domesticactivist
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Latest Celiac Disease News & Research:
Everything posted by domesticactivist
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ARCHIVED Positive Blood Test, Negative Biopsy....dr. Is Convinced
domesticactivist replied to Tamesis's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
You got a good one with that new doctor! All your symptoms are classic reactions to gluten and I think it's very likely you will be much healthier and happier on a strictly gluten free diet. Try it!!! The diagnostic criteria for celiac is shifting away from requiring biopsy for diagnosis. It is possible to have false negative biopsies for a number of... -
ARCHIVED Could It Be The Gluten After All?
domesticactivist replied to Fairy Dancer's topic in Coping with Celiac Disease
Sounds like you had the testing done at the exact wrong time! You must be eating gluten regularly - and lots of it - to get valid test results. You may want to retest now that you are on gluten, or you may want to feel better sooner and just cut it out entirely! In my opinion, the reason to get tested for celiac autoimmunity is so that you can determine... -
ARCHIVED If Your Doctor Won't Order Testing...
domesticactivist replied to domesticactivist's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
How sad, rosetapper23! That is really unacceptable. I wish it didn't take such a monumental effort to mount a medical malpractice suit because your story and your mother's story definitely warrant a couple. I actually had improved my opinion of Kaiser in the past few years. I had a friend who was a breast cancer survivor. When it came back, her doctor... -
ARCHIVED Help With My Genetic Results Please
domesticactivist replied to 3groovygirls's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Yes, the article on celiac.com said "about 4 slices of bread a day" and put the average slice of bread at 4.8 grams of gluten. From my label reading, most slices of bread that I saw actually had less than 4.8 grams. I decided on how much to eat for my challenge based on rounding up to 5 grams and multiplying by 4, to be on the safe side. I saw some references... -
ARCHIVED Need Help With Genetics Interpretation
domesticactivist replied to domesticactivist's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Bump for all the people thinking about genetics right now. -
ARCHIVED If Your Doctor Won't Order Testing...
domesticactivist posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
My mom decided to go ahead and get screened, finally. But she has Kaiser and they had to be convinced. Finally they used their screening protocol and ordered only the anti tTG IgA, despite the detailed list I had given her, with specific info on how important it was to also get total IgA for any tests that look at IgA. Apparently, their protocol also does... -
ARCHIVED Eating Gluten Without Contaminating House?
domesticactivist replied to Irishgirl76's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Pasta worked pretty well, too. I used my gluten pot and drained it with the lid, being careful not to splash, then washed out the sink. -
ARCHIVED Eating Gluten Without Contaminating House?
domesticactivist replied to Irishgirl76's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
I just did a gluten challenge and did end up glutenong my son a couple times once was because I accidentally used his toothbrush!!! I was very careful. I do not recommend the gluten powder. I took it outside and it got everywhere. I tried to add it to food but I couldn't handle it, it made me nearly vomit immediately. I started with farina which worked... -
ARCHIVED Help With My Genetic Results Please
domesticactivist replied to 3groovygirls's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
This formula puts me at needing 28 grams a day. That really is a lot of gluten! I think some days I may have hit that but not most days. I held out for just under 2 months. Test results coming back next week. -
ARCHIVED Help With My Genetic Results Please
domesticactivist replied to 3groovygirls's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Nora where did you get that formula for how much gluten to eat on the challenge? I looked and looked for a guideline like that! All I found were a few vague articles and so i settled on 20 grams a day for any adult. -
ARCHIVED 3 Genes?
domesticactivist replied to beebs's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Wow! Thanks for that. We has the kids reared by kimball genetics division of labcorp. They sent back a risk assessment based on both alpha and beta. Then I called the genetic councilor and they sent me the full report. I've heard (but not confirmed) that Prometheus can do the same -
ARCHIVED Gluten Free Society Gene Test For Non-Celiac Gluten Sensitivity?
domesticactivist replied to carolynmay's topic in Super Sensitive People
Yes, probiotics! Our family does GAPS which is similar to SCD and includes more naturally probiotic foods as well as therepeutic probiotics. We like GutPro Probiotic Powder. As for whether you have a reaction to rice or not, of course it's possible. But that would be separate from celiac disease. If you want to know what genes you have, order the celiac... -
ARCHIVED Cross Contamination?
domesticactivist replied to BrittLoves2Run's topic in Coping with Celiac Disease
It will get less overwhelming as time goes on. You'll make some mistakes at first, but it will get easier. Cut yourself some slack - while no gluten is safe, a tiny bit of cross-contamination as you get things figured out is not the end of the world. Some cc from time to time is inevitable. Gluten is all over the place! The idea is to do your best to minimize... -
ARCHIVED When Your Upper Gi Guy Bets You A Free Endoscopy...
domesticactivist replied to harleyridnusmcbrat's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Korwyn... Does your catering friend know about the new National Gluten Free Business Forum? It just started in June in Portland but is growing. i went to my first meeting the other day and there was a great speaker and lots of different companies from bakeries to manufacturers to food carts to heath coaches to doctors represented. The website is going to... -
ARCHIVED Shampoo Allergy Need Gluten Free Help
domesticactivist replied to GFreeMO's topic in Gluten-Free Foods, Products, Shopping & Medications
Btw sls is in most toothpaste, too. We stopped using toothpaste and have all had better checkups than ever at the dentist. Getting the starch and refined sugar out of our diet made all the difference. -
ARCHIVED Shampoo Allergy Need Gluten Free Help
domesticactivist replied to GFreeMO's topic in Gluten-Free Foods, Products, Shopping & Medications
We use baking soda to wash and apple cider vinegar to rinse. It works surprisingly well for us. -
ARCHIVED Distended Abdomen
domesticactivist replied to Dr. Jill's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
GAPS is the Gut and Pyschology Syndrome Diet. It was based on the Specific Carbohydrated Diet. GAPS is a protocol aimed at restoring a healthy balance of flora in the gut, and reducing gut permeability. (Leaky gut) It involves, diet, detox, and supplementation. The diet takes a phased approach, starting only with the most nutrient dense, easily digested... -
ARCHIVED Misery Loves Company
domesticactivist replied to Avalon451's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Yup. That's part of the reason I started blogging. I could tell my friends all about evil gluten (and processed food, and sugar, etc) without having to direct my fervor at them over and over. It seems to be working. The people around me come and ask now -
ARCHIVED Think I May Try Candida Diet
domesticactivist replied to HS7474's topic in Food Intolerance & Leaky Gut
I used to have a spot like that on my chest from yeast. The GAPS diet is good for clearing candida. -
ARCHIVED Questions About Cyrex
domesticactivist replied to domesticactivist's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Good news! I called the lab at my doctor's office and asked if they could now order the DGP or just let me order some of the tests in their panel so I could order the rest online. It turns out that since my celiac panel was ordered 2 months ago they have changed what's in it. Now their standard screening includes the DGP test! Progress As for interpreting... -
ARCHIVED Haning Out With Friends.
domesticactivist replied to ashlee.ream's topic in Introduce Yourself / Share Stuff
The emotional aspect of seeing other people have things you can't have does get easier over time. The more you view it as poison, the less you'll want it, then you'll end up with the problem I have... thinking everyone would be better off without it! As for eating out, I have a really hard time trusting most restaurants, and I live in Portland, OR, where... -
ARCHIVED Cross Contamination?
domesticactivist replied to BrittLoves2Run's topic in Coping with Celiac Disease
We decided to make our house 100% gluten free for simplicity's sake last year. It made a huge difference in our son's health. He stopped getting glutened all the time! The past two months I have been doing a gluten challenge. While I tried to be super careful and obviously was up to date on all the details of being gluten-free and not contaminating things... -
ARCHIVED Diagnosis
domesticactivist replied to lc1333's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Look into GAPS! It is designed to restore the gut's balance of flora. It may make a world of difference for you. There is an introduction diet that starts out very basic whith easily digested, nutrient rich foods. Then you add in naturally probiotic foods and other foods one by one. It is totally grain and starchy vegetable free, and starts off with no fruit... -
ARCHIVED Are Docs Skeptical Of Celiac Dx Without Biopsy?
domesticactivist replied to Irishgirl76's topic in Parents, Friends and Loved Ones of Celiacs
Ps my daughter's endocrinologist suggested retesting my dd for celiac because she is still small even though she was tested last year, has been strictly gluten free all year, does not have any of the genetics, and had completely negative blood work when eating gluten last year. It's good she knows to screen for celiac... Too bad she didn't understand there...