing when to quit and it's very easy to limit them. I try to save added sugar for mostly minor ingredients in items that I want to keep around, like brown rice syrup in my vegan mayonnaise or a little honey in my gluten free muesli, etc.

Essentially going without sugar reprogrammed my taste buds so that desserts sound too sweet. I don't really keep much in the way of sweeteners in the house. I did buy some date "sugar" (it's actually just powdered dried dates) and I have a little bit of raw honey left, but I don't use that very often. Date paste also works well in things. I use lots of fresh fruits, my kids and I love raspberries, strawberries, blueberries, watermelon, etc.

My idea of a splurge these days is to secretly buy a package of organic raspberries and eat the whole thing in one sitting without sharing it! LOL!   

It was very easy to find gluten free cat food! They had a lot of it at the pet store.

So...it looks like a stray tomcat is adopting us and I went to the Petco store today and picked up a bag of Nature's Recipe dry cat food and some Wellness brand cat treats.

I also got some canned cat food that is 9 Lives brand and it has just stuff like meat, meat by products, guar gum, vitamins, etc. No grains.

So if we adopt this kitty, he will be on a gluten free diet too!

Okay, another thought that occurred to me about this study....

I know that a lot of folks on this forum take days to recover from one glutening. So, how does a few days on each day and then rapidly switching between a high gluten and a gluten free diet prove anything? In other words, participants could be still recovering from the prior glutenings, days into the gluten free diet. 

Yes, it's okay to wait. 

Congratulations on getting the positive bloodwork! Though it seems shocking now, it's a blessing to know what's really going on. You know, with your back story, it makes me wonder how many folks who think they are gluten sensitive are actually celiacs.

It's up to you, but if you have the insurance coverage and the opportunity to do the biopsy, it's a good idea.

It will confirm the diagnosis and let you know some information on how progressed the damage is.

So, mamaw, you find that the caterer typically has a good grasp of cooking without any cross contamination?

I'm so sorry. You have put so much effort into getting well and I know that it's frustrating when things don't work as planned. And it's so hard when going gluten free doesn't take care of your health issues. I know for me, I had additional issues besides gluten, and it's been a somewhat challenging road to wellness.

You have certainly done your part to get well! I don't see how you could be any more vigilant on your diet than you already are.

Do you think that your gluten issues caused the other intolerances?

Here's hoping for better health and a break through somewhere. 

I would wait until after biopsy to go gluten free. They may also refer you to a nutritionist.

Take a deep breath! You are just starting out. Everything is going to be okay. Take it one day at a time. You will learn how to manage things, it just takes time and practice. And this forum is a great support for that!