penguin

Sometimes it amazes me how many people are on this board blaming doctors for all their problems. These are the people who also claim they get sick from touching or inhaling gluten and say they have allergies to 50 different types of foods and have 5 different very rare diseases. then when the gluten free diet is not working they think that they're ingesting microscopic quantities of gluten from "cross contamination".

Sorry, but why are you here?

Celiacs do get sick from touching gluten, because you touch your food, mouth, whatever with your hands. Some people also have a skin reaction. Celiacs get sick from inhaling gluten because your sinuses drain into your digestive tract, causing a reaction. It takes 1/38 of a slice of bread to cause damage in a celiac.

Celiac, by the way, is not "very rare", it occurs in 1 in 133 people. It's still in the reasonably uncommon category, but not rare. Celiac is an autoimmune disease, and autoimmune diseases tend to come in packs because of a hyperactive immune system. Therefore, it's completely possible to have celiac, hashimoto's, rheumatoid arthritis, and type 1 diabetes all at once. Allergies also tend to come in packs for the same reason. Intolerances are a bit more wishy washy, but if your body doesn't agree with something, it's not tolerated well then, is it?

Cross contamination is a very real problem, and until you experience it, lay off the judgement.

Most people don't blame their doctors for their problems, they blame them for not diagnosing them for years on end. It takes an average of 11 years to diagnose celiac. That's a lot of damage and a long time of suffering.

Well, I wasn't going to "call her out" but guess all docs can't be perfect for everyone. I am glad she works for you though!

Yeah, it's wierd how she said it wasn't "real" celiac with you, and you have worse symptoms than me. Yet with me, I get cc'd once and it's a dx. I don't know. Although, I did let her think it was her idea to test me for it. I think she's one of those doctors that don't see a difference between gluten intolerance and celiac, since the result is the same. She kind of confused me in that regard. I don't know, she's a bit wierd, but at least she doesn't rush and throw drugs at you I guess.

It won't work unless there is a good business case for it. At the moment, unless we can present viable alternatives (cost wise and production wise) for replacing the wheat-based ingredients, we simply do not have a big enough 'audience' to be worth it. Even if all celiacs were diagnosed, it wouldn't be enough people. It's a business decision. I'm not saying it's not worth it, by a long shot. I'm saying it needs some additional research behind it to provide the companies with a starting point so that they can see the possibility of a business case.

Ditto, even if all of the celiacs were diagnosed and vocal, we'd still be only 3/4 of 1% of the population. That makes us about 2.2 million strong, but in the scheme of the nearly 300 million, it ain't much. I think that our case might be easier to make once the FDA comes up with a definition of "gluten-free" in 2007/2008. I also think that the "whole grains" fad will pass in a couple of years and the useless wheat starch will be taken out of many products (ie: cereal). Do we have any rich lobbyists out there? We need an AARP

That's awesome, Vincent! Make sure you don't let him forget his signs! Spanish was my first language (well, along with English, but my spanish was better) and I forgot it by the time I was 5 because nobody was around to talk to me in Spanish anymore

Although, since he's already had exposure to a second language at such a young age, it will probably be easier for him to learn other languages, signed or spoken

I get the first symptoms in 15-30 minutes.

My doctor said that new studies say that IBS is linked to a seratonin imbalance and that gastro symptoms are how some people respond to imbalanced seratonin. That's why the SSRI's help IBS, supposedly.

In the short time I was on an SSRI, it didn't do a GD thing for my GI issues...

But that was way before I knew about celiac...

Your doctor was right in saying not to put him on the diet yet if you think you may do a biopsy. The thing about doing a biopsy after being gluten-free for any length of time is that it skews the results. If the damage wasn't bad yet or just patchy, and the fact that he is a young child, the damage would heal fairly quickly and they might not catch it on the biopsy. To have the biopsy done after being on the diet, you would have to put him back on a full gluten diet for 3 months to have a chance at having accurate results.

Now, if his blood results turn up positive, IMO there is no reason to do a biopsy and you might think about going straight to the diet.

I would at least keep him on gluten until his bloods come back and you see the gastro doc. Good luck!

I always get all nervous everytime I go to the doctor... is there a phobia for doctor's visits?

Iatrophobia - Fear of going to the doctor

Personally, I have Obesophobia...fear of gaining weight

I had to go to target to buy fat clothes last night

I've gained TWENTY POUNDS in the last 6 weeks from this 'effin gluten challenge. SO OBNOXIOUS!!!! Weight watchers August 20th, HERE I COME!

Well if thats the case peng-y you will need to remove your name from your sig to, and change your avatar so if some one replies using youre name she wont know its you... and and and...

Bla bla bla, picky picky

Lucky for me, there are about 4309308975087532 Chelseas out there, and I'm sure some of them have to deal with all the same crap.

And I like penguins

Yeah, one doc told me my grandmother, who died wasting away in a hospital bed from Celiac, had "real" celiac, and I didn't, because I am not thin.....?????? So I have fake celiac??

Yeah, sorry about that. Considering she's my doctor, too, that definitely annoys me, cause I ain't skinny either.

ChelsE,

I noticed you are now officially "penguin". Should we still call you ChelsE??

You could, or you could call me Chelsea, or Chels, whatever. I wanted to change the screenname because everything is googleable and I don't want my mom seeing all the crap I wrote and she know it's me on a google search

I totally forgot I asked scott to change it.

(I'm a little annoyed he didn't capitalize the "p", but oh well ) (Thanks, Scott!)

Anyway, new name, but same battime, same bat channel!

Julie - yes, cable, all the channels, yah! We can watch HGTV and food channel and then do all kinds of fun projects!

I need access to the food network as part of my job function

I also think we need more bathrooms than bedrooms, all with VERY POWERFUL FANS that are loud and industrial air fresheners.

The spoons theory certainly put things in perspective doesn't it.

I'm sure I must be one of the few that doesn't know what Red Bull is.

You've been living in organic-vegan land, right? Red Bull is an energy drink that is terrible for you but wakes you up and I justify drinking it because it has tons of b-vitamins and I need to function.

And reading over the butyoudon'tlooksick website, I was reminded that my doctor said the last time she saw me, "Are your cheeks always that red?" um...yeah? She just kind of made a "hmm" noise and went about her business. I always thought I was always so pink because I'm so pale...maybe not?

The spoon theory was linked a while back in another thread, but I don't remember which one. In the store for that site they have a whole section of "Celiac Disease sucks!" products. I want the apron

Open Original Shared Link

I printed the theory out for him and he seemed not to get it, but after a couple of days it's like a lightbulb turned on. He's always seen me run out of spoons, now he has a visual. Now we talk about spoons all the time

I'll try for on topic...

Um...I can add that my body really didn't appreciate spending two days at Six Flags eating Six Flags foods (Remember, I'm on a challenge, only a monthish to go!).

My hips are killing me and my innards are rebelling. I'm living on Red Bull.

I definitely used up all of my Open Original Shared Link for the weekend and then some

Konsyl (original) is safe for celiacs, all it has is psyllium. That's the one my GI doc reccommends.

You can bake too...right? I thought I read where you made some yummy deserts before.

I've been known to throw the butter and sugar around

Well Vincent, the only place I can think of that doesn't go over 85 (much) and snows a lot is Syracuse. I do not wish Syracuse weather on anyone! I had to walk a mile and a half, uphill, both ways, in two feet of snow (between October and May) to get to school. Ask Jersey, she knows and can vouch for me (Patti- tell them about the ridiculous hills between Westcott and Meadowbrook on Euclid )

I vote for somewhere with like, 1 good snowfall a year. Always on Christmas, and the snow doesn't fall on the roads.

I'm up for chef

Your bloodwork looks a lot like mine. They did an iron study on me because they said those blood levels (low hematocrit, small RBC's, and high platelets) are indicative of one of two things:

1: Iron deficiency anemia

2: Open Original Shared Link

Iron deficiency is caused by long term anemia, which in our cases is likely caused by celiac. With iron deficiency anemia, your platelets balloon and your red blood cells shrink. Hypochromasia means that your red blood cells aren't as red as they should be, and microcytosis means your red blood cells are smaller than they should be. Both are caused by long term anemia.

Thallesemia is a genetic blood disorder mainly affecting those of middle eastern and jewish descent. It's reasonably rare and is related to sickle cell. Usually, your MCV or MCH are ridiculously low. They do an iron study (looking at ferritin, saturation, and iron binding capacity) to see which it is, in my understanding.

Basically, eat more iron rich foods like beans and red meat, and try taking a supplement. Make sure to ask your doctor what strength of iron supplement to take.

The skin gets dark and the banana won't ripen in the fridge, but there's an urban legend that bananas become poisonous when refrigerated, which is complete bunk.

To ripen, leave bananas out at room temp. Once desired ripeness is attained, you can refrigerate to stop keep them longer, but the skin gets to looking gross.

Open Original Shared Link

I've read that it will be late 2007 or early 2008 before it's available.

I carry around a big ole purse. Almost diaper bag sized, actually. I don't have any kids, but everyone says I have a mom purse because of all I carry around *digging through purse*:

Other than the obvious wallet, phone, palm, ipod, business cards, keys...

mini manicure set (clippers, file, shaper)

chapstick

midol

tylenol

immodium

bentyl

deoderant

red bull

wet ones

"personal cleansing cloths"

sharpee

kleenex

calculator

visene

scissors

lotion

bandaids

antiseptic

lady stuff

usually a snack

I shudder to think what I'll carry around when I acutally have kids. The thing is, I've almost always carried all that crap around, even before celiac. Once a Scout, always a Scout, I guess.

I don't believe in using purell because all it does is kill the germs, not get rid of gluten or dirt. That's why I use wet ones, they do a slightly better job, and only when soap and water aren't available. I don't worry about bathroom soap, though I feel like carrying some around just because those ones are so drying. Gluteny oils and whatnot are an expensive product to put in cheap-as-possible handsoap.

I was gone for TWO DAYS and there are like, 30 more pages. I can't keep up!

Wow!! Pickard, yesterday was our 60th anniversary, we married young! We were home quietly but will celebrate/ our family here in september when our 3 girls will be here & some of the grands too. congrats in august to you!!

That's awesome, Evie! I hope we get there one day, 1 year down, 59 more to go

Has anyone tried with United?

No gluten. It's butcher paper (paper is made from wood) coated in silicone.