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
      131,945
    • Most Online (within 30 mins)
      7,748

    Miyasato
    Newest Member
    Miyasato
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
    • DebJ14
×
×
  • 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.