Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Frustrated


krisb0701

Recommended Posts

krisb0701 Newbie

I am so frustrated it isn't even funny. I was officially diagnosed a week ago. I am pretty good and know how to read food labels diabetes wise, but I am lost at Celiac wise. I know the obvious "gluten, wheat, barley, rye, oat" but do not understand the hidden items. I want to buy one of those shopping guides and get the iPhone/iTouch app from apple (is that gluten free) but right now I cannot afford it. I did request about every book from the library that they had. Figured it would be better than nothing.

ts very difficult here in my house. I live with my parents at the moment and my step brother and have other family members come home from time to time. None of them have Celiac. Just me in this house. My mother refused to get me my own Microwave, pots, cutting board, toaster, etc. Luckily we had new ones that my step dad won stored up in the attic. So I got my own pots and pans, fridge, and microwave. But getting my mom to understand the importance of a new toaster, etc is like nailing Jello to the wall. She says we'll just wash them in between which doesn't always work. So there is a high risk of cross contamination here. How do I get around that? And there is no way I can get my own stove...is it ok to use the same stove?

I been trying to eat gluten-free the best I can. From everything I bought I dont think there is any gluten in it. Some days I feel better, some worse. So that is telling me that I am getting some gluten in somewhere, or I am intolerant to something else. But I will put my money on a contaminate. I been really craving chips....I saw on the lays site that they are gluten-free, but made in a plant that process gluten...Is it ok to eat or is there another brand that I can try?

My most trouble some meal is breakfast. I am not a huge breakfast person to begin with. I started off thinking Frosted Flakes were gluten-free, but they made me sicker after a few days so I stopped eating them and felt better. I do like yogurt, but sometimes dairy bothers me, sometimes not. I am just at a loss on what to do.

Also what are must have books/magazines that I can look into borrowing or purchasing to help me learn? And are there any places I can go in the Boston area for support/help?

Many Thanks, Kris


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Hi Kris,

I think the best way to start gluten-free is to go with a simple whole foods diet. The fewer boxed/canned foods you buy the fewer labels you have to read. And the less chance there is of cross contamination. Think about eating rice and veggies with some kind of dead animal in it. The live ones squeal too much. :P Avoid dairy for the first 6 months and also soy.

Remember to check all of your vitamins and medicines, plus any drinks such as tea, coffee, soda etc to be sure they are gluten-free. Even tiny amounts of gluten can set you back and slow the healing process.

I saw you are wanting chips. I eat the Tostitos corn chips sometimes. They have a short ingredient list, corn, oil, and salt. They are good with homemade guacamole. They are a proccessed food but I think they are ok. Maybe wait a few weeks before trying them.

The thing is, when you first go gluten-free, your digestive system goes through a bit of an adjustment. So you may have some good and some bad days while adjusting. After awhile things should settle down. That is if you aren't intolerant to other foods also, and if you can keep the CC down.

If you buy meats look for ones that don't don't have injected flavorings. Hormel makes some gluten-free hams, called Cure 81 I think. Plain chicken and hamburger should be ok too. Spices are another possible gotcha. McKormick single ingredient spices are ok, but check the label.

I live with a cat who insists on her gluteny cat food. I just wash my hands every time I feed her. I did replace my toaster after getting glutened by crumbs in the old one. I didn't get all new pots and pans myself. I put water and soap in them and boiled them on the stove for a while though.

For breakfast eggs are fine or Mission corn tortilla rollups. Toast the tortillas first so they are soft. There are threads on this site for breakfast ideas. Just do a search on breakfast ideas, you will find some.

Welcome to gluten free, the way to be! :)

ciavyn Contributor

Hang in there. I've been doing it three weeks, and I assure you...it's worth it. I feel amazing, and I'm eating better than ever. Be patient with yourself, and take your time when you shop. Go when you can relax, check your foodlists in peace, and slowly get used to a new side of the store: the healthy side. And you might have other food issues - I do - to contend with, and you might have to cut some things out that you thought were safe. But feeling like a normal human being with a normal body is so, so worth it.

jenngolightly Contributor

Stop using a toaster. I don't eat toasted food anymore. There's no room in my kitchen for two toasters, so I just gave up toasted food right away and now I don't miss it at all. You have to give up a lot - you know this already. It's not fair. You'll say that a lot to yourself. And it's true. When you live in a house with no Celiacs, life isn't fair. You're the one giving up a lot of things.

I've learned to prewash everything I use. It's great that you have your own pots and things, but in a house with gluten, you should prewash them and your utensils before you use them for cooking. Prewash your silverware and plates, too. Your hands will get really dry, but your health is well worth it! Prewash! Prewash! Prewash! I can't believe what a difference that made for me.

ang1e0251 Contributor

I want to buy one of those shopping guides and get the iPhone/iTouch app from apple (is that gluten free) but right now I cannot afford it.

Many large grocery chains have a free gluten-free shopping guide through their website. If you can't find it, ask their customer service.

But getting my mom to understand the importance of a new toaster, etc is like nailing Jello to the wall. She says we'll just wash them in between which doesn't always work. So there is a high risk of cross contamination here. How do I get around that? And there is no way I can get my own stove...is it ok to use the same stove?

Do not share a toaster. It just doesn't work. Is this a regular oven or convection? Convection would blow all the gluten around. A normal stovetop is fine and a normal oven should be doable. Just cover your baking items with foil.

I been really craving chips....I saw on the lays site that they are gluten-free, but made in a plant that process gluten...Is it ok to eat or is there another brand that I can try?

I cannot eat Lays. Sometimes I'm OK but then the next time, I react. For me, eating them is like Russian roulette. For now try some that don't mention shared facility.

My most trouble some meal is breakfast. I am not a huge breakfast person to begin with. I started off thinking Frosted Flakes were gluten-free, but they made me sicker after a few days so I stopped eating them and felt better. I do like yogurt, but sometimes dairy bothers me, sometimes not. I am just at a loss on what to do.

Main ingredient in Frosted Flakes is wheat. Read the labels carefully. If you like cereal, try Rice Chex. They make a couple of other flavors that are gluten-free also. You probably want to lay off the dairy for awhile until you heal a bit. The other poster said lay off soy but I don't have a problem with it and use soy milk a lot. You can also use almond milk, it's good. I eat eggs for breakfast with tomatoes, onions and ham.

I'm sorry you are not totally supported at home but you can do this on a budget and in a mixed household. It will get easier, hang in there.

jackay Enthusiast

I need some help with contamination concerns as my husband eats lots of gluten foods. I am washing my hands a lot and they are so dry. I'm guessing because of the sad state of my hands that gluten is getting stuck in the cracked and dry skin.

If I'd start feeling better I'd be more up to cleaning up crumbs, etc. but I still have no energy. I keep hearing it gets better but I feel I am constantly contaminating what I put into my mouth. Right now as I sit at the computer I just think of all the gluten that is most likely coming onto my hands.

This is a tricky one. My husband has a beard and mustache and I really am concerned that I am going to get glutenized from kissing him.

Also, is sharing a microwave safe or does food blow around too much in it? I was covering my food with a paper plate but I am concerned that there may be gluten in that. I eat lots of brown rice and microwave a big batch at a time. I just hope I never become sensitive to brown rice. I have resorted to eating lots of foods cold.

jenngolightly Contributor
I need some help with contamination concerns as my husband eats lots of gluten foods. I am washing my hands a lot and they are so dry. I'm guessing because of the sad state of my hands that gluten is getting stuck in the cracked and dry skin.

If I'd start feeling better I'd be more up to cleaning up crumbs, etc. but I still have no energy. I keep hearing it gets better but I feel I am constantly contaminating what I put into my mouth. Right now as I sit at the computer I just think of all the gluten that is most likely coming onto my hands.

This is a tricky one. My husband has a beard and mustache and I really am concerned that I am going to get glutenized from kissing him.

Also, is sharing a microwave safe or does food blow around too much in it? I was covering my food with a paper plate but I am concerned that there may be gluten in that. I eat lots of brown rice and microwave a big batch at a time. I just hope I never become sensitive to brown rice. I have resorted to eating lots of foods cold.

Getting my dh on board was difficult - it nearly split us up. But it's essential for your safety because he's the #1 carrier that will cross-contaminate you... especially since he has a beard and mustache. My dh whined so much in the beginning. When he wasn't whining, he was dismissing my illness. When he wasn't doing that, he was angry with me for making him change how he got to live his life "in his own house." I just kept giving him stuff to read about Celiac.

We had HUGE fights like when he cracked open a can of beer right where I was making hamburgers and I couldn't eat dinner. Or when there were crumbs all over the counter and floor. Or he spilled leftover soup on my leftover gluten-free food and didn't throw my food out so I got sick. Or when... One day I lost it and threw away every single gluten food in our house. 2 huge outside trashcans full of food. DH came home and I gave him an ultimatum. Me or gluten. I won, but barely. :-)

I allow gluten food now, but there's a dedicated place in the kitchen for gluten food. The microwave is safe - but I clean it religiously and use paper towels for everything - gluten or gluten-free. I clean constantly and my hands are dry, but I use St. Ives, and have bottles of it everywhere (not all st ives are gluten-free). DH knows to brush teeth/wash face before kissing me (He says, "I'm gluten-free" or "I'm not gluten-free" when I try to kiss him). And he helps now, too. He knows to clean the stove after he cooks gluten stuff. He cleans crumbs. He washes up after himself. In the beginning, it was all me doing the work. He's now on board. I've been gluten-free for 2.25 years.

It all turned around the day I threw away all the gluten food. I hope it doesn't take that for you and your husband.

Sounds like you're in a loop - you can't clean cuz you're sickand you're going to be sick until you clean. Either get the burst of energy and do it yourself, or get dh to help. He will need to become your partner in this someday - maybe today is the day!


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,336
    • Most Online (within 30 mins)
      7,748

    jojocle
    Newest Member
    jojocle
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Hello, @Itsabit, Your journey sounds very similar to mine.   I'm very concerned about your diet since you say you don't eat a lot of meat, which is the main source of B vitamins.  Nutritional deficiencies go along with Celiac Disease.  Blood tests are not accurate measurements of deficiency states.  The body robs stored vitamins from organs to circulate in the bloodstream to supply the brain and heart.  You can have deficiency symptoms before blood levels change. I have a hypersensitivity to sulfites, so much so that I had to switch my toothpaste to one that doesn't contain Sodium Lauryl Sulfate.  SLS can cause oral irritation as a side effect, too.   My mouth would burn and I avoided certain foods.  Dapsone contains sulfites, as do antibiotics.  Treatment with sulfites can precipitate a Thiamine deficiency disorder because sulfites cut thiamine in two making it useless. https://pubmed.ncbi.nlm.nih.gov/35506963/ https://pmc.ncbi.nlm.nih.gov/articles/PMC10506142/ I have an allergy to nickel, also.  Zinc helps keep other metals in balance in the body.  Zinc is also terribly important to skin health and oral health. https://pubmed.ncbi.nlm.nih.gov/8445075/ https://pmc.ncbi.nlm.nih.gov/articles/PMC11274920/ https://pubmed.ncbi.nlm.nih.gov/1977254/ Thiamine (Vitamin B 1) deficiency disorder symptoms and altered thiamine metabolism can occur after radiation or chemo.   Thiamine and Niacin B 3 are important in nerve conduction.  When I was very malnourished, I had paresthesia that made me feel itchy all over, and made my dermatitis herpetiformis extremely unbearable.  The form of Niacin that causes flushing, Nicotinic Acid (not the same as nicotine in cigarettes) is beneficial because the flushing helps open the small capillaries in the skin which allows the antibodies to be cleared and disposed.  Pellagra can occur in Celiac Disease.   I had it, and my doctor didn't properly diagnose it, either.   I had a rash around my neck, Casal's Necklace, along with a blistering rash on my arms and any skin exposed to the sun.   https://pubmed.ncbi.nlm.nih.gov/8445075/ https://cgp.iiarjournals.org/content/10/4/169 https://pmc.ncbi.nlm.nih.gov/articles/PMC11722086/ https://pmc.ncbi.nlm.nih.gov/articles/PMC6780714/ https://pmc.ncbi.nlm.nih.gov/articles/PMC10229844/ https://pubmed.ncbi.nlm.nih.gov/1977254/ You should be checked for more than just B12 deficiency.  The eight B vitamins work together, and we need more of them when we're trying to heal.  They are water soluble, so the body can easily excrete them if not needed. Have you had your Vitamin D level checked?  Vitamin D regulates the immune system and lowers inflammation.   I hope you can find some benefit from my experiences.  Keep us posted on your progress.  
    • knitty kitty
      Hello, @Jack Common, I know how frustrating health mysteries can be. Perhaps you're having a reaction to the medication you were given for the giardiasis you mentioned in another post. The giardiasis infection would account for the high Igg results.  Have you been reinfected? The site I've linked below has lots of information about the long term consequences of being treated with a medication frequently prescribed for giardiasis infection.   https://hormonesmatter.com/metronidazole-toxicity-doctor-denial/ https://hormonesmatter.com/?s=metronidazole https://pmc.ncbi.nlm.nih.gov/articles/PMC3870550/ Please let us know if your symptoms may be due to this reaction to the prescription for giardiasis. Best wishes.
    • knitty kitty
      Hello, @Jack Common, I know how frustrating health mysteries can be. Perhaps you're having a reaction to the medication you were given for the giardiasis. The giardiasis infection would account for the high Igg results.  Have you been reinfected? The site I've linked below has lots of information about the long term consequences of being treated with a medication frequently prescribed for giardiasis infection.   https://hormonesmatter.com/metronidazole-toxicity-doctor-denial/ https://hormonesmatter.com/?s=metronidazole https://pmc.ncbi.nlm.nih.gov/articles/PMC3870550/ Please let us know if your symptoms may be due to this reaction to the prescription for giardiasis. Best wishes.
    • Itsabit
    • Itsabit
×
×
  • Create New...