Old-timers Help! Reacting Again!

[oceangirl]

Hi again!

I hope my last post didn't sound cranky- I don't mean to be cranky! I appreciate any and all suggestions!

lisa

[kbtoyssni]

Looks like you've got the chemical stuff taken care of! I also use Seventh Generation or vinegar/water.

What about getting all your vitamin levels checked if you go to the doc? Maybe you're missing something.

[jerseyangel]

Hi again!

I hope my last post didn't sound cranky- I don't mean to be cranky! I appreciate any and all suggestions!

lisa

Lisa, of course not! We all understand feeling ill and not knowing why...Just take care, and please keep us posted on what you find out. I hope things begin to resolve very soon

[happygirl]

oceangirl,

I think you've been given some good advice, and I certainly hope that you find the answers...whatever they are!

Someone noted about reacting to so many foods that you end up with nothing to cut out---and that was me last summer/fall, after being on the diet 1.5-2 years. I was eating 8 foods, no oils, spice, fats, etc. I went through the wringer with every possible digestive disorder test done---many were done multiple times. I was eventually tested for Lyme Disease and other infections (both viral and bacterial) and tested positive for infections like mycoplasma, too high levels of EBV, babesia, erhlichia....and a bunch of other things that are related to a tick bite (which I never saw, but my tests results show clearly otherwise). It took over a year from the beginning of my symptoms to get a diagnosis---and I don't even fit the "typical" symptoms.

The reason I share what I went through is to encourage you to keep searching for whatever it is that is causing your symptoms and pain. I think the frustration of not know what is going on is the worst part of it, in many ways. But, there IS an answer out there.

Some things that you might consider testing for, or seeing if it fits your symptoms. These were all ruled out for me.

Crohn's

Ulcerative Colitis

Microscopic Colitis

MS/lupus/RA/diabetes/other autoimmune disorders (using ANA, CRP, etc tests)

Eosinophillic disorders (www.apfed.org)

h.pylori/ulcers

Small Bacterial Overgrowth (SIBO)

parasites

bacterial/viral infections

[oceangirl]

oceangirl,

I think you've been given some good advice, and I certainly hope that you find the answers...whatever they are!

Someone noted about reacting to so many foods that you end up with nothing to cut out---and that was me last summer/fall, after being on the diet 1.5-2 years. I was eating 8 foods, no oils, spice, fats, etc. I went through the wringer with every possible digestive disorder test done---many were done multiple times. I was eventually tested for Lyme Disease and other infections (both viral and bacterial) and tested positive for infections like mycoplasma, too high levels of EBV, babesia, erhlichia....and a bunch of other things that are related to a tick bite (which I never saw, but my tests results show clearly otherwise). It took over a year from the beginning of my symptoms to get a diagnosis---and I don't even fit the "typical" symptoms.

The reason I share what I went through is to encourage you to keep searching for whatever it is that is causing your symptoms and pain. I think the frustration of not know what is going on is the worst part of it, in many ways. But, there IS an answer out there.

Some things that you might consider testing for, or seeing if it fits your symptoms. These were all ruled out for me.

Crohn's

Ulcerative Colitis

Microscopic Colitis

MS/lupus/RA/diabetes/other autoimmune disorders (using ANA, CRP, etc tests)

Eosinophillic disorders (www.apfed.org)

h.pylori/ulcers

Small Bacterial Overgrowth (SIBO)

parasites

bacterial/viral infections

Thank you, Happy Girl. Yes, I live in an area where Lyme is endemic and have several family members, friends and my DOG who have it- so I will keep that test in mind! Patti, Lisa, you are very kind. If tonight is like the last three, I'll call my doc tomorrow! Thank you so much and I hope you are all doing very well!

lisa

[Lisa]

Thank you, Happy Girl. Yes, I live in an area where Lyme is endemic and have several family members, friends and my DOG who have it- so I will keep that test in mind! Patti, Lisa, you are very kind. If tonight is like the last three, I'll call my doc tomorrow! Thank you so much and I hope you are all doing very well!

lisa

Call your doctor yesterday! Please let us know. xxoo

[mftnchn]

Wow, you are in a lyme endemic area, I would agree absolutely that should be ruled out. There are enough of us around with both lyme and celiac that might be helpful to you if you do have that.

[oceangirl]

Hello Everyone,

I thought I'd tell you that I spoke with a woman at Erewhon today who told me my rice cereal is NOT made on dedicated lines. (I eat a big bowl EVERY morning) She said they clean in between and then test for gluten and she thinks they allow 10 parts per million and she THINKS the standard is 200 parts per million. Can anyone comment on this? I am going to take the cereal out and see what happens. It's hard to believe you could react to so little but I do know I'm hyper-sensitive! Last night, much better- no horrendous pain, wondering if it could be ovulatory (is that a word?) pain along with the digestive hoo-ha. Anyway, I thought I'd let you know and now I search for something to eat for breakfast! Can't eat a LOT of fruits or veggies- too much fiber and haven't tried putting eggs back in but perhaps this is the time! The thought of meat or fish in the morning is yucky! And I am remembering to go to the doctor if things keep up.

Take good care.

lisa

[jerseyangel]

Lisa,

I had a feeling about that cereal after what I found out about their other product. Hopefully you'll start feeling better soon--it took some time for me to feel better after being CC'd over time.

I still have the brain fog 2 weeks later--but my stomach has settled down considerably.

I have to get to an appointment, but I'm glad I saw this before I left.

[gabby]

Can I chime in with a comment on eating meat/fish for breakfast? I do it all the time and it really isn't bad at all. Honestly. Give it a try. I usually cut steak up into very thin strips, and pan fry until crisp (or rare if that's how you like it). When done, throw in some chopped zucchini or a handful of chopped bell pepper (if you can eat those), and stir fry for a couple minutes....and voila, meat for breakfast! Try this also with chicken. And tuna-fish with a bit of olive oil, chopped onion, a squeeze of lemon, salt and pepper, all rolled in big leafs of fresh lettuce. Those are great on a hot summer morning.

And I highly recommend dips for breakfast. Take a bit of leftover cooked beef or chicken or pork or even a couple boiled eggs, add some olive oil and mayo (if you can have that), a smidge of mustard, a couple dill pickles, salt/pepper, and whiz it all up in a chopper/blender until creamy. This is great spooned over veggies, or just eaten like that.

Anyways, hope you find out what is going on and you get relief soon.

[gabby]

Oh, and forgot one other thing.... a possible source of gluten: door handles! I was getting glutened regularly by my microwave door handle, the dry goods door handle, and the worst culprit of them all.....the fridge door handle.

[oceangirl]

Gabby, Patti,

Hi! Thank you for your encouragement! I'm anxious to see if it helps when I take it out. I really wish there were more totally gluten-free dedicated companies! Gabby, thanks for the breakfast ideas; I will try them. We have a gluten-free household because I was always getting cc'd by accident. Even the pets are as gluten-free as I can get them for now!

Have a very good day,

lisa

[bluejeangirl]

Lisa, I would do two things first find a cereal you like that is made gluten free and without c.c. (in dedicated lines.) But I would also take out all the nuts for awhile, maybe 2 weeks. Then reintroduce them eating enough to make sure this also didn't contribute to your troubles. I seem to tolerate a few nuts maybe on a salad but if I eat them as a snack alone I'll have a problem with pain in my lower part of the colon like you. Maybe its a quanity thing or the fact that I'm eating them alone I don't know. I do know it hurt alot, and felt just like a glutening.

Your husband looks like James Taylor back in his hey day.

Gail

[gfpaperdoll]

Hi Lisa,

I am also double DQ1, I just passed my 3 year gluten-free mark. Now also DF.

I have spent a lifetime battling food allergies. (now 60)

I want to encourage you to drop that cereal like a hot potato !!

I do not eat hardly any grains - & certainly no cereal. ALL that stuff is cross contaminated before it even gets to the manufacturer.

I am VERY sensitive to grains & to the slightest hint of cross contamination.

I can bake very tasty great looking stuff that my gluten eating friends love, but it makes me sick as a dog. I have recently cut out the tapioca flour, but did not notice a difference...

Sometimes I eat broccolli, carrots, & grape tomatoes for breakfast or fruit & nuts or leftovers.

I can eat peanut butter but not roasted peanuts in a can, weird, I know.

What blood type are you? I highly recommend the book "Eat Right for your Blood Type" I just reread this again from cover to cover. Can you eat white potatoes? I cannot.

After you get everything checked out at the doc, if you think you are in menapause, start exercising every day & do not eat heavy meals at night.

Let us know how you are doing. I am always interested in us double DQ1 people.

[Lisa]

Lisa, I would do two things first find a cereal you like that is made gluten free and without c.c. (in dedicated lines.) But I would also take out all the nuts for awhile, maybe 2 weeks. Then reintroduce them eating enough to make sure this also didn't contribute to your troubles. I seem to tolerate a few nuts maybe on a salad but if I eat them as a snack alone I'll have a problem with pain in my lower part of the colon like you. Maybe its a quanity thing or the fact that I'm eating them alone I don't know. I do know it hurt alot, and felt just like a glutening.

Your husband looks like James Taylor back in his hey day.

Gail

Whatcha mean, back in his hey day? He's still pretty hot now, but then he's a Carolina boy.

[jerseyangel]

Whatcha mean, back in his hey day? He's still pretty hot now, but then he's a Carolina boy.

I agree--I love James Taylor, and come to think of it, Lisa's husband does resemble him

[oceangirl]

I agree--I love James Taylor, and come to think of it, Lisa's husband does resemble him

Hi, Guys,

Wow, I have to say I feel as if I have these wonderful caretakers who I don't really know, but think I would know if I saw somewhere- even without any pictures! GFPaperdoll, thank you for all those tips. I do not intend to eat that cereal again; today is my first day without it. I did have a Lundberg rice cake with homemade strawberry jam on it along with my trusty banana! I appreciate what you are saying about grains and I will be careful of the rice- it's the only one still "in". But it has seemed I can tolerate some Tinkyada and Lundberg rice cakes- we'll see. I CANNOT tolerate rice if I just cook it- even overcook it myself! Very weird, but true. No, I, too, cannot tolerate white potatoes (bummers) and I am VERY familiar with EAT RIGHT FOR YOUR TYPE; I have it. And I am O Positive. I've found it very interesting that even before I knew I needed to be gluten-free the type O food dos and don'ts were strikingly accurate for me! Interesting. Yes, Double DQ 1 does seem to, how shall I say, take the cake? I just wish it wouldn't mean "take just about everything else to eat as well"!!!

Gail, yes, I think nuts can be too harsh and I've decided to only have a few for a couple of days and then not for a bit. That's a bummer too because they add such a helpful "fill you up type thing". Usually if I have a Larabar, I only have a third to one half of it, never the whole thing as I don't do real well with too much roughage.

Gail and Patti, I don't know if I should tell M he looks like James Taylor- he's a HUGE fan; it could go to his head! He does play guitar; I'll have to look more closely next time he plays!

Oh, another half-decent night. Yay! Thank you all who have read this long-winded thing thus far and I wish you all the very BEST health, too!

lisa

[oceangirl]

Oh, GFPaper Doll, Thank you about the menopause thing. I have been a runner for, Yeow!, 27 years (every day 2 miles) and study dance as well so I hope that piece of the menopause stuff is in place! I hope my knees hold out and I am just thankful that I've been able to move. That's another interesting thing about the Blood type diet- Type O's need to MOVE and that has always been true for me.

Take good care,

lisa

[sfm]

Hi All,

This is a particular plea to those of you who've been gluten-free for awhile. I am nearly a year gluten-free, one year and 4 months gluten-lite and have just had the WORST month all of a sudden. I am gluten intolerant double DQI, had positive bloodwork with negative biopsy after 4 months glutenfree, and soy, corn, gluten, legume and mostly dairy-free. I really haven't had any really new things to eat but suddenly the crampy pain and bloat and left hip pain are back with a vengeance and I feel hopeless. No new cosmetics. The only thing I think exacerbating some symptoms is I am definitely going through peri-menopause. I keep a detailed food log and can find no obvious culprit. I do eat rice in the form of Erewhon's Crispy Brown Rice and Tinkyada pasta. I eat raw cane sugar and no other sweets except a few enjoylife chips sometimes. The only recent introductions would be watermelon, more carrots than usual and whole nuts. ANY ideas as to what's going on would be so greatly appreciated, or if you've experienced something similar yourself. I'm starting to wonder if there's just some other thing wrong with me!

Thank you in advance!

lisa

I also began to eat a lot of nuts after going gluten free (about 8 months now). Recently I began to have symptoms very similar to glutening and couldn't figure out what was going on. I've been to an allergist and another gastroenterologist.

It turns out that I am allergice to walnuts - digestive upset can be one of the signs. What eventually hit me over the head was a case of hives after eating a yummy gluten free walnut crunch - this was after a couple of months of trying to figure out what was bothering my stomach.

I know how frustrating it is to eliminate yet another food, but it might be worth trying.

Sheryll

[sfm]

Hello Everyone,

I thought I'd tell you that I spoke with a woman at Erewhon today who told me my rice cereal is NOT made on dedicated lines. (I eat a big bowl EVERY morning) She said they clean in between and then test for gluten and she thinks they allow 10 parts per million and she THINKS the standard is 200 parts per million. Can anyone comment on this? I am going to take the cereal out and see what happens. It's hard to believe you could react to so little but I do know I'm hyper-sensitive! Last night, much better- no horrendous pain, wondering if it could be ovulatory (is that a word?) pain along with the digestive hoo-ha. Anyway, I thought I'd let you know and now I search for something to eat for breakfast! Can't eat a LOT of fruits or veggies- too much fiber and haven't tried putting eggs back in but perhaps this is the time! The thought of meat or fish in the morning is yucky! And I am remembering to go to the doctor if things keep up.

Take good care.

lisa

Lisa-

How depressing - I LOVE that Erewhon crispy rice cereal....

Arrowhead Mills make both puffed rice and puffed millet cereal - not quite the same, but it's not a bad substitute. No added sugar - I'm hypoglycemic, so I usually just add splenda, but you could probably add fruit.

Sheryll

[oceangirl]

Sheryll,

Thank you, too. I will try to lay off the old nuts. I know, I am sad to see that cereal go! I thought I'd read on here that Arrowhead Mills can be a bit sketchy in terms of the cc? Am I wrong about that? I hate to bring up another possible problem, but it seems quite awhile ago I'd read that somewhere.

Best of health to you!

lisa

[jerseyangel]

Arrowhead Mills is not a dedicated facility. I spoke to them just last month while on my search for a safe hot rice cereal.

Lunderg Farms Hot and Creamy Rice Cereal is made in a gluten-free facility.

[gfpaperdoll]

I love Lundberg Anything!!! I eat their rice & their rice chips - sea salt. I seem to be able to eat rice.

Lisa, do you get the bags of long grain white rice? Do you wash it three times in cool water before cooking?

That eat right book was spot on for me also, I am AB+ blood type.

Our double DQ1 must have something to do with our activity. I was also a dancer for years (broke my knee two years ago). I was in an exhibition precision clogging team & did country western (took lessons for years) polka etc. I was also into running but developed into a hiker. I hiked 10 miles the day before I broke my knee. & was walking 5 miles a day.

If you can eat corn, I recommend Mission Brand White Corn Tortillas as a bread substitute. I also eat white pop corn - get the bags of popcorn & pop it myself - no microwave.

I tried the Lara bars & could not eat them. Instead I just keep a supply of really nice dates, nuts & dried fruit on hand.

[oceangirl]

GFPaperDoll,

Very cool- I've always wanted to learn clogging! I study jazz, ballet and modern- how boring am I? I'm thinking of trying something like line-dancing- I hear it's so much fun! Thanks for the rice tip. I make my rice milk out of Lundberg sushi rice; maybe I should try washing it three times and then eating it. No, I forgot, I'm also corn free- what a drag! You sound like an extremely fit person! Running helps me feel better and quiet my mind that has trouble shutting up sometimes. I'm not into competition and I like to run alone always, outside. People ask if i want a running partner but I like the solitude. I may try corn again someday if I can stop reacting so much! Thank you again!

lisa

[Karen B.]

---snip----

Lunderg Farms Hot and Creamy Rice Cereal is made in a gluten-free facility. All of their products are except for their rice chips.

Their Sesame Teriyaki RiceXpress