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Member Since 04 Jan 2011
Offline Last Active Nov 16 2012 02:44 PM

#760062 Is The Ema Test Enough

Posted by on 27 December 2011 - 02:42 PM

I should make it clear that I don't hate your posts...that's a little over dramatic. I may not always agree with your content but I don't hate them. I can also understand you wanting to help people..that's why the vast majority of us are here....to share our experiences to help those who are new to this lifestyle. I just don't think any one of us should be constantly promoting a personal blog from another Celiac website. Advertisers pay for the right to show their products here and advertise themselves so there is a difference. I know you are not selling anything but you mention your blog to the point of annoyance. Do you feel you cannot say things directly on this forum that you blog about? I think if you don't want to derail the real discussion that is going on at this forum, then you shouldn't always be mentioning your blog. I just think the two should be kept separate but that is just my opinion so you don't have to respond to it at all.

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 a little bruised about the post where you said I was being far-fetched about my son getting glutened from a plate. I'm shouldn't have let that get to me. I blame gluten ;p
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#760048 Is The Ema Test Enough

Posted by on 27 December 2011 - 01:41 PM

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.

I'm just trying to help people. My blog is not a big money maker like celiac.com. Yes, have services I provide - in person, in Portland, OR. I don't know anyone from this board in real life and have not generated sales through this site.

Many of the things that come up on this site come up over and over again. If I've already written an article on it I often would like to be able to share that with people. That's the whole point of the internet. I think it's stupid that people who are obviously contributing relevant content and who participate in the community beyond sharing links aren't allowed to link to their blogs. The moderators told me I should say "the blog linked from my profile" so that's what I do.

If you hate my posts, click the little "-" and dock me points. I get emails thanking me for my posts and my blog so I know it's helping somebody. If it doesn't help you, no one is going to make you read it. This is the last I'll have to say on this since I think it derails the real discussion.
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#759857 Reintroducing Vegetables

Posted by on 26 December 2011 - 05:15 PM

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 dont tolerate. Nightshades? Fructose? Salicylates?
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#759843 Help Me Please!

Posted by on 26 December 2011 - 04:28 PM

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 testing myths including "doctor knows best" that outlines what tests to get. I'm hoping to get another one up today on false negatives as well. I hope you can get some good test results soon!
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#759840 Lactose Intolerant?

Posted by on 26 December 2011 - 04:21 PM

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 casein). Then I'd try homemade yogurt that has been dripped which still has casein. (instructions on the blog linked from my profile) Hard cheeses have lots of casein but very little or no lactose. Do antihistamines help your reaction to milk products? That would also indicate an IgE reaction.
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#759834 gluten-free Pie Crust?

Posted by on 26 December 2011 - 04:02 PM

We have a recipe for grain free pie crust on the website linked from my profile. It's called "almond crust" I think.
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#759833 Holiday Successes And Failures

Posted by on 26 December 2011 - 04:00 PM

Katrala your treats look amazing. You went all out!
This Christmas was the first time we've stayed home in years. Our house is too small to host many people but my mom, stepdad, and brother came over and we had lunch together. I made my (grain free nut free dairy free gaps legal) chestnut stuffing and this time it turned out great! The recipe and a photo of our dinner is on the blog linked from my profile on the "chestnut stuffing" post. It was really nice not to have to be paranoid about getting my kids served first and protecting their plates and whatnot! As a Christmas treat Santa gave the kids a maple candy in their stockings. (Maple is not gaps legal and we normally have fruit or just a bit of honey in sweets) my son was in absolute heaven over it. For thanksgiving we brought all our own food to dinner and it went fine but was a lot of work. I have a post with pictures from it on the blog entry called "the holidays."
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#759768 Weight Gain/nervous Belly Help

Posted by on 26 December 2011 - 09:47 AM

I get the nervous belly feeling, too. It had gotten worse and worse before I cut out gluten, and I even eventually started getting D when I had that nervous feeling. This had gotten especially bad after I got really sick about 6 years ago. I've always actually been more prone to constipation. When I first went gluten-free it got horrible. I think this was due to the processed gluten-free food like rice pasta and rice crackers that I started eating. The GAPS diet fixed my constipation for the most part, though it took some adjusting. I'm doing a gluten challenge now and am back and forth with digestive stuff. I also have intense thirst, but I have to get up and pee all night. The cravings you describe seem very typical to me.

The mental stuff is especially had. You might like the http://www.fatnutritionist.com/ She has a very sane approach to dieting. I also struggle with the feeling of being a hypochondriac have blog posts on my site that you might relate to. I am chronicling my current gluten challenge and have some posts about cheating ("confession") and also about the GAPS diet that we have found to be more healing that just being gluten-free. Writing out all my symptoms helps me realize it's not completely in my head, though I still struggle with that.
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#759529 Gi Says Muscle And Joint Pain Has Nothing To Do With Celiac..

Posted by on 24 December 2011 - 12:14 PM

Like they said, you need a new GI. A doctor who laughs at you is not a doctor you want. That said, if there is any chance of educating this doctor a bit better, that could go a long way to sparing other people her ignorance.

If you decide to go to another doctor I'd write a letter outlining your reasons for firing her.

If you decide to try and keep seeing her (and when you meet your next doctor), you might want to follow the tips on my article "Making the Most of Your Doctor Visit" on the blog linked from my profile.

There's a lot more specific information in the article, but the main thing has to do with being very prepared for a visit. The most important thing I do when going to the doctor is write a report detailing symptoms, requested testing, and concerns. I break down how to organize it and what to include in the blog post.

Then during the discussion I have with the doctor, it helps me stay on topic and be taken more seriously. I always phrase my requests and ideas about what could be the underlying problem as respectful questions. If I find myself getting brushed off or contradicted, I ask for research/references. If research I've done is being discounted, I show it to the doctor and ask for them to review it and explain to me (with documentation) how it is wrong.

Remember to get a copy of your charts and all labs done, too. That's really important. The doctors often make notes that would surprise you. Also, you are the one who has time to actually look at your whole chart and try to make sense of the history. Most doctors don't have time for more than a cursory glace. Being able to call documented patterns to your doctor's attention can make a big difference.

Finally, if you end up with another doctor who does diagnose you and help you feel well, it's worthwhile to go back or send a letter detailing the true cause of your problems. I recently did this with my son's allergist. She was actually very receptive to the good news, and was a bit more informed about gluten than last year and definitely more interested in hearing about it.
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#759391 Blood Test Negative But...

Posted by on 23 December 2011 - 01:50 PM

Beachbirdie is right, you don't have all the necessary tests there. You can't even know the validity of any test involving IgA unless your Total IgA has been tested. I hope you were able to find my blog post - all the tests and descriptions are listed there. I'm not allowed to link to it which is why I didn't give you the link.
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#759329 Blood Test Negative But...

Posted by on 23 December 2011 - 08:26 AM

It's not for sure that a biopsy would prove what you already know. It could be positive or negative. The benefit of doing the biopsy would be to find the extent of celiac damage if there is some, or to confirm negative for celiac if there isn't. Either way it sounds like you'll want to try the gluten free diet for a couple months to see if it helps.
Did you get a copy of your test results? What was run?
I have a new post on the blog listed on my profile called "celiac testing myth #4 doctor knows best" that lays out all the typical celiac testing and why you'd want it.
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#759167 Super Sensitive Teen

Posted by on 22 December 2011 - 05:06 PM

I was in no way condescending to you, merely pointing out the obvious with regards to how people can react. I do agree that hand washing before meals is a necessary must but reacting to a washed plate at someone else's house is a bit far fetched. Don't people rinse a dish thoroughly after washing? You couldn't possibly react to that unless they didn't rinse and the soap would have to contain a gluten component....which I have yet to find after almost 7 years gluten free.

I'm getting really tired of this condescending discounting of other people's experiences, Gemini. Of all the ways he could have been glutened, the plate made the most sense in a number of ways (timing, likelihood, the only thing he was putting in his mouth that could have any chance of being glutened, etc). His gluten reactions are very specific and obvious so I'm confident it wasn't something else.

Plates have not been a problem at my mom's house and she does hand wash some... however, her kitchen is not in a constant state of baking, either. This friend does constant baking, and does not have a dishwasher. She uses the same sponges and rags for all her dishes, and almost every dish she makes contains gluten. Dishes sit out in the kitchen to dry, or get wiped with a dishtowel that hangs in the kitchen where all that baking takes place. When we first got serious about cc I didn't let my kids eat there at all. Normally I'd bring my son a plate, but I forgot, and had relaxed thanks to advice like yours.

Since the plates were put away I didn't think about it until my son was sick and we looked back for a potential cause. In the future I will always rinse dishes at her house myself, and not wipe and dry them with her towels! In cafeteria settings where dishes are washed by hand and then rinsed and through a sanitizer, I've seen plates come out still covered in pasta scum. The sponges and dishwater are full of gluten, too.

There are risks and for someone who is supposedly gluten-free and still has high numbers they should be considered. People in this situation should get tested for other autoimmune diseases that could elevate levels, and also look out for cross-contamination.

Whether you believe it or not, my son was still sick until we got serious about cross-contamination. When he goes to a class every day all day for a week, inevitably he ends up glutened. School is full of kids eating all sorts of gluten crap, and spreading it all over the pace. That's a real risk.

...Not something to be obsessive-compulsive and fearful about, but something to take precautions against.
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#758936 Gluten Free Didn't Solve All My Issues

Posted by on 22 December 2011 - 02:26 AM

I get the light yellow stools and have found digestive enzymes help. You might look into gaps as well. It is similar to paleo but includes more probiotic foods and has a set progression of introducing foods, and is all about healing the gut. There are lots of posts here and on my blog about it.
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#758600 Super Sensitive Teen

Posted by on 21 December 2011 - 08:21 AM

Bobs red mill has a dedicated facility but processes gluten free oats, which is why people who are cross reactive to oats have a problem.

I have to say we started off with gemini's approach and it wasn't enough. Whole foods and care with cc have been very important to our son.

Whenever I relax he gets glutened. I let him eat off a handwashed dish (her sponge) at a friend's house... That got him. When he forgets to wash his hands at my mom's that gets him. When he eats in a cafteria setting with crumby tables and kids, that gets him.

As for the notion that he's 14 so he must be cheating, well, it's possible but no guarantee. I'm curious about how he feels about all this. At 14 it's up to him to make his diet work. I hope he will be presented with the evidence here and then be supported in his own reasonable decisions so long as they are not completely self destructive. He probably would like to stay out of the hospital and get to feel good and hang out with his friends. Many 14 year olds are very careful with their diets for all sorts of reasons.
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#758595 "can You Eat This? What About That?"

Posted by on 21 December 2011 - 08:09 AM

In time, if you are polite and consistant, most people will get it. It can be helpful if you can identify something safe they cam share. (dont do it if you are too sensitive, though!)
My mom is delighted that I've started letting my kids have whole fruit they can wash and peel at her house.
I have a few posts on how to handle this kind of thing on the blog linked from my profile. One is called The Holidays and then there are Crazy Diet People parts 1,2and3.
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