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Allergic To Gluten Free Products

ricefreejane

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ricefreejane Newbie
ricefreejane
Posted

Has anyone else notice that they get a bad reaction to so called gluten free products that contain rice flour or maize (cornflour). Even tapioca sets me off.

Off to dietician at Dr.s today and I hope she is going to skin test me. My grandmother was a celiac and my mother had what was diagnosed as IBS. I have hashimoto's disease (underactive thyroid) and apparently it's common for folks like us to have allergies to gluten and dairy (which I have) but this reaction to rice/rice flour and maize/cornflour is driving me nuts (no pun intended). Is this common or is it just me?

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dilettantesteph Collaborator
dilettantesteph
Posted

There seems to be a small percentage of us, myself included, that react even to gluten free food. I can eat rice and corn on their own when I wash them first. I can eat their flours when I grind it myself, but not in processed gluten free foods. I do a lot of cooking from scratch.

bittykitty Rookie
bittykitty
Posted

There seems to be a small percentage of us, myself included, that react even to gluten free food. I can eat rice and corn on their own when I wash them first. I can eat their flours when I grind it myself, but not in processed gluten free foods. I do a lot of cooking from scratch.

When my body is irritated,I cannot tolerate gluten free baking mixes with tapioca flour, at all.Even on good days, I can't eat much of it without a reaction.But I can eat yucca,the plant it comes from,with no problem.Weirdness.

ricefreejane Newbie
ricefreejane
Posted
  • Author

Thanks for that. it would be very interesting to know what percentage of celiacs have this intolerence so if there's anyone else out there with this allergy please post. After meeting with the dietician my GP has decided to send me to London (probably) to an allergy clinic as his dietician can only devote a half hour slot to me per appointment on the NHS and apparently a proper clinic at a hospital can do a two hour consultation. Ho hum! We shall see.

LDJofDenver Apprentice
LDJofDenver
Posted

I don't know how long it's been since you were diagnosed but I've seen many of the "elders" (in knowledge) of this forum suggest eliminating all grains for the first 6 mos. or year, until your body has had a chance to heal. Perhaps you can do a search for more information related to this.

cleanfreak73 Newbie
cleanfreak73
Posted

Hi! My daughter who was diagnosed celiac and I (who hasn't had blood tests yet) both ate corn pasta and both had a stomach ache that night.It was like a pit of the stomach ache though, not really intestinal. Almost like an ulcer pain,or gastritis, which I seem to get a couple of times a year. The rice pasta doesn't bother us but the corn, it was like too heavy and harsh? Is that what you mean?

ricefreejane Newbie
ricefreejane
Posted
  • Author

Yes but I get very sleepy and disorientated also if I have any kind of grain including rice, rice flour, corn, corn pasta, any chutney or sauce with cornflour plus intestinal pain. And it can take days to feel right again. But I only discovered this after I had eliminated wheat, oats, rye, barley, spelt, quinoa etc. from my diet.

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Wolicki Enthusiast
Wolicki
Posted

Those are just a few of the things I was intolerant to. After 8 months gluten free. most have resolved.

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      By catnapt · Posted

      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
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