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My name is Sharon, and I just had some bloodwork and a colonoscopy and endoscopy done last month. My doctor has about 80% certainty that I have celiac, so he suggested I go gluten free for 6 months, and then do another biopsy.

I'm finding switching over to the gluten-free diet to be challenging, in the least. It's frustrating that gluten-free foods are so much more expensive. I do appreciate that some manufacturers list gluten-free foods on their websites--although I do have some doubts about whether Cheetos are really gluten-free as they say.

Hello, and sorry if I posted this in the wrong forum.

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I know what you mean about "challenging". It took me a while to figure it out too, and believe me I made a lot of mistakes (like spelt for instance, NOT gluten-free). I finally stopped buying processed food entirely for a while because it seemed like everything had some form of gluten in it! I quit eating out for a while too. Now I have worked a small amount of processed food back into my diet, and there are a few choice restaurants that i trust but most of my food is prepared in MY kitchen by ME. That's the only way I can be sure. And of course it takes time and effort to learn how to cook gluten-free (especially if you don't already know how to cook- I was lucky in that respect at least). But eventually you'll get used to it, really. In the meanwhile, I learned that corn chips, rice and potatoes are my starchy friends, I also learned not to over do the fruits and vegetables at first, your guts won't thank you.

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welcome! I hope the diet does help you. It can be hard at first, but catfish is right, once you get the hang of cooking, it really isn't that bad. (I really do seem to post this all the time... maybe I should change my signature to include it? ;-) ) Sticking with naturally gluten-free staples will help you keep it less expensive and easier. A LOT of recipes are NATURALLY gluten free. Rice, potatoes, corn, and yams are all good, common, inexpensive carbohydrate sources that can be used in a myriad of ways with a myriad of flavors (so you don't have to get bored of any particular one). All natural meats (no broth injected, or the like) are gluten-free as well, and of course there's a WIDE variety of types, and ways of cooking that can allow you to maximize small amounts of the cheaper cuts. Same thing with the produce aisle. (And the spice aisle. Spices can get expensive, but they last a long time, and make a HUGE difference in how things taste.)

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Sharon,

Upon diagnosis, I too ran to my local healthy food store and bought a bunch of processed gluten-free stuff I didn't think I could live without. Well, most of those are still in the cupboard because I just don't eat much of the specialty stuff. There are a lot more options in your regular store than you realize. (Yes, Cheetos are gluten-free, even though some don't eat them due to cross contamination issues I have never had a problem with them.)

I have found that the only thing I really can't find in a regular store is soy sauce (the jury is out on whether LaChoy is really gluten-free). I have purchased some cake, cookie, brownie mixes via mail order but requested that my commissary carry them AND THEY DO NOW! (I'm a Navy wife.) I did mail order some ready-made cookies, cinnamon bread and pizza crusts from Kathy's Creations and put them in the freezer. I'll eat a cookie every couple of days or so. I made my own mixes and put them in the freezer. That way if someone else is having sweets, I can too. I also bring them to work with me.

I also found that Publix carries some cereals that are gluten-free and SuperTarget has a couple of Bob's Red Mill items that are gluten-free (not all are, though - watch the label - it will say gluten-free).

I primarily eat meat, fresh veggies, potatos, rice, fruit. I have never had a problem with fruit that many have when first gluten-free. I love the stuff. We always try to make enough at supper to have leftovers for my lunch the next day. Eating out is not only difficult, it is very RISKY - always!

Pay attention to your body - it may be good for you to keep a food diary of EVERYTHING you eat for the first month or two because it's easier to figure out where you might slip up that way. Read all you can - there are other forums besides this one that are good, too. You can join as many as you have time to read! I regularly visit 3: delphi, yahoo sillyyaks and here. All have a different "specialty" or flavor and you'll quickly develop a favorite.

Good luck and hang in there.

Celeste

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Sharon, i was just recently diagnosed in July. I found out that in Canada there is an income tax form that gives you back the difference in cost. I keep all my receipts. Hope you live in a country that does this.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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