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domesticactivist

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by domesticactivist

  1. domesticactivist
    A few of us talked about trying to put something like this together last summer. It was going to be focused on cross contamination stories, with tips interspersed. There is a big thread about it somewhere. I was going to work on it with one other person and put out a call for submissions but no one responded and I dropped the ball. It's still something I...
  2. domesticactivist
    Sorry I came off so defensive. I think you are very smart and right on this one, too. Somehow I managed to take your words that I agree with overall as a (mild) personal attack that I just had to clarify/espouse upon. This gluten challenge has me back in my adolescent brain and feeling low energy gets me on the computer more - seemingly not a great combination...
  3. domesticactivist
    I've never been one to let whining and pouting influence my decisions about anything, let alone what to feed the kids. Part of our problem was that things were different at their dad's house. Without the united approach to offering healthy foods she had the ability to hold out for the stuff she was addicted to. The resultant mood swings, blood sugar hell...
  4. domesticactivist
    Infuriating! One thing I've taken to doing is having things added to my chart. If there are inaccuracies like that, you can submit notes to your chart. This is important because future doctors get copies of your old chart and will assume the things they find in there are accurate. I also now have started writing reports for the doctor before my visit and...
  5. domesticactivist
    As for the emotional stuff and the moods, I feel you there. We get the same thing from our kids... and from me, I'm sorry to say. It's good to blame gluten rather than the person, though. "I blame gluten" has become a joke in our house!
  6. domesticactivist
    Your daughter has some weight on mine! She'll be 13 in April and is only 57 lbs. I bet your dd is a bit taller, though. 400 calories a day does sound alarming (and we have been there, too)... How much does she eating when gluten-free? I'm doing a gluten challenge and it makes me feel like crap and not want to eat, too. Though I think it sounds worse...
  7. domesticactivist
    Find out how much gluten is in your bread, pasta, cream of wheat, etc by looking at the protein content per serving on te label.
  8. domesticactivist
    Yes you must be eating lots of gluten. The number I get from 4 slices of average bread is nearly 20 grams of gluten a day. Usually the advice is for three months. Only two weeks off it, though, the one month may be ok. I hate how many drs have people go gluten free before deciding to test. It's standard but puts people through so much pain and a longer wait...
  9. domesticactivist
    I'm doing a challenge and based on research decided to eat 20 grams of gluten (look at the grams of protein per serving in a gluten containing food) a day for three months. I'd been off it for a year when I started. Before starting I talked with my dr and got all the tests ordered so that if it gets too bad I don't have to see my dr or wait at all, I can...
  10. domesticactivist
    Good advice from IrishHeart. I also want to add what about just laying on the love for a while? I'm sure you already do show her love and sympathy for her pain, and I imagine you must be exhausted emotionally by all this, but with going back on an unrestricted, gluten diet it's good timing to forget the struggles and just show acceptance and compassion. ...
  11. domesticactivist
    Hm. Are you sure no other tests were run? Do you have a full copy of your chart? If not, now would be a good time to get one and look it over. Remember to ask for the archives, too. The copy fee is worth it! You can also call the labs that ran your tests and often they will have records of your tests from the last ten years or so.
  12. domesticactivist
    Oops, meant to reply, not "like" that your daughter has been faking. I am glad she told you, though. Sometimes being so focused on our kids health can make it hard for them to honestly communicate with us. I'm sure she hoped she would feel better, too. That may have played into it. At any rate, it's good she told you. I really think it's possible there...
  13. domesticactivist
    What were your original numbers? I agree with mushroom that high numbers could indicate you are still getting gluten, especially on the DGP which is specific to celiac. High tTG numbers with a totally gluten-free diet could indicate other autoimmune issues like Type 1 Diabetes, Hashimoto
  14. domesticactivist
    Kimball Genetics division of Labcorp did our genetic testing and while we didn't get the full results back at first (the thing they returned to the doctor with a summary of risk), I was able to call the genetic councilor once I had the results from the doctor and have them send me the full results. It looked like gobbledygook at first but after a lot of time...
  15. domesticactivist
    I noticed I am much more comfortable and have much more normal stool and less gas with digestive enzymes. But it says right on the bottle not to take them regularly. I hadn't heard about the scarring your MD talked about and would be interested in knowing why it's something the bottle would say to use sparingly.
  16. domesticactivist
    I'm sorry for the misery you and your daughter have been put through with these doctors. I can relate to the feelings of just wanting to know what's going on and wanting to go with natural, non-invasive treatments rather than bandaid medicines she has to take every day. I do hope you go ahead with the endoscopy and biopsy if she's still on gluten. Remember...
  17. domesticactivist
    It's more a time thing. Usually am reading this forum on my phone when I am doing something else that requires sitting around and waiting, so long posts or pulling up original sources isn't practical. I have at other times made many lengthy posts on topics that are on my blog. Anyway, I take your point and am sorry if I got over-sensitive. I was still feeling...
  18. domesticactivist
    It's true that testing info can be found all over the place. I've gone to the trouble of writing up my interpretation and linking to outside info as well. Anyone who posts here could have already gotten that info by googling but didn't. The other post I mentioned is all about my hard-won personal experience in having a positive experience with doctors. ...
  19. domesticactivist
    Fermented cod liver oil is a good way to get vitamin d and a. Green pastures tests for mercury and has good practices. They are having a really good sale right now so it might be a good time to try it out.
  20. domesticactivist
    Can you bathe the child when you get there and then take extra precautions at meal time? It sounds like the whole house is a mine field at this point but if you are cautious about constantly washing up and not eating there maybe you will be ok?
  21. domesticactivist
    Congrats on your diagnosis. Sounds like it was a long time coming! Now the good part... Getting healthy
  22. domesticactivist
    Some people so better with certain veggies cooked and others raw. You might be interested in trying your introductions GAPS style... Cooked thoroughly in stock, and introduced slowly, one at a time. I have a series of posts on the blog linked from my profile about how to do GAPS, btw. As you introduce them see if there are any patterns to the veggies you...
  23. domesticactivist
    That sounds miserable. I can understand why you felt it was a good idea to go without food, but this is one of those unfortunate lessons we all get sooner or later. Honestly you were probably better off not eating than you would have been eating her attempts at gluten-free cookIng which would almost certainly be cross contaminated.. She should have told...
  24. domesticactivist
    Hi and welcome! It sounds like you've had a rough couple of years, but maybe you're finally on the right track to feeling better. If you've been eating gluten regularly for the past few months call your dr and get a full celiac panel done ASAP! On the blog linked from my profile I have a post called "make the most of your doctor visit" and a series on celiac...
  25. domesticactivist
    It sounds like you could be having an IgE reaction to casein or whey which are different than lactose intolerance. Of course it's also possible to have both. How about cutting out all dairy for a while then trying to introduce different forms slowly? I would start with ghee which is mostly just the fat (lactose mostly gone from butter, then clarified to remove...
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