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

A Diet Without Grains?


Lockheed

Recommended Posts

Lockheed Apprentice

I am not a fan of eliminating a whole food group from your diet, but I'm seriously beginning to wonder if I would feel better if I just avoided grains entirely. I have celiac's so no wheat rye barley. I also react to oats, amaranth, millet and spelt. I recently seem to be having issues with rice also. I thought for a long time maybe I just needed more excercise and more water - although that helps me on the physical fitness spectrum, it doesn't help the severe digestive issues I'm having. Has anyone else eliminated all grains? How do I do that safely? Is there some research out there about this? Or am I just crazy?


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



Celiac.com Sponsor (A8-M):



Katie B Apprentice

Hi Lockheed - check out the Specific Carbohydrate Diet. I'm on the low FODMAP diet at the moment and am limiting my carbs per serving and spacing them out...

srall Contributor

There are a lot of people here on a no grains diet. I'm on week 3 or 4 right now. I'm not keeping track. Initially I was going to test it for 6 weeks, but after the first week, after the INTENSE cravings died off, I realized this would be permanent. I had some residual issues, mostly joint pain that must wouldn't resolve just (wheat) gluten free. I blamed coffee, wine and night shades. Well, I've been drinking coffee with cream, drinking wine (not everyday) and eating tons of potatoes with my morning eggs and I have ZERO joint pain. None. Nada. Zip.

I'm not doing a specific diet. I'm trying to eat very balanced and make sure I'm getting a lot of fruit to make up for the carbs. I do notice when I over eat fruit I don't feel well. I feel the best with a piece of meat and a veggie. But I already knew this.

I think it's worth trying for a month or so. I waited for spring because our winter was so harsh I didn't have the resolve to start something new. Plus I knew it would mean a lot of trips to the grocery store. I will repeat, the first week was almost unbearable. I could not believe the cravings for carbs (muffins, oats etc) would go away. I was preparing for 6 weeks of cravings. But within two weeks they were over. I think you'd get a lot of support here if you tried it.

starrytrekchic Apprentice

Spelt is a type of wheat, so you'd definitely react to that. You might also be reacting to cross-contamination during harvesting. A lot of the grains on the market are at risk of being contaminated, so you may just need to switch brands. If you're early in the diet, you might simply be having problems digesting grains, which should pass as you heal.

sb2178 Enthusiast

Millet particularly often has high contamination levels.

Oats cause reactions among a portion of celiac patients.

I second eliminating, then reintroducing in limited amounts. Sweet potatoes and such can substitute for carbs. Soaking grains overnight also helps digestion in some folks.

Lockheed Apprentice

I'm sorry, I should be more clear. These are items I eliminated from my diet 8 years ago. I've been gluten-free for a while and I really pay attention to being gluten-free. But really.. I think I'm starting to have an issue with rice... like the same kind of issue I have when I get something with gluten. And it doesn't seem to matter the brand or type or source. And I'm thinking if I add rice to the long list of grains that I already can't have.. then perhaps I should consider eliminating all the grains together. Maybe I just can't tolerate grains. And I really don't miss the illness that came with eating most carbs. I do miss fast food french fries (the cross contamination on those has gotten to be enough in the last couple of years to set me off).

Further, I've always wondered about the celiac's diagnosis. I don't present with the leaky gut syndrome or the immediate severe illness that occurs for the tradiational celiac model. My reaction is the exact opposite - everything just stops functioning including me. So maybe the end result is the same as a traditional celiac in that we both have severely damaged intestines and malnutrition resulting from not absorbing vitamins and nutrients, but maybe it's not really the gluten that I'm having the issue to. Maybe it's something broader that includes glutens?

Lockheed Apprentice

Hi Lockheed - check out the Specific Carbohydrate Diet. I'm on the low FODMAP diet at the moment and am limiting my carbs per serving and spacing them out...

Okay so somehow naturally I'm really close to a low FODMAP diet and those foods don't seem to give me an issue. I'm going to look into it further. Thanks for recommending!


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



Celiac.com Sponsor (A8-M):



Pyro Enthusiast

I've read that celiac covers all grains and the gluten diagnosis has been a mistake. Remember that quinoa and buckwheat aren't grains.

BTW be careful about FODMAP, SCD, GAPS and the like. While the information there may be helpful, my avoiding of any minor disturbance backed me into a no carb corner. From there it seemed like my body started to really shut down from the lack of carbs and will test adding them back in right now.

Woolygimp Contributor

I've read that celiac covers all grains and the gluten diagnosis has been a mistake. Remember that quinoa and buckwheat aren't grains.

BTW be careful about FODMAP, SCD, GAPS and the like. While the information there may be helpful, my avoiding of any minor disturbance backed me into a no carb corner. From there it seemed like my body started to really shut down from the lack of carbs and will test adding them back in right now.

I've started eating grain free because I have Sjogrens (an autoimmune condition) and celiac disease. After over two years on a gluten free diet I wasn't getting better...

Eating grain/dairy free has really been a big improvement for me, I feel like I have a lot more energy, my Sjogrens has died down a lot, and I feel much less inflamed.

jenngolightly Contributor

Grain free wasn't hard for me. It was hard to feel full, though. Grains give you that bulk feel in your stomach. I recently reintroduced white rice and although I feel full, my C has returned - not as bad as when I had a lot of different grains in my diet, though. Thinking I need to go grain-free again. Bummer.

I was on a strict SCD diet for a year and now I eat a much less restrictive diet, but mostly whole foods. SCD doesn't restrict from NO carbs, just complex carbs that are harder to digest.

cassP Contributor

I'm sorry, I should be more clear. These are items I eliminated from my diet 8 years ago. I've been gluten-free for a while and I really pay attention to being gluten-free. But really.. I think I'm starting to have an issue with rice... like the same kind of issue I have when I get something with gluten. And it doesn't seem to matter the brand or type or source. And I'm thinking if I add rice to the long list of grains that I already can't have.. then perhaps I should consider eliminating all the grains together. Maybe I just can't tolerate grains. And I really don't miss the illness that came with eating most carbs. I do miss fast food french fries (the cross contamination on those has gotten to be enough in the last couple of years to set me off).

Further, I've always wondered about the celiac's diagnosis. I don't present with the leaky gut syndrome or the immediate severe illness that occurs for the tradiational celiac model. My reaction is the exact opposite - everything just stops functioning including me. So maybe the end result is the same as a traditional celiac in that we both have severely damaged intestines and malnutrition resulting from not absorbing vitamins and nutrients, but maybe it's not really the gluten that I'm having the issue to. Maybe it's something broader that includes glutens?

you might want to test out the rice. ie: some fodmap lists include brown rice as being problematic. maybe you should see if you react differently to brown or white rice. i too feel much much better if i avoid all grains in my diet- but if i have basmati white rice 2x a week i feel just as fine.

RollingAlong Explorer

Check out the Paleo diet - plenty of people eliminating grains and feeling great!

anabananakins Explorer

I eat a low grain diet. I also avoid regular potatoes. For me, it's not because I react to them (besides gluten ones of course) but because I need to keep my carb intake really low to manage my insulin resistance.

BTW be careful about FODMAP, SCD, GAPS and the like. While the information there may be helpful, my avoiding of any minor disturbance backed me into a no carb corner. From there it seemed like my body started to really shut down from the lack of carbs and will test adding them back in right now.

I do find this balance tricky sometimes. I discussed what I eat with a dietitian and she thinks so long as as I eat fruit and drink milk (I have lactose free milk) then I'm getting enough carbs. But I do have to watch it, especially if I'm being particularly active.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,035
    • Most Online (within 30 mins)
      7,748

    bostonbell
    Newest Member
    bostonbell
    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

    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
×
×
  • 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.