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SharonF

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SharonF Contributor

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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catfish Apprentice

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.

tarnalberry Community Regular

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.)

crc0622 Apprentice

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

CoolCat1 Rookie

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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    • Scott Adams
      Canker sores can definitely be frustrating, especially when you're already managing a strict gluten-free lifestyle and have been diagnosed with celiac disease for so long. While these painful mouth ulcers aren’t exclusive to celiac disease, they can be linked to nutritional deficiencies—particularly of iron, folate, or vitamin B12 (as @trents mentioned )—which are common in people with celiac, even those who are very careful with their diet. Ongoing fatigue and aches might also suggest that your body isn’t fully absorbing nutrients or that there’s some underlying inflammation. It could be helpful to get bloodwork done to check for these deficiencies, and possibly even a full nutritional panel. Sometimes, new sensitivities or hidden sources of gluten or additives like sodium lauryl sulfate (common in toothpaste) can trigger symptoms like canker sores too. Since your reactions are so severe and you're highly vigilant, it might also be worth considering whether any other autoimmune conditions could be involved, as they can develop over time and overlap with celiac. Consulting with your doctor or a celiac-informed dietitian may help pinpoint the cause and bring relief.
    • knitty kitty
      @Dora77, You shouldn't worry about getting glutened through your skin.  You would have to touch a gluten infested doorknob and then put your hand in your mouth.   I'd be more concerned with your mom's heating up gluten bread in the oven and boiling gluten noodles.  These methods cause particles of gluten to become airborne which would then enter your nose and be swallowed, going into your digestive tract.  I have to avoid the bakery aisle at the grocery store for this reason.  An M95 mask helps. If you get nutritional deficiencies corrected, your immune system will calm down and be less reactive to gluten expose.  Vitamin D helps regulate the immune system.  Thiamine and Niacin help make digestive enzymes which would help digest any accidental gluten exposure.  Thiamine helps Mast cells not to release histamine, an inflammatory agent released as part of the reaction to gluten, and also a neurotransmitter that causes alertness and anxiety, and the flight or fight response.  Pyridoxine will help improve the OCD.  Remember your brain is part of the body.  Vitamin deficiencies affect your brain and mental health as well as the rest of your body.  
    • Jacki Espo
      I do not have evidence other than anecdotal but I am certain when I have gotten these it's the result of eating gluten (back when I did).  I don't get them now that I don't eat gluten. 
    • Dora77
      What really bothers me is if worrying about getting cc‘d from touching the same door knob as others touched is valid. Seems like an extremely unlikely way to get glutened but i read people saying that.    If thats true then theres realistically zero chance i dont get cc‘d in a non gluten-free household unless i Cook Everything myself and wash my hands multiple times in between and store all of my stuff separately
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