Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1-m):


kayo

Advanced Members
  • Content Count

    324
  • Joined

  • Last visited

  • Days Won

    2

kayo last won the day on December 13 2010

kayo had the most liked content!

1 Follower

About kayo

  • Rank
    Star Contributor

Profile Information

  • Gender
    Female
  • Location
    New England

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.


  1. I experienced it as well and I'm not even what I would consider very sensitive. It was early on in the diet, maybe just a few months, we walked into a restaurant and passed their pizza making area where they make the dough, the pizzas/calzones and bake them in the open fireplace ovens. I got so dizzy and light headed and woozy. I couldn't concentrate. I felt drunk or tipsy. All I wanted to do was lay down. The feeling passed after about 10-15 minutes. I have been to the same restaurant since and have not had any reactions. It was the oddest thing.


  2. MacieMay,

    My understanding is that DQ2 and DQ8 are the recognized celiac genes.

    Quick google shows:

    Genetic predisposition plays a key role in celiac disease and considerable progress has been made recently in identifying genes that are responsible for celiac disease predisposition. It is well known that celiac disease is strongly associated with specific HLA class II genes known as HLA-DQ2 and HLA-DQ8 located on chromosome 6p21.

    From: http://emedicine.medscape.com/article/1790189-overview


  3. Wow, talk a about a troll fest over there on the mythbuster's thread. That one person needs a hobby! I cant take anyone seriously when they condescendingly start a reply with, now ladies...

    I just registered so I can also request they tackle how easily, or not, gluten can be destroyed on cookware and utensils. I think that would make for a very interesting experiment. How happy would we all be to find out hot soapy water does the trick?


  4. Would you mind sharing your coconut wrapper recipes and the raw nut pizza crust? I miss samosas and pizza!

    I second this request. I'm missing spring rolls something fierce. I've tried some rice wrappers but they get very sticky when fried. I'm going to try some technique used to make har gow using tapioca and rice starch. I'm not SCD, though I am FODMAP. I'm always intrigued by new foods and techniques.


  5. SOY FREE MAYO!!!!! where,what brand name or do you make your own?????

    *can you tell i miss mayo :lol: *

    I use Hellman's Canola mayo. No soy oil. It's quite good. I have tried some other brands but they tasted weird to me.

    If you're looking for a soy free cooking spray (also hard to find) check out Pam for Grilling. I swear I read 20 cans of spray before reading about this one on the board.

    Soy free tuna can be found at Trader Joe's.

    My go to meals are:

    - tuna on crackers or Udi's bread. I like the Schar table crackers since they remind me of ritz or club crackers.

    - omelette made with lactose free yogurt cheese, found at Trader Joe's, with tater tots

    - soup from my freezer. I make big batches of soup and then freeze individual containers.

    - Amy's mac n cheese (the gluten-free and dairy/soy free version made with Daiya)

    - rice noodles with frozen veggies and some chicken stock and lemon

    - Chipotle, for when I really don't want to cook!


  6. Once I went gluten free I noticed my symptoms didn't fully go away. I had roaming pain too. I had more tests and found out I had SIBO. I likely had it for years but going gluten-free really highlighted it. I was also tested for fructose malabsorption but that came back negative. Other things to consider: other food allergies, ulcers, colitis, Crohn's, diverticulitis, candida, giardia and other parasites.

    Hopefully his endoscopy test helps figure it out.

    Last July his sister continued giving me dirty looks and making remarks about the food we were eating. I decided to give her a detailed explanation of what gluten does to me. BUT she still blames DH's issues on diet, oh well.

    You don't owe his sister or anyone an explanation. Her eye rolling, her misunderstanding is her problem to solve, not yours. Please don't be burdened by such people. Do your best to ignore them. The more confidence you show in the decisions you make the less flack you'll get from others. When they see they can't bother you with their negativity they give up. Trust me, I speak from experience :)


  7. I do believe people when they have a stronger or milder reaction than I'm familiar with. Each of us are different, our immune systems are in varying stages of strength and the disease itself falls along a range (mild villi atrophy to severe - for example). I have had gluten exposure and should have had a reaction and didn't and then have had horrible reactions to what I can only chalk up to trace amounts. I strongly feel the state of my immune system at the time of exposure determines the outcome. But that's me, and my body, and my experience.

    Doctors don't want to push people into a stricter diet because most folks won't follow it.

    I see this mentioned on the board a lot and it boggles my mind. Regardless of reaction (mild or severe) it's in our own best interest and health longevity to be 100% gluten-free. Doctors don't tell diabetics to not follow their diet because it's hard. The same should go for us. I guess where one could split hairs is if 'gluten free' labeled manufactured food is safe. I think that's an individual call and up to the person to determine. A dedicated bakery that does not use gluten containing items and operates in a gluten free facility is very safe in my opinion. Food labeled, 'made on a line that is shared with wheat' is very questionable regardless of testing.

    Hopefully stricter standards, guidelines and labeling will take the guess work out of the equation.


  8. I'm soy intolerant and I do avoid lecithin. I am not sure if I react to it or not but avoid it just to be safe. I definitely avoid soy protein (soy flour, tofu, soy sauce, etc.). As for soy oil I make a judgment call. If there's a choice, I avoid it. If it's not a choice I don't sweat it. I don't seem to react to it but I don't know for sure. It's nearly impossible to eat out and not ingest some soy oil. Vegetable oil which is widely used is often a blend of cannola, soy and safflower oils.


  9. Our microwave at work should be declared a health hazard. I once opened it and said out loud, OMG, did a murder happen in here? I avoid it unless it's been cleaned not because of gluten but because it's just gross. When clean I use a paper plate under my tupperware and put a paper towel over the food or the tupperware lid. Then I discard the paper plate (holding it from edge only) and the paper towel (holding it from edge only).


  10. Do you happen to use any of the softlip shimmers? If so, which shades? I've been thinking of trying them

    I tried one and it was too light. I had 1986 flashbacks!! I tossed it so I'm not sure what shade it was, sorry. My fave is the peppermint vanilla (no shimmer).

    Mositurizer I use Avon (body) and Mary Kay (face). Avon lists all their ingredients and Mary Kay does not use any gluten. I like that. Takes all the guess work out.

    Dessert Essence Organics line is vegan and gluten free. I love their coconut line of shampoo, conditioner, body wash, and lotion! :)

    I use their raspberry shampoo and conditioner. Love them! In addition to no gluten there's no SLS (sodium laurel sulfate) which seems to flare the heck out my scalp psoriasis. Finding a shampoo without gluten AND SLS can be tough so I was glad to find this product. I'll have to try their body washes and lotion too.


  11. Is there a reason you wouldn't just put your children on a gluten free diet? Forget the tests and the docs and just go ahead with the diet changes and see if they improve?

    My test results are inconclusive because I was gluten-free at the time of testing but doc feels I have celiac as I have all the symptoms. Those symptoms go away when I'm gluten-free. That's all the proof I need. My sister does have celiac and her blood work came back negative and her endoscopy came back positive.


  12. I get sarcastic remarks sometimes and I guess it depends on my day how I feel and react. Mostly I ignore them and relish the fact that I feel good, I look good and that I'm happy. How I achieve that is my own personal journey and not up for debate.

    I also opt not to give food so much power. It's just fuel. Fuel to get us through the day. Don't get me wrong, I am a foodie, I love to cook, it's my yoga but removing the power food had over me is the best thing I ever did. Once I removed all my food intolerances this became easier as I no longer had ridiculous cravings or a bottomless pit of a stomach.

    When I have a pity party moment I remind myself that it's just food. In our society food has become a past time and a social event. In many countries people don't have that luxury. They might only get one meal a day. So these are the things I think about when faced with negativity either from someone or even from myself.


  13. I didn't know anything about SIBO until the doc mentioned it. I never would have known that's what my core issue was on my own even though I had been trying to get to the root of my GI issues for 5+ years.

    The test is hydrogen breath test like you said. You drink something and then they take breath samples every 20 mins or so. I spent most of the time going back and forth to the bathroom which I guess is a good indicator that I was positive. If you can get the meds from Mexico or Canada then go for it. I didn't notice any improvement on the diet alone. Then again I believe I had SIBO for years. I'm sure I had a lot of bacteria to conquer. I was eating a bland diet of bananas, rice and chicken and still reacting. That's how nasty the SIBO can be.

    I don't find the diet too restrictive at all. I keep a spread sheet that helps me manage what I can eat. I've never been a huge fruit eater so that is not a big deal for me. I can have citrus, bananas, avocados, berries and cooked apples. All in small amts of course. I've never been a fan of brown rice so that's easy to avoid. I do notice almonds bother me but other nuts have not been an issue. I'm already gluten, lactose and soy free so no biggie there.

    One other thing I want to mention is that my scope showed colitis. Doc thinks this may be due to the SIBO and it should clear up. I guess that is one of the dangers of untreated SIBO. I also had a lot of inflammation, head to toe, that docs chalked up to my RA. Once I healed that all went away.

    I've found a lot of help about the FODMAP diet by following the FM (fructose malabsorption) groups on Yahoo. One out of Aussie and one USA. We share the same diet but for different reasons so there will be some vaiation. Sue Shepherd and Monash University seem to be the diet experts. Google them for more info.

    http://health.groups.yahoo.com/group/fructose_malabsorption_australia/

    http://health.groups.yahoo.com/group/fructose_malabsorption/

    HFCS and sorbitol and xylitol can be hard to avoid but here are some products (all gluten-free too):

    This is the toothpaste I use. It's pricey but I find it lasts a long time since it's just me using it: http://www.auromere.com/Dental_Care-Toothpaste.html

    This is my fave gum: http://www.gleegum.com/

    Soda made with cane sugar: http://www.hansens.com/

    Lip balm: http://www.softlips.com/products.php

    Hope this helps!


  14. I conquered SIBO. I had the test and did the round of antibiotics and stuck to the low FODMAP diet which is basically avoiding the foods in the list you have above. It took a couple of months to fully heal. I'm ok now and have been able to add some foods back into my diet. I do eat gluten-free grains, beans, mushrooms and lactose-free cheese and yogurt in small amounts. I use sorbitol free toothpaste and gum. For sweetner I use regular table sugar or maple syrup. I still avoid all high fructose foods, most fruits and avoid onions, asparagus, artichokes and garlic. I know when I've eaten too many tomatoes for example because I get some symptoms (acid reflux, stomach cramps). I did indulge a bit over the holidays and I'm still fine. It's all about moderation and balance which you can achieve through trial and error and keeping a detailed food diary. Once the SIBO is clear and gone you'll feel so much better. The constant hunger goes away. (I was so worried it wouldn't) I have actually forgotten to eat on occasion. That never would have happened before. The bacteria wants to be fed constantly. The diet won't make a lick of difference until you get some antibiotics in you. I started the FODMAP diet in June and went through the testing and then antibiotics in August. I didn't really start to feel better and like my old self until Oct/Nov. I have not been able to pinpoint when I developed SIBO but believe I had it for years, possibly as many as 3 or 4. The signs are (now I know looking back): constant hunger, grumbly stomach, all over body inflammation, joint pain, inexplicable weight gain and food intolerence type reactions to all foods.

    Get tested soon so you can get the meds. You may also want to be tested for fructose malabsorption as this too can mimic SIBO, celiac, Crohn's, etc.

    Good luck!