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climbmtwhitney

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About climbmtwhitney

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  1. Hi all, I'm keeping an eye on my 5 year old son. He has skin coloured bumpy elbows which sometimes scab, but are sometimes just clean bumps, too! He also has a rash that comes and goes on the back of his neck. I'm just watching it for now - the areas are classic DH spots, but he doesn't seem to be itchy on his elbows, just his neck. And it is presenting differently to the way mine did. Has anybody seen just 'bumpy skin' as a DH presentation?

    Thanks for any thoughts

    Yes! My son gets DH on his elbows and the back of his neck too. Usually just bumps as well. Sometimes very red, sometimes not. The ones on his elbows are super painful for a day or two. They're itchy, but only mildly. He's 9. At first (several years ago) he would get them on his neck (and those were very itchy), but now it's almost always on his elbows. The last 2 times he accidentally had gluten it took about 24-48 hours and he had the rash. We were 100% positive he had gluten. Once was at school when his teacher gave him an ice cream sandwich and he thought he could just pick off the crust. :blink: The other was when I mistakenly mixed up the Applegate chicken nugget boxes at the store and he had 1 bite and said "mom, these taste different!" His one bite and my one bite (while serving them) made us both horribly sick. : (


  2. Now that we have 3 kiddos in the family diagnosed with Celiac/gluten issues, I'm trying to find local buddies for them. We are the only ones in the school at this point. The school nurse is going to send a letter around to the other local elementary schools in the area to see if there are any other students in the same situation who would like some friends.

    We are in touch with our local ROCK group, but they don't get together very much and are spread throughout the city.

    How about everyone else, how do you keep your kids from feeling isolated? And, are they the only ones at their schools?

    Hi Polly,

    My children's elementary has about 700 kids. There are a few other gluten-free'ers, but none happen to be their friends. Most oldest two have moved on to middle school. I think that having a friend with ANY food issue can be helpful. We have a friend with a peanut & sesame allergy, one with a cinnamon allergy, one lactose intolerant with a gelatin allergy, one that's vegetarian, one that can't eat pork or beef, and one that can't eat pork. When we have a few of those friends over and throw in my gluten-free/CF/SF kids, it can definitely get crazy, but it's all doable and no one feels left out or strange. They actually laugh about it! So how about looking for a friend with a food allergy or restriction besides gluten?

    Also, my kids attend Camp Celiac every year for a week. Everyone there is gluten-free! They have a blast! Do you have any gluten-free camps like that?

    Jillian


  3. Hi Kirstie,

    Yes! Mouth ulcers (i.e. canker sores) can be from gluten. I got them chronically (3-5 at a time regularly) as a child and I have Celiac. That was before diagnosis. My Celiac daughter also had them chronically before diagnosis. I don't get them anymore if accidentally glutened, but my daughter sure does.

    Here's a link to research on the subject.....

    http://www.reuters.com/article/2009/06/30/us-celiac-ulcer-idUSTRE55S6UI20090630

    There were a bunch of articles a couple of years ago about this. I remember one suggesting the pediatricians test all patients with chronic canker sores for Celiac.

    Jillian


  4. You know the old adage! s$#& happens....That is hard when you, a parent gluten a kid or yourself.. You just want to kick something! But on the other hand you learned a great lesson.. So mishaps don't happen we need to always take time & take a second look esp. when there is a gluten & no gluten household...easy to do...

    Happens to the best of us.......hope everyone feels better soon.....

    Actually we're a 100% gluten-free household - for 4 years. My nanny bought them by mistake and I used them by mistake. Neither one of us noticed. The boxes are seriously almost identical. Grrr.

    My stomach is still in full revolt. And my little guy is miserable too. : (

    A good lesson in slowing down.


  5. Not sure what's more idiotic - me or the Applegate boxes.

    Last night after my daughter's softball game I was rushing to put dinner on the table. I grabbed a box of the Applegate gluten-free Chicken Nuggets (or so I thought) and popped them in the oven & cooked 'em. Then I served the kids and took a bite of one off the pan. My 8 year old (also Celiac) says, "Mom, these taste different." OH NO! I grabbed the box and sure enough they were the regular ones. ^%&&Y**! The boxes are nearly identical!

    It took exactly 30 minutes for me to get horribly sick. Stupid bite. And, my poor little guy woke up with 4 canker sores and a headache. : (

    Still feel like crap. I'm so frustrated & angry. Angry at Applegate. More angry at myself :angry:


  6. Hi all,

    So, I found gluten in my thyroid meds -- generic Cytomel (T3)!!! :o

    I have been getting progressively sicker over the last few months. Headaches, severe shortness of breath, zero stamina, stomach issues, etc. I work out regularly on my own plus 2x/week with a trainer. Finally, after embarrassing myself yet again with zero exerise tolerance with my trainer I made an appt with my endo guessing my thyroid was off. My doctor said I may have switched from being hypo to hyperthyroid and may be over medicated. I have been taking T4 and T3 for about 6 years. So, we did the labs for thyroid and a bunch of other stuff.

    After he convinced me I must now be hyperthyroid I dropped my dose (37.5 mcg/day) of Cytomel T3. After just a couple of days I started feeling so great! Then after about 4 or 5 days I was freezing cold and sleepy (like I was hypothyroid again), but still oddly felt great otherwise. So, 10 days later I got my labs. Normal! In fact my T3 was borderline between normal and low. So, why did I feel better not taking it??? It didn't make any sense. Was there gluten in the pill? So, I crushed up a couple of weeks worth and ran the Elisa-Tek gluten test--twice. Positive! There was gluten in my pill!!! D*** it! Furious. Absolutely furious. :angry:

    Turns out my T3 generic was coming from a new lab that I had never used and it was different lab than my T4. The pharmacy had switched it. Taking my thyroid every morning was like taking a dose of cyanide.

    Anyway, I confirmed the results with Elisa-Tek then I ran it up the food chain at both the pharmacy and the drug manufacturer. I've switched brands and am feeling great!

    Beware.


  7. Hi.

    I think the all the other posters have great ideas. I just wanted to throw one more into the mix......

    My son reacts horribly to artificial food dye, artificial preservatives (like TBHQ and Sodium Benzoate), and some artificial flavor (like cherry). He gets VERY hyper within 20 to 30 minutes of consuming it. It was leading to poor concentration, inability to sit still (literally), poor behavior, poor choices, etc. We figured it out the summer after kindergarten. The same day we removed all traces (even his toothpaste) he was a new child. Without it he's happy-go-lucky, funny, charming and sweet, and smart as a whip. He can sit and play Legos for 3 hours. With it he's an absolute moody wreck, yelling, fussing, snapping and running across the sofas.

    He's in 3rd grade now. Doing awesome. BTW he's also gluten and dairy free. He was Gluten-free Casein-free for just under a year when we figured out the other stuff.

    Good luck with everything.

    Jillian


  8. Hi Everyone. My daughter is getting ready to start preschool and I am trying to put together a list of gluten free items and ingredients. Does anyone have any on here that are current? I am new to this because this is the first time she is going to school. I am a little nervous about it because we do pretty good at home and am worried that she will have problems when she goes to school. Any advice anyone could give me would be greatly appreciated. I am also trying to compose a letter to other parents asking them to inform when they are planning on bringing birthday treats in so I can make something that my daughter could have. This is just frustrating because I am afraid I am forgetting something. Also we live in the south and people do not know what gluten is here and they don't understand Celiac disease either.I know some of you have been going through with school packs for years. Please help! :-)

    Hi.

    As far as the birthday treats.....we've found it easier to keep a gluten-free goody jar at school to cover the birthday/teacher/party treats. There will always be the parent who forgets to tell the teacher they're bringing a treat or the teacher who forgets to tell the parent. It makes it easier for all.

    I can't help much on the gluten-free list, but I do know that Play Doh and some finger paints do have gluten. Also, be sure the teacher understands that your little one can't string dry pasta or cereal. One of my kids came home with a fruit loop necklace. :o


  9. If you can make room in the car, how about using a cooler filled with dry ice for some favorite foods? That will absolutely keep things cold. We just returned from Maui and I checked a cooler of specialty items on dry ice. Worked beautifully. I purchased the dry ice at my local grocery store. I'm in CA, but all the major stores around here have it. You just have to ask the checker because it's always in a locked case so it's handled properly (with gloves).

    Hopefully some others will chime in with some restaurant options too. Have a great trip!


  10. I do not eat oats! My mom is a personal trainer and everything we eat is from whole foods uness i bought it and it always says gluten free on it! And yes i have been diagnosed with celiacs.

    Just a thought.....since your mom is a personal trainer.....do you drink protein shakes? I discovered gluten in a supposedly gluten free rice protein shake although I can't immediately recall the name. I used the EZ gluten home test strips when I couldn't figure out what was getting me. I also tested the supposedly gluten free dog food. Also positive. Have you been to an allergist for testing for other allergens?


  11. I have been burned by a common grill at a restaurant. So darn frustrating when you call ahead, have them leave the chix unmarinated, talk to the manager & server, etc. Lesson well learned. Now I ask that anything "grilled" be made in a separate pan instead. Beware of common fryers as well. The oil will be contaminated. Some restaurants will heat up separate oil in a pan if you ask nice. ;)


  12. Yes, canker sores can be from gluten. I got them chronically as a child (long before diagnosis). I would get 4 or 5 at a time. My daughter also got multiple canker sores chronically before diagnosis. Very painful! Now they only appear when she's accidentally glutened. I read somewhere a couple of years ago that pediatricians should test children that have chronic canker sores for Celiac/gluten intolerance.


  13. I'm so sorry. I chucked the Bisquick biscuits on Friday. I was so excited to try them. Tasted like paper. All I did was sub almond milk for regular milk. Yuck.

    Anyway, I add a small box of vanilla pudding to my cakes. I do use Pamela's which I know you can't get, but I'm sure it would work with most mixes. I add 4 eggs (instead of 3) and 3/4 cups water instead of 1/2. That works perfect with the added pudding.

    Good luck. Been there trying to make my kids happy too.

    Jillian


  14. Hi all,

    I've been trying to track down my DD's gluten reaction. I can't trace it to anything she ate. Her art teacher did say that the other classes have been stuffing hacky sacks with grass seed or fescue seed. I'm wondering if that's it. Maybe it's contaminated with wheat. I tried to google it, but couldn't tell for sure. I found out that it can be grown in rotation with wheat. Anyone know if this is common practice? Thanks much.

    Jillian


  15. My breakfast protien is pretty limited and I really feel better if I start the day with a hefty dose of protien. I need some new ideas.

    No Casin, No Eggs, No nuts. Right now, I'm having soy yogurt or a few slices of lunch meat. I'm pretty sick of them.

    Hi.

    We like Wellshire Farms turkey bacon and breakfast slices (like large slices Canadian bacon). We get them at Whole Foods. We also like Jones Dairy Farm mild sausage links. Don't let the "dairy" in the name throw you, they're casein free. We buy them at Raley's. And, we like Applegate Farms chicken & apple sausage. Applegate makes a bunch of other flavors too. We can find these at almost any store.

    Jillian


  16. Here's the thing.....we did the Celiac blood test on her when she was 8. Negative. Her stool testing showed that she was gluten intolerant and a double DQ1 genetically. So, we had her go gluten free with the rest of the household. Over the last 2 years she occasionally ate gluten such as when she was dining out with a friend. Now I'm wondering if I need to open the can of worms again and re-test her. If perhaps it's possible that things have changed and she's developed DH. Maybe the traumatic surgery put her over the edge? Or maybe it's too far fetched and I should just assume it's an iodine allergy. I did read that iodine allergies are often misdiagnosed and are really other things. Hmmmm. Help!


  17. Need some help from the experts.....

    My 10 year old daughter just had major surgery on her leg. Yesterday, day 4 in the hospital, she woke up and said, "Mom, I think I have bed sores all over my back." I looked and she had a major, inflamed, angry rash about 7" by 7" on her back. Very, very painful and a little itchy. The doctors determined that the rash area was cleaned with an iodine solution before her epidural. They think she might have an iodine allergy. I'm wondering if it's really a DH rash that reacted to the iodine--like an old-fashioned iodine patch test for Celiac rash. The doctors said that was also possible. She is mildly gluten intolerant. We let her have some gluten in the hospital just to try to get her to eat something. (Tsk. Tsk. I know.) She's very, VERY picky and wouldn't eat the gluten-free pasta they offered and we couldn't bring all her meals from home.

    Do you think I have to have her tested for Celiac now? She's never had a rash a day in her life until now. I read that an iodine allergy is extremely rare. I also know that DH is rare. I have Celiac as well as one of my other children. What do you think? Oh, BTW, we're home now and the rash has not improved at all. Benedryl and the creme they prescribed have done squat. It's still super angry looking, it just doesn't hurt as much.

    Thanks for your help!

    Jillian


  18. Hi.

    Whole Foods and naturalcandystore.com have gluten-free, dairy-free treats made without high fructose corn syrup, so they're corn free too. The Surf Sweets gummy bears, sour gummy bears and jellybeans are yummy.

    Also, I second what Jeanne mentioned.....providing a trade-bag filled with small toys, Halloween pencils, glow sticks, etc. and a few candy treats that your little one can have. My son can't have artificial food dye, preservatives or flavor either so we swap his Halloween loot. We just tell him that the people his dad works with love it when he brings in candy, so daddy's taking his candy to work. Then, I have a super cool trade bag for him. About a week ago he told me he couldn't wait for his Halloween bag. Guess I did a good job last year. B)

    BTW Target has lots of good Halloween favors.

    Have fun!

    Jillian


  19. Jason,

    I'm so sorry you're feeling so terrible. I agree with you that you need to see a doctor. One thing to check for is gastroparesis which is a partial paralysis of the stomach. The symptoms you mentioned can all be from delayed gastric emptying. I myself have idiopathic gastroparesis that comes back from time to time with no warning. The burping, gurgling, lump in throat, severe pain after eating only a small amount, and weight loss are all things I struggle with when it rears its ugly head.

    Google it and see if it makes sense. If so, you will need a gastric emptying test. That will tell how long it takes you to digest the egg. If it's delayed significantly, then a diagnosis of gastroparesis is made.

    Hang in there. I do hope you're feeling much better soon. Please feel free to email me privately if you have any questions.

    Jillian


  20. Maybe - but that is the whole reason that I went in for the biopsy anyway. It just frustrates me.

    Sharon,

    The same thing happened to my 7 yr old son. The dermatologist said he'd take a 2nd biopsy with the stain if the 1st visual peek looked like DH was a possibility. Well, the first peek came back as "eczema". Someone here on the forum said that DH is a form of eczema, so it is supposed to visually resemble it. This happened last summer. We are still experiencing the awful rash on the back of his neck and elbows. It happens every few months. The last outbreak was in the beginning of September and is still healing. My son has been gluten-free for 2 years. We still think the rash is happening when he accidentally gets gluten. We did the full panel of skin prick testing and nothing else turned up. The 1st biopsy was hard for him so I'm reluctant to follow up (with a new doctor of course) with another one.

    I would insist on a 2nd biopsy w/staining. From what I learned here the skin sample needs to be about 2 mm away from an actual lesion/bump. And, you are right, the only way to know for sure is to do the stain. Good luck with it!

    Jillian