queenofhearts

Thanks....yes, I can see how lipstick would be important for sure. I'm currently using Revlon, Cover Girl and Almay. Any comments on those?

I know CoverGirl Outlast is okay... it took weeks of pestering to get that little snippet of info, so I didn't ask about other products.

Leah

Nope, I'm an artist, but my dad is a chemist & I told him his analytical influence was very useful when I'm concocting gluten-free goodies in the kitchen! For that matter, mixing flours is a bit like mixing colors...

Leah

I'm wondering if there is a connection here, or if I'm dreaming...

All my life I've been a mosquito magnet, always more bites than anyone else in a group, piling on the repellent & still getting bitten.

I was noticing the other evening in the garden, I had not applied repellent, but the skeeters were flying around me but NOT BITING!!! I can NEVER remember seeing this happen before. I did get a couple of bites, but normally I'd have been covered with them.

Could it be that something in my metabolism has changed since going gluten free that no longer attracts the little devils? Has anyone else had this experience?

Will wonders never cease?!!?

Leah

Thanks!! Does EVERYBODY on the gluten-free diet have to be careful of the lotions, lipsticks, etc??

Lipstick, most definitely. Hand lotion, unless you NEVER touch your lips or eat with your hands. Facial moisturizers, foundation, sunscreens, &c. that could "melt" in perspiration & get into your mouth, shampoos & conditioners that could drip into your mouth in the shower-- those are the biggies. I don't worry so much about things like foot cream, leg shave cream, waterproof mascara, &c., just make sure to wash my hands well after applying anything & remove my eye makeup & lipstick with separate tissues. (The latter was one of my later insights!) Some folks do say that wheat content in anything makes them break out or something, so use your judgment.

Leah

I had both upper & colonoscopy on the same day, & my only real symptom was a headache the following day. I think this was partly dehydration & low blood sugar, but it may also have been related to the anesthesia. I did work that day, but not for a full 8 hours, nor was I up to my usual level of concentration. By the following day I was fine.

Leah

Hi all - I'm new here and wasn't sure where to post this...here's my question:

My son will be one year old on July 12th. Since he started eating solid foods (from about 5 mos.), he's had chronic diarrhea. The thing is, this is his only 'symptom'. He eats like a horse, has been steadily gaining weight and is not in any kind of abdominal distress. His poop is another story - totally gross blow outs. Like, I had to buy vinyl undies to contain his diapers overnight after deciding I couldn't deal with having to wash his all crib bedding every morning (we're talking poop EVERYWHERE). We first tried cutting out dairy & eggs, but that didn't make a difference. Then my doctor suggested a wheat allergy, so for the past month or so, we've been on a WF/gluten-free diet and lo and behold, HE HAS SOLID POOPS! I hate to be so excited about a turd, but seriously, if you'd seen what it looked like before and after, you'd be excited too! So basically I'm wondering if it's possible for him to have Celiac disease, but to have it only manifest as chronic diarrhea without any of the malnutrition issues. Any ideas? Thanks!

Sure sounds like it to me! I've just been diagnosed at the age of 50 but have had trouble with recurrent diarrhea since childhood... there are all sorts of symptoms, variations & combinations, & if the gluten free diet is helping, I'd say that's almost a dead certainty that he is at least gluten intolerant.

And this may be the one place on earth where almost everybody has gotten excited about a turd! You're in good company here!

Best of luck,

Leah

Found the Burt's Bees list but it took some looking so I've copied it:

Appropriate List For Gluten Restricted Patients

Products NOT containing wheat, Oat, Rye & Barley derived ingredients

Updated: March 24, 2006

BABY BEE

BABY BEE DUSTING POWDER

BABY BEE CR�ˆME

BABY BEE LOTION �€“ DAIRY

BABY BEE BUTTERMILK BATH �€“ DAIRY

BABY BEE DIAPER OINTMENT �€“ NUT

HAND & FACE & BODY

GARDEN TOMATO TONER

WILD LETTUCE TONER

TOMATO COLOGNE

CARROT NUTRITIVE BODY LOTION

MILK & HONEY LOTION�€“ DAIRY

PEPPERMINT SHOWER SOAP �€“ NUT

LAVENDER SOAP

TOMATO SOAP

CARROT SOAP

CITRUS SPICE SOAP

WILD LETTUCE COMPLEXION SOAP

CUCUMBER/CHAM COMPLEXION MIST

LAVENDER COMPLEXION MIST

GRAPEFRUIT COMPLEXION MIST

CARROT SEED COMPLEXION MIST

LEMON POPPY SEED

BEESWAX MOIST DAY CREME

BEESWAX MOIST NIGHT CR�ˆME �€“ NUT

GINGER CITRUS BODY WASH

ALMOND MILK HAND CR�ˆME �€“ NUT

BANANA HAND CR�ˆME �€“ NUT

LEMON BUTTER CUTICLE CR�ˆME -NUT

HAND SALVE - NUT

ORAL CARE

LAVENDER TOOTHPASTE

CINNAMINT TOOTHPASTE

CHILDREN�€™S TOOTHPASTE

PEPPERMINT BREATH FRESHENER

LIP & COSMETIC

LIP BALM TIN �€“ NUT

LIP BALM TUBE

HONEY LIP BALM �€“ NUT

LIPSHIMMER �€“ ALL SHADES

LIPSTICKS �€“ ALL SHADES

LIFEGUARDS CHOICE LIP BALM

LIP GLOSS �€“ ALL SHADES

EYESHADOW- ALL SHADES

TINTED MOISTURIZER �€“ ALL SHADES

BLUSHING CR�ˆME �€“ ALL SHADES

CONCEALING CR�ˆME �€“ ALL SHADES

POWDERED FACIAL TISSUES

EYE & BROW LINERS

VANISHING POWDER

HEALTHY TREATMENT

HT EVENING PRIMROSE CR�ˆME �€“ NUT

HT MARSHMALLOW CR�ˆME

HT PORE REFINING MASK

HT TONER

HT SHEA BUTTER HAND REPAIR �€“ NUT

HT ROYAL JELLY EYE CR�ˆME

HT PARSLEY BLEMISH STICK

HAIR CARE

HERBAL TREATMENT SHAMPOO

SUPER SHINY GRAPEFRUIT SHAMPOO

SUPER SHINY GRAPEFRUIT CONDITIONER

MISC

HERBAL BLEMISH STICK

HERBAL DEODORANT

INSECT REPELLENT

THEARPEUTIC BATH CRYSTALS

HERBAL DEFENSE OINTMENT �€“ NUT

HERBAL MILK BATH �€“ NUT, DAIRY

Sarah Milkovich

Retail Web Coordinator

Burt's Bees, Inc.

info@burtsbees.com

I have made my own soap for years. That's one way I avoid that problem anyway. I like Burt's Bees, but I don't know about everything they make. I'm obviously still learning.

I posted a list of Burts Bees recently. If you search Burts Bees Leah, it will probably come up.

Leah

Can anyone tell me which supplement companies are the most likely to be gluten-free?? Also... What percentage of you folks have the casein sensitivity? And which test is that through?

thanks

There are lots of safe supplements out there; I use Nature Made mostly, they assured me all of theirs were safe except for the chewables.

Don't know about the casein, sorry.

Leah

Thanks Felidae! After reading a lot of these message boards lately, I'm beginning to see that most people don't get over this thing very fast. I'll hang in there. It must be really wonderful to feel normal. I'm not sure I ever have either. Been sick a L O N G time.

I too feel like I never really knew what it was to feel well. I've had gastro symptoms & weakness since childhood, recurrent depression, nightmares & anemia since adolescence, & all manner of ailments as I reached middle age. I just thought that was what my life would always be like, so the Celiac diagnosis is almost a dream come true. I still sometimes can't quite believe I will really recover from alll this just by avoiding gluten! But this board helps me believe...

Leah

yep, they use those TENS units a lot at physical therapy, and that's why I got mine - it was helping there. it'll probably last until you do anything strenuous with it, unfortunately, but it helps bring down some of the inflammation, so it's worth it. I acutally have an NMES/TENS, which can do two modalities for an additional purpose, so I don't know how much a straight TENS would cost - and you can get very portable ones, they're not much bigger than iPods, acutally - but they may run on the order of $200-$300 for a decent one.

as for the chair... I'm a software engineer, and I sit for eight (or ten, or twelve) hours a day in front of a computer - with my back problems (sacroiliac joints and tailbone), regular chairs were a nightmare, so I brought in what I used in college and use at home a lot - an exercise ball. I went through some trouble to get it approved at work (needed a note from my ortho and my PT - both of whom were very supportive of using such a thing to sit on), but I've used one for years, and they're fabulous.

I've done the physioball chair too-- it's great when I have to work at the computer for a long time at a stretch. It's amazingly helpful! Much cheaper than those prescription chairs too! I work at home so only had to take some ribbing from my DH & kids...

Leah

I've only bought Authentic Foods direct from the company online, & it's still pricey!!!

Do you by chance have any Asian groceries nearby? That's where I've found my best buys, with rice, bean, tapioca & other flours at amazingly low prices. If you don't have any near you, try searching online for Asian foods & see what you find. That's the only CHEAP source I've found.

Oh-- I just remembered though, somebody posted that Amazon has a discount grocery with some good deals. You might try that.

Good luck!

Leah

Hi. New user here. my mom was diagnosed with Celiac about 6 weeks ago. Her dr suggested I be tested (I'm 27) since it is hereditary. My Bloodwork came back very positive and the GI highly suggested that I have the biopsy (scheduled for July 11th) and if it's also positive to go on the diet. BUT...i don't really have any symptoms. The dr was very insistent with my mom that celiacs is highly related to cancer and diabetes, and other things, but when I met him, he couldn't convince me of it. He said they are related, but studies haven't been done to see how likely. And he said to me that the villi replace themselves every 2 weeks, therefore no permanent damage can be made by continuing to eat gluten, but he gave my mom the opposite impression. I'm very confused. Should I even have the test? And If I do and it is positive, why should I eat that diet if i don't have any symptoms and it can't cause permanent damage? The only symptoms I can think that I may have is frequent bowel movements (frequent meaning about once a day) and once in awhile I get severe stomach aches, and I often just feel kind of in a dream world. (I read another post where someone described it as a fog) but none of these are severe. I think if I had the horrid diarreah that many people have or even the anemia that my mom has, I'd be happy to do the diet....but I don't....HELP!!! advice???

If I were you, I would absolutely take the test now, while you are still consuming gluten. And I'm afraid your doctor is not quite accurate that no permanent damage is done by eating gluten. For one thing, with damaged villi, your body is not absorbing nutrients properly & deficiencies can cause all sorts of lasting problems, some fairly stealthy (like osteoporosis). There is also a much higher incidence of stomach cancers in gluten-consuming Celiacs.

I was diagnosed at 50 after years of misdiagnosis, & oh how I wish I'd been diagnosed at your age. Then I could have headed my ailments off at the pass, so to speak, instead of having to w...a...i...t... for them to heal. I recently read a study that those diagnosed over 30 took much longer to recover than folks your age, as I'm sure your mom is aware.

Yes, it's a pain to be gluten-free, but you do get used to it after a while, & your long-term health prognosis is much much better if you stop "poisoning" your body with gluten.

Bite the bullet, Mary Lynne! You need to know the truth so you can protect yourself.

If you need moral support you will find TONS of it on this board.

All best wishes,

Leah

Thanks so much Leah! I have actually been very careful. I've called all my supplement companies, many food companies and checked every label. I agree that there's a lot to learn. But I can't see that I'm getting any inadvertant gluten or dairy anywhere. I am actually very patient when it comes to getting well. But I was hoping to get somebody out there who had an explanation for the dizziness and heart flutters. If I were at least fairly sure I wasn't going to DIE while I waited to get unglutenized, then I'd be fine!

I've had both of these symptoms, though not severely, & they often appear on this board. Are you anemic? Do you have low blood pressure? Both can result from Celiac malabsorption & cause these symptoms. It just takes time to heal enough to get those nutrients where they are supposed to go. My doc said to expect about 3 months before I really felt any different. Some on this board have gone much longer, but did get well eventually!

Good for you for being so careful! Few doctors give the full scoop & I think many folks waste a lot of time getting inadvertantly glutened.

Leah

For the last 3 days I have been taking a new calcium supplement. I called company and they said that although they don't add gluten, they can't guaruntee that gluten doesn't cross contaminate in their factory. Anyway I have had a headache that won't go away and my legs feel heavy and sometimes a little numb. I lifted my arm to paint in the living room and my armpit started throbbing and my hand started cramping. Really weird. It also feels like the muscles in my groin area are achey or fatigued. I also started taking flaxseed oil capsules but they say gluten free on the bottle. Does this sound like celiac symptoms or something else? Feeling awful right now.

Sarah

Sounds like it might be gluten, but I'm curious-- have you been painting before this time? It could just be repetitive motion injury; this is easy to get if you suddenly do a lot of a motion that you hadn't been doing before. It can stress the nerves somehow, like carpal tunnel, & cause all sorts of weird tingling & discomfort.

Leah

Hello Everyone.

I'm in my 50's and just got back a saliva test from Diagnos Tech in March and a comprehensive stool test from Enterolab in July. Both strongly indicate celiac so I'm accepting it as a done deal. The Enterolab test says I have one gluten intolerant gene (DQ1) and one celiac gene (DQ3), mild malabsorption, some intestinal damage from the looks of the transglutaminase numbers and a definite casein intolerance. The Enterolab test showed all of that in spite of the fact that I had already gone off all gluten and dairy and several other allergy foods for 2 months and in spite of the fact that the Diagnos Tech saliva test which I did 2 months prior also said my total salivary SIgA was even borderline low. The saliva test also said I am intolerant of eggs. After all that, I've just assumed I probably have soy problems too. I took a big IgG ELISA blood test from York and found a few other allergies as well.

I have been in the health field all of my adult life. I began courses to get my Naturopath degree and I would love to finish them, but everything has been on hold for nearly 8 years now because I've been so sick. As an adult, I am not classic celiac. Hindsight tells me that I probably was as a child with LOTS of indigestion, hives, ear infections, anxiety, itching skin and such. But most of my physical symptoms as an adult began 8 years ago with a GIANT panic attack from which I have never recovered. I have been suffering with panic (with agoraphobia), anxiety, unresponsive obesity, sweats, mild neuropathy, constipation, depression, insomnia and bloating for the full 8 years. Lately I have added VERY DISTRESSING ectopic heartbeats (flutters) and unrelenting vertigo. Those two symptoms are so scary that I have found myself making "bargains" with God that if I could just have those go away, I would graciously accept all the others. I have been checked over from top to bottom in emergency rooms and doctor's offices and spent thousands of dollars trying to figure out what was wrong with me. I even explored the psychology route in case it was all in my head. While being an avowed health food nut for 30 years with no dietary or lifestyle bad habits (honest!), I am the sickest person I know. Something has to be wrong. Well now I have probably found it.

I have been reading on several message boards to try to bring myself up to speed. But here are my current questions for some of you veterans:

1. If I have been gluten, dairy and egg free for 2+ months now, is it normal to still feel so badly? My dizziness and heart flutters are relentless and I just feel generally anxious, wobbly and lousy all the time. My depression isn't as much psychological as it is just being TIRED OF THIS!

2. I realize that a regular medical doctor would likely want me to do a gluten challenge and then do bloodwork and a scope test. I really DO NOT want to do that. Am I going to find it hard to live a celiac lifestyle without a "proper" diagnosis? Or are there doctors out there who will accept the stool test?

3. Scientifically, if a gluten and dairy intolerant person eats those things heavily her entire life and then suddenly stops, is there a detoxification process that must occur and is the length of time determined by how long the celiac went undiagnosed? Since I have not had diarrhea or vomiting to rid myself of the offending gluten and dairy during my life as many celiacs do, but instead have been bound up with constipation and obesity, is there actually gluten or casein residue that the body must deal with? Or is that not the way it works? I understand the autoimmune mechanism with the damaging of tissue and inflammation. I'm just trying to figure out why I am not responding to a gluten and dairy free diet with any improved well being at all. I'm actually worse and I'm going on 3 months now.

NOTE: I couldn't stand it any longer and called my gp today to tell him about my tests. He's a really nice guy and I was hoping he'd help me on my terms. But he is recommending a blood test even though I have been off gluten for 3 months. He says that it won't matter. He is also recommending a colonoscopy. Although I really respect my doctor, it doesn't sound like he fully understands how this works. Not sure what to do now. If I didn't feel so badly, I'd just do this alone and not deal with the medical establishment. I just don't know if I'm brave enough. These symptoms are scary.

I really appreciate the wonderful service provided here. I've never participated in a message board before. So if I've put this in the wrong place or gone on too long, please forgive my ignorance of procedures. I'll learn eventually. Thanks so much!

Hi, Blanchemae,

Welcome to the board! I predict you will find it as helpful as I have. These folks know way more than the doctors! And provide great moral support. It's perfectly appropriate to ask ANY question (there's even a chat place for non-celiac stuff) & there is almost always someone who knows the answer.

I'm sort of in the same boat you are, diagnosed at 50 & still symptomatic. But I was diagnosed by biopsy, which was very useful in my case. But I had only been gluten-free for a week when I had the endoscopy. (Colonoscopy is not for this-- other problems maybe?)

I recently read a post on the Celiac Listserv (I think that's where it was) that said that those diagnosed over 30 had not fully healed after 2 years on the diet. Others on this board have said that it took them a year or more for full recovery. I think we're going to have to be patient.

Also, are you being careful about cross-contamination, meds, cosmetics, &c.? There are a lot of details to keep track of with Celiac. Have you seen Nini's newbie kit yet?

Again, welcome, & let me know if there's anything else I can help with.

Leah

I would suggest upping the frequency too. I had twins & there wasn't enough milk for both to last more than 2 hours, so I just nursed every 2 hours until my boobs figured it out! Maybe even more often right at first. I realize not everyone has this option! I work from home so it wasn't as impractical as it sounds. One of mine was also a little slower to get the hang of it; he was smaller too & had colic, not sure if these were related. He caught on after a while. We did have one nightly "relief bottle", but I've heard that can be a problem for milk supply. Things did work out in the end & I nursed them both to a little over 1 year old.

I definitely second the "eat enough" advice. I nibbled most of the time when I wasn't nursing at first! And definitely drink plenty of fluids of course.

Hope all goes well, but remember if it doesn't work out, it doesn't make you less of a mother. There's a lot of emotional stuff around nursing, & while it is certainly the best method when it works, sometimes for one reason or another, it just doesn't. Remember that a lot of kids have survived bottles! Don't let the stress sap your energy too much.

Hang in there,

Leah

Hi Leah,

I live in Durham. Have you checked out the EarthFare at Brier Creek? They have a lot of gluten-free products I haven't seen at Whole Foods.

Sarah

No, but that's a great tip! Thanks! I have family in Durham so I get over there fairly often. Do you have any restaurants there that you trust?

Leah

Thanks for your responses! I'm still not sure what this is all about....If it is gluten it's not as painful as my usual response, but this rash is really itchy!! so I guess it's an even trade. All kinds of weird things can happen while your pregnant, so I had wondered how it would affect celiac disease. I have an uncle that has to take cortizone shots for his DH (although he won't stick to a gluten-free diet, so who knows if he would have to take them if he did), I hope I don't end up with that

I had no idea that I was Celiac when I was pregnant, but I did have severe hives just after my boys were born, which were never explained. Now that I look back, I wonder if it was a gluten-related thing... could've been just stress or wacky hormones too I guess... the ironic part is that the only treatment I was allowed (due to breastfeeding) was oatmeal baths!

My hair also went curly then & never straightened out. Go figure!

Leah

hello,

I am a newbie here so my apologies if this question hsa been asked a million times before.

I spent years being sick, and in pain burping, getting sicker and sicker and them just telling me I neeeded to eat better and I could'nt possibly be eating as well as I was eating since I was this sick. Then the yrs of antibiotic creams and garbage with the DH I had on my face telling me I was eating too many sweetis and it was just acne.

Anyway, about 2 mos ago I fired my doctor went to a rheumatologist crying and begging him to run what ever test he could think of that he thought might fit my history. One of them was celiac, and it came back 24 with a threhold of 10 or below being normal. He said when I saw your skin and your face, and the fact it all centered around food, I thought that might be it.

Anyway....now I have been learning and going gluten free. No biopsy as I am opposed to the unless this doesn't get better, which it actually has a little.

My question though, is muscle and joint pain....I woke up this morning sleeping as I normally do and my back felt like I had been beated, so did my arms and my eyes are dry. I've had muscle aches and this isn't it...it feels deeper. I have another appt on Wednesday because they are thinking I could have some problems with my minerals....is this achiness and pain common....its really quite painful....I mean I want to just curl up with a heating blanket and veg...

Sorry for whining but its quite painful and I just want to know if anyone else has gone through this....

Also...can anyone offer any quick meal suggestions for someone highly sensitive.....

Thanks all!

Erin

Welcome to the forum-- ask ANYTHING you want here. That's the whole idea! This board has been a real lifesaver for me, by far the most helpful source of Celiac wisdom & moral support.

I've definitely suffered from "bone pain" over many years, mainly in knees & hips but sometimes all over. I used to say it felt as though I'd fallen down the stairs-- just aching all over. It seems to have diminished a bit in my 1 month of gluten-freedom, & many people say they have achieved great relief over time, so I'm hopeful.

Glucosamine helped me too. But the main thing I've found extremely helpful is yoga-- it hurts quite a bit while I'm doing it, but I think in my case, muscle tension adds hugely to the overall achiness & anything that loosens me up helps a lot. In my experience I can hurt 20 minutes a day doing yoga, or all day not doing it!

Salad is my favorite quick meal in summertime, with boiled eggs or cheese or leftover chicken for protein, lots of dark greens, tomatoes, cukes, carrots, whatever's on hand. And rice crackers on the side for crunch & carbs. In the winter I make a big batch of vegetable soup when I have time, & have a bowlful whenever I need something in a hurry.

Hope you feel better soon!

Leah

Way to go, Fiddle-Faddle! That is one great cookbook. I still haven't made the coconut cake, but it sure sounds fabulous! And the jam sounds like a delicious addition.

Leah

Something I learned years ago (I'm an artist, avid cook & gardener & my hands need LOTS of washing!)-- use liquid soap, put it on FIRST before you wet your hands, rub up a lather, & THEN rinse it off. This lets the soap do its solvent job much better. You'll notice the difference especially if your hands are greasy, but I have a feeling it would help with the gluten too.

Leah

"Wheaty Days?" I love it!! Sounds like a Hallmark Channel Movie! Or maybe a soap--"Wheaty Days of Our Lives!"

Or maybe it's fom Shakespeare-- "My wheaty days, when I was green in wisdom" That's the truth-- green in a lot of ways!

Leah

Oh yeah, it would be SO great-- it's the small stuff that drives me crazy. I have very little difficulty staying away from direct gluten-- cc is the hard one. I hope it's real!

Leah

I am of the understanding that corn and rice are OK for Celiac. Then one day I was looking at the Chicago comodity exchange and saw "CORN GLUTEN" being sold on the futures market. Rice also contains gluten.

I thought they must be different forms of gluten but a chemist whith ADM (Archer's Daniel's Middlen) which is a company that specializes in corn and the like told me that he seriously doubted that there was any difference between corn gluten and wheat gluten. Does anyone know more about such?

I'm really surprised that the ADM chemist wouldn't be aware of the differences between the grain proteins-- I thought it was pretty basic. My sister's girlfriend who studied Food Science was well aware of the different structures & she was still in school. I guess that's why you can't always trust the "experts"!

Leah