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Yenni

Why Some Celiacs Can

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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?


One Celiac gene and one gluten intolerance gene (HLA-DQ 2,1).

Grain free, casein free, soy/legume free + a bunch of allergies I have had since I was a child (stone fruits, nuts..carrots)

Following the Specific Carbohydrate Diet, but no nuts, legumes or casein.

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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.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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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

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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.

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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.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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

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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?


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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

Small intestinal Bacterial Overgrowth :)


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

black_cat.gif

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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


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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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.


A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

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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.


One Celiac gene and one gluten intolerance gene (HLA-DQ 2,1).

Grain free, casein free, soy/legume free + a bunch of allergies I have had since I was a child (stone fruits, nuts..carrots)

Following the Specific Carbohydrate Diet, but no nuts, legumes or casein.

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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.

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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.

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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. :)

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Guest maybe I have celiac
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!

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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 .

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