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

Frustrated, Hungry And Need Help Super Sensitive People Please Respond


littletsunshine

Recommended Posts

littletsunshine Newbie

I have been attempting gluten-free for 2 weeks now. Some days go really well and others not so good. I dont have instant reaction to anything gluten but eventually end up with symptoms. Food diarys dont do any good cause I cant possibly tell when something is affecting me when it came from. Ive read every lable and millions of posts, replies from companies you name it but I am at the end of my rope.

I know I am allergic(epi-pen worthy) to Sulfites. So that is out!

I know Im lactose Intolerant have been dealing with that for 20 years(100%lactose free skim milk and I get along)

And Now dr said Celiac so gluten free. Yey easier said than done!

I dread eating now cause I can never find anything safe. I live in Montana and we have one store that is slightly usefull if you happen to have 5X the grocery money you used to have.(Montana groceries are outragous already, my mom freaked when she heard the prices here) We almost never get anything fresh except what is grown here(which isnt a whole lot unless you eat grass hay and even that has shortages)

So here it is. I need to know your totally failsafe foods. Preferably mainstream cause otherwise....chances are it doesnt exist here. I do have a supposed gluten free list from "the good food store" but I can only afford limited number of items there. For example Annies mac and cheese at walmart(our absolute cheapest store) was 1.28 last i checked Its almost $4 at Good food store. (Just imagine what specialty foods are like there ouch) yey so I know we cant have mac and cheese but it was just a price I knew of the top of my head. The Albertsons if they carried it would be about 2.50 cause well they all suck here, just walmart controls prices better/national chain etc) And if you say eat basic food like meat etc, know that literally almost every form of meat here has been processed or frozen somewhere else. Thus the failsafe list. Im tired, hungry and gettting no where.

HELP!


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



Celiac.com Sponsor (A8-M):



jststric Contributor

I have found that the prices of those specialty items don't differ between Walmart and more upscale stores such as Whole Foods. So, price comparing is kind of a waste of time. THe biggest problem is supply. I have found that the same prices are found ONLINE also but you can find amazing things you'll never see in the few stores here/there. I think the people that live in the major metro areas are probably the most fortunate to actually find the items in their stores and having the specialty stores. Look on www.(Company Name Removed - They Spammed This Forum and are Banned) and look for gluten-free foods under grocery. There are also ads on this board of other websites that offer foods you can order. Look for the links on all the websites to find more. As for foods......I find it easiest to stay away (for the most part) from processed things and simply eat whole, real foods. Meats, veggies, fruits and grains that you may need to learn more about. I cannot do the dairies also or rice or beans. Rice and beans are often the base to alternative gluten-free items, so I'm screwed. Yes, you miss some of the things you are used to loving, but after awhile, all the pain and suffering you go thru to have these items, its just not worth it anymore. Best wishes! I envy you living in Montana......the beauty has got to be worth SOME of the higher prices. : )

dilettantesteph Collaborator

Get things that you can wash carefully before eating. Fresh is best, but not necessary, if you can wash canned. I can't eat very many of the specialty items. Especially ones containing grains. They are all out. Once you get healthy, you will be able to see which things you can add back into your diet. Don't they even have bananas there?

dilettantesteph Collaborator

Lundberg rice is good, but I do wash it. You can mail order it if you don't have it locally.

YoloGx Rookie

I am very sensitive too -- and have discovered that I needed to go off all grains as well as all fruit except for lemons and of course no sugary anything (I use stevia instead; you could order it online and/or grow it). I also avoid all nuts--and sesame. I eat a lot of sunflower seeds instead. I avoid tomatoes, potatoes and green peppers--the nightshade family. I eat meat (lots of chicken--frozen is OK) and lots of green vegetables. I use roots and squash as my carbohydrates. Its actually pretty cheap to eat this way. I grow summer squash in summer.

I eat a lot of nonfat organic yogurt. Some say its best to make yogurt yourself--something you could do in Montana or wherever.

For a while I ate the various alternative grains (quinoa, teff, amaranth, buckwheat etc.) and did a bunch of baking, but -- though better-- I still suffered from eczema, tiredness and bloating even though I ate no gluten.

So, basically, doing it backwards as it seems I often do, I have arrived at the Specific Carbohydrate Diet overall. You might want to check into it. It seems many of the "sensitives" here have found success with it when all else fails. Its also a great way to clean out when you first go on the no gluten diet or happen to get CC'd (cross contaminated from gluten). Plus further its very inexpensive to buy basic food that you prepare for yourself from scratch this way and readily available most anywhere one could live. Just make a bunch at once and freeze the rest in various meal sized containers.

I will say I now feel healthier than I have ever felt.

So--good luck with your new adventure!

Bea

PS--in Montana can't you have your own chickens?

oceangirl Collaborator

As others have noted, your best bet is to buy whole foods and cook from scratch. Most of the super sensitives on here seem to eat relatively close to the Specific Carbohydrate diet- no substitute grains. I would think you could find some meats out in Montana? Buy whole cuts, chicken and any fresh fish? Butternut squash, acorn, zucchini, summer squash- all very good. Bananas are good. Some of us eat nuts- I eat Planter's almonds, cashews and macadamias, but you may need to wait 'til you heal a bit. Sweet potatoes are very good. I avoid most nightshade vegetables (white potatoes, eggplant- look up in web) I also can eat no rice or legumes.

I would avoid all "replacement foods" as they generally don't work for supersensitives. 4 years in I have added dairy back in the form of Greek plain yogurt and Cabot cheddar cheese- you may need to cut out dairy at first.

Cook yourself some plain chicken and squash first. All veggies will be good eventually but you may find cooking helps at first. (cooked spinach, swiss chard, squash...)

Take it slow and easy, one new food at a time and keep a detailed food log with symptoms- it's invaluable. I've done this for nearly five years and it's second nature to me now and it takes no time- and that's while raising two teenagers, working full-time teaching Special education to emotionally disabled teens and being in graduate school all at the same time, so- you can do it! It has helped solve mysteries MANY times!

Good luck and good health to you! Keep reading here- it helps.

lisa

daphniela Explorer

There is a few lists online. You will need to check labels to ensure the foods are still gluten free.

Open Original Shared Link

Open Original Shared Link


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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    2. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    3. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,858
    • Most Online (within 30 mins)
      7,748

    Beckyq
    Newest Member
    Beckyq
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • 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.