quincy

I add extra vanilla and a little brown sugar. My gluten eaters always love it.

I had the same problem Discodiver, you sound like me a few months ago. I thought if its gluten-free it wont make me sick. but would eat the pancakes and still be wracked with pain. it took awhile for me to tolerate the tapioca and the xanthan gum, which if you do any research on, is a laxative....

I have heard that products that use guar gum are better but eventually you will adjust most likely to the xanthan and tapioca. I had to stick with boiled red potatoes, white rice, and tinkyada fettucini rice pasta for the first month. buy a lean cut of steak, such as filet. the smell of the meat on the stove just got my appetite going. that with the potato kept me alive for the first 3 mos. I lost 10 pounds at first and all my clothes were hanging off of me, but since april I have gained it back. hope that helps.

My sister and her daughter live in Sneads Ferry, right near Jacksonville both are gluten-free. Her daughter is going into first grade! Let me know if you want to meet, she is excellent at gluten free cooking!

I am staying in Wilmington visiting my sister for a few weeks and returning home soon.I found several places that catered to Celiacs. One was a food co op called Tidal Creek. They are located on Oleander. They label all their shelves to indicate the item is gluten-free. Their salad bar dishes are all indicated if gluten-free and warnings not to mix utensils. Another place is Lovey's Market in Landfall shopping center. Their salad bar also lists ingredients as gluten-free free or not.

Harris Teeter has a good selection of gluten-free foods as well. THey even carry the gluten-free beer which is very good.

hope that helps...!

Well, I can't say that it has helped at all with coping with a gluten free lifestyle... but I do love to knit!

I have started up a stitch 'n b*tch group in my local area and - as the organiser - I damn well make sure that we meet at a cafe that has lots of gluten free options. I need my gluten free cake when I knit.

this is amazing. when I first was diagnosed and my anxiety was sky high, I just came up with the idea that I should learn to knit to keep my mind in a certain state. someone at my work says she will teach me. I have the needles and yarn sittin in my car for several months now.... haha. maybe its time to put them to use... Thanks!!

Forgive me if this has been covered here, but my sister (celiac) just had this problem. I encouraged her to try corn tortillas. She purchased Food for Life sprouted corn tortillas at Whole Foods after reading the ingredients (Organic Sprouted Whole Kernel Corn, Filtered Water, Sea salt, Lime) and discussing it with a Whole Foods employee (they used to be stored next to the other gluten-free tortillas). She had a terrible reaction after having the tortillas, so I encouraged her to contact Food for Life. When she went to their website, she found the tortillas under the "Gluten Free/Wheat Free" section. The package doesn't say gluten-free, but it says "gluten free, flourless" on the website. However, while browsing the rest of the website, she found this comment relating to the non-gluten breads:

"sprouted in filtered water with a touch of organic malted barley and sea salt'

When she contacted Food for Life, she received the following response:

Thank you for your email. I am sorry that you obtain a stomach ache from the Organic Sprouted Corn Tortillas. That product does contain gluten. We offer a Wheat Free/Gluten Free Whole Grain Brown Rice Tortilla that

Hi... I had terrible anxiety for several years before going gluten free. I'm doing somewhat better now but in the process of going gluten-free, I discovered that soy seems to makes me very anxious indeed. I've read that other people experience this too, so it may be worth eliminating it from your diet to see if that helps. Sadly, it lurks in many foods, just like gluten.

my anxiety peaked just at the time of dx and lasted for several months. I mean, the worst anxiety you can imagine. I am on prozac and finally do not need to take klonapin as much anymore. Several things are related to the anxiety: first, the low vitamin D levels and also the poor absorption of Omega 3 fatty acids that you get from fish oil and other essential fatty acids. My doctor of funtional medicine said those 2 elements have been missing from my body chemistry and I finally just stopped producing enough seratonin to feel that sense of well being...

my advice to to get your vit d levels checked etc. I hope to be off the anti depressants soon once my gut heals and fully absorbs the efa's and vit d.

How is it that this celiac/Gluten intollerance seems to happen overnight? I seemed fine up until last year when I first began to notice problems. For 46 years I ate bread, cake, pie, croutons...etc with no problem. Then BAM..overnight it seems I'm allergic to the stuff. Stress, allergies, environment? Anyone have an idea? I would love to hear your story.

I was 48 when I found out. that was 4 mos ago. Symptoms of cramping and pain when younger but nothing major. some alopecia that went away and always had canker sores from childhood.

last year I decided to get my cholesterol lower so I went on a high fiber diet: oat meal, and high fiber grains. and thats when it all just hit. few years ago started terrible anxiety and depression. biopsy and blood test confirmed. first 3 months were HELL!! mind-numbing anxiety. ataxia walking into walls, off balance, muscle and bones ached. found out I had osteopenia. Doc says must have had this since 6 or 7 years of age..... hard to believe all of this, but its happening to me and all of us... hard to believe these stories of people going through surgeries etc when a simple blood test could confirm celiacs..... our medical doctors need to wake up to what is happening with gluten in EVERYTHING!!! causing a population's genetic trigger of gluten sensitivity.....

I am traveling and went to a health food store cafe. they had gluten free wraps and rolls for the veggie burgers and quesadillas. I got home and ate it and began to realize that the tortilla was grilled and decided to call the place. The kid that answered said most likely the tortilla was grilled on same surface as the gluten breads!!!

i am so angry at myself and at them. every salad bar item is labeled gluten-free so I "assumed" they were in the know...

so is there anything I can take now or do for the onslaught of pain and D? I have a special powder that my functional medicine internist gave me called GI revive that has herbs and such that helps heal the gut. any other home remedies that anyone uses?

by the way, has anyone successfully sued an establishment like this that claims to be gluten free? I am on vacation and not near my docs so I am upset

thanks group

Yes, that's what I was given-the 50,000, iu one per week. I'm supposed to take it for 8 weeks. I'm wondering if eventually my body will be able to extract the vitamins it needs naturally, once my villi are healed. Also, my RBC count is low, but my iron levels are ok......what would I take to increase my red blood cells?

Thanks for all the responses, by the way:)

my endo doc put me on 50,000 iu's twice a week for 6 weeks, then a re test of my levels. I wanted the D3 but she told me it wasnt available in this dosage. once you get your levels up then you can do maintenance at 2000 or so a day with D3.

it is also recommended to get a bone density test and to take calcium plus D twice a day. my bone density test revealed osteopnenia in my right hip bone and I am a male who works out and runs... it was quite a shock.

red meat is good for red blood cells and so is spinach etc.

I have recently been diagnosed as gluten/casein sensitive, and I can't believe I did this, but I actually purposely ingested something called Whole Grain Biotic, sold by Donna Gates on her Body Ecology Diet website. The reason I thought it was going to be OK is because she said that although there there were 7 ppm of gluten in her liquid probiotic (a fermented liguid that actually had the taste of beer), that 7 ppm was well below the 20 ppm threshold to call it gluten free, and that the fermentation process renders the gluten non-reactive, or somthing like that. In any event the website states that this is the probiotic to take if you are gluten sensitive or intolerant. So I figured, OK I need a probiotic in the mix, so I ordered it.

Luckily I only took a teaspoon as a test. I haven't put ANYTHING in my system (or outside of my body for that matter) in the last few weeks that had any suspicion of containing gluten or casein, only unprocessed non-reactive foods, and my diet has consisted of only 12 foods total. I always do a taste test and wait a few hours when including a new food, I don't care what it is. But within ten minutes of taking the teaspoon, I developed a reaction, and for me, that's dizzy, anxious, & blurred vision. And I had been feeling so great the past couple days. Here it is, an hour later, and while the first reaction was bad only for a couple minutes, I still have that familiar feeling as if my skin is jumping with a bit of a light head. I've had it much worse than this, so I am sure I'll be OK, but like I said, I feel like a bonehead.

I don't know if I am still just super sensitive, being so new into my new way of eating (that I actually love because it makes me feel like I could conquer the world, when before, the world was a scary bother for me with my main overt symptoms being largely neuro-connected.

Of course, I never intend to re-ingest the "Whole Grain Biotic" again, but wanted to let others know in case they were considering it. I know everyone is different. And like I said, perhaps I am super sensitive.

So here's the problem now. I still need a probiotic and also vitamins, preferably LIQUID vitamins, that are gluten free, casein free and even soy free, as I seem to react a bit to that too. I know I need to do something because I need to supplement my sparse diet along with something to help my intestines heal.

Any ideas or comments?

sorry to hear of your trouble. I know what its like to be doing well for a few days and then get hit by something.

my nutritionist recommended a probiotic that only she can order. if you have a nutritionist ask him/her about that.

also, I just came from my appt at the celiac disease center at columbia univ. and I was told to order a multivitamin called Freedavite. you can go to it online.

hope that helps. oh, if it is ok to mention the probiotic is by Prothera. google there website, but as I mentioned, only a dietician or nutritionist can order it.

Go easy on Valerian and Kava. Both are hard on the liver. It is unwise to use Valerian daily. Passion flower (P. incarnata) leaf and root extract is another anxiolytic but I don't know much about safety. The fish oil and inositol I mentioned are considerably safer than herbals.

for some reason i have been unable to tolerate fish oil, though I used to be able to with no problem. I am hoping that it wont give me D in the future so I can get my HDL's back up again.

I will try the b vitamin group which I believe is where inositol comes from ?

Just thought I would share a positive experience I had recently. For the vast majority of the population, eating asparagus makes your pee smell. As a geneticist, I have learned that there is a very small proportion of the population with a genetic condition that results in no smelly pee after eating asparagus. I have gone through life thinking I was one of these unique people. But, 4 months gluten-free after the celiac diagnosis, my pee now smells after eating asparagus! It is amazing the little ways we can tell our body is healing. I guess I just wasn't absorbing the nutrients before with all the intestinal damage. Kind cool!

mine always smelled even though I was dx'd last month. maybe the damage not too bad then?

interesting that I have found it to be a veggie I can tolerate unlike brocoli which I love, just is too gassy for my stomach now... maybe soon I can go back to the broccoli...

Name brand Xanax is not gluten free. However alprazolam, the generic form can be found gluten-free. I have PTSD and have been on it now for over a year and a half with great success. I have my pharmacist check it at each refill. I now only take 1/2 or 1/4 tab unless I have a excaberation where I need more. The med and a good psychologist and psychiatrist have helped a great deal. I don't tolerate the SSRI's either, they actually make me worse. So do antidepressants. I am now able to lead a pretty much normal life after I bottomed out to the point where I couldn't even go into my own yard.

thanks for the feedback. I am still waiting for my lab work to come back for iron, copper, and vitamins. I know for sure that my D is quite low and am taking 50,000 IUs for that.

the dizzy feeling has returned after going away for a few weeks. the anxiety is almost unbearable but I refuse to take benzodiazopenes anymore, they have a terrible after effect.

I am looking into the different remedies everyone has mentioned. Thank you!

I have seen threads on this topic before but thought I would bring it up once more for feedback.

Just prior to my dx I was taking the xanax I had sitting in my medicine cabinet more often than I preferred.

It was just a small dose but by the time I was told I had Celiac I had to take it every day but found it backfired on me by the next morning.

I would wake up with the worst dizziness and brain fog. I was told to stop using my very small dose of xanax and was given Klonapin instead!!! But that does the same thing to me... oy. don't doctors have anything else in their arsenal for us Celiac sufferers?

has anyone gotten stuck on this merry go round? the smallest dose makes me drowsy and the hangover is horrible. feels like I am walking on a rocking boat which lasts most of the morning and afternoon. you have to take more to get over the rebound hangover and that is not good at all, or tolerable.

I wish there was something better, even a natural supplement to control the bouts of anxiety until my gut heals. I would venture to say I am very low on seratonin but cannot tolerate the SSRI's

any comments advice please post!!

Okinowan's (sp?) eat a lot of pork and use animal fats for cooking. Mediterranean cuisines feature plenty of organ meats with ample amounts of fat and cholesterol. Yes the fat profiles of our grain fed animals are completely off balance but at this point the research points to the ratio being more important than the amounts meaning that if you are consuming the bountiful amounts of omega-6s in cheap meats you can easily offset this with fish oil supplementation (which is awesome).

One fantastic thing about the Cretan diet (where the Mediterranean diet specifically comes from) is the notion of replacing all of your polyunsaturated cooking oils with the monounsaturated cooking oil from olives.

The actual cause for the decrease in heart disease in the Crete/Greece area is most likely closely related to the relaxed work environment of those two regions, a relationship that has been found across almost all countries.

Crud... another thread hijacked.

have you tried the coconut oil, cold pressed etc. not sure if the medium chain stuff is good. i have tried it recently and it made me sick, but then everything other than H20 or purple carrot juice makes me ill. soy milk yuk, coconut milk, yuk.

i am going to try bobs red mill gluten free oats and see the result. cautious though as contaminated oats and high grain cereals got me here in the first place...

Hello everyone. I'm new here, and have been reading all the posts for the past several days. I've got a "gluten-free" notebook and I've been taking good notes with all your helpful advice. My story is that I suddenly, about three months ago, got all the intestinal symptoms that you all have described. I thought I'd eaten too much fiber the day before, because I had added all-bran to my morning cereal, thinking I hadn't been eating enough fiber. Then I started getting bad headaches (I never get headaches), and fatigue, and weakness in the morning, and bloating. I finally went to the doctor, thinking I had colon cancer (a worrier by nature, lol) even though most of those symptoms are not present in colon cancer. The first thing she said to me was "okay, sounds like a gluten problem to me...either that or lactose, or both." (after reading about some of your problems in getting diagnosed I'm thinking that this doctor is a keeper!) I said "but I've never had allergies." She said "well, this is not the same thing as an 'allergy', plus for some reason we've been seeing an increase in people with these problems. Let's do the tests."

So here I am. I guess I don't have any specific questions at the moment (since a lot of what I might have asked has already been answered by someone on this board... ) Except I would like to know about traveling, since summer is coming up. But I'll ask that in a new thread so the subject title matches what the post is about.

Thanks everyone for all the wonderful advice! It's SO overwhelming at the moment, but so worth it. Even in just the short time I've been trying to stop the gluten I feel better. Not back to normal yet, but definitely better.

I am also recently dx'd. too bad I didnt have a good doctor like you did to suspect this immediately.

I can tell you that I also thought I had cancer, and that axniety has still not gone. i am taking klonapin in small doses if the anxiety gets really bad. still have symptoms also. they say it takes time.... sounds like you are already doing better. best to you...!

Well, I guess that was a waste of a graduate degree... The mediterranean diet with lots of produce, mono-unsat fats, and small amounts of animal protein (much like the Okinawa diet) really is one of the best diet profiles in the world. ;-)

Honestly, I cannot endorse eating the vast majority of the animal products grown in the US. I don't recommend them partly because I cannot believe that human health does not depend on the health of the food animals we are consuming. It's not healthy these days, and the wider health and environmental impacts are horrifying.

For anyone not growing their own, or making a high five figure salary, it's not feasible to buy meat for three meals a day that meets the standard you would need for it to have a positive fat profile. Totally grass-fed (not grass-finished or grass-fed with grain-finish), just fine if your body tolerates it well and you eat a variety of cuts. Yes, those organ meats are pretty good for you.

Most of us can only afford it for once a week, at most. So we eat alternatives. Beans have lots of great nutrients, are cheap, easy to cook, and plenty of soluble fiber (like oatmeal).

If your total calories went down during a diet, that will also bring down blood lipids. So, yes, moderation in all. Cut out excess calories and trim down any "tummy fat" and that will help more than any tweaking with nutrient intake.

yes, thank you. so true. I am going to the library to check out the mediterranean diet book. I have been thinking that for awhile. I think it will be the best for me. If anyone reading has had success on it please chime in.

Thanks!!

Consumption of cholesterol is not linked to heart disease, neither is animal fat. There were some poorly put together studies a while ago that started that whole scare which were denounced as being misleading by the alternative health movement and it wasn't until this year that mainstream journals finally started admitting studies showing the complete lack of correlation that had been assumed this whole time.

Whatever you do don't eat canola oil on purpose, lard is healthier than that one (but not lard with nitrites or rancid lard).

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thanks for the info. to confirm your point WheatChef, I had a lipid profile done before I knew I had celiacs in February. By the time I had my follow up panel done in late April, my numbers came down off their highs so that total cholesterol was below 200 for the first time I can remember. I was on a basic diet of filet mignon, chicken, eggs, potatoes, and bananas. so go figure that my LDL actually dropped by almost 30 points. I understand that free range meats are the best but am having a hard time finding them other than in the organic stores which cost a fortune.

I am hoping this gets better folks. The frequent trips to the bathroom are getting tiresome... some people complain the opposite. at least most of my trips have normal results with the rest being a bit messed up.

Yes, rdunbar, I do feel like my system is undergoing attack. You've nailed it. I'm starving right now but so afraid to eat, because that's when the dizziness starts. I can handle the stomach discomfort. But those bouts of dizziness are scary. I know it's directly related because I've had mild dizziness for years, and have given up wheat before when a blood test showed allergy a number of years ago. But I've never given up wheat, gluten and casein all at the same time. But I've come this far, I'll stick it out.

I have been dealing with similar symptoms and have been gluten free for about 6 weeks, but I got cc'd 2 times and both times the depression and anxiety, dizziness, and pain on my right side all added up to just misery. I am going through this now after eating supposedly gluten free pasta at an Italian place. I wonder sometimes if I will ever heal or be over this. it seems like such a nightmare has come into my life in just a month's time...

the dizziness has been the strangest part of all this. It started last month and has eased up somewhat. I started taking my beta blocker again to help with my bp spikes and it has actually helped calm me down alot. but I still have the loose bowels which is disconcerting.

Well, on the bright side they only mention one whole grain in that list while all the other's are flours which means it's most likely that the contamination is occurring during the milling process. The whole grain was Millet, so looks like that one's another thing to add to the oat list.

Smith: they found 1 rice flour that had gluten in it but it was at 8.5 ppm which means technically it's gluten-free, they tested an additional rice flour that did not measure any gluten and they tested a number of rice grains that did not measure any gluten.

Quincy: You should just give up on grains for breakfast, heavy fats are much healthier for you to eat in the morning than any grains. Go with bacon and eggs or milk (whole fat) and a veggie or two. This will provide you with a much longer lasting steady stream of energy for the rest of your morning as well as priming your body for proper fat metabolism for the whole day.

thanks Wheat Chef, not sure what trac to take as my lipid ratio of HDL to LDL is competely inverted for the worse. My ldl is high and my hdl is very low, so not sure about eating high fats. I understand many are grain free completely.

I did a modified atkins diet about 10 years ago (I never ate cheese or bacon/eggs), but lean meats and veggies and oatmeal in the am and completely reversed my cholestrol numbers.

any further thoughts appreciated.

Thats a great article. I guess I always thought in the back of my mind this could of course happen, but to read that samples analyzed actually had enough of an amount to make celiacs sick is upsetting. Is this true for rice as well?

thanks for posting

this is just depressing. We are fighting something we cannot see and this is frustrating. I feel like I cannot trust anything or anyone but me right now. I miss eating without worrying...

I finally found Bob's Red Mill Gluten free oats. If anyone has any objections or advice on this let me know. I am only gluten free for 1 month and I am getting tired of Rice Chex for b'fast. I can't seem to tolerate anything with corn in it so my cereal choices are limited...

ok, I need some feedback on my most recent slip-up.

I have been diagnosed about 5 weeks now. When I eat at home and stick with my chicken, potatoes, meat, rice pasta, bananas, peanut butter, and apples, I make progress.

went to an Italian place that served gluten free pasta in marinara sauce. They assured me it was safe. I ate it thinking I was taking a chance.

stomach discomfort started shortly after I ate the whole plate. my third BM yesterday was major D by around noon time. Darn that restaurant.

but I recently started drinking Ensure with high protein and another drink called Mix (1) berry drink. both say gluten and lactose free on the label. Also started to take Lactaid so I can have plain non-fat greek yogurt, which I ate a container of.

any seasoned gluten CSI people out there what would be the most logical culprit: cc from "gluten free" restaurant pasta, the protein drinks or the yogurt...?

any advice, please respond. getting D really sucks, it makes me feel like I am not getting better when it occurs.

I've noticed that one of the first things that happens to me when i come into contact with something is the inside of my mouth (mainly inner cheeks) get kind of a raw. i guess it would be almost like mild ulcers. is this common? usually when this happens, i know the next few days are not going to be fun!

I suffered from canker sores all my life. never knew it was from gluten. I started using rembrandt's tooth paste for canker sore sufferers and they completely went away until recently when I was diagnosed. they are not a problem for me now.

Has anyone had a bad reaction to these? i tried a few last night. they seemed pretty safe but soon after i ate them i started to get the usual signs...

totally could have been something else from that day or day before i guess but that was the only thing new i had worked into a meal.

anyone tried them with good or bad experiences?

OMG I got so sick from these chips. stay away! and I thought I was doing myself a favor eating a gluten free snack. there is no number on the package to call and find out what the deal is with these. they are cc or have a high bad fat content.

once you heal you can snack on lays pot chips if you have a craving.

I know many on this forum have had symptoms all their life , while others started later in life, and I'd like to hear about it.

My story is that I was eating anything I wanted with no symptoms at all (that I know of) until age thirty, when I traveled to Peru on a climbing trip. I got just a little sick from the local bacteria and took a single dose of Ciprofloxacin (common antibiotic for gut bugs).

Over the following five years I gradually dropped weight (155lbs to 145lbs) without thinking too much of it, because I never felt sick until the last couple of years.

Then I took a two month trip around SE Asia and got really hammered by sickness, winding up in a hospital there for rehydration and antibiotics, and then taking yet another round of Cipro on my own before returning to the US.

Once back, I failed to get better and was dropping weight fast (down to 120lbs) and was wondering if I was going to die. I self diagnosed because the dermatitis herpetiformis disappeared in Asia but came back within a week of returning to the US.

I immediately went gluten-free and simultaneously started taking Digestive Advantage.

I then gained 55lbs in a month, because my appetite was in survival mode and I was eating everything in sight and now it was actually sticking instead of running through me.

It's been a year this month now and I've gotten my official diagnosis from the doc. Things are much better, not perfect, and I'm living life as much as I can. I wonder if I would have ever had celiac symptoms if I'd just stayed in the US and never gotten sick overseas. I'm worried about doing any more 3rd world travel because it might make my celiac worse or just ravage my insides more, making me unable to eat other foods too.

I also suspect my symptoms started after some stupid doctor put me on a 3-5 week cycle of Cipro for what he thought was a chronic prostate infection. I later went to a urologist who told me I did not have a prostate infection and to stop the cipro immediately. Too late, damage done. have never been the same since and whithin a year I was fully gluten intoleran....

Scary....

Reminds me of right before diagnosis when I was feeling faint and pulled over on the side of the freeway. Highway Patrol found me and said I either needed to sit up and drive or call 911. Even if I'd have known the problem, I'm not so sure Mr. Officer would have bought, "sorry sir, I just ingested wheat"...haha.... *sigh*

Be careful out there.

hopefully someone will see my post and give me some insight about this lightheaded, slightly off-balance sensation I have had that began in April, right around the time of my diagnosis when my symptoms were the strongest. It begins in the morning and finally starts to dissipate in afternoon. I have asked several doctors what this is and they just stare at me and shrug their shoulders.

my only vitamin deficiency that I know of is vitamin D, for which I am on 50000 IU's twice a week for the next several weeks. not anemic, and all other blood reports are normal....

any insigt would be great.