BRUMI1968

THanks everyone....is there anything OTC that is ok to take?? Or should i stay away from those?

Also is dairy binding? Cause i know ive been eating a lot of cheese lately

Everyone is different - but if I have even 1 tsp of butter on something, I'll get solidified in a bad way. I'm like you, with C not D, or rarely D. I quit dairy since I was on the board here complaining of miserable C and realized I was at the same time telling folks how much I loved ghee, the only dairy I had been allowing myself (if by "allowing myself" I mean eating by the truckload). I quit, and within two days I was fixed up.

Fiber, obviously, is important. I eat a lot of veggies, brown rice, avocados (never sent me to the potty), etc. I need to drink more water, too, and am working on that. I also eat prunes probably every day cut up in my trail mix...that probably helps.

I'd do step 1, quit the dairy to see if that clears it up.

-Sherri

p.s. someone probably already said this, since I didn't read to the end.

Not only that, a Celiac panel should have at least four results, not just one. I came out normal on all but the IgG, which was 35 (anything under 20 is normal). All the rest were fine for me (I was not eating much gluten at the time of testing.)

You should have multiple numbers...AND you should ask for a printout of your lab work. It's always nice to have it on file or to share with other docs.

-Sherri

Here's one in the middle--I use Skikai Shampoo and Conditioner

I REALLY like Shi Kai also. Their shampoos/conditioners/etc are gluten free - EXCEPT the shower gels - those have oats.

Should she ask for a specific B12 test? I know I had one separate from the CBC, and found I was very deficient, which helped lead to my diagnosis.

No cramping from the laxatives? For some reason, I'm worried about that.

(I think it all stems back to one night, when I was about 6 and my parents, for some bizarre reason, made me eat a prune. Their mistake. When they went to bed hours later and walked by my room, the discovered, to their dismay, that I need a bath and some new sheets. I've eaten prunes since by the way, but am still nervous about laxatives.)

Also, I get a tummy ache if I don't eat. What do you mean by liquid diet? A smoothy?

(I'm not as flat chested )

WHAT? Yahoo.

Hi all. I did do some research and it seems like hormones can definantly be affected by gluten. Now that we absorb nutrients better, maybe the hormones will come back up. I was especially interested in a topic from another site where they were talking about low levels of testosterone being a culprit to lots of things, including fatigue and painful periods. I am going to have an appointment with my gynocologist this month, time for my yearly, and I am going to ask about all of these things, and I am going to ask to have my hormone levels checked in general. Also, there was talk about the fact that malnutrition makes you have low cholesterol levels, and that vitamins that need fat to be absorbed might be out of balance, causeing a myriad of problems.

Tarnalberry if you look at this I would love it if you would post your thoughts on this. I saw a posting you did at another sight from last year, that was very informative!

Thanks!

Lollie

I just saw my alternative doc (he's Ayurvedic from India) and he told me about finding out Celiac men have very decreased levels of testosterone - they think the same might true of women. So he ran some tests on me. Interesting stuff! I'll find out next week.

One of the super fun things about Celiac, is that your absorption of necessary vitamins and minerals is nil. Thus, the symptoms of Celiac can be just about anything caused by malnutrition.

I had aching thighs and low back, and I think it turned out to be serious Vitamin B12 deficiency. If you haven't been checked for that, you should be.

I have been told I have IBS since I was in my teens (I'm 37) -- making it about 33 years or so I think I've probably had Celiac. Personally, and I know not all folks agree with me on this, I think IBS is a stand in for "I don't know what's wrong with you, and either me or your insurance company are unwilling to do the appropriate testing to find out what is irritating your bowels". You know your system is irritated for crying out loud...you want to know why.

So a month ago I asked for a Celiac panel myself. One of them came back positive (35 when 20-30 is mostly positive, and anything above is definite) and the other three bits of the test came back negative. I went on gluten free right away, and certain things got better instantly. I stopped itching. I started sleeping through the night (never even noticed that I hadn't been). My canker sores went away. Other things got worse - I became constipated for the first time in years (I have always been on the constipation [C] end of Celiac, but after quitting wheat [not gluten] two years ago, that had gotten better), and I felt emotionally drained. BUT...after I started getting the B12 shots and taking vitamins sublingually (under the tongue), i started to feel better. And after adjusting my diet to include more fiber and some probiotics, the C went away too. I feel as though I'm on the mend.

The mental fog and emotional rawness come and go. But the ANXIETY, for me, is gone. That disappeared when I quit wheat.

Anyway, I've rambed, but felt like what you've said really rung a bell with me. One thing I didn't expect with stopping the gluten - I hardly ever think about my stomach anymore. I realized that for years, my stomach has ALWAYS been on my mind.

Anyway, I'm glad you're here and I hope you decide to try the gluten-free diet no matter what your diagnosis. As far as I can tell, the grains that folks think of of as "alternatives" or for hippies or whatever, are better for you anyway...and taste good too.

I may require a colonoscopy depending on how some inflammation blood tests come back from the doc this weekend. Would anyone be willing to share the process, including the days leading up to it? Thanks.

-Sherri

Aoki is very authentic, thus the difficulty in communication. But I asked her specifically, "isn't it rice vinegar?". She said, "yes, but we get it in a huge box and the the box that it comes in says wheat." so I trusted that and got the ochozuke. She said they get several customers in with wheat allergy - though I bet not more than once.

I had perpetual canker sores before quitting gluten; and was very tired much of the time, from not being able to walk up a slight hill w/o getting winded, to sleeping four hours in the middle of the day on top of a ten hour night of sleep.

Quitting gluten totally helped the first, and I'm in the process of feeling better from the second. I also was itchy a lot, and now I'm hardly itchy at all.

It sounds like gluten intolerance to me. (Dairy might be a problem, too. IF you have Celiac, the villi in your intestines have been gummed up, and that is where you get lactase, the stuff you need to digest dairy.)

-Sherri

The gluten is bad (oat potential and definite malt)-- look at all that sugar, though, too. Amazing. The only reason it is not listed first is because they use different kinds - and that's probably why - to keep any one sugar ingredient from being the main ingredient. But if you add them up, my word, that's a lot of sugar.

I make my own trail mix out of (raw) walnuts, pumpkin seeds, sunflower seeds, raisins, prunes, figs...I think that's it. I love it.

As to "granola" bars, I stick with Lara Bars which are vegan, dairy, and gluten free...they are really sweet, but don't have ANY processed sugar. They are spendy, though.

-Sherri

I went to my favorite old stomping ground today for lunch with my mother; Aoki, my favorite Japanese restaurant. I knew it would not be the best, but thought sushi would be alright.

My server, Yoko who remembers my name no matter how long I am absent (I moved away years ago), was so great with the "wheat allergy". Anyway, I said maybe sushi, and she let me know that the vinegar they use to make sushi rice has wheat in it.

I had salmon ochozuke (rice, salmon, some spices, some seaweed, some wasabi, and green tea poured over the top). It was good. We'll see if "no wheat" equals "no gluten" in this instance - it was my first eating out experience since being dx'd and I guess I'll have to get used to asking to see the box.

anyway, boo hoo. I guess I'll have to learn to make my own sushi with gluten-free rice vinegar!

-Sherri

I found a new product today.

SUN FLOUR BAKING COMPANY

"Cinnamon Cookies"

non-gmo; "made w/o wheat or gluten".

They do make gluten things, so perhaps cc will be a problem, I don't know since I don't have severe reactions. But it did taste good.

Interestingly, main flour was pinto bean (so I guess no good for legume-avoiders), but it didn't taste like beans. Anyway, thought I'd pass it on.

www.sunflourbaking.com

I'm also an A+

Me too...to the front of the class!

I know that herbal teas can be a problem, and jasmine can either be green tea based or herbal. I looked on all my herbal teas when I was dx'd - all celestial seasonings so all gluten-free - but I did check. I would imagine Chinese jasmine tea to be of the green variety, so it doens't sound too likely it was the tea...on the other hand, do they do anything to the jasmine flowers to keep them dried & ready to be yummy.

p.s. jasmine tea is good for the digestion...in most cases anyway.

Wow, Robb, thank you very much for that ".02 reply." I really appreciate it.

To answer some of your questions, I am not vegan for political or religious reasons. Mainly because 1. I am allergic to dairy (that was discovered when I was about 5 years old) and 2. I just never really "liked" the taste of meat and so at 16, decided to stop eating it. However, when I first went gluten free a few years back (I have been on and off this diet so many times, trying now for good). I happened to be in Maui at one crucial point in the diet when there was nothing for me to eat, but they had fresh Ahi Tuna Steaks. My hubby and I never liked sea food but both agreed to give it a try. Not bad. So I guess my "vegan" label should no longer apply, just so used to saying it so that restaurants don't mess up & give me cheese or beef. I can safely say, that now I indulge in a little fish (maybe once every other month) and usually Ahi. It makes eating out easier but I cannot do it in large amounts, I think my system isn't quite used to having that type of protein.

I agree with your comments about the sugar. I have just started reading a Sugar Addict's Road to Recovery and she recommends a little protein at every meal, especially breakfast. Also, no snacks and lots of water. So, I am giving that a shot. I am trying eat Ahi more frequently and I have started eating eggs (or rather egg whites and egg beaters) more as well. Laying off the carby foods unless I have a big training session or a race. My one road block is I am around the sugar a lot (i.e. at work) so I am doing my best to not be around it as much (such as taking a route not past the "candy desk"). It isn't donuts or anything it's pure candy and not even chocolate.

I also think my brain to stomach indicator is um, broken. I need to learn to eat slowly. I am guilty of eating too quickly and often standing up.

I really appreciate all your advice and tips. My training has been going okay but for the amount that I do, I would think that I'd be losing a pound if not two. I am not worrying too much about it. Training time is not the time to try and lose weight. But I have been slightly dehydrated lately no matter how much water I consume.

I will try the higher protein/fat diet a little more. Too much fat doesn't sit well with my already sensitive stomach nor does too much protein. Baby steps.

Have a great weekend! It's been beautiful in Northern CA the past few days!

Not to be a downer, but watch your intake of tuna - it is loaded with mercury. You might want to try some other fish like salmon - less mercury altogether. It used to be advised that pregnant women and children limit themselves to one can of tuna a day; now they say that for all women. Also, tuna steaks have even more mercury than cans of tuna.

Did you have any mahi mahi in Hawaii? I think it is a snapper. Yum!

accupressure is similar to accupuncture - but without the puncturing. There are also things like hands-on healing, naturopath, homeopath, ayurvedic medicine, chinese medicine.

thank you so much! it really help to hear from other people! ya a lot of my symptoms have gone away too! the ehaustion (sp) you were talking about was one of them! and i got tested for lots of other things i just dont have the results left! really, does going of citrus help you?

I've never eaten much citrus anyway, being very sensitive to "sour" things. I do eat lemon and lime, like in lemon/mint/cilantro rice and guacamole...but I never touch oranges and the like. It was just something the nutritionist said.

I've also found that things that used to might upset my stomach, don't anymore. I have to remember that my stomach aches were likely caused by my small intestine - so now I focus on eating those things that promote intestinal health. Granted, some things always have and always will cause each of us to have tender tummies...those things should be avoided. I just worry if someone were to only be eating "gentle" foods, they might not be getting enough fiber and whatnot. LIke a potato - not a very nutrient dense food really. I like the following website for finding really good for you food - and the recipes are great too. Good luck!

Open Original Shared Link

-Sherri

I'm imagining the spoons they have in the different beans and the rice; I'm seeing them touching the tortillas that they are blobbing those things into; I'm imagining a sensitive celiac not feeling too good later.

But then again, these are just my imaginings. I used to get the Baja Bowl there, but 1/2 jokingly just now, I convinced myself I can't anymore because of the spoon thing. You've eatn there, right? I don't know. What does anyone else think about the spoons.

I'm recently diagnosed as well. My nutritionist suggested no eggs, dairy, corn, peanuts,or citris for a few weeks to settle my system down. I'm also going to get tested for other intolerances so I can get on with being healthy. I've actually felt slightly worse digestively speaking since I found out, but that is starting to subside. Right away though, I stopped getting canker sores and itching and being so tired I could hardly go the day without two naps.

So hang in there. Your intestinal health needs to be rebuilt - you need good bacteria in there (probiotics), and you might need some temporary help in digesting stuff (prebiotics/enzymes). Once your system gets back on track, you should feel better.

Good luck and welcome.

My problem was always constipation, and I know how miserable it is. After going gluten-free for about 6 days, I got it back (hadn't had it in a while), and that was really frustrating because it seemed as though i should be getting better, not worse.

I ended up seeing a nutritionist and he put me on a diet that consisted of slow cooked brown rice, lots of cabbagy style veggies, nuts and seeds and fruits, and of course, some supplements. After a couple days, my constipation subsided. I don't know if it was all the fiber-food I was eating, or if it was replenishing my intestinal bacteria or what, but I'm glad that it is over, at least for now.

the other thing I found out through trial and error, is that dairy products constipated me quite badly. When I quit those, I got better.

Good luck. I hope you find the answer.

I used to have one for my ITP, saying "No Blood Thinners". I think I might get one again; here's why. What if you are unconscious for some time in the hospital and whatever is in the bag of "food" they are feeding you through tubes has gluten in it. It seems like that might be bad. Or what if you are in some kind of mental fog or mental coma or something and can't tell them not to even though you're able to eat.

Maybe a long shot, but I also don't want any vaccinations, blood thinnners, or exorcisms. Okay, an exorcism might be okay (remember, today is 06/06/06).

I lived on Cap Hill for several years...now I live in Bellingham (1.5 hours north). I don't miss Seattle traffic, noise, or smell...but other than that. I miss Lake Union, and rowing, and restaurants that are open late, and "Whole Paycheck..." I mean, Whole Foods.

B-ham is great, though. Got the fresh air, enough dogs to satisfy anyone (even me), trails, mountains, skiing, Vancouver BC...yeah, I like Bellingham.

All you Seattle-area-ites should make a trip up here and we can all go on a Celiac hike in the Chuckanuts.

Welcome, anyway, though I see it was months ago you started this post.

Yeah, Seattle! (I read that Seattle was voted #2 good eatin by PETA - lost to San Francisco but beat out New York for place 2...never mind PETA makes me cranky, that's another story.)

My doc had me on turmeric as well - for ITP, another autoimmune disease.

Interestingly, the combination turmeric, ashwaganda, zinc, and boswellia has shown to be a potent arthritis pain medication in dogs and humans. The symptoms decrease even if the actual problems stay the same. It may not have been R. Arthritis...I can't recall. I'll try to look it up again to check my facts.

Hey all. I'm working on a project with an Iraqi-American who lives in Seattle. I mention her background because socially speaking, eating with people and/or cooking for people is of the utmost importance in their culture. Every time I drive the hour and a half to see her, she wants to repay my efforts with food, and I honestly feel I am offending her when I try to refuse. She is a doctor and knows of my Celiac, but does not have any personal experience with it, so doesn't quite understand how her pantry of Costco items is likely to cause me problems.

So...does anyone know of any restaurants in Seattle (U. District is first choice, but anywhere will do) where a Celiac who is also nearly vegan (eats fish and honey and wears leather things) can get something to eat?

thanks, all!

p.s. It would be for lunch.