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luckygfme

Helpppp! :/

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It's only my second post here and i feel kind of wierd coming on and just randomly sharing my problems, but i have nowhere else to turn :unsure: ...i'm utterly at loss...I've had terrible malabsorption type diarrhea all day (gross i know) , second time this month, and i'm on a really strict gluten free, casien free, soy free diet and i check everything compulsively for those things. I actually don't have celiac disease , just gluten intolerance (two dqb1 0501 genes, does anyone else have that lovely combo?) , and i've been on a semi gluten free diet (only hidden gluten being ingested) since september, and then on a strict one since January. Well anyway, 2 weeks ago I got sick after eating wafles made with Red Mills all purpose baking flour, and today after eating pancakes made with Red Mill's Gluten Free pancake mix. I didn't even put eggs in, just egg replacer and no milk alternatives, just water. So i have no idea what could make me sick in that. I was eating it before and i was absolutely fine. And the only other things i've eaten are home made boiled chicken and rice. I'm so worn out and tired :o and i've racked my brains to try to figure out how i could've gotten sick from that and i'm all out of ideas. has this happened to anyone else on here????? :(

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I'm sorry this has happened twice. I have always trusted Bob's Red Mill. I do not do well with any of the gluten free flours. I find they are too heavy for my tummy. I stay away from flour, as much as I can. I used to make a very good cream of chicken soup and found it always upset my tummy and I knew it was gluten-free. gluten-free bread is too heavy for me, it always upsets me. Just a suggestion.


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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One thing that comes to mind is possibly xanthan gum. Do the things you've eten before getting silk have this ingredient in common? It may be just a coincidence, but might be worth looking into. Any other common ingredients might also be suspect, especially if you don't normally have them in the rest of your foods.

Other than that, CC is the only thing I can think of. Perhaps someone else can shed light on it for you.


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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Did you make the waffles and pancakes on a nonstick griddle? I've heard of problems with lingering gluten contamination of such surfaces.

Or perhaps you used a mixer, wooden spoon, plastic spatula, etc. you haven't used for anything else and which could be a source of cross-contamination.

Given the similarity of the two foods that made you sick, cross-contamination from something in your kitchen would be my first guess.

What did you put on top of these items? Something you don't eat otherwise? If so, that could be another possibility.

Of course, it could be the mixes, too :huh:

I have double DQ1 but not exactly the same genes as you do. I've tested intolerant to gluten, casein, soy, and also egg & yeast. Thank goodness Enterolab doesn't test for anything else :lol:

I just had a reaction the other day to an imported gluten-free pasta that contained lupin flour. From my research, I've found that reactions to this stuff has created enough of a problem that the European Union recently changed their allergen listing requirements to add lupin too. Folks sensitive to peanuts and soy often have a problem with it. Lupin flour seems to be an up-and-coming ingredient in European and Australian goods, replacing soy. Just a head's up ...


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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I would pretty much reply as hathor's comments...

I do have double DQ1 - let me tell you it is not good - do not buy into that thinking "it is only gluten intolerance" - it is as bad or worse than DQ2 or DQ8.

It seems to be the double DQ1 that is the problem.

I am very sensitive & I try not to buy anything bob's red mill makes.

Definitely not their almond flour it will make me very sick, from stomach ache to nausea & that bad overall feeling...

yep, stay away from the flours.

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Did you make the waffles and pancakes on a nonstick griddle? I've heard of problems with lingering gluten contamination of such surfaces.

Or perhaps you used a mixer, wooden spoon, plastic spatula, etc. you haven't used for anything else and which could be a source of cross-contamination.

Given the similarity of the two foods that made you sick, cross-contamination from something in your kitchen would be my first guess.

What did you put on top of these items? Something you don't eat otherwise? If so, that could be another possibility.

Of course, it could be the mixes, too :huh:

I have double DQ1 but not exactly the same genes as you do. I've tested intolerant to gluten, casein, soy, and also egg & yeast. Thank goodness Enterolab doesn't test for anything else :lol:

I just had a reaction the other day to an imported gluten-free pasta that contained lupin flour. From my research, I've found that reactions to this stuff has created enough of a problem that the European Union recently changed their allergen listing requirements to add lupin too. Folks sensitive to peanuts and soy often have a problem with it. Lupin flour seems to be an up-and-coming ingredient in European and Australian goods, replacing soy. Just a head's up ...

LOL it is good that they don't test for other things, or we'd be stuck eating only rice ;) hehehehe....The stuff i used were my own supplies so I doubt they were cross contaminated though i desperately wished that was the case the first time,. I was hoping a crumb just fell out of somewhere LOL because those mixes are pretty good but i' guess no more of that for me :(. thanks for your reply :) <3

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One thing that comes to mind is possibly xanthan gum. Do the things you've eten before getting silk have this ingredient in common? It may be just a coincidence, but might be worth looking into. Any other common ingredients might also be suspect, especially if you don't normally have them in the rest of your foods.

Other than that, CC is the only thing I can think of. Perhaps someone else can shed light on it for you.

Hmm, i eat gluten free bread with xantham gum and i haven't gotten sick from it yet, and i'm desperately hoping i don't as that would be just terrible, i'd have to go back to rice flats that taste like cardboard. I wonder if those mixes are just cross contaminated or something. I was thinking maybe sorghum flour, because it's in both of those things as well but i'm not sure if that can cause a reaction or not. ugh it's just so wierd, since like a while ago i ate a whole bunch of stuff made with red mills and i was fine, and then all of a sudden BOOM. LOL thanks for replying :)

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I remember reading on this forum that a lot of people have had trouble with Red Mill flours. Cross contamination I think.

Oh really? UGh, that's terrible, thanks for letting me know though, i was reallythinking i'm just becoming some crazy freak of nature who can't tolerate anything :/..thanks so much for replying

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I would pretty much reply as hathor's comments...

I do have double DQ1 - let me tell you it is not good - do not buy into that thinking "it is only gluten intolerance" - it is as bad or worse than DQ2 or DQ8.

It seems to be the double DQ1 that is the problem.

I am very sensitive & I try not to buy anything bob's red mill makes.

Definitely not their almond flour it will make me very sick, from stomach ache to nausea & that bad overall feeling...

yep, stay away from the flours.

aren't we lucky hehe? I wish they knew more about celiac disease and intolerance and the genes...I'm very sensitive also and i was actually surprised that i don't have the celiac genes because i've been SO sick. The worst part is that since i tested negative for celiac, doctor's just pass off the sensitivity as "in my head"....Iguess i have to stay waay from their stuff too, i had no idea about them i thought they were pretty safe.

Thanks for replying :)

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Did you put vanilla in those recipes? Vanilla was a problem when I first went gluten free. The brand should have been gluten free, but the bottle itself must have been crosscontaminated. Or in the beginning all types of alcohols and distilled vinegars were causing problems for me.

You are still new enough that keeping a food diary could prove you are having other sensitivities, not just to gluten.

I have heard too many people having problems with those mixes.

L.

Too much xanthan gum can have a laxative affect.


Michigan

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Did you put vanilla in those recipes? Vanilla was a problem when I first went gluten free. The brand should have been gluten free, but the bottle itself must have been crosscontaminated. Or in the beginning all types of alcohols and distilled vinegars were causing problems for me.

You are still new enough that keeping a food diary could prove you are having other sensitivities, not just to gluten.

I have heard too many people having problems with those mixes.

L.

Too much xanthan gum can have a laxative affect.

I have your same genes and I feel sometimes I'm intolerant to FOOD! No good advice, just maybe to keep a food log- I've kept one for nearly a year now and it has actually helped find culprits. It's second nature to me now to write down what I ate all day. (Not too hard- I don't eat much!) Yes, I, too, wish they knew more about gluten intolerance. Hope you feel better soon. For me, only time helps.

lisa

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I called Bob's Red Mill one day and if the flour says gluten-free on the label then it is made in an entirely gluten-free facility. Their soy flour is made in the same facility as gluten flour so that's why it doesn't have the gluten-free label. So I'm not sure how CC could happen there, but I guess anything is possible.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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Also remember that it can take a long time to get better. Did you start your strict gluten free diet THIS January? If so, 3 months may not be enough time for your gut to heal.

But I agree, stay away from those flours@

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I got really sick on Bob's Red Mill Hot Cereal I wanted to make sure that's what it was so I tryed it again it took me a week and half to get over it I swelled bloated and horrable gas and intergestion. I don't trust any of the gluten free breads. I been gluten free for 3 and !/2 years and finally tryed that Bob stuff but I don't want any more I will just stick to my regular old food some times rice hurts me .

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Did you put vanilla in those recipes? Vanilla was a problem when I first went gluten free. The brand should have been gluten free, but the bottle itself must have been crosscontaminated. Or in the beginning all types of alcohols and distilled vinegars were causing problems for me.

You are still new enough that keeping a food diary could prove you are having other sensitivities, not just to gluten.

I have heard too many people having problems with those mixes.

L.

Too much xanthan gum can have a laxative affect.

i didn't put any vanilla..i did a couple of times and it just gave me a stuffed feeling so i stayed away. I just had another reaction today to something, god knows what so i guess i will have to keep a food diary.

Thanks for replying :)

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I have your same genes and I feel sometimes I'm intolerant to FOOD! No good advice, just maybe to keep a food log- I've kept one for nearly a year now and it has actually helped find culprits. It's second nature to me now to write down what I ate all day. (Not too hard- I don't eat much!) Yes, I, too, wish they knew more about gluten intolerance. Hope you feel better soon. For me, only time helps.

lisa

oh wow i'm starting to feel that way too, that i'm just intolerant to food. what other stuff are you intolerant of? i'm starting to think i'm having reactions to tapioca, but is that even possible?

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I got really sick on Bob's Red Mill Hot Cereal I wanted to make sure that's what it was so I tryed it again it took me a week and half to get over it I swelled bloated and horrable gas and intergestion. I don't trust any of the gluten free breads. I been gluten free for 3 and !/2 years and finally tryed that Bob stuff but I don't want any more I will just stick to my regular old food some times rice hurts me .

oh wow that sucks, i'm sorry :(. I'm staying away from them for sure, i'm still feeling the affects from last time i ate their stuff and it's been like 3 days :(

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oh wow that sucks, i'm sorry :(. I'm staying away from them for sure, i'm still feeling the affects from last time i ate their stuff and it's been like 3 days :(

I don't digest legumes, nightshade vegetables corn or tapioca well at all. I've seen several others post here that tapioca bothers them as well, so yes, it is possible. I stick to really basic ingredients and cook most all of my food from scratch. Now when I add anything new I do it ONE painstaking ingredient at a time! It's a drag, but, it's the only way to weed out culprits that I've come up with. Good luck!

lisa

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