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Member Since 13 Nov 2010
Offline Last Active Today, 04:38 PM

#848274 If Your Body Is Making Anti-Gliadin Antibodies, Doesn't That Mean You...

Posted by on 13 January 2013 - 06:20 AM

Dr Hasan goes even further by asking - what if the three antibody tests are negative but I still suspect celiac disease?

He says that celiac disease is much more than just a GI disease, citing DH, too, and gluten ataxia, and many other cases. And he notes the nervous system has poor regenerative ability.

He cites the pyramid:
The tip of the iceberg is Active celiac disease - signs and symptoms, check; genetic, check; serology, positive; mucosal damage.

There is Potential - relatives and patients who are at high risk.

And with Latent celiac disease you have normal mucosa, but you have the genetics and presence of antibodies.

Silent celiac disease - with abnormal mucosa and no symptoms.

We need to treat the disease, not the mucosa, he says.

So in the case of suspecting celiac disease in the face of negative testing, Dr Hasan recommends doing a genetic study. If positive, go on a trial of gluten-free diet.

He says 20% of patients w/ DH, have normal mucosa.

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#833113 Petition for Gluten-Free Labeling on White House Website - Celiac.com

Posted by on 29 October 2012 - 08:05 AM

I don't get it. Right now, we have no idea if barley and rye are in a product ("flavorings"), as it is not the law that gluten be acknowledged, only wheat. With the new proposal, we would know that 20ppm or less is in the product. What is wrong with that?

We are approaching the deadline. Apparently about 16,000 people have signed, and 25,000 are needed. It looks like we won't make it.

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#749151 Finding The Right Combination Of Learning Sources

Posted by on 20 November 2011 - 09:17 AM

When attempting to learn about something in depth, the key often is to find the right combination of resources. It's almost impossible to find a one-stop shop that meets all needs when it comes to something as complicated as medicine and celiac disease. I would like to share with this group of people the combination of sources I have found that has helped me unlock many of the mysteries and impediments to my own understanding of celiac disease.

First off, the two books I bought after diagnosis last year were The Hidden Epidemic and Gluten Free for Dummies. Both are your pretty standard purchases and both launched me on my very imperfect often highly frustrating understanding of celiac disease.

The most annoying of my learning blocks was the concept of nutrient absorption. From the Green book (Hidden Epidemic: Celiac Disease) I walked away with - celiac disease prevents the proper absorption of nutrients from food. And that was pretty much it.

My screaming question was: ABSORPTION...WHERE????? Do I want food to pass into the blood stream? Does it go there directly? If we don't have villi then isn't the resulting Katie-bar-the-door free for all state of the small intestines in reality a good thing since then food is more easily and quickly taken into the blood stream?

This was my fundamental question/level of ignorance.

It was not until I happened upon The Key that I got it.

The Key is a wonderful book called Know Your Body: The Atlas of Anatomy, introduced by Trevor Weston MD. (It's also been introduced by others, I learned yesterday.) I l-o-v-e this handy dandy book and cannot recommend it highly enough. I am not particularly scientific-minded but I am curious and I loathe mysteries. This book was just what the doctor ordered.

The villi contain the blood vessels and lacteals that transport the nutrients either to the blood stream or to the liver (for further processing). It's all there in Know Your Body. This is THE supplement to the Green book for all those lay people out there, which is most of us.

Further supplementation: I Tunes U. Please check out this wonderful resource if you have access. Last night I listened to a professor at East Tennessee State lecture a class of what I believe were nursing students. From his lecture on the small intestine, I learned that there are at least three different sets of the most-rapidly dividing cells: nails, hair and those in the villi. In fact the epithelial cells of the villi are The Most Rapidly dividing cells. This is why people who are on chemo get sick. Makes sense! Chemo targets rapidly dividing cells, cancer cells, but also hair, nails and epithelials.

Sidetrack, sorry.

Know Your Body
has one key component to facilitate learning: excellent drawings.

Who knows, I may regret my decision to go "all-in" learning about celiac disease, and I still have a long way to go (next up, IgA, antibodies, white blood cells, proteins-amino acids - basically the gluten trigger).

Please consider this wonderful (but hard to find) resource to aid your learning about celiac disease, auto immune disease, and to facilitate your care including doctors' appointments.

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#743390 Aveeno

Posted by on 31 October 2011 - 02:58 PM

Products like a body lotion are not likely to be ingested, so they would not be a problem in spite of any gluten containing ingredient. Of course if you have a wheat (or oat-grain) skin allergy it's a different story.

I'm not sure why you would think that. Well, maybe I am thinking of hand lotion. You would not say the same thing there would you? Also, body lotion can get on your clothes, sheets, partner. The way I think about it is that we (especially women) eat our cosmetics, like it or not. Yes, that may be a bit hyperbolic. But I've been trying to give up all lotions that I know contain gluten.

And I respond to this post specifically because I dearly loved Aveeno lotion. It just worked so well on my hands which have a tendency to get eczema. I have it now. I miss the Aveeno, I really do. I wish they'd make it gluten-free. Right now I'm using Trader Joe's Moisturizing Cream extra dry formula for body lotion. And Borage therapy dry skin lotion for hands. It's been fine in the past, but my hands are just flaring up (stress and lack of sleep do not help).

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#686274 What Does Everyone Eat For Breakfast?

Posted by on 24 March 2011 - 05:17 AM

I'd like to thank everyone for responding. There are some fantastic ideas here, especially those I can make ahead. I will come back to this again and again.

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#685502 What Does Everyone Eat For Breakfast?

Posted by on 21 March 2011 - 02:38 PM

Protein is supposed to curb hunger/make you feel full. When I was trying to lose weight, I made sure to eat some protein with every meal so that I wouldn't have the munchies all day, and it seems to work.

I found a few vegan, gluten-free protein powders too that I am going to try when I cut gluten. I put protein powder, rice milk, bananas and frozen berries in a smoothie. I also put in soy yogurt or coconut yogurt because I'm vegan, but if you eat dairy, you could just use regular yogurt. Or you could do peanut butter smoothies if you're allowed to eat peanuts. That's extra protein.

Can you eat potatoes? Fried potatoes (hash browns, cottage fries, whatever) are filling. And yummy! ;)

Yes, I can eat potatoes! And that is a very good suggestion. I could either cut up a bunch to have them ready each morning, or I could go ahead and cook them ahead of time and just re-heat. Along w/ the sausage and eggs, I believe that would constitute a filling breakfast.

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#685499 What Does Everyone Eat For Breakfast?

Posted by on 21 March 2011 - 02:35 PM

Cream of buckwheat cereal with a generous amount of cinnamon is one of my favorites. A single serving is even often too much but my little dog will scarf up whatever is left over. Scrambled eggs, a couple slices of toast and some fruit or if I am in a hurry peanut butter toast are my among staples. If I have left over pizza from the night before that is for sure what I have the next morning.

May I ask what brand of cream of buckwheat cereal you buy? Is it a hot cereal (I like hot cereals). I used to eat McCan's oatmeal, pre-diagnosis of course, and it was DEEE licous. (Anything approximating that would be good.)
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#685478 What Does Everyone Eat For Breakfast?

Posted by on 21 March 2011 - 01:30 PM

I thought I'd just go ahead and go for it, though probably the topic has been started a million times.

What does everyone eat for breakfast?

I am getting concerned that my morning meal might just have too much sugar. I eat lots of fruit, have a pancake and some tea. Of course I have syrup on that pancake. Oh, and often I have chicken sausage, a small amount.

Just curious what everyone else chows down on. Important for me is to feel full. When I read, pre-celiac disease diagnosis days, about people's breakfasts, I couldn't believe how paltry they sounded.

Someone recently told me a Russian saying: eat breakfast for yourself; share lunch with a friend; give dinner to your enemy.

Thanks everyone!
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#685135 Severe Depression/ Thyroid Issues Linked To Celiac Disease?

Posted by on 20 March 2011 - 05:46 AM


I haven't read all the replies, yet, but as far as getting off anti-depressants, I can recommend a couple of web sites. For tapering off, google crazy meds. Or "crazy meds US" - something like that. It has details about all the different kinds of drugs that psychiatrists dole out. And as far as getting off them, of course their chemistries are all different, so it will be not be a one size fits all formula for tapering. You probably know all this. Then, I'd like to recommend some sites that deal with what I call mental distress usually without drugs. One is alt mentalities I think, and the other one is Beyond Meds. Beyond Meds I look at regularly and it is very very good.

Good luck whatever you decide to do.

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#664449 Whole Foods' Nut Choices

Posted by on 31 December 2010 - 02:01 PM

Do keep in mind that shared facility notices are voluntary. Just because it does not say on the label that the facility is shared you cannot assume that it is not.

Thanks Peter. But wouldn't *raw* Spanish peanuts be ok?
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#662305 Allergy Test Results

Posted by on 21 December 2010 - 09:15 PM

My Dr warned me that once I started feeling better without gluten, other issues might come out of the woodwork. Too bad she's so darn smart!!

But I've also heard that you might have to give up things - eg soy, milk, etc - when first going gluten-free and then you can reintroduce it after you've healed.
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#657712 Celiac Mom's Dementia Issues

Posted by on 01 December 2010 - 07:36 PM

There could be more than one physiologically based cause of dementia. It may even be temporary. Others have mentioned the B12 problem. There's also pernicious anemia that you may want to get her checked out for. I'd just research it as much as possible. Blood tests! I was concerned about the drastic weight loss.
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