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

Wheat/gluten/diary


cm285

Recommended Posts

cm285 Newbie

diagnoxed 6 mos ago with celiac sprue-made some changes to my diet, mainly with bread and experimenting with baking. recent blood work shows no difference from initial blood work and i am bummed...i am totally overwhelmed...i bought a book to take to the grocery store to help me pick out gluten free foods...but somewhere i am missing a lot because my symptoms seem better for a day then i try something new and go backwards. i crave milk=i grew up on it. so far i have tried rice milk and almond milk. i am also trying soy as of today but tried it with hot cocoa and think the cocoa ruined it. its just not the same. my popcorn contains milk....what the heck is up with that? i dont really enjoy cooking so i am trying to figure out how to cook in batches so i dont have to cook fresh every day...i need as much advice as possible...dont think i can afford a nutritionist at the moment and am limited by product availability because i live in alaska. so...how do i start? i am tired, frustrated, crabby because i dont feel well and get embarrassed by gas issues...does any one get vitamin shots? does anyone else freak out about the blood work results? sorry to complain a lot but i dont know where to start-i am reading everything i can and finding conflicting information online....need some support


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



Celiac.com Sponsor (A8-M):



RideAllWays Enthusiast

Sorry to hear you're struggling :( We've all been there.

Try and eat whole foods for a while to let your system settle down a bit. I do well on meats, fruits, veggies and not much else. I have a potato almost every day, and rice cakes with peanut butter are my savior. I cannot have soy, corn, or lactose, so I know how limiting extra allergies can be. If lactose bothers you but casein does not, you could try Lactaid or another lactose-free milk. Lactase, the enzyme that breaks down lactose, is added to the milk to do what your body cannot. It works for me :) Good luck!

mygfworld Apprentice

I understand your frustration! I can handle the gluten side, but the casein/dairy shocks me. I find dairy in the weirdest places. If you are having that many problems with the diet, stick to unprocessed foods for a while until you feel better.

The easiest way to manage the diet for me is to look up or call the manaufacturer on EVERY product you eat or drink thats in the pantry. Then write a big gluten-free/CF on the package. Toss or give away everything that is unsafe.

You can buy a safe food list from several sites. See GIG, Clan Thompson, and I forgot the other places. The food list will make grocery shopping easier. Start with a small list of safe foods you eat and then slowly add a few more items AFTER you have checked that they are gluten-free/CF. Medicines and vitiamins have made me really sick in the past. So be careful.

I use a hot air popper for popcorn. Works really well. Earth Balance butter is gluten-free/CF.

For meals, find a few meals that you like to make and that last. Cook a whole chicken. Make a big batch of rice. Then just reheat with different sauces.

Make pizza (Bob's Red Mill Pizza dough mix is the best and not hard to make.) Skip the fake cheese. Just top pizza with veggies and meats you like.

I dont like to freeze pasta. It just doesnt taste good to me later, but other people like it. So making a big tray of pasta bake might be a good option.

Sometimes the library has good options for gluten-free recipe books.

The baking can be a bit weird. Bob's red mill, Gluten free Pantry, and Pamela's have good gluten-free mixes. gluten-free pantry has the best coffee cake mix and it is really simple. Always comes out great. Throw some fruit in too.

Good luck. It gets easier with time.

jststric Contributor

I feel your frustration! Not only is glutens in the weirdest things, but I think milk is in even more weird places! You simply need to read the labels of absolutely EVERYTHING. It takes awhile to catch onto and you will "grieve", if you will, the loss of being able to enjoy some foods you used to love. But after awhile, the symptoms you suffer simply makes them less desirable. Smart Balance LIGHT is also dairy-free. But make sure it is the the LIGHT version, as all the others have casein. I have found a Willow Run soy butter that is EXCELLENT but its only found here/there and usually in stores like Whole Foods and such. I have found that Act II Old-Fashioned microwave popcorn is good and if not that, I use the old-fashioned bags of kernals and a saucepan! I have also found that eating tortilla chips from a company that doesn't do 101 other flavors is by far safer. I eat Santitas brand. Read the lables of hot dogs (yes!) and pasta sauce (yes!) because they often have milk in them also.

Lawspike Rookie

I am right there with you... I am on the beginning of week two elimination. My results are no gluten, casein, soy, eggs or honey. I ask - what the heck am I to eat. I am OVER fruit and OVER salad... and this is far more frustrating and overwhelming than I ever could have dreamed up.

I keep one goal in sight.... soon, and not to far in the distant future, I will hopefully feel healthy again. As for now. .. I am pretty sure I could go live on a desert island.. eat the bushes and the berries... and live happily ever after! ;-)

Takala Enthusiast

You should post what you eat for breakfast, lunch, dinner so we can trouble shoot it.

IF you are that sensitive, you don't want soy milk because a lot of gluten intolerant/celiacs don't do well on it because it depresses thyroid function. Also, avoid Soy Dream and Rice Dream- they are labeled gluten free but many people have reported here that they react to these products, because of the way they are processed with barley.

Canned coconut milk can be a good dairy substitute, and it has a lot of fat, so it helps quell hunger.

If you are having cravings, be sure you are taking a gluten free B complex , a multivitamin, a calcium/magnesium/ vitamin D supplement- to counteract your cravings and to help make up for malabsorption issues.

If you find a food that you KNOW is safe, you can mail order it in bulk if it is not available where you live. For instance, rice cakes (lundberg) Don't eat Quaker, they are not safe. Tinkyada rice pasta would be another one. Some flavors of Larabars, which are just fruit and nuts but a very handy snack. Rice Chex and Corn Chex cereal, in the boxes marked "Gluten Free."

Boxed chicken broth and tomato soup by Imagine or Pacific, in boxes marked "gluten free" are another huge timesaver. What is easier than pouring soup into a bowl to microwave ? Add some rice and frozen veggies and some rinsed, canned beans and it's an instant meal.

Be sure your lipstick is gluten free. Also any medications, over the counter or prescription, need to be gluten free.

Re bread: I would figure out what sort of gluten free flours you do well with (I shudder to think what the Bob's Red Mill stuff costs up there) and then learn to bake a pan bread up quickly. This is going to be so much cheaper and better for you.

I do quick breads in a small cast iron skillet on the stovetop and then finish them under the broiler, from cracking the egg into the bowl as the nuts grind in the blender, until it's done on top, I can get four servings of tasty nutmeal sorghum bread done in about 10 to 15 minutes. I don't even measure accurately, I can eyeball everything at this point (note to beginners- this is a goal, not an instruction, YOU need to use a measuring spoon and cup until you get the hang of it).

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,397
    • 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.