Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Just Found Out That I Have Celiac Disease


chsteele

Recommended Posts

chsteele Newbie

I just came home from the doctor after finding out that all the health problems i have been having over the past year has turned out to be

Celiac Disease and I have to have a Gluten free diet. I was handed a magazine called Living Without and after browsing through it and reading online for a little while about this condition and what it entails -- I am very overwhelmed! I live in a very small town and there is nothing but the basics in this small town and am thinking I am going to have to start buying my food online. I would have a three hour drive to get to the largest city to find a specialty store that carries the products I need. I have been looking online at some stores and the prices for bread, pasta is like almost $5.00 for a box of pasta or a loaf of bread without shipping. Are there some people out there from small towns that are in the same situation that could guide me to some spots that you have found online that have reasonable prices etc? Thanks so much!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



nmlove Contributor

Hey there, welcome! We were in your place a few months ago. The best thing you can do initially, in my opinion, is to stick to meat, fruits, vegetables, safe grains (rice, quinoa). Eat off that while you clean out and take stock of your fridge and pantry. Our pantry looked so bare when I did this but now it's overflowing. :) Once you get cleaned up, figure out what you really need to replace. For us initially, I had to have cereal for my boys, pancakes and pizza. From there I tried more recipes and that's where we're at.

To handle costs , stick to the basics at first. You'll initially spend more but it should start evening out. Especially if you're used to eating out, even once a week. I'm lucky because I live 30 minutes away from two "health food" stores. But in a pinch, both my local Kroger and Meijer are continuously stocking more and more gluten-free items. I use Amazon for a handful of stuff. If you find an item and it has a subscription you can save quite a bit. Even with the stores I have to order some stuff online where I can't get a break but I signed up for updates and if I see a sale, I'll be stocking up!

Personally, I'm trying to not be reliant on gluten-free items so we're eating less pasta, desserts are a special treat, etc. One reason is that I want to teach my children that regular old food is gluten-free and healthy for them. I'm eating so much healthier myself! Also, they're still young. I'm looking ahead into the future and I don't want to be spending $10 on pasta just to feed them. I remember how I ate as a teenager and they're boys! Now, I'm trying to cut more on the grocery bill by looking at sales and stocking up.

Oh, also, maybe being in a rural area - not sure where you're from - there might be farmers or whatnot that you can find meat cheaper. Or even fresh fruits/veggies in the summer. That's one other thing we'll be doing this year. Joining a CSA. You pay so much at the beginning of the year but then you get fresh fruits/veggies throughout the growing season. Of course you don't get a say in what you get. You're subjected to what the year gives, just the like the farmer. So it'll call for some creativity I'm sure!

Good luck!

Lisa Mentor

I just came home from the doctor after finding out that all the health problems i have been having over the past year has turned out to be

Celiac Disease and I have to have a Gluten free diet. I was handed a magazine called Living Without and after browsing through it and reading online for a little while about this condition and what it entails -- I am very overwhelmed! I live in a very small town and there is nothing but the basics in this small town and am thinking I am going to have to start buying my food online. I would have a three hour drive to get to the largest city to find a specialty store that carries the products I need. I have been looking online at some stores and the prices for bread, pasta is like almost $5.00 for a box of pasta or a loaf of bread without shipping. Are there some people out there from small towns that are in the same situation that could guide me to some spots that you have found online that have reasonable prices etc? Thanks so much!

Hello and welcome! You have found a great place to learn

Start simple. Don't buy gluten free foods right now, you won't like them. And take a deep breath.

By starting simple, I mean, eat naturally. Meat, fish, rice, potatoes, fresh veggies and fruit.

Cecelia's Gluten Free Grocery Shopping Guide, or Triumph Dining Grocery Guild will help you through your first years, when shopping for main stream gluten free products that you can find at any grocery store. After a year, you will be able to read labels successfully and need not depend on lists.

Our recipe section here can give you some great suggestions.

And read, read, read here. :)

Ahorsesoul Enthusiast

I think the first actual "gluten free" food I purchased was a rice pizza crust online. But it was about 3 years after I had gone gluten free. I just ate regular food from the grocery store before that purchase.

You may need to cut out dairy and soy for a few months while you intestines heal. Once I did this for awhile I was able to add them back without any problems.

For right now just start learning where all the gluten is hiding,adjust your kitchen to gluten free cooking and learn about cross contamination. The extras can come later.

mamaw Community Regular

Welcome

There are many who are in the same boat as you! No place to shop & never a place for one stop shopping for gluten-free foods.

(Company Name Removed - They Spammed This Forum and are Banned) has good pricing plus free shipping on many items....I also like to shop at The Gluten Free Trading Company.... via online ordering.

gluten-free Foods cost about three times more than gluten foods but for a healthy happy life we celiac understand we must be strict & forever true to the gluten-free lifestyle.

As others have stated if you stick to the basics it cost no more than regular food. It's the goodie part that gets pricey ie: cookies, cakes & speciality items that we all really need but love to eat!

blessings

mamaw

sandsurfgirl Collaborator

I got my diagnosis today too! I have been crying off and on all day long. I've been sick all my life and now I have explanations for all the things doctors were confused about for the last 4o years.

I live in a city with healthfood stores, etc. nearby so I have no advice on that, but I just thought I'd say hello and let you know you're not alone. I am very overwhelmed myself and still quite sick from the latest attack that landed me in the ER, but thankfully led to my diagnosis.

I have done wheat alternatives for a long time because I was misdiagnosed with wheat intolerance, and was told I could eat all the gluten I wanted, but just to go moderate on my wheat consumption. You can make your own flour in a food processor out of brown rice or whole oats and use those for recipes. At least you can make some pancakes out of that.

I would focus on finding a good bread so you can have a sandwich here and there for convenience. I tried Udi's and it was really good. Way too expensive for a small loaf but I just won't eat it all the time. Maybe also a rice pasta. I wouldn't go nuts with crackers and baked goods and all that right now.

Good luck to both of us! I'm sure in a few months we'll be like the rest of the experienced people on here. We'll have our diets under control and be so happy that we aren't suffering anymore.

sandsurfgirl Collaborator

I got my diagnosis today too! I have been crying off and on all day long. I've been sick all my life and now I have explanations for all the things doctors were confused about for the last 4o years.

I live in a city with healthfood stores, etc. nearby so I have no advice on that, but I just thought I'd say hello and let you know you're not alone. I am very overwhelmed myself and still quite sick from the latest attack that landed me in the ER, but thankfully led to my diagnosis.

I have done wheat alternatives for a long time because I was misdiagnosed with wheat intolerance, and was told I could eat all the gluten I wanted, but just to go moderate on my wheat consumption. You can make your own flour in a food processor out of brown rice or whole oats and use those for recipes. At least you can make some pancakes out of that.

I would focus on finding a good bread so you can have a sandwich here and there for convenience. I tried Udi's and it was really good. Way too expensive for a small loaf but I just won't eat it all the time. Maybe also a rice pasta. I wouldn't go nuts with crackers and baked goods and all that right now.

Good luck to both of us! I'm sure in a few months we'll be like the rest of the experienced people on here. We'll have our diets under control and be so happy that we aren't suffering anymore.

Those that are more experienced please feel free to correct anything I've said if it's not a good idea. I don't want to steer another newbie the wrong direction, or myself for that matter.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Ahorsesoul Enthusiast

There are many who are in the same boat as you! No place to shop & never a place for one stop shopping for gluten-free foods.

(Company Name Removed - They Spammed This Forum and are Banned) has good pricing

Can someone pm the name of the company so I know not to suggest them, or just half the name. lol We really need a thread to list this type of thing. Is there one?

Takala Enthusiast

Mail order source hint:

Piranhas live in this river, which has its headwaters in the Andes and is the biggest river in Brazil.

Fiddle-Faddle Community Regular

Life is much easier with A-M-A-Z-O-N dot com!

I buy gluten-free pasta from them in bulk--both Tinkyada and Mrs. Leepers brands are very good, and not much more expensive than "regular" pasta.

I buy gluten-free flour blend there, too, also in bulk. I get betterbatter brand, which is pretty much cup-for-cup substitutable for regular flour. www.betterbatter.org has a fabulous website, with EXCELLENT recipes, and explanations for how to sub their flour for things like breads, which require additional liquid. A dot com sells 9-5 pound boxes for less than what you'd pay for the same amount on betterbatter.org. They also sell Tom Sawyer brand gluten-free flour blend, which is also very good.

You might start by ordering one box to see if you like baking with it. I make everything--bread, pizza, cookies, cakes, muffins, pancakes-- from scratch, and it can be time-consuming, but once you get organized, it really doesn't take that much longer than any other food prep, and the results are SO worth it. In fact, I was surprised how much LESS time it takes than I thought it would.

If you have kids--enlist them to help! They'll love it, and it's probably a good idea to at least get them gluten-lite, since they are at higher risk of developing celiac or gluten intolerance and all the nasty autoimmune disorders that go with them.

Making my kids gluten-lite made us discover that they had MAJOR problems with gluten. We had had no idea that gluten was causing my son's severe eczema, or intermittent diarrhea, constipation, and severe stomach aches for all the kids.

But for now, you probably want to AVOID gluten-free breads, cookies, cakes, etc., until your intestines heal, as they are a bit tough on gluten-damaged tummies--it will feel like you've swallowed a brick, unless your tummy is healed from the gluten damage.Most celiacs also need to avoid dairy during this time, though few doctors seem to know this. The protein in dairy can prevent the intestines from healing, even though it was gluten that caused the damage.

Luckily, there are some excellent milk substitutes available these days. Avoid Rice Dream--although labeled as gluten-free, it is processed with barley (gluten!!!), and most here have had bad reactions to it. Almond Dream is safe, as are other rice and nut milks, and soy milk is safe as long as you are not sensitive to soy. I think they all taste good, and I don't even have a problem with dairy. Coconut milk is now available in the fridge section, and is my absolute favorite. (It makes amazing hot chocolate

If you desperately need to snack (I know, I did!), Fritos are safe, as are Ghirardelli dark chocolate chips--and both are available at Sam's Club and Costco! (I really like the bulk thing...and can you tell I like chocolate?)

If you like things breaded, like chicken fingers, you can make them EASILY--just use corn meal or potato flakes for the breading. Season them with garlic, herbs, paprika,Old Bay Seasoning, Parmesan--whatever you like! I recently went to a place in Cape Cod that has been using ONLY corn meal in their breading for decades, not because it was gluten-free, but because their customers liked it that way.

I Hope this helps--welcome aboard!

nmlove Contributor

Mail order source hint:

Piranhas live in this river, which has its headwaters in the Andes and is the biggest river in Brazil.

Whoops, guess I goofed on that one, sorry!

Ahorsesoul Enthusiast

Mail order source hint:Piranhas live in this river, which has its headwaters in the Andes and is the biggest river in Brazil.

Thanks. Very fitting for all their spamming.

putman Newbie

Hey there, sorry about your diagnosis, but you know what? its really not bad at all. Once you eliminate whats making you sick you will feel like you have your life back. I want everyone to know that if you stop eating gluten and your symptoms DO NOT disappear rapidly... as was the case for me, please, please pickup the book "Life Without Bread" your answers lie in that book.

I had the genetic test done and sure enough had all the genetic markers for Celiacs and had all the wretched symptoms associated with it. Going Gluten-free DID NOT help me! What did help me was applying the theory from "Life Without Bread" by Wolfgang Lutz and Christian Allen. Its truly a life saver, and is clinically proven to work. Google it!

Jennifer2 Explorer

Amazon has some pretty good deals.

As far as bread, IMO there is no comparison to Udi's, unfortunately you have to order from them-some whole foods also carry it, but mainly in the west.

You might be surprized what your local store carries. I also live in a small town and my store does carry a few basic gluten free items. Basically some pasta and flour mixes, and a loaf or 2 of bread, not many to choose from, but they have it. It took me a while to find it though. The gluten-free pasta is not with the rest of the pasta. Ironically it's in with the organic, whole wheat, Kashi type of foods. Ask your grocer to make sure.

Actually, the only specialty items I keep in my house are bread, pasta, and flour. I'm also about an hour away from whole foods. I try to go down about once a month or so to stock up on breads, pizza crusts etc and just buy a bunch and freeze them. In a way, I'm actually glad that it's a trip to get that stuff. I find I eat healthier without all of the gluten-free convenience foods.

mysecretcurse Contributor

You dont need any special products or "replacement" foods. Just stick to whole, unprocessed foods you make yourself. Meats, veggies, fruits, rice, good oils, avacado, nuts. Etc.

sunnybabi1986 Contributor

It's really tough at first because everything seems to be off limits, but as time goes on, you'll figure it out and be able to go down the "regular" aisles at the store and buy so many items that are less expensive. Anything made by KRAFT will clearly disclose any gluten in the product, just read the ingredient labels. Kraft makes so many things, it makes it so much easier to eat less expensive foods gluten free. Planters nuts are made by Kraft, Oscar Meyer is made by Kraft, Miracle Whip is made by Kraft, and the list goes on. Just read the labels and they will clearly tell you if there is any wheat/barley/rye.

As far as specific gluten free foods, I order off Amazon, as the price often ends up being 50% less than that of my local grocery stores. If you use subscribe and save, where you receive the items at intervels(you can ALWAYS cancel or change your plan) you save so much more. Here are a few of my favorites on Amazon:

-Ancient Harvest Quinoa Veggie Curls, 8-Ounce Boxes (Pack of 12)-

Ancient Harvest Quinoa Pasta, comes to $2.35/box, not too bad for gluten free!

-Pamela's Products Wheat-Free & Gluten-Free Bread Mix, 19-Ounce Packages (Pack of 6)-

I love Udi's bread, but it comes to $6.67/loaf when I order it online. Yikes! This is my second favorite, I love it! Comes to $3.76/loaf, but the loaves are large enough, I freeze half...pretty good deal!

-Pamela's Ultimate Baking and Pancake Mix, 64-Ounce Bags (Pack of 3)-

I use this baking mix for banana bread, pumpkin bread, fried chicken, blueberry muffins, and pretty much everything!!

-The Gluten-Free Pantry Chocolate Truffle Brownie Mix, 16-Ounce Boxes (Pack of 6)-

These are my favorite brownies ever!! They come to $3.13/box with subscribe and save and are totally worth it when you need chocolate.

-Glutino Gluten Free Pretzel, 14.1-Ounce Bags (Pack of 12)-

These pretzels are kind of pricey, but holy cow, they taste IDENTICAL to wheat pretzels! Nobody in my family can tell the difference, they are so good! They're $5.21/bag after subscribe and save.

-Lundberg Garlic Primavera Risotto, 5.5-Ounce Units (Pack of 12)-

-Lundberg Creamy Parmesan Risotto, 5.5-Ounce Units (Pack of 12)-

Lundberg makes the most delicious rice products, these risotto boxed dishes are my favorites, they come up to $2.10/box, super good price!

Hope this helps a bit! I know how panicked I felt at first, until I realized I could buy in bulk. It's a pretty big expense up front to buy everything, but a case of these things on Amazon will last you quite awhile!

Let us know how everything goes!

Janie

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748

    Megannnnn
    Newest Member
    Megannnnn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
    • Scott Adams
      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
    • Clear2me
      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.