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

Articles Explaining Why Many Of Us Cross-React With Grains And Soya...thoughts?


Hala

Recommended Posts

Hala Apprentice

Hello,

I've been gluten-free now for 11 weeks, but I've been experiencing frequent glutening-like symptoms, which I think I've tracked down to ingesting anything with corn flour/starch, maize flour/starch, soya and, to a lesser extent rice. (I am also lactose and egg intolerant - and possibly white potatoes too...?).

Anyway, I've stumbled across some articles that explain grain-intolerance in coeliacs.

Open Original Shared Link

(scroll down to What Is Gluten And Where Is It Then?)

Open Original Shared Link

Do these seem valid? It definitely fits in perfectly with what I've been experiencing!

I'm so sick of feeling so awful all the time! I avoid gluten and contamination like the plague but am still in pain/feeling sick and steadily losing yet more weight (and hope!).


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Many posters on the board find they feel better with no grains at all, while others have different (and differing) grain sensitivities. Corn is as bad as wheat for me, and I do not tolerate amaranth or millet, while buckwheat, teff and sorghum are fine. I avoid oats just because I don't think they are a good idea :blink:

GFreeMO Proficient

I am trying to be as grain free as possible.

Is rice a grain? I usually eat rice with fruit and brown sugar for breakfast. Does it count as a grain?

mushroom Proficient

Rice is a grain, but a very low protein one - only 5% on the table in the link.

Hala Apprentice

Seems like our bodies just can't cope with anything :(

cavernio Enthusiast

I'm nitpicking. The first article you linked didn't say non GMO soy is bad. I have not removed soy from my diet, but I'm not 100% better and is one of the things I have been considering totally wiping out. I know that a lot of people on the forums do have issues with soy, but with my lack of reaction and that I havent found any scientific literature showing that soy causes a celiac-ish immune reaction, (and I have with corn and dairy), I've not bothered going off soy. Some people say that it's just too hard to break down and so they get stomach issues from it I think. If anyone gets their usual celiac reaction to soy or has read something saying there is an autoimmune potential with soy, I'd love to see it.

I completely disagree that the *only* reason we think of wheat gluten as being problematic is from way back when, or that that was a bad way to look at it. There's been thousands of celiac studies and what grains are safe and which ones aren't since then. That's why we don't eat rye and barley now. Oats get all sorts of contradictory data. What I do agree with in the article though, is that gluten problems are too narrowly defined when we only use intestinal damage to indicate it. I don't know about their 1 in 7 people who have issues with grain (I can totally see it, I just don't fully trust where they get their info) but I could see the list of unsafe foods for celiacs and sensitives become quite a bit larger if we actually included ALL symptoms and not just what causes villi damage.

I have a really hard time being corn free. I have a hard time not buying processed foods. I was corn free for a few weeks quite awhile ago, but when I ate corn on the cob and noticed nothing I decided it was fine. Then I learned that most corn in the states (and likely Canada too, we don't have tight regulations on labels and GMO and Monsanto, the primary company involved in creating these hybrids has been caught bribing officials in Canada to say safety studies on their products are better than they are) is GMO to explode the intestines of corn borers that eat it. Apparently it needs a bacteria in the gut of the borers to do that. So I've been mostly avoiding any sort of GMO corn and GMO soy (they make it so that they can use too many pesticides so it's not exactly a good practice even if it is safe which it might not be) while I'm at it. Keyword: mostly. Stupid sauces and Udi's buns and tofutti. I lost my willpower years ago. It's not much easier to find even when my health is at risk.

Lady Eowyn Apprentice

Hi Hannah - and bless that guinea pig :) .

I have strong views about gluten (especially) and other grains.

It's my belief that humans should not eat them as we are not designed to digest them nor are other mammals. This is my own view and not intended to be scientific fact or anything! I think it is important to remove them from a diet particularly if suffering from any long term type ailment. I think celiac is just an individual manifestation of problems with gluten just as any other lifelong condition could be.

With what I know now I would not give gluten to a child of mine (too old for another now :( ) and keep other gluten sources to a minimum for a child that is.

I have read that as a rule of thumb food that cannot be eaten raw/poisonous raw can give problems when cooked. This covers grains, soya, pulses and potatoes which would make you very ill raw but obviously not meat which I believe, humans get most benefit (nutrient wise) when eaten raw. I would hasten to add that I don't eat raw meat :ph34r: or recommend doing that obviously! (with obvious exceptions).

Not sure how I do with pulses as I rarely eat them. Did get stomach ache from lentils not long ago.

Can't eat potatoes, rice, soya or general gluten free flours but have recently bought some coconut flour which I have high hopes for as I am ok with coconut.

I think I might be rambling now so I will go ........ :ph34r: .


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



Celiac.com Sponsor (A8-M):



foam Apprentice

I agree with the above post 100%, my wifes pregnant with our first by the way and I will be very hesitant to allow many grains in their diet you can be sure. Coconut in all it's forms is AWESOME. Potatoes for me is something.. Because obviously they are from a dodgy botanic family, on the other hand with the restrictive diet you need to cure yourself and the digestive problems we have and the sugar we can't eat..., it's very hard to get enough calories to hold enough weight to survive it without potatoes, if someones got a lower carb non grain alternative I'd love to hear it.

My list of trouble foods can basically be made into a list from worst to best based on grain/nut/legume family and listed in order of protein content. Then you can list fruits in order of sugar content. Least protein and least sugar the better it is. All veggies are fine, coconut is awesome, all meat is fine but red meat is the best and for now the more cooked it is, the more the protein is broken down = the better. You should listen to me about meat since I didn't eat it for 20 years "!) and really didn't expect to ever eat it again, I just got stuck in a bad place and ran out of foods in the end

mushroom Proficient

While sweet potatoes have more carbs than white, they have a lower glycemic index. :) I don't know if that makes any difference for you.

Hala Apprentice

Thanks for the advice (and don't worry, I love a good long ramble!). I just wish I could see what was going on inside me so I knew exactly what to eat/avoid!!

dilettantesteph Collaborator

It is hard to tell if reactions are coming from gluten contamination or from a cross reaction. These other grains are botanically quite different from the grains which cause reactions. Already oats are different enough from wheat, barley and rye to only cause reactions for a small percentage of celiacs. Corn is much more different than that. The tests generally used to determine if something is gluten contaminated are of too low sensitivity to cover all celiacs/gluten intolerants. How low some might react is also not agreed on my researchers. Those two factors pretty well make it impossible to figure out the cause.

What's important to me is, if it makes me sick, don't eat it. Sometimes if I keep looking for a better source, or grow it myself, I find that i can eat it after all.

AnnJay Apprentice

I am also in the camp of, if it makes me sick I don't eat it. Now avoiding gluten, corn, soy, dairy, tomatoes, and chocolate for the sick category. But I also avoid most grains for a vague reason of just not feeling GOOD on them. It's like my metabolism changes and I feel hungry all the time just because of a little quinoa. So, I eat potatoes, parsnips, turnips, and lots and lots of vegetables along with meat. In fact, I keep buying and cooking a greater variety of vegetables just to keep my interest. And I think my diet is very good for me right now.

Funny thing is, years ago I ate vegetarian and consumed lots of grains and dairy. That diet sure wasn't good for me!

foam Apprentice

AnnJay, I'm sure I made myself sick by being vegetarian. Not so much being vegetarian itself but because I replaced meat with grains calorie for calorie. Also interesting is that I don't know ANY very long term vegetarian that can still eat wheat so it's a common theme.

Sounds like at the moment you are eating the same as I am and it's MUCH better for me than grains and no meat that is for sure.

I first got sick on rye actually and avoided rye bread for many years before a similar problem with wheat showed up, then I got sick on soy milk, then I got sick on corn (raw) is where I first noticed it and I used to like eating raw corn fresh off the plant in the garden but one day I just started getting sick every time I ate it, then cooked and processed came corn later. Later still I felt better without rice. I can still eat rice but I definitely feel less inflamed not eating rice. I think just going off rice for a few months should get my antibodies to rice down enough to get on rice again in limited amounts. Because it's low protein I don't think it's ever going to be a huge problem like the other grains. Milk Chocolate actually makes me sicker faster than anything else.. Bit strange but it does

ButterflyChaser Enthusiast

Hannan, I am currently in that same stage and cannot even have simple, nonGMO, organic, "naturally gluten free" grains, like rice. I must be the only person with what seems to be NCGS to react to plain rice. :blink: If it can be of any comfort, I have been grain-free and soy-free (as well as legume-free) for about 2 months now, and it gets better. I am not sure how that would work out if I were vegan, though, but if you can digest legumes and nuts alright (which I can't), then you are in a better place than I am,

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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,332
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.