kayo
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Latest Celiac Disease News & Research:
Everything posted by kayo
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I can't tolerate beef now and then and wondered if it was related to my lactose intolerance or casseine. I'm borderline for casseine intolerance. It seems that it takes me a really long time to digest it so I only have it once in a while. When I was younger I could not eat it at all. I had such an aversion to it. I was always forced to eat it because the...
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I live in New England where the sun is sometimes more absent than present. I'm outside soaking up vitamin D (and freckles) whenever that orange globe makes an appearance. Despite my attempts at getting natural vitamin D and taking supplements I've struggled with vitamin D deficiency for years and the only advice my RA doc gave me was 'take vitamin D'. I had...
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ARCHIVED Celiac, Not Celiac, Celiac, Not Celiac
kayo replied to kayo's topic in Coping with Celiac Disease
Thanks for the responses. I too did the Enterolab testing on my own because I was getting nowhere with doctors. I don't regret spending the money either. The results showed I had gluten intolerance but not celiac. Then I saw a celiac specialist who diagnosed me with celiac based on the myriad of symptoms I had and the fact that I was doing better on the... -
ARCHIVED Should I Cook Pasta For My Family?
kayo replied to KeriB's topic in Coping with Celiac Disease
We have switched to Tinkyada as a household. I have found the trick to Tinkyada is to cook it less than what the package says to get that great al dente pasta feel. For example, we often make the penne style pasta. The package recommends 16 minutes and I find 10 minutes is perfect. I also found a noodle in the Asian market that is made from sweet potato... -
So frustrated and my spirit is a bit broken. I just need to vent. Since my Prometheus results came back negative for the celiac gene (they only test for 2, 8) my doc has decided I likely don't have celiac. I told her when I saw her the first time that my genes were negative (Enterolab 4, 5) and she said it didn't matter, she felt I was celiac. So now...
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ARCHIVED The Signs Of Healing - Neato
kayo replied to The Glutenator's topic in Coping with Celiac Disease
Mine did smell before but I noticed now it smells after merely two spears! I haven't had a serving yet. I may need aromatic candles on standby! I've always hated that smell but was comforted in knowing it meant my kidneys were working. -
ARCHIVED Great Gluten-Free Beer
kayo replied to lucia's topic in Gluten-Free Foods, Products, Shopping & Medications
Another great one is St Peter's -
How far west are you? I go to the celiac center at Beth Israel. They have an office in Lexington that is easier to get to than trekking into Boston (and free parking :-) ). When I was doing research I found this place and was considering going but then I found the celiac center at BI. The UltraWellness Center, Lenox MA. Open Original Shared Link
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My hypoglycemia went away after changing my diet. It used to be so bad I'd shake, lose my ability to think/talk and sometimes I'd faint. I got used to eating every few hours and I would panic when I could eat next or when I felt my blood sugar dropping. Now I can go 'normal' amounts of time to eat, i.e., breakfast, lunch, late afternoon snack, dinner, night...
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I've had those paper tests too and they were barely yellow. I kept thinking I had post-it notes on my eyeballs! I tried restasis but it never worked for me, in fact it seem to make my eyes worse. I also took doxycycline for about a year and that helped a bit. I had punctal plugs (tear ducts plugs) put in and that helped a lot but they tend to fall out every...
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I had nerve issues and anxiety as well but never made the connection until recently and well after going gluten-free. The tips of my fingers were numb and I had a small numb spot on my face - both of which I had attributed to disc surgery years ago. These disappeared after going gluten-free. They do come back temporarily when I've been glutened which actually...
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ARCHIVED Oat Bran? Need A High Protein Shake.
kayo replied to vbecton's topic in Coping with Celiac Disease
Sorry I don't have any info on the shakes/oat bran but wanted to say I'm lactose intolerant too and whey absolutely kills me. Casseine doesn't bother me too much, I can tolerate a wee bit but I basically avoid dairy all together. I'm not sure where whey falls - is is lactose (sugar) or casseine (protein) - bit whatever it is I have to avoid it like the plague... -
ARCHIVED Relationships, Celiac, And Compromise
kayo replied to flutterby's topic in Coping with Celiac Disease
Nuts, fruit, gluten-free pretzels, larabars, m&m (are they gluten-free?) - all great to keep on hand. I have snacks all over the place. Purse, car, work. Though since changing my diet I rarely have plummeting blood sugars any more. You could also carry string cheese, laughing cow cheese, yogurt. I don't eat dairy anymore but those were staples when I... -
ARCHIVED Never Ending Search For Flour Substitute In Baking
kayo replied to Lgood22573's topic in Coping with Celiac Disease
I love sorghum too. I have millet, sweet rice flour, potato starch and some mixes like Bob's Red Mill and Pamela's bread mix. By the way, sorghum beer rocks. -
I've tried Claritin, Zyrtec and Alavert. Alavert is my favorite. It works without drying me out like the Zyrtec does. I keep some Zyrtek in the cupboard for those really bad days but for the most part Alavert is my allergy med of choice. Claritin doesn't work for me at all. It's as if I've taken nothing at all. The netti pot works really well too but it makes...
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My vit D level was a 17 (if I remember correctly). I just finished my 6 weeks of 50,000 IU weekly and now I take 1000 per day. I'll be going next week for blood work to see if the numbers have come up. Mt b12 was fine but in the past that was low requiring b12 shots. My bone density test showed signs of osteopenia so I really need the calcium and vit D to...
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ARCHIVED Burt's Bees An Unfriendly Gluten Free Company.
kayo replied to thaichicken's topic in Gluten-Free Foods, Products, Shopping & Medications
I didn't realize they had been bought. This explains the change in ingredients. All of a sudden their products starting having soy. I had to return shampoo and conditioner I bought that previously were safe. I have one treasured lip balm that I'm savouring since it predates the change. -
I've done specific food elimination diets on foods I suspected, ie, dairy, gluten, tapioca, chocolate, etc but not a full blown elimination diet. Right now I'm doing coffee. The IgE tests against numerous foods at once which would be a huge time saver.
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Thank you. I've had those skin prick tests so many times in my life (well before making sense of any of this) and they never showed any food allergies or intolerances except for slight allergy to carrots that the doc was unsure of, could have been the prick next to carrots that was swelling into the carrot area. Things like pollen, cats, dogs, ragweed...
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Soy is harder to avoid than gluten! I avoid it in all forms. I know that when I go out to eat I'll be getting some soy oil and I'm ok with that for now. I know when I've had some soy oil because I get a bit of a cough afterwards where I have to keep clearing my throat. I like the soy free Earth Balance, Enjoy Life choc chips and choc bars (there's...
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I could give up everything on that list except eggs! Coffee would be difficult but I could do it. In fact I think I might have a coffee intolerance but reluctant to go there I like my morning cuppa joe.
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I have swelling but I also have RA and they tend to go hand in hand. I seem to have less swelling since going gluten-free but it still happens now and then. For me humid weather or flying tends to puff them right up. Some things that help: watch your salt intake, drink plenty of water and elevate your feet when you can. An anti-inflammatory like Alleve...
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Hi all, Still awaiting info on my thyroid and lupus test results but I'm betting I'm having some additional food intolerances and/or allergies. I suspect cocoa butter, coffee and tapioca. Bone density results came back and it shows early signs of osteopenia I want to get the most nutrients and vitamins out of my foods as possible and eliminate...
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Oh yes! This drives me bonkers. I was getting up 2-3 times per night. My doc recommended melatonin taken before bedtime. He said to take it the same time each night as it regulates your circadian rhythms and help slow down kidney function while we sleep. It helps but not consistently yet. I'm now up 1-2 times a night, which is better but not great. I also...
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ARCHIVED Why Is It That Mostly Women Have Gluten Problems?
kayo replied to jasonD2's topic in Coping with Celiac Disease
Women in general have more autoimmune illnesses than men. My understanding is that we have more life changing 'trigger' events that can kick off the genes into full blown symptoms such as puberty, childbirth and menopause.