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

Why Some Celiacs Can

Yenni

By Yenni
in Food Intolerance & Leaky Gut

Recommended Posts

Yenni Enthusiast
Yenni
Posted

I think I remember reading here that some Celiacs don't seem to do well on any grains or even rice. I just can't remember why. I seem to be one of them.

Does anyone know? Are there any theories?

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

Celiac.com Sponsor (A8-M):


darlindeb25 Collaborator
darlindeb25
Posted

I was just back to Michigan for a wedding and visit with my family. My mother guestioned my need to avoid nightshades and more or less feels I am nuts. So, upon returning home, I started researching nightshades and such. It seems that grains and nightshades all contain lectin, which to me seems to be a common ground for some of us. Gluten in itself, is a lectin. So, it doesn't surprise me that some of us can't tolerate other lectins. Research lectins and see what you think.

Serena53 Newbie
Serena53
Posted
I think I remember reading here that some Celiacs don't seem to do well on any grains or even rice. I just can't remember why. I seem to be one of them.

Does anyone know? Are there any theories?

I am not sure either, but I heard recently (within the last year) that grain which has been sprouted does not contain gluten, and is therefore safe. I was joyous. I tried some. I baked some bread which was sprouted grain. It seemed to work - or did it? Was I still lethargic and constipated due to the grain? Then I read a recipe for making sprouted grain bread, and the author made reference to the gluten needing to be fully activated which takes longer in sprouted grains. What is the truth here?

Also, I seem to do OK with rice, ie no bloating, gas, or constipation, however, I still feel tired or lethargic if I have consumed a lot of it.

My theory is that in part at least, I seem to be having a negative reaction to "sugars" be they from complex carbohydrate sources, or refined. I don't understand the whole picture, but sugars, and glutens are bad, at least for me, even though I have the damnedest time staying away from them, LOL.

Serena

Nancym Enthusiast
Nancym
Posted

I have a new theory about this and am currently testing it out on myself. I'm thinking that when we were sick from eating gluten/dairy we got a bacterial overgrowth in the small bowel. I broached that with my doctor and he was amenable to putting me on a specific antibiotic called rifamixin, which stays local to the bowel and isn't absorbed into the blood stream. It has been used successfully in cases of IBS and IBD. So I've been on it for 3 days today and my gut feels very calm. But it always seemed like eating anything starchy fired it up.

I'm going to give myself a few more starch free days then test it out by eating some starchy stuff and see if the IBS comes back. If not, I'm thinking I nailed the diagnosis and the antibiotic cured me.

You can read more about this by googling small bowel bacterial overgrowth or small bowel overgrowth.

I think there are other ways of treating this yourself including eating a no-starch/no-sugar diet for a few weeks. You might just be able to starve out the bacteria.

jerseyangel Proficient
jerseyangel
Posted
I have a new theory about this and am currently testing it out on myself. I'm thinking that when we were sick from eating gluten/dairy we got a bacterial overgrowth in the small bowel. I broached that with my doctor and he was amenable to putting me on a specific antibiotic called rifamixin, which stays local to the bowel and isn't absorbed into the blood stream. It has been used successfully in cases of IBS and IBD. So I've been on it for 3 days today and my gut feels very calm. But it always seemed like eating anything starchy fired it up.

I'm going to give myself a few more starch free days then test it out by eating some starchy stuff and see if the IBS comes back. If not, I'm thinking I nailed the diagnosis and the antibiotic cured me.

You can read more about this by googling small bowel bacterial overgrowth or small bowel overgrowth.

I think there are other ways of treating this yourself including eating a no-starch/no-sugar diet for a few weeks. You might just be able to starve out the bacteria.

I'll be very interested to see how you do on the Rifamixin. I'm being tested for SIBO in a couple of weeks, and this is the med my new gastroenterologist said he would use for me.

I'm still trying to find the cause of my many other food intolerances.

Jenny--A lot of the foods I'm sensitive to are lectins. The only one that I've been able to eat again is rice. I omitted it entirely for over 6 months (it was hard), and find that I can eat it again.

Ursa Major has a fantastic site that explains all about lectins. I'm not sure if it's on her profile page, but you could always PM her for it.

Some people just have problems with grains themselves.

Tim-n-VA Contributor
Tim-n-VA
Posted

One very likely scenario is that some celiacs have other conditions (diagnosed or not) that cause reactions to rice and other grains.

debmidge Rising Star
debmidge
Posted
I'll be very interested to see how you do on the Rifamixin. I'm being tested for SIBO in a couple of weeks, and this is the med my new gastroenterologist said he would use for me.

I'm still trying to find the cause of my many other food intolerances.

Jenny--A lot of the foods I'm sensitive to are lectins. The only one that I've been able to eat again is rice. I omitted it entirely for over 6 months (it was hard), and find that I can eat it again.

Ursa Major has a fantastic site that explains all about lectins. I'm not sure if it's on her profile page, but you could always PM her for it.

Some people just have problems with grains themselves.

....I mised it, what's SIBO?

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

Celiac.com Sponsor (A8-M):


nikki-uk Enthusiast
nikki-uk
Posted
....I mised it, what's SIBO?

Small intestinal Bacterial Overgrowth :)

jerseyangel Proficient
jerseyangel
Posted

Thanks, Nikki :D

Deb--I'm looking into why, after 2 years on the diet, I'm still reacting to so many other foods. I have read (there's an article about it here on this site) that SIBO is thought to be one potential cause of this.

https://www.celiac.com/st_prod.html?p_prodi...-48107588553.56

RiceGuy Collaborator
RiceGuy
Posted
I am not sure either, but I heard recently (within the last year) that grain which has been sprouted does not contain gluten, and is therefore safe. I was joyous. I tried some. I baked some bread which was sprouted grain. It seemed to work - or did it? Was I still lethargic and constipated due to the grain? Then I read a recipe for making sprouted grain bread, and the author made reference to the gluten needing to be fully activated which takes longer in sprouted grains. What is the truth here?

The fact is, if the flour doesn't contain gluten, it won't be elastic, thus won't work any better than gluten-free flours do without guar/xanthan gum.

Yenni Enthusiast
Yenni
Posted
  • Author

Sorry that is has taken so long for me to get back to this thread. I haven't been able to get online here.

Anyways...Seems the lectin could be my problem.

I am gonna look into Ursa Majors page.

Thanks all of you! Sorry again that it took me so long to reply.

Nancym Enthusiast
Nancym
Posted

I've had about a week post rifamaxin and my bowels are doing quite well! I had a lot of rice two days this week and I'm rock steady. The real test is to see if I can down a couple of vending machine bags of chips, that always seemed to make me sick before. I gain weight at the drop of a hat though so I'm trying to be good about the carbs.

Guest maybe I have celiac
Guest maybe I have celiac
Posted

What is D? Depression?

Murph Newbie
Murph
Posted
My theory is that in part at least, I seem to be having a negative reaction to "sugars" be they from complex carbohydrate sources, or refined.

Serena

It's likely due to intestinal Candida. Others mentioned it as "small bowel overgrowth", but to me that's not as specific.

I've researched this a lot and have come to believe that just about all long-term sufferers of celiac have Candida & leaky-gut (increased intestinal permeability).

And sprouted grain is still grain. It's the wheatgrass that has no gluten. But I wouldn't consume it cuz I think it's way too easy to get contaminated.

Murph Newbie
Murph
Posted
What is D? Depression?

Diarrhea.

You'll see D mentioned a zillion times on any celiac forum. And, hehe, if not abbreviated likely to be spelled wrong. :)

Guest maybe I have celiac
Guest maybe I have celiac
Posted
Diarrhea.

You'll see D mentioned a zillion times on any celiac forum. And, hehe, if not abbreviated likely to be spelled wrong. :)

Thanks, I noticed that when I have gone Gluten free, my "D" has been somewhat alleviated, I hope this keeps up!

Betty in Texas Newbie
Betty in Texas
Posted

Sounds like you are on to something but you have to becareful with the antibiotics because the can cause you problems by giveing you an inbalance in the good and bad bacterial that could cause a n bacterial overgrowth .

Archived

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

Go to topic listing

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

      Son's legs shaking

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

      Son's legs shaking

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

      Bob red mill gluten free oats

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

      Disaccharide deficient, confusing biopsy results, no blood test

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

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
  • 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
      Son's legs shaking

      By Jsingh · Posted

      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
      Son's legs shaking

      By lizzie42 · Posted

      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
      Bob red mill gluten free oats

      By trents · Posted

      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
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      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
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      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.