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domesticactivist

Member Since 04 Jan 2011
Offline Last Active Nov 16 2012 02:44 PM
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#769309 Going Gluten-Free In Sympathy With Your Kids?

Posted by domesticactivist on 29 January 2012 - 01:32 PM

It is totally fine to go gluten-free in solidarity with your child. Our family took that approach and it made a positive impact for our son emotionally and physically. Having a gluten free house makes it much easier to stay safe.

It's good you've already been tested. IMO anyone who plans to go gluten-free should get screened for celiac first. I didn't, and a year later ended up doing a miserable gluten challenge so I could get tested.

People who don't have a problem from gluten don't end up developing one by going gluten free. There are ways other than celiac to be affected by gluten that your tests would not have shown. Some people who don't have celiac even get withdrawal symptoms when cutting out gluten. Some people find that reintroducing gluten exposes problems they have with it. If you cut it out and then experience symptoms from reintroducing it, I think you shouldn't have been eating it in the first place. Many people can go back and forth between gluten free and eating gluten without any problem.
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#768881 Will Eating Nuts Inhibit Recovery After Going Gluten-Free?

Posted by domesticactivist on 27 January 2012 - 06:29 PM

We get raw nuts then soak and dehydrate them prior to eating them to remove the phytic acid and make them more digestible.
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#768327 Questions About Cyrex

Posted by domesticactivist on 26 January 2012 - 09:56 AM

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 the old anti gliadin - I guess it's just one more piece of validation I might be able to get to help me with my hypochondria about having hypochondria rather than anything physically wrong with me. :rolleyes:
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#767116 Test Results: 8 Months Gluten-Free

Posted by domesticactivist on 22 January 2012 - 10:59 AM

It's not too late to get a copy of your endoscopy report. Request a copy of your full chart with all labs!!!
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#767021 Test Results: 8 Months Gluten-Free

Posted by domesticactivist on 21 January 2012 - 10:22 PM

I hope you will send a letter to your doctor and whoever else should know explaining that these results show that the gluten-free diet is working, not that you don't have celiac! Including a peer-reviewed study should help.
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#763915 Why Do I Now Get Sick From Gluten When I Didn't Before Going Gluten Free

Posted by domesticactivist on 10 January 2012 - 06:38 PM

Normally I'd say it's your business if you want to eat gluten despite the damage and suffering. But by now you must be aware that you could lose your baby over this. I doubt that's a consequence you are willing to risk.

Being pregnant may be making sticking to the diet more difficult emotionally, but hopefully it will also give you the motivation you need to stay gluten-free at least until after your child is born.

Have you looked into getting the help of a therapist so that you'll have someone you can talk to about the feelings you are experiencing? It's normal to go through the stages of grief (sometimes repeatedly) after getting a diagnosis. Being able to talk in person with someone who understands might help.
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#763710 Raynaud's Issues Or Neuropathy Issues?

Posted by domesticactivist on 10 January 2012 - 10:23 AM

We have a bedwarmer, too. I was afraid of it because I was scared of it being a fire hazard, and I also have sensory issues so feeling the lines running through it bothers me a bit. But it is SO worth it! We turn it on a bit before getting in bed, and I can have my side on without heating up my partner's side of the bed. I try to turn it off or at least way down before I actually fall asleep. Between the bedwarmer, our house finally being insulated, and several down comforters, I finally can sleep.
ftr, I don't think I have Raynaud's (never evaluated for it) but it does run in my family and I do tend to be cold all the time.
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#762374 I Got Sick On Bob's Red Mill gluten-free Apple Muffin Mix

Posted by domesticactivist on 04 January 2012 - 06:18 PM

Bob's Red Mill Gluten Free products are processed in a dedicated facility. However, this facility also processes certified gluten-free oats. If you have a problem with certified gluten-free oats (some people are cross-reactive), then their products could be a problem for you.

It is quite possible it was something else that caused your problem.
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#761659 Gi Says Muscle And Joint Pain Has Nothing To Do With Celiac..

Posted by domesticactivist on 02 January 2012 - 12:14 PM

Glad to help, silk. There are other tips, too... scheduling the appointment at the right time is really helpful. First thing in the morning or right after lunch can make for a more relaxed appointment since they're not running late yet. Going when symptoms are at their worst helps, and if you have a family, scheduling everyone with the same doctor within a a couple days can make a big difference in their understanding of the whole picture.
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#761530 I Had Hoped To Never Return To This Place

Posted by domesticactivist on 01 January 2012 - 07:42 PM

I really DON'T want to deal, though. I don't WANT to face my uncertain future. I don't want to focus on the shitty hand I've been dealt. I can't imagine any good coming from it. Nothing but feeling impotent. And fear. I don't want to face my fear.


Then don't deal with it. Enjoying each day you have now without delving into these issues is a valid choice.

But if you feel like delving into it a bit:

It interests me that you say that you can imagine that it would make you feel impotent if you faced the hand you've been dealt. With celiac disease, there is a way to take power over it - and that is to remove gluten from your diet. With the liver disease, there is a way to take power - have the transplant.

It seems like you may feel that being forced into those choices is in fact impotence - the course of action is decided for you.

I wonder if part of the fear is that taking action won't solve anything. Maybe it feels safer to avoid it than to take action and face the potential that your health will not improve?

It is true - no matter what power we take in life, we all have uncertain futures. You have some of the risks you face laid out before you, along with a road map for how to avoid some of the potential danger, but there is no guarantee. Even if these health issues are healed, there are other potential dangers out there. I faced my mortality many years ago when I walked away from a car accident you would not believe. Every day I wake up feeling blessed to be alive, and knowing that this day may be my last.

You say you don't want to face the fears, yet here you are, discussing them. Somewhere inside you know that if you face them you will be able to take steps that may prolong your life and make it healthier and happier... actually helping you avoid the outcomes that you most fear experiencing.
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#761524 I Had Hoped To Never Return To This Place

Posted by domesticactivist on 01 January 2012 - 07:26 PM

Welcome back, Suzanna,
What I noticed about your post is how you are really being honest with yourself here. Where that will lead you I can't say, but I think it's a good first step to eventually finding some peace with yourself. It seems like you need to do a lot of processing - talking it out from many angles. I'm like that, too. I'm glad you came back and found the space to do that.

Your post made me think of one of my favorite bloggers, The Fat Nutritionist. In her How to eat in a nutshell lesson one: Permission post she says:
"Even if you have a disease or an allergy, it is your choice to either follow the therapeutic dietary recommendations for your condition, or not."

You seem to feel defensive about the choice you are making, and I can see why you would. Everyone around you at least on this forum is going to tell you that with your situation a gluten-free diet is necessary.

But you don't have to defend the choice not to do it. It's already yours, and no one has any business taking that fundamental right to decide what goes in your own mouth away from you.

You are an informed adult, and you have the right to make choices that are destructive to your body. You are the only one who has to live in your body and in your emotional landscape.

You know which kind of pain you can stand. At this moment, from my reading of what you have written, it seems you are choosing the eventual pain of a progressing disease and potential early death over the pain of facing that emotions that come with accepting the disease and your mortality now.

Do I hope you will choose to be gluten-free and find a way to enjoy the diet? Of course I do, because I want you to be well, and I want you to be happy. But that has nothing to do with the fact that it is your choice, and no one has to understand and live with that choice but you.

Even though the people around you will be profoundly affected by your choices, that is a knife that cuts both ways. The limits you have are your limits, and the people who love you can't change that for you.
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#761124 Anyone Able To Interpret The Genetic Testing

Posted by domesticactivist on 31 December 2011 - 10:21 AM

Yup.
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#760800 My Boy Went On The Radio About Celiac

Posted by domesticactivist on 30 December 2011 - 09:34 AM

Thanks for the positive words, everyone. This was a big step for him since he likes to just be one of the guys with his friends. I was surprised he wanted to do it and am very proud of him!
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#760694 My Boy Went On The Radio About Celiac

Posted by domesticactivist on 29 December 2011 - 07:40 PM

My son has been part of our local public access radio station's youth collective for a couple years now. Every month, the kids pick a theme and do a show. This month, the theme was "The Letter C." My son decided to do his piece on celiac disease and cross contamination. He wrote it up and recorded it himself :) http://kboo.fm/node/32879

This was a big deal, as no one at the youth collective except one friend knew that he had celiac disease. He's sat there and watched them all eat snacks he can't have every week all year and not said anything. In fact, the night he decided to do this piece, there was even a surprise pizza party half way through the meeting. (The group facilitator went and found him some clementine oranges for him when she realized of course the pizza wouldn't be ok.)

Anyway, I'm proud of him.
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#760147 Yet Another Doctor's Opinion

Posted by domesticactivist on 27 December 2011 - 09:12 PM

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 is more than/something other than celiac going on. However, it can take longer than 2 weeks to feel better gluten-free. If food is part of her problem maybe it would be easier after your tests are run to try a simpler diet and slowly introduce things? Our family has had success with the GAPS diet, which starts with stock and slowly introduces probiotic foods, vegetables, meats, eggs, fruits, and cultured milk products. If you are careful to keep the introductions spaced apart you may make some good discoveries as she heals.
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