Celiac disease

[JoeRockStar]

Probably a boring thread by GB standards as there's no Obama or Palin content.

Anyone have celiac disease/gluten intolerance or know someone who does? My wife has been suffering from stomach/intestinal problems for a decade with no answers despite batteries of testing. For the last month, she's been in debilitating pain most of the time and recent blood test showed increase liver enzyme levels with no explanation. As expected, her doc's response was to order MORE tests, endoscopy, etc.

I'd had enough of non-answers at this point and started researching on my own. After filtering through symptoms and diagnoses, I was left with 2 strong possibilities - Hashimoto's Hypothyroidism and celiac disease. We knew she had been tested for thyroid disorders since one quack was convinced she needed her thyroid irradiated (his diagnosis was quickly discounted by a 2nd opinion) plus she was recently tested again.

That left celiac disease, which no one has EVER mentioned to us or tested her for. The only treatment for celiac disease is a gluten-free diet (which explains why no one has diagnosed her with it - no Big Pharma $$'s ). After discussing with her doc, my wife decided to give the diet a try while waiting for them to schedule another endoscopy.

After just 24 hours on this diet, my wife started noticing some very peculiar changes - her vision, which was normally somewhat blurry, was clear! Her stomach which was typically distended was flattening! By 2PM every afternoon, she was normally drinking cups of coffee to find the energy to finish work for the day - she didn't even realize she hadn't had any until almost 4PM!

After 48 hours on the diet, she realized that she hadn't had hearburn any longer. Her complexion changed, some of the splotches on her chest and neck began to clear. Normally on a Friday, she has to take a nap after work to have the energy to go out and see my band play - this past Friday she DID NOT NEED A NAP!

I'm completely overwhelmed at the dramatic recovery she's experienced over the last week. She's been dealing with this literally for a decade now and it's so unbelievable to finally get back the energetic, happy woman I married 18 years ago. Jeez, she even approached ME for sex this weekend instead of the other way around!

If you or someone you love has been dealing with stomach problems and not getting answers, try going gluten-free for a few days. Many restaurants and fast-food chains have gluten-free menus, and most big supermarket chains have gluten-free sections (Publix down here does). You'll know quickly if that's the issue, my wife is on her 5th day of it and her exact words were "it feels like being reborn after 10 years of suffering!"

 

[moman75]

My brother-in-law has it. He was ill for years....not severely, just never "felt good". Finally he was diagnosed, began the diet, and has done very well. I know the availability of gluten-free food items has increased since then.

 

[JoeRockStar]

I know the availability of gluten-free food items has increased since then.

Indeed, and it's tough to tell the difference with some of the newer products! She made meatballs last night using a brown rice based bread crumb substitute, neither I nor our kids knew the difference until she told us afterwards.

 

[moman75]

I know restaurant dining can be an issue. Apparently, some patients are so sensitive they can have a reaction from a mere trace of gluten.

 

[Peregrinator]

I know restaurant dining can be an issue. Apparently, some patients are so sensitive they can have a reaction from a mere trace of gluten.

Depends on where you are. Lady P's cousin was visiting us in Portland (OR) at one point and his jaw kept dropping at the variety of stuff available gluten-free. Not to malign MO, but I think the more "progressive" a state is, the more likely you are to see restaurants catering to people's particular diets, veggie, vegan, kosher, gluten-free, etc. Sorta comes with the rainbow.

Joe, I'm glad your wife figured out what was wrong. I've known several people with Celiac, and it can be a real bitch.

If she relapses or continues to have problems, consider acupuncture and/or an herbalist. My sister has something like it, and practices Chinese herbal medicine. She's found some really helpful traditional treatments.

 

[philosophygirl]

Indeed, and it's tough to tell the difference with some of the newer products! She made meatballs last night using a brown rice based bread crumb substitute, neither I nor our kids knew the difference until she told us afterwards.

This post is meaningless without a recipe

 

[Peregrinator]

This post is meaningless without a recipe

http://allrecipes.com//Recipes/healthy-cooking/gluten-free/Main.aspx

http://www.csaceliacs.org/recipes.php

 

[philosophygirl]

http://allrecipes.com//Recipes/healthy-cooking/gluten-free/Main.aspx

http://www.csaceliacs.org/recipes.php

you are a sweetie, thanks

 

[Peregrinator]

you are a sweetie, thanks

Not much effort there...but you'd be worth it even if it took all day.

 

[JoeRockStar]

Joe, I'm glad your wife figured out what was wrong. I've known several people with Celiac, and it can be a real bitch.

If she relapses or continues to have problems, consider acupuncture and/or an herbalist. My sister has something like it, and practices Chinese herbal medicine. She's found some really helpful traditional treatments.

Thanks! I'm a big fan of herbal and alternative medicine so I'll definitely look into that, much appreciated!

On that note, I read a fascinating article about China's development and use of herbal medicines. This particular article focused on the "Lifeflower" which has been 80% effective in treating recovering stroke victims. It would be wonderful if the Western pharmaceutical industry would follow suit.

 

[Peregrinator]

Thanks! I'm a big fan of herbal and alternative medicine so I'll definitely look into that, much appreciated!

On that note, I read a fascinating article about China's development and use of herbal medicines. This particular article focused on the "Lifeflower" which has been 80% effective in treating recovering stroke victims. It would be wonderful if the Western pharmaceutical industry would follow suit.

Oh, I'd love to see a link. This kind of stuff fascinates me.

The answer, of course, is that they aren't sure they'll be able to make money on it. They're busy marketing hay fever drugs that don't work any better than the existing ones direct to the consumer.

 

[JoeRockStar]

This post is meaningless without a recipe

It's only been a week that my wife's been on this diet so we're still new at this sweetie. Sticking to the simple stuff for now, but I do have 2 cookbooks on the way from Amazon at a friend's suggestion. They use sorghum, corn, rice, or potato flour to make all kinds of baked goodies like pancakes, fresh bread, muffins, etc.

I hereby promise to post any and all noteworth gluten-free recipes for ya.

 

[JoeRockStar]

Oh, I'd love to see a link. This kind of stuff fascinates me.

The answer, of course, is that they aren't sure they'll be able to make money on it. They're busy marketing hay fever drugs that don't work any better than the existing ones direct to the consumer.

Here's the link:

http://www.foxnews.com/health/2011/01/17/lifeflower-treatment-stroke/

It really bothers me that we haven't CURED anything in years, only produced more band-aids for the symptoms. But curing diseases goes against their business model....

 

[Peregrinator]

Here's the link:

http://www.foxnews.com/health/2011/01/17/lifeflower-treatment-stroke/

It really bothers me that we haven't CURED anything in years, only produced more band-aids for the symptoms. But curing diseases goes against their business model....

Thanks, very cool. There are a number of people I have to send that link.

So true. Big Pharma has produced very few "blockbuster" drugs for anything serious in decades. It's all symptoms and crazy nonsense like repackaging Prozac for PMS. Nothing to treat the causes of what they call "ED," just things to dilate peripheral blood vessels and give you a hard-on despite the underlying pathology.

Don't get me started...

 

[philosophygirl]

It's only been a week that my wife's been on this diet so we're still new at this sweetie. Sticking to the simple stuff for now, but I do have 2 cookbooks on the way from Amazon at a friend's suggestion. They use sorghum, corn, rice, or potato flour to make all kinds of baked goodies like pancakes, fresh bread, muffins, etc.

I hereby promise to post any and all noteworth gluten-free recipes for ya.

Thanks I was interested because I imagine it made the meatballs higher in fiber. I always look for healthy recipes that are tasty. Health food that tastes like health food is not as much fun.

 

[islandman]

I have non-Celiac gluten intolerance and you learn to live with it. Here in NYC there are enough choices with which to make do.

 

[JoeRockStar]

I have non-Celiac gluten intolerance and you learn to live with it. Here in NYC there are enough choices with which to make do.

Hmm very interesting....her blood test for celiac disease came back negative but we (and her doc) can't deny the radical improvement she's experienced from the GF diet. Doc also told her the blood test is at best 70% accurate, the only way to 100% confirm celiac is via endoscopy.

Can you please share any info you have on gluten intolerance vs celiac? Thanks!

 

[KRCummings]

Gluten free foods have been getting more and more popular recently. It's a fairly popular diet for people with autism because many suffer from intestinal issues for some reason and there's a theory that there is a connection between diet and autism. Anyway, I've seen that even WalMart has been carrying many items labeled as gluten free.
I like the word gluten. It makes me think of glutes which makes me think of butt which makes me giggle.

 

[JoeRockStar]

Gluten free foods have been getting more and more popular recently. It's a fairly popular diet for people with autism because many suffer from intestinal issues for some reason and there's a theory that there is a connection between diet and autism.

Not surprising given there's genetic links with both celiac and autism. Our son has Asperger's/autism, I've always wondered if he'd benefit from the GF diet.

Honestly, at 14 he's come SO far along via occupational therapy that you'd be hard pressed to notice anything different about him. I think he'd kill me if I told him he can't eat pizza anymore!

 

[Karen Kraft]

****"

NEVER MIND

 

[islandman]

Hmm very interesting....her blood test for celiac disease came back negative but we (and her doc) can't deny the radical improvement she's experienced from the GF diet. Doc also told her the blood test is at best 70% accurate, the only way to 100% confirm celiac is via endoscopy.

Can you please share any info you have on gluten intolerance vs celiac? Thanks!

My blood test came back negative as well, but the diet switch nevertheless made a world of difference. There isn't a test for it; a diagnosis is often arrived at by ruling out Celiac. The symptoms present the same as Celiac, but without a mortality rate attached to it. The villi of the small intestine aren't damaged, but you do still get that painful inflammatory reaction.

It varies from person to person, but for me it means no more large gluten-full meals, which is unfortunate given my love of bread, Italian and Chinese food. Still, I can eat them infrequently and in moderation. At first I switched to a gluten-free diet, but over the ensuing months I added back some gluten to see what I could manage to create a baseline of sorts.

The biggest pain (no pun intended) is shopping for gluten-free food. The gluten-free symbol on the packaging is a start, but its a crapshoot as to taste. My advice to your wife is to just try different brands until she finds the one she likes. It's not terribly abundant and can be percentage-wise pricier than comparable gluten-full foods.

 

[Peregrinator]

This thread needs input from SheRem. I'mma link her via email.

 

[Debbie]

My Niece has a lot of food issues and needed some gluten free recipes.
This site is amazing.

http://goneraw.com/

 

[where]

A close friend of mine has celiac disease and it's really debilitating. even small amounts of anything containing wheat or modified starch (like when I put a bit of colemans mustard in some salad dressing without thinking) seriously incapacitate him. We don't have a great variety of fancy shops here, but he gets by.

 

[bobinks2]

I think he'd kill me if I told him he can't eat pizza anymore!

They have gluten free pizzas.

I tried my son on a gluten free diet about five years ago, and again this past Fall. The availability and quality of gluten free foods has really come a long way in the past five years. Many of the foods are actually quite tasty. We were able to find substitutes for all foods that my son eats except bread. I got two gluten free recipe books off of Amazon (it was actually one book, and the bread machine version of the same book) and an expensive bread machine. My son just would not eat the bread. It happens to be very crumbly. After eating a sandwich, there are crumbs everywhere. I don't think an adult would have trouble with it.

The gf pasta that we used is brown rice pasta. It's available everywhere locally, including Wal-mart. Forget about the traditional al-dente method of cooking pasta, where you turn of the heat and let the pasta sit in the formerly boiling water for 3-4 minutes. You need to COOK that brown rice pasta for at least 15 minutes.

You should probably get used to making a lot of your foods from scratch if you don't already.

Good Luck