Michi8

Let me start by saying, she is fine! There was no major damage done. I just wanted to share this with everyone so it doesn't happen to anyone else. We were in Florida this past week staying at a hotel with a swimming pool. In order to get to the pool we had to go down a floor in the elevator. We were getting ready to go swimming last Monday and Tori (my two year old daughter) was getting really fussy because it was taking everyone so long to get ready. She threw a fit when I tried to put her shoes on, so I just skipped it. No one else was wearing shoes in the elevator, so I figured I wouldn't force her this time. It just wasn't worth the fight. When we got to the elevator she charged at the open door as it was closing. It closed on her and drug her toes down into the tracks and the door closed over them. We managed to get the door open again, though we weren't sure we were going to be able to. Her toes were bleeding badly and we weren't sure for quite some time if she was going to have any permanent damage. Anyway, she IS fine and we ended up not having to take her to the ER for stitches. She's recovering well and was able to enjoy the rest of her vacation. We were very lucky that she didn't lose any toes. I just wanted to share my story with all of you. Please, if you have young children, make them wear shoes on elevators and escalators! I would hate to hear that this happened to someone else. Having your kid screaming at the top of her lungs while literally stuck in an elevator track is NOT fun.

How scary, Angie! I'm glad she's okay. Elevators and escalators can be dangerous. I remember when my eldest was a toddler and he had his hand on the door of the elevator at our condo...when the doors opened his fingers got pulled into the wall...pretty scary, and very lucky he wasn't seriously hurt (though it did hurt a lot!) Accidents can happen so quickly!

Michelle

GlutenWrangler, I apologize if I am misunderstanding you, but I am seeing this from a different perspective.

It's hard enough to get a doctor to agree to order just the celiac panel, even when we have already "proven" the existence of a probable cause just by dietary response. But when you request to be tested for 132 allergens and say that insurance will pay for it, even if your doctor does okay it, that makes it that much harder for the rest of us. The insurancemay pay for your 132 allergen tests, but it will make up the loss by refusing to pay for someone else's truly necessary, Life-and-Death test.

If you think you have a problem with food allergies, then do an elimination test--that's more reliable anyway, doesn't cost you (or anyone else) a thing, and you don't need a doctor's approval. If you find from the elimination test that you react to something, you can then either eliminate it from your diet, or, if you still want confirmation, then present your evidence to your doctor and ask for tests for the things that you react to.

Am I the only one who sees something wrong with a patient who walks in and requests expensive tests for something that can be confirmed more reliably by an elimination diet? Yes, your doctor may very well be a jerk and/or an idiot. Or, he may have found himself in a situation where he made what he sees as a mistake (by agreeing to the test in the first place) and now wants to correct the mistake.

The only part where I agree with you is that you had to shellout $75 based on his initially approving the test. Can you return that and get your money back?

The cost of allergy testing is very low compared to many other types of tests (genetic testing or MRI for example) so I don't see an issue with insurance paying for it, nor do I see how it would really affect how a different patient would end up not getting coverage for something that is "life & death." Insurance doesn't really work that way...they will make up losses by raising premiums instead. When I did my own allergy testing (prick test and patch test) I had to pay for the kits out of my own pocket, insurance wouldn't cover it at all. The allergist who did the test got paid though (provincial public insurance.)

Michelle

These are their chili powder ingredients as listed on their website:

Ingredients

CHILI PEPPER, CUMIN, OREGANO, SALT, SILICON DIOXIDE (ADDED TO MAKE FREE FLOWING), AND GARLIC.

Don't know why it's different than listed on your bottle...maybe "spices" does mean cumin and oregano?

Michelle

Have you seen a dermatologist to determine what the skin issuses may be? Has psoriasis been ruled out? From what I understand, psoriasis can be responsible for the type of flaking and dryness that you are describing. It has also been found that, for some, going gluten free can be helpful.

I suffer from what the dermatologist thinks may be psoriasis (by description) but he hasn't positively diagnosed it as I haven't been in to see him during a flare-up. I do have problems with dryness (though not as severe as you decribe) and itchy "acne" type areas on my face, neck, behind ears, back and chest. I tend to have flare-up patches on my elbows, knees, hips, etc. I have only been gluten free for a short while, and do not yet know whether I actually have celiac disease (though I'm thinking it's more likely gluten and/or dairy intolerance.)

Michelle

I asked for the test because I think I have other food sensitivities. I didn't march into his office and demand it. I asked if he would order it for me, which he did. It was when it was time to have my blood drawn that he refused to do it. Obviously I'm not going to be allergic to all 132 foods, but I like the idea of having everything covered. I really don't care about there being no correlation between positive results and reactions. For the purposes of my own health, I would like to know what my body is reacting to any any level. The main point is that it's my health, not his. If my insurance covers it, where's the harm in it? Not to mention how unprofessional it is to order the test for me, and then refuse to complete it after I spent $75 on the kit.

It was very unprofessional of him to order the test and then refuse to complete it! However, I would be hesitant about relying on this type of allergy testing...especially when it's testing for so many specific foods. I would be concerned, especially, if you were to get a false positive to foods you aren't actually allergic to...it would be a shame to end up eliminating a food if you don't really have a problem with it. It really is more accurate, though time consuming, to do an elimination diet to test for food reactions.

I've had the skin-prick and patch allergy testing done and found, that while it seemed to be fairly accurate for my environmental allergies, the food tests were hit and miss. I tested negative on some stuff that I had always been allergic too, but I sometimes still have the odd reaction even though I've "outgrown" my allergy. I think that the severity of reaction is what has really changed, in addition to foods that cross-react with pollen allergens.

Michelle

Still doesnt excuse the rude response, they could have told you that much...like...: "The doctor hasnt had good results with that product and does not recommend it.."...or..."its still in clinical trials"....

Sandy

Thanks, Sandy.

I actually got a quick reponse from the Dr's office. They left a message for me saying that the dr finds Golytely/Colyte does a better job of cleansing, so that is what I must use. I'm pleased that, though the receptionist was rude, she did take my inquiry seriously and responded quickly. I prefer to know "why" rather than "just because." Still wish they were nicer to talk to though.

Michelle

I just called to see if I could use Pico-Salax for my colonoscopy prep rather than the Golytely/Colyte. I'm pretty sure I'm going to have a lot of trouble keeping 4 litres of that stuff down, and heard that Pico-Salax is much less product to take, and easier to take.

The receptionist was incredibly rude. She told me there was no way the doctor would allow this or ever consider it. She told me she wouldn't even consider asking the dr about it. I asked that she ask the dr on my behalf then. I don't give two hoots if it's inconvenient to her...what if the dr has never considered this product, and decides that maybe it is okay to take (though I'm not holding my breath on that one!) I'm pretty sure I'm not going to hear back on this either.

This office and dr treats patients like they're pains the ass (no pun intended!) I hate being made to feel like I'm bothering someone when I need important information. I hate being made to feel like they're doing me a huge favour by attending to my health issues. How do people like this end up working in a business that deals with human beings? Shouldn't doctors be trained to be sensitive and caring towards patients? This goes for pretty much every specialist I've been sent to see in my lifetime...what is with the holier than thou attitude?

Michelle

OMG! OMG! That could be it. When a cat scratches me by accident I also get a real bad rash. Never knew, that cat litter had wheat in it. Duuuh ! And I was wondering the whole time, what in the world is at that cat's paw, that makes me react allergic???

You could be allergic to cat dander too...and more likely than a skin reaction to the cat litter. I always get a rash and welts from cat scratches...that was my typical reaction to cats before my allergy got bad enough to cause asthma attacks.

Michelle

Hi Allison,

welcome to our board. It already happened to me too. I think, it was even on this board. I'm in so many boards, I can't even remember it anymore. I have the same problem. I know of a lot of things, that celiacs could do around here, but I'm not allowed to post it, since I'm the host . So I'm shutting up. It's kinda sad though. Well, never mind. What I actually wanted to say was, don't feel ashamed, it happened to a lot of us. Feel free to ask questions, whatever it is, we will be fine with it.

Hugs, Stef

Has it ever been considered to have a Buy & Sell Forum and/or and Upcoming/Community Events forum for those types of posts & links? Or would that be a duplication of the Calendar on this site?

Michelle

Thank you everyone. There is no doubt in my mind that it has something to do with the ice cream. It happens everytime I eat it, so I have decided to not eat it anymore. It may be the fat content, more than likely, it's the milk and sugar together. Ice cream is the only true sugar I eat, other than natural sugars in fruits and such. I never use sugar. Tonight, I tried ice cream again. I was very engrossed in a movie on tv and realized I was coughing, again.

Just a thought...does the coughing happen when you are actually eating the ice cream? Could the coldness of it be triggering the cough?

Michelle

I was on the pill for 6 years. When I went off, I had no period for a year. I took the "let down" hormones to have a period every 3 months. My period finally started on it own in August. I have had a 76 day cycle, a 25, a 25, and a 32 since then. Looks like things are trying to even out.

My periods were actually worse on the pill. Cramps were severe. Mood swings sucked. Things are better, for me, off of the pill. I do FAM/NFP now. I suggest the book Taking Charge of Your Fertility by Toni Wessler (not sure about last name spelling). Great information about cycles.

It's a great book, and I think it's a must read for every woman. BTW, the spelling is Weschler.

Michelle

I think even NT's can have aversions to touching or giving/getting hugs. Some people just dont feel comfortable with it...I know some people who are like this and then there are others who are more touchy/feely type people naturally.

I probably wouldnt like it too much if a stranger touched my face either. I sometimes dont like it when customers at work get my attention by touching me and I sometimes dont like it when people invade my space. I think it depends alot on my mood and/or how I'm feeling.

I get bothered by things like this much more since I got sick...normally I would consider myself to be more of a "touchy" type person and I dont mind lots of hugs. I find that I'm just irritated easily now and especially when I'm not feeling good.

Some people are just naturally more "touchy" than others. I've had to learn to be more accepting and giving of touch...I've found it much easier since having kids. But there are times when touch just plain annoys me...like when I sleep...I hate having my space crowded/invaded when I'm sleeping (except for sleeping with my kids when they were babies .) I also hate having the kids climbing all over me when I've had a day of sensory overload.

My middle child is like this as well. There are times when he enjoys being cuddled, and then there are times when he recoiles from touch...it really depends on how much over-stimulation he has experienced during the day (he is a truly highly sensitive child...touch, taste, smell, etc.) He also needs some days that have absolutely nothing planned so that he can completely decompress from all the stress of his week.

Michelle

thanks for all your responses! i have one week left on the pill and then i will stop. im praying my vertigo goes away........

As with anything, experiences on and off the pill are so individual. I found the pill really messed up my system...while it helped my cramps and length of cycle, it gave me really bad morning sickness, wreaked havoc with my libido and caused weight gain.

I found I lost weight when I went off the pill, but my libido took a while to return to "normal"...unfortunately, some studies have shown that the pill can have a negative impact on libido that can last a lifetime, even when a woman stops taking it. I'm no longer a fan of hormonal contraceptives, and am concerned about the lack of information given to women when making the decision to use these pills/patches/shots, etc.

Michelle

Open Original Shared Link

Anybody tried this combination of flours before? Anything other than pancakes?

I'd like to try those...sounds like they're better healthwise for even those who aren't celiac.

Michelle

Welcome Allyson- don't worry about it! And don't go back to lurking! This is a good place and I think gfp just wanted to warn you before other people jumped on you (looks like that happened anyway).

We're glad you're here and ASK AWAY

Michi8- that has GOT to be the funniest avatar I have ever seen! Where can I get it? Will they make one I can paste to my head? Or place on my back.

I found it on another forum I frequent. There is some pretty funny stuff out there if you search around...I just copied it onto my computer and then pasted it in here.

I need one of these signs on my forehead to remind my DH during the times of the month when I have a very short fuse. He just doesn't pick up on the other "subtle" clues like, "I'm warning you ahead of time...stay clear of me today, I'm not dealing well with stress." (Or something to that effect.)

Michelle

This is an interesting thread. I'll have to watch the movie. My nephew has Asperger's syndrome. My brother also has some Asperger traits. My Mom said he didn't talk until he was 3. They were thinking he was mentally retarded, but when he did start talking, he talked in whole sentences .

I'm sensitive to noise and light, but only when I'm really tired. Could this be some really mild Asperger's trait? I also tend to be really straight forward in my communication, and lots of people don't like it . I'm just wondering to what extent some of this stuff is genetic.

Claire

I've been following this thread with much interest. While I don't believe that I or my children possess the criteria for Asperger's (and this has been confirmed through our psychologist), I know that we are all very sensitive. I like the term "HSP" (Highly Sensitive Person) to describe our personalities/traits. I've found a lot rang true in the books, The Highly Sensitive Person and The Highly Sensitive Child by Elaine Aron, PhD.

She has a website here: Open Original Shared Link There are few other websites that address this as well.

Michelle

MIchelle,

I would have thought so too, but I saw in Clan Thompson food guide several items that were suppose to be free of gluten - of course I am sure there is always a huge cross-contamination with everything there. It had said several items were made without gluten (mashed potatoes, baked beans, and more) but I don't know when he makes his list up - jusst that we get updates every 3 months. This changed last week. HOwever, I know think it is down to the corn on the cob being safe and I don't even know if I would trust that! I do not eat out! this is very hard for my child to do though.

Mary

Okay, that makes sense. I don't think much, if anything, at KFC in Canada was ever gluten free though...they never have offered mashed potatoes, baked beans, corn on the cob, rice etc here...although rice may have been a menu item for a short time.

Michelle

I had forgotten this. We had only 5 stations too! It is a new world. You and I must be of the same generation. I'll have to pull out that story when my son complains about the limitation I put on TV and video games. I vowed I would never tell the stories. My parents were, and still are, really bad about it but I find myself doing it anyway.

5 stations would have been luxury! LOL! We had 3 stations and a black and white TV!

We have to tell the stories to our kids though, it's an inter-generational tradition. With all the gadgets and luxuries kids have now, can you imagine what stories they'll be able to tell their kids?

Michelle

who lives in the land where's there's almost 6 months of ice, snow and frigid temperatures. BRRRR

Experiment with different kinds of rice...plain brown isn't the only choice. You could try rice mixes with brown, white and wild too.

Try buckwheat as well. It makes a nice side dish or cereal. I posted a recipe for buckwheat here:

Open Original Shared Link

And here is a recipe for Baked Millet Kasha from my Ukrainian cookbook:

1 cup millet

3 cups cream or rich milk

1/2 butter

1 tbsp onion, chopped, fried

1 tsp salt

1/2 tsp sugar

Wash millet until the water is clear, drain well.

Boil cream, add millet and cook until thickened. Remove from heat, add butter, onion, salt and sugar. Mix. Pour into a casserole dish and bake at 325F for 50-60 minutes.

Michelle

Welcome, Allyson! Please don't go back to just lurking!

Michelle

Kentucky Fried Chicken Update - We have just been diagnosed with Celiac and my daughter is 15 a has started going out with her friends and regaining her life after 4 years of illness- very sensitive- we purchased Clan Thompson's Celiac Food List and found out the hard way that things are always changing. Kentucky Fried Chicken has changed their items to include wheat please see the new allergy information that was listed as of 1/27/07 - I saw a list on here that was incorrect - maybe it was old. But the celiac disease Food List is now out of date and I thought others should know

Mary

I'm confused, I thought that KFC products always had wheat in them. What products have changed?

Michelle

Just to clarify, Lisa, are you having an endoscopy on the 21st and then an endo and colonoscopy on the 27th? Is there any increased risk (infection or damage to system) to have the second procedure so soon after the first? Is 6/7 days long enough to recuperate before undergoing meds and scopes again?

Michelle

My doctor wants me to have a colonoscopy because my last blood test showed low iron. Is there a prep especially for celiacs? Should I have it done by any doctor or one who knows about celiac disease? I am 59 now and do not do well with tests like this. Thanks for any help with this.

I have been told that Pico Salax is a relatively easy prep...much less fluid to get down than with colyte/golytely. My dr has asked me to prep with colyte/golytely, but I will be asking if I can change that to Pico Salax instead.

Michelle

hmmmmmm....I'm not getting ANY gluten, the proof is in the poop. I just don't know what's going on. Maybe I'll try antibiotics for a bit.....I don't know what else to do. So - - your body aches from accutane? wow......I don't know which is worse to be on - antibiotics or acutane.......

DingoGirl, if you even have an inkling that it might be dairy, I'd suggest eliminating it for awhile and see if it makes a difference! Much better than going the antibiotics or accutane route.

Michelle

I noticed you can't do spices. I couldn't either for awhile. Have you ever tried drying papaya seeds in the oven and grinding them up in a pepper grinder ? They taste a little like pepper, but are actually digestive enzymes ... just in case you want to try it . You heat them at 250 degrees for 1 - 1 1/2 hours, then let them cool and fnish drying out on a paper towel ..

I like apples, fuji or pink ladies, with salt to satisfy my salt cravings ... olives sound good too though ..

marcia

Watermelon with salt is really good too.

And right now I'm munching on Kettle yogurt and green onion chips -- yum! (Gotta stop before I polish off the whole bag! LOL!)

Michelle