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CJONES

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CJONES Newbie

I recently found out that I have celiac disease and have hard time getting this under control. I stayed sick for almost three years and had test after test after test done, had my gallbladder removed and then more and more test to finally find out about a 3 months ago that I have celiac disease. But even since I found out about it I have been getting sick about 2 times a week and missing work and I'm not sure how much more of that I can take.  I called the smokeless tobacco company that I use their products and they insured me that the dip was gluten free. I have been drinking soft drinks that are suppose to be gluten free but still continue to get sick. I have for the past two weeks only eaten things that say gluten free on them but still have gotten sick. Does anyone on here have any suggestions as to what I can try next? I have read places that you should even buy new pots and pans and not cook in the same pots that your family cooks in. I'm just ready to get to the bottom of this and stop being sick all the time.


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ravenwoodglass Mentor

Welcome. There is a bit more to the gluten free lifestyle than just the food. There is a lot of good info in the Newbie 101 thread at the top of this section. You will need a new toaster, strainers, can't share stuff like jellies or other condiments with gluten eaters and more. Most will be convered in the Newbie 101 thread.

It will be helpful with healing to go with as much unprocessed food as possible. Fresh meats, fresh or single ingreident veggies and fruits etc. It can help to avoid dairy for a bit until you are feeling better as many of us have a hard time digesting it till healed.

I hope you are feeling better soon.

tessa25 Rising Star

If I were you I would stick to meat, veggies, potatoes, eggs, water for a few weeks to see if that helps things settle down. Then slowly add on a new thing every few days to see what causes issues.

TexasJen Collaborator

There is a lot of hidden wheat/gluten everywhere. Anything that goes on your lips or in your mouth should be gluten free. So, in addition to the above advice, look at the following: restaurants, your home, lipsticks, makeup etc

1. Restaurants - this is a place where a lot of ppl consume gluten unknowingly. I would suggest not eating in any restaurants until you start feeling better. Once you are sure that your home diet is gluten-free, you can try picking a trusted restaurant or 2. Somewhere that is completely gluten free or somewhere where you can talk to the chef and make sure it is gluten-free. Although I seriously wonder how a restaurant that serves bread, desserts or pasta can really ensure a gluten-free meal

2. Home- if you live with other people that consume gluten in the house, you really have to be careful about cross contamination. You need a system in your own house that works with your family/friends to avoid getting sick. Avoid regular oats (they need to be certified gluten-free)

3. Check online for gluten-free makeup, lip gloss etc. If you don't get an easy answer from a google search, call the company and ask

Remember, even a crumb can cause a reaction for celiacs and it can take 1-2 years to really feel well - although most GI symptoms should start to get better in a couple of months.

Rhotitar Apprentice

I will add that unless you know the company behind the product, and they are taking precautions from it being cross-contaminated with gluten you should always choose products with a certified gluten-free logo on a them. Even sticking with whole foods isn't safe either. Frequently cross-contaminated foods almost always include oats, corn, soy, and even green peas and beans. In fact I was recently exposed to gluten via beans, so I had to purchase beans via internet from a company located outside my state that does laboratory testing to ensure gluten contamination below 5ppm. They are pricy but I had no other choice if I wanted to eat beans well at least they are organic and I have peace of mind. I eat oats now too from Bob's Mill which is where I eat all my grains from before that anytime I tried quinoa from other companies I would have gluten symptoms even though they all said it's naturally gluten free.

As a rule I never eat any soy products unless I have a guarantee that it's sourced without cross-contamination and never eat any corn processed products unless it's certified gluten-free because almost always it's going to be contaminated.

About the carbonated drinks I wouldn't be too sure those things are gluten free. I have read online that in America caramel color is made using corn; however, on one occasion I had several chocolate candies with caramel color as an ingredient on them and they made me sick. So well I don't know how you would take that. Who knows maybe they just used wheat on a certain occasion for their caramel color. 

  • 4 weeks later...
lucky97 Explorer

Eat NOTHING that isn't labeled gluten free...or you can't at least cross-reference from two very good sources that it's ok to have.  I used this forum TONS at the start.  You can probably look back at my posts...lol.

And yes, "eat the perimeter" of your grocery store to start, especially if your intestines are on the mend.  And they will, it takes time.  I was very, very sick and was almost diagnosed with liver auto-immune disorder.  It takes months of eating simple and clean, like super clean, but it will pass and you can start adding other gluten-free stuff back in later (like gluten free processed stuff, though it's not ever great for you).  

I was diagnosed when I was older, so it was a big, big change at first.  It was like learning to drive.  Intense at first, but second nature now.  But, like driving, you can't fall off or become careless with celiac and being diligently gluten free.  It's easier to do now than when even I started.  You will get the hang of it and will get better.

Peace.

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      I know it's after the holidays, but it would still be fun to do a cookie recipe exchange on this forum.
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      I did talk to the nurse and she asked who told me no red meat.  I explained the person who called with the results of my blood work.  That was last week.  She told me the doctor was on vacation and would be back this week and she would talk to him and have someone call me this week.  I have not received a call yet.  I will call them back Monday as a reminder.
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      I shop a fair bit with Azure Standard. I bought Teff flour there and like it. they have a lot of items on your list but probably no soy flour, at least not by that name. https://www.azurestandard.com/shop/product/food/flour/teff/brown/teff-flour-brown-unifine-gluten-free/11211?package=FL294 As mentioned in another answer, Palouse is a high quality brand for dry beans, peas and other stuff. I buy some foods on your list from Rani. I've been happy with their products. https://ranibrand.com/ Azure and Rani often use terms that skirt around explicit "gluten free". I've contacted both of them and gained some comfort but it's always hard to be certain. FWIW, my IgA antibody levels are very low now, (after including their foods in my diet) so it appears I am being successful at avoiding gluten. 
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