Michi8

For me hair loss is directly attributed to celiac. I had lost almost half my hair and it had turned almost all white by the time I was diagnosed. It began growing back in a few weeks after I went gluten-free, and what is growing in is brown.

It's interesting to hear your colour is coming back with new growth. I've been greying since I was 18, and now, at 38, probably have more grey/white than dark brown hair...so I've been colouring it. I would love it if some of my white returned to brown!

Michelle

Frost bite is possible within one minute in some of these tempertaures in Alberta! This is what we have to look forward to tonight:

"The stationary Yukon high which brought frigid conditions to much of Alberta remains entrenched over western Canada. Northwesterly outflow winds from this high over central and southern Alberta are expected to produce extreme wind chill values after sunset and into Wednesday morning. Wind chill values of minus 40 to minus 45 are forecast for the above mentioned warning regions."

YAY!

Does anyone else find it hard to breathe in this weather?

Yes. When I went out to my car after excerise class last night, breathing hurt...didn't give me an asthma attack though. It was -40 w/windchill at that point in the evening.

Michelle

I know this is a little off topic but.....

Michelle does your daughter have celiac? Before my diagnosis I was always hot. So much that when my family went camping in the mountains my parents and my sister would fight over who I was sleeping with. I was a small kid about 4ish too. They said I was a heater.

I remember sometimes I would get so hot I would throw up in the summer time. That lasted for a few years after I was gluten free.

-Laurie

Hi Laurie,

We don't know if she has celiac. I suspect there is something dietary behind her eczema & asthma, and we do know that she has multiple airborne allergens (pollens, dander, mold, mildew), but all food tested as negative. My oldest (son) has GI issues we're working through, and my middle (son) has multiple sensitivies (touch, taste, smell, sound), is a selective eater and is rail thin. I think all of them could potentially be celiac (all three have allergies)...but it will likely be a long process figuring it all out.

Michelle

ok you guys , send some warm weather up here!

On top of the cold sanp and frigid wind chills, I have to walk everywhere including walking the kids to school all bundled up so they get there safe. Dearest hubby smashed up his truck (no one hurt, thank goodness) and is using my car to get to his job.

I am cold to the bone and wrapped in blanket after being outside yet again. Supposed to warm up later in the week. Yipee

Sandy

I'd be tempted to take "snow" days (or is that frozen days?) off from school and errands.

A friend yesterday waited with her son for 35 minutes in these temps for a school bus that didn't show up (she later got home to hear the bus didn't start.) There were 7 other neighbourhood kids with her, and most of them couldn't go home, because their parents had already left for work! She had quite the time figuring out how to get the kids safely to school...luckily another neighbourhood mom drove by and was able to shuttle the kids in her van.

The schools do not shut down unless there is a windchill of -50C! Apparently there once was an incident where a parent dropped a kid off at a closed school and drove off. So it's got to be awfully cold for them to actually close the doors now. Sometimes the buses don't run because of road conditions. We need to listen to the radio in the am for bus info.

Michelle

who's freezing her butt off at -40 windchill tonight (car almost didn't start after being at the school all day) Have to go out for family/teacher interviews tonight too -- Brrr!

I'm not sure this is where I should be posting this or if I've somehow missed another post on the same topic, I apologize if either of those is off.

I've been off of gluten for a few months now, cheated here and there, but overall feeling much better and almost positive that was my problem. I've always had very thick mane-type hair, though it's fine so it looks very normal, but my stylist is always tempted to charge me for multiple haircuts. I usually keep it short but I grew it out again recently and for the past few months I've been losing hair almost constantly. Every time I run my hand through it I get a minimum of five strands back with it. I am eating a balanced diet. It isn't leaving in chunks but I've never experienced this before. Is it possible that having way too much hair had something to do with Celiac's, or that there's something new wrong? I know this is a long shot but I managed to miss a lot of noticable symptoms so I figure if I'm so acutely aware of this there must be something to it. Any help, anecdotal or otherwise, will be appreciated!

I too have a very thick head of hair, but the strands are fine. I remember noticing way more hair loss when my hair was long rather than when it was short. Part of it is that long hair doesn't fall free as easily (gets trapped with the other hair, or sticks to clothing, etc.) so will be more noticable when you brush it or wash it.

My experience now is totally different. I noticed thinning along my hairline & part when my hair was still long. now it is very short, and I am constantly loosing a lot of hair. There are at least a hundred hairs in the bathtub after a shower, more all over my bathroom from blowdrying, hair left on my pillow in the morning, and hair falling free when I run my fingers through it. I'm totally freaked out about it as I'm noticing more thinning around my part and the hair that it growing back is even finer.

I've just started the gluten free diet, so we'll see if it helps. I don't know if I'm actually celiac...haven't received my biopsy results (not enough samples were taken anyway!) and blood work was negative. I do strongly suspect I've got thyroid issues, because it runs in the family...and there is a long history of GI issues too. My iron was low too, so I'm supplementing now. I really hope that this hair loss thing slows down and reverses itself!

Michelle

I've had canker sores before...I thought those always hurt ?? This wasn't painful at all.

Maybe they aren't canker sores then? I was told they were (I get those as well as the larger ulcers...and both come on quite suddenly.) I've found they don't hurt as much on the cheek as on the gums or tongue. When they pop they can be a bit more sore.

Mcihelle

Right now it's -25c but with windchill it feels like -40c. The forecast for the week is pretty crappy until Wednesday (high -11c low -26c) and Thursday will be a toasty -1c. I can hardly wait. Global Warming where are you? I guess the conversion to Fahrenheit doesn't matter because it's all the same at -40. Brrr.

Now I am on a quest for low-rise 33" inseam long johns. I have some long johns that are not quite long enough but have a high waist. I feel like a little old man with my waistband up around my armpits.

My other long johns are low-rise, but barely get to my calfs. I guess they're short johns.

Trust me, you don't want low-rise long johns. Consider how cold all those young girls with the love handles hanging out over their pants, and waist length winter jackets feel when the cold hits their midriff! I, for one, do not want a frostbitten belly button!!! LOL! Besides, if you really have to have fashionably lengthed long johns, you can just roll the top edge down.

So, I wear my Helly Hansen long johns a little higher in the waist above my jeans...doesn't matter much when my sweater goes below my waist...covers it up nicely. The best is that my long johns are thin enough to fit comfortably under my snug-fitting jeans. With my 3/4 length down parka, scarf & toque, I'm quite the fashion plate, but hey, I'm warm!

Today I fought with my daughter (4) to actually wear socks under her boots and mittens on her hands. For some reason she is always hot, even when the weather is -33C with the windchill like today. And we had to be out of the house and in and out of the car a lot today too. Blech!

Michelle

No, that's the weird thing - it felt plenty moist.

The sensation has since gone away - I still have no clue what that was all about. Before it went away though, the underside of my tongue got sore - it kind of felt like the frenulum (the little string that attaches your tongue) felt swollen. I also got kind of a pimple between my right cheek and gum. I've gotten those before (have no clue what those are, either), but I just break it and it goes away.

It's just to keep life interesting, I guess !

The "pimple" was probably a canker sore...I get them occassionally. You may have had canker sores under your tongue too (canker sores can be like pimples, or can be open sores, or just sore spots)...considering the whole area has mucous membranes, it's not surprising it would react to foods you are sensitive to.

Michelle

For those taking iron supplements -- just got email confirmation from Salus that their Floradix tablets are gluten free. The liquid version is not, however. If you prefer to take a liquid format, Floravital is their gluten free version.

Michelle

can we have ferrous gluconate?

Hanna

Yes, provided the format you take is gluten free.

Floravital (Floradix is the original version) is a liquid iron supplement that is gluten free. The iron is supposed to be more bioavailable than in pill form, and is less likely to cause constipation. I have been taking the pill format of Floradix, because there is no vitamin B12 in it (I'm allergic)...as far as I can tell, they have no gluten either (am waiting to hear back from the company to confirm this.)

Michelle

Thanks, Ursula. I was disappointed to hear the dr "wasted" one of my biopsies on my stomach...especially if everything looked normal there. Guess I just have to cross my fingers that the other biopsy shows something useful.

Enterolab is intriguing, but out of reach finacially at this point. If anything, it would probably be more helpful for my brothers and my father to get the celiac panel done...especially my brothers given they have very strong GI symptoms. My DH should as well, given his Scandinavian heritage and the GI symptoms he and his extended family have. However, they all are resistant.

I am getting set to officially start the diet on Monday. I've been invited to join my parents for lunch at Olive Garden tomorrow...it's my one last gluten-filled meal...haven't been there for a long time, and probably won't be going back anytime soon.

Michelle

Hi,

I have only just joined the forum, I dont really have any advice for you except to say that I am exactly in your position, I had my gastroscopy on Monday and found out on Friday that everything was normal and I (according to the results) dont have celiacs - I was absoloutely shattered, I cried and cried because I guess I really feel i have this and want a diagnosis for what I have - more so people dont think I am making it up, that i am tired and nauseous, etc - I know I am sick but it just feels like other people dont really believe me! Anyway, i came to grips with it and have decided to start the diet, started on Friday, dont feel any different yet but i know it is going to take time, I had to go to dinner last night for my friend's b'day(lots of people who didnt know me) and it was of all places, held at a pizza and pasta shop, I nearly caved - it was really hard, especially when you dont even know for sure it makes you sick - would be easier to comit to if i had a diagnosis, but ended up just having rice with chicken(only because i still have to reasearch what i can and cant eat - i know it is going to take some time before i feel confident eating out!) , got some very funny looks, and a couple of people thought i was one of those people who diets when they dont need to - had to explain the whole i think i have this disease but all my tests came back normal, just felt really uncomfortable. But anyway, I know I have to do this, I want to feel better and return to the person i used to be, I know it will be worth all the uneducated comments and looks if i finally start to feel better. I know its not really advice, like i said i am not in a position to give advice because i still dont know if i even have celiacs or gluten intolerance - just want you to know that i totally know how you feel and i felt better reading your story, knowing that there are other people with negative results and feel the same as me.

Hi PetaC,

I totally get the dilemma of starting and sticking with the diet with inconclusive results. Although, I'm beginning to think that there's likely a much higher rate of gluten intolerance in North America than is even now being reported...and going gluten free may just be more healthful anyway.

I'm worrying, too, about comments when I am eating differently than everyone else. I hate the feeling of divulging too much info...gives others the impression that it's okay to ask me personal questions and to pass judgement when it's not. I think I have to come up with a short and sweet answer to stop enquiries without getting into personal details (turn the tables and make those nosey people uncomfortable instead.)

Michelle

I highly recommend you read Celiac Disease: A Hidden Epidemic by Dr. Peter Green and Rory Jones:

https://www.celiac.com/catalog/product_info...products_id=477 It is very thorough and informative about Celiac Disease, the symptoms and health issues associated with it, testing, diet, etc. You should be able to find it at your local library.

Michelle

Are you sure it's not contact dermatitis? If you're reacting where your watch is, you may be allergic to something like nickel. Nickel in the diet of someone who is allergic/sensitive (such as in certain foods and multivitamins) could have ongoing reactions anywhere on the body as well.

Michelle

Rice cookers have a sensor and turn off when the water has boiled out. They don't necessarily cook rice quicker than a pot on a stove but because they turn off they are not supposed to scorch the rice.

I bought a mid-range Rival rice cooker and found it does great as long as you unplug it when it stops cooking. If you let it sit with the "keep warm" cycle, it is just as likely to scorch the rice as stove top.

I use the stove top for all of the brown rice varieties and only use the rice cooker for the white rice.

Bottom line for me is that both will work fine if you follow the directions and remove them from heat at the right time.

I am putting my vote in for the basic Sanyo rice cooker. It's cheap, but works really well. I have never had scorched rice from it...even when I use the keep warm feature. I've been using it for probably 14 years, and it's still going strong. It comes with an instruction booklet that recommends different amounts of water for different types of rice...also has a few recipes.

Michelle

Wouldn't that be great.

Just FYI...here is a link to proposed changes to the current labelling regulations:

Open Original Shared Link

Michelle

A quick Google search for "PTH Intact" brought up many links about tests for Parathyroid Hormone.

Michelle

In Canada, Lucerne does not have to list those types of ingredients. I don't think our laws are the same. But please somebody correct me if I am incorrect.

You're correct, the are no laws in place at this time...though they are in the works...and it sounds like they will be more inclusive than the U.S. laws.

Michelle

I'm afraid family wouldn't have much nice to say about going vegetarian...especially vegan...they roll their eyes at organic too. But, I've never seen them purposely undermine a diet...they just wouldn't think about it when making food for everyone. I'll never forget the time my BIL made dinner at the cabin...with peanuts!...I was still allergic at the time, and devastated that they were so insensitive (didn't help that I was only a few months postpartum at the time and an emotional basketcase!) But I know it was simply that, since he has no allergies, he simply didn't remember mine...but, after that incident, he doesn't forget now!

Thanks for the encouragement to go gluten free...now I've got to actually do it! Yikes!

Michelle

Thanks, Nancy. It's really nice to hear that others have BTDT. It would be nice to have a medical diagnosis to back up my dietary change, but, really, what's one more thing to make extended family think I'm off my rocker? I'm already considered the family hypochondriac who is over-the-top allergic to everything anyway.

I just got off the phone with DH too...he is 100% supportive of me going on the gluten free diet, and repeated to me that the testing can be inaccurate. He's also supportive of dietary changes with our son to get to the bottom of his GI issues. I feel a lot better having talked to him.

Michelle

Turkey pot pie. We make a couple of pies, and then also freeze some of the filling separately to make into pies later. Could also use it for a Turkey stew, chilli, shepherd's pie.

Michelle

Not much snow here, but right now it's -16c or -26c with the windchill. Monday's forecast high? -27c low of -31. I love it when our highs are -27c . Tuesday sunny high -18c low -30c. On the bright side, I do get to spend an hour at the arena tonight and a minimum 2 hours in a cold arena tomorrow, and another hour on Sunday as well. Sunday will be the killer. They changed the hockey practice, so each boy has a 7:15am practice and I'm working Saturday night so I won't get to bed until 1am then up at 6 for hockey. I must love my boys very much.

Where are you Chinook? Come out, come out wherever you are!

I love my boys very much too, but I'm happy they aren't interested in playing hockey! The schedule would be all consuming!

Michelle

who is very glad to have a new furnace this winter!

Is it possible that when she said she took two biopsies that she meant she took numerous samples from two locations? Several from stomach and several from duodenum? I'm sure you'll get a call in a week or so and if you are concerned call her office today.

No, she took two biopsies only. I'm sure it's because everything looked fine. I don't think calling her office will do much...she's got a horrible bedside manner (and so does her staff.) I was almost in tears over the dismissive way she talked to me on my initial visit. And, I doubt she would book another gastro just because I wanted more biopsies. Next encounter with her will be for my colonoscopy in March...which will probably be 100% normal too and a total waste of everyone's time. This dr's area of interest, BTW, is celiac.

When Ty had his, I believe they were all from the duodenum, but I don't know that for sure. I also don't know (or have forgotten) how many samples were taken. He was at the old Children's and it was all so overwhelming at the time that everything the doctor said went right out of my head immediately.

As for why you've been dealt this life of health issues - probably because you are strong enough to handle it. Right after Ty was diagnosed and he wasn't even six yet, we were all around the table eating supper and my older son was kind of complaining about never getting a Domino's pizza again and that's when I figured ut (and told everyone my theory) that Ty was the one with Celiac because he was the strongest of us all and he was just going about his business not complaining and just getting on with life while the rest of us tried to deal with the loss of just going out for the day and grabbing some junk at the food court, or not getting take-out pizza on pizza night.

I don't feel strong enough. I've had allergies since toddlerhood...it's always been one thing or another... And now my kids have health issues too. So I worry about them as well.

I hope you feel better soon and get some answers as well.

Thanks

Michelle

I had my gastroscopy yesterday, and it went well (though I have some stomach pain today.) I found out, however, that the dr only took two biopsies. One was from my stomach and one from my duodenum. I had talked to the nurses about how many biopsies the dr would take and I was told "a few." I didn't really have opportunity to talk to the dr ahead of time (she was booked with back to back procedures all day.) I am soooo disappointed that I waited 3.5 months to have this testing to only have two samples taken.

Everything apparently looked healthy, and the dr left notation that all was normal. I'm pretty sure that the two biopsies will come back normal too. So it leaves me back at square one again.

I had a biopsy done for DH about a year ago, but the dr took the sample from the wrong spot. So I have no confidence that the results were accurate. All my labs have come back normal, except for iron which has been on a steady decline. I started taking iron supplements, which seemed to have helped my energy a little bit, but hasn't helped at all with my hair loss, insomnia, moodiness, feeling cold, IBS, lactose intolerance, skin issues, libido, etc, etc.

Next labs will be done in January to test my iron levels and to do a thorough testing of thyroid again. In the meantime, I want to start the gluten-free diet to see if it makes me feel better.

I had really hoped that there would be some signs of intolerance though...as much for my kids as me. I wanted to know if there was reason to pursue further investigation of their health issues (1 son has chronic constipation, stomach upset and occassional incontinence, 2nd son is very thin and very sensitive, and daughter has chronic eczema and the beginnings of asthma.) My husband needs to be tested too (he's got multiple digestive symptoms, as does his family) but I know he will resist.

I am so frustrated and disappointed. I really feel let down by the medical system. I know this isn't all in my head. I just want concrete answers so I can start feeling normal. And I want someone to talk to about this...noone is home right now, and DH is too busy at work.

Michelle

bump

Thanks for reminding me about the holiday, I had forgotten...our Thanksgiving is a month earlier.

I'm feeling pretty low today. I'm really frustrated with my ongoing symptoms (a looong list) and the fact that every test I do comes back normal. This stuff isn't in my head (IBS symptoms, hair loss, skin issues, exhaustion, feeling cold, moody, etc, etc) and I'm so tired of dealing with this (IBS and other symptoms for 20 years.) I just want to get some answers.

Why have I been dealt a life of constant health issues? What is it like to be completely healthy and have no allergies or food issues?

Michelle

Anybody reading my posts?

Anyone have a normal looking system and still have a positive biopsy?

I'm feeling a little disappointed today that I spent 3.5 months waiting for this darned procedure to have her only take two biopsies. I didn't get an opportunity to talk to her directly before the procedure either...only to the nurses, who had assured me she would take a few samples.

My stomach is cramping a little bit today. I believe the dr took a sample from my stomach and one from my duodenum. Can positive results be found from either of those sites, or did the dr miss the mark? She is supposed to be well versed in celiac (it's her specialty)...I'm really surprised she only took those two samples. If the samples come back negative I'm still going to end up wondering if it's a false negative or not.

Michelle