[mellowyellowmushroom]

Has anyone good stories about how they're loved ones managaed? Or are any of you loved ones of celiacs and can tell me how you worked on coping with the disease?

It's been terribly difficult for my family to figure it out--though my mother is wonderful. I was just diagnosed a few weeks ago...I got even more ill with parasites soon after and am twenty pounds underweight.

Stories, please?

[nasalady]

mellowyellowmushroom, on May 31 2009, 01:43 PM, said:

Has anyone good stories about how they're loved ones managaed? Or are any of you loved ones of celiacs and can tell me how you worked on coping with the disease?

It's been terribly difficult for my family to figure it out--though my mother is wonderful. I was just diagnosed a few weeks ago...I got even more ill with parasites soon after and am twenty pounds underweight.

Stories, please?

I was the one diagnosed with celiac disease last fall, so at first I tried to cook gluten free dinners for everyone, but my husband and kids continued to eat gluten-y foods for breakfast and lunch.

This didn't work for our family, although some families manage to deal with it and keep the gluten-free stuff separate from the gluten foods. I was constantly being "glutened" by stray crumbs, which isn't surprising since the kids are ages two and three.

So we all went gluten free in January....we threw out or gave away all foods containing gluten, then we replaced all cutting boards, wooden spoons, non-stick pots and pans with scratches in them, the toaster, all plastic containers, etc., etc. This was a LOT of work, but definitely worth it!

I've learned to cook just about anything gluten-free; my husband is very happy because I found a good recipe for gluten free pizza crust.

I work two jobs, so I have to do a lot of the cooking on the weekends. I have a set of weekly menu plans and a collection of recipes at the following websites:

http://autoimmunedis...g.blogspot.com/

http://joannsgfrecipes.blogspot.com/

The good news:

1. My kids' skin conditions (keratosis pilaris and eczema) cleared up on the gluten free diet.

2. The two-year-old, Emma, has also gained a significant amount of weight since January (she went from less than 21 pounds in January to over 22 pounds in May). This is a HUGE deal for Emma because one of her many diagnoses is Failure to Thrive; she was WAY below the standard growth curves. Her pediatrician and gastroenterologist had both been talking about installing a gastric tube for tube feedings overnight....but during her last visit the pediatrician said that wouldn't be necessary now that she's gained some weight!

3. My husband inadvertently discovered that he also has celiac disease; he tried drinking some beer after several weeks on a gluten free diet and broke out with a bad case of dermatitis herpetiformis. He is one of the many people out there who have "silent" celiac....i.e., no gastric symptoms.

So the bottom line is that the gluten free diet has improved the health of my entire family, and when this started we thought I was the only one with a gluten problem!

I hope that you start to feel better soon! Good luck!

JoAnn

[FMcGee]

It's really hard at first, but I've found that engaging some friends in the Great gluten-free Cooking Adventure has made this more fun. A friend came over last night with some garbanzo flour and a recipe he thought I'd like to make with it. Other friends have enthusiastically gone to Asian/Indian markets with me to scout new, naturally gluten-free foods. They line up to try my new recipes, and when the recipes suck, they don't give me a hard time about it. I realize I have an unusually great group of friends and am lucky, but is there even one person you can get to kind of take this journey with you? It's helped me be a lot more upbeat about the whole thing. The whole culinary adventure side of things could be really overwhelming without people comparing rice noodles with me.

[mellowyellowmushroom]

nasalady, on May 31 2009, 03:17 PM, said:

I was the one diagnosed with celiac disease last fall, so at first I tried to cook gluten free dinners for everyone, but my husband and kids continued to eat gluten-y foods for breakfast and lunch.

This didn't work for our family, although some families manage to deal with it and keep the gluten-free stuff separate from the gluten foods. I was constantly being "glutened" by stray crumbs, which isn't surprising since the kids are ages two and three.

So we all went gluten free in January....we threw out or gave away all foods containing gluten, then we replaced all cutting boards, wooden spoons, non-stick pots and pans with scratches in them, the toaster, all plastic containers, etc., etc. This was a LOT of work, but definitely worth it!

I've learned to cook just about anything gluten-free; my husband is very happy because I found a good recipe for gluten free pizza crust.

I work two jobs, so I have to do a lot of the cooking on the weekends. I have a set of weekly menu plans and a collection of recipes at the following websites:

http://autoimmunedis...g.blogspot.com/

http://joannsgfrecipes.blogspot.com/

The good news:

1. My kids' skin conditions (keratosis pilaris and eczema) cleared up on the gluten free diet.

2. The two-year-old, Emma, has also gained a significant amount of weight since January (she went from less than 21 pounds in January to over 22 pounds in May). This is a HUGE deal for Emma because one of her many diagnoses is Failure to Thrive; she was WAY below the standard growth curves. Her pediatrician and gastroenterologist had both been talking about installing a gastric tube for tube feedings overnight....but during her last visit the pediatrician said that wouldn't be necessary now that she's gained some weight!

3. My husband inadvertently discovered that he also has celiac disease; he tried drinking some beer after several weeks on a gluten free diet and broke out with a bad case of dermatitis herpetiformis. He is one of the many people out there who have "silent" celiac....i.e., no gastric symptoms.

So the bottom line is that the gluten free diet has improved the health of my entire family, and when this started we thought I was the only one with a gluten problem!

I hope that you start to feel better soon! Good luck!

JoAnn

Thank you! I needed the encouragement.

My family also has a long list of autoimmune diseases on its hands. Do you mind if I ask how you got your doctor to diagnose? Mine has been less helpful as I had "inconclusive" bloodwork and was already gluten free...or trying to be due to symptoms.

Again, thank you. I'm going re-read your post a few times.

[mellowyellowmushroom]

FMcGee, on May 31 2009, 04:13 PM, said:

It's really hard at first, but I've found that engaging some friends in the Great gluten-free Cooking Adventure has made this more fun. A friend came over last night with some garbanzo flour and a recipe he thought I'd like to make with it. Other friends have enthusiastically gone to Asian/Indian markets with me to scout new, naturally gluten-free foods. They line up to try my new recipes, and when the recipes suck, they don't give me a hard time about it. I realize I have an unusually great group of friends and am lucky, but is there even one person you can get to kind of take this journey with you? It's helped me be a lot more upbeat about the whole thing. The whole culinary adventure side of things could be really overwhelming without people comparing rice noodles with me.

My mom has been a great help. And I also love to cook / bake and have made some scones, cookies, bean recipes that the whole family likes.

Just...not everyone realises how important keeping gluten things segregated is; and they don't want to give up their comfort foods. It's scaring my dad, I think. And being this sick and 21 makes it impossible to 'live on my own' gluten-free.

Your friends sound great.

[FMcGee]

mellowyellowmushroom, on May 31 2009, 07:19 PM, said:

My mom has been a great help. And I also love to cook / bake and have made some scones, cookies, bean recipes that the whole family likes.

Just...not everyone realises how important keeping gluten things segregated is; and they don't want to give up their comfort foods. It's scaring my dad, I think. And being this sick and 21 makes it impossible to 'live on my own' gluten-free.

Your friends sound great.

I'm glad your mom is being helpful. I hope your family can be empathetic and realize that you're the one who has to give up the food you love forever, not them. Dads can sometimes freak out like that. A little panic on his part is normal, I think; hostility is different. If there's hostility, it might be time for a talk. They can't be actively glutening you!

I don't know your situation, of course, but chances are you'll be able to live on your own eventually. I'll have my fingers crossed for you that things get better quickly. Keep in touch - sometimes just venting helps, and this is a good place for that!

[ang1e0251]

Just...not everyone realises how important keeping gluten things segregated is; and they don't want to give up their comfort foods. It's scaring my dad, I think. And being this sick and 21 makes it impossible to 'live on my own' gluten-free.


In the beginning, I had to play a mental game with myself so I wouldn't be tempted by gluteny things. I think this helped others understand my needs also. Maybe it would help your dad and others trying to maintane their food while wanting you to be well. I visualized gluten as poison ivy. If I saw bread, it was made with poison ivy flour. If I was served a salad with croutons, the server might just want to pick them out. But I would not eat a salad with poison ivy laying on it, so no, won't eat it. I don't go into pizza places any more. I used to work in one and I know how many hours the flour floats in the air and settles on everything. Imagine poison ivy flour, would your dad touch that? Even a little would make him react, right?

It's hard for some to think their whole lifestyle has to undergo changes even though they aren't the ones who are sick. He'll get it, he just has to vent a little bit. Is he really upset about food or is he scared because you are so sick?

[nasalady]

mellowyellowmushroom, on May 31 2009, 04:16 PM, said:

My family also has a long list of autoimmune diseases on its hands. Do you mind if I ask how you got your doctor to diagnose? Mine has been less helpful as I had "inconclusive" bloodwork and was already gluten free...or trying to be due to symptoms.

Well, I guess I was fortunate in that my gastroenterologist is apparently a progressive thinker who is really up on the latest celiac disease literature.

I have a nasty habit of downloading and printing out recent medical journal papers to take with me to my first appointment with any doctor, just in case I run into "antiquated" attitudes. I always offer to give these articles to the physician in question. Can you imagine, some doctors actually fail to appreciate my generosity!

When I first met with my GI doc, I knew he was a good one because he (1) liked the articles I printed out for him, (2) was already familiar with them, and (3) thought that going gluten-free would almost certainly help my other autoimmune diseases, even if I didn't have celiac disease!

I was on very high doses of prednisone and Imuran at the time (both are immunosuppressants) because of my autoimmune hepatitis, so he told me to continue to eat gluten until after the tests were done, but he was pretty sure the tests would be negative because of the drugs (they will suppress any autoantibodies and prednisone has been known to allow villi to regenerate even if a celiac is eating gluten-y foods).

I think the doctor had already decided that I very likely had celiac disease even before he tested me, because I had so many other autoimmune diseases, because I had a positive response to the gluten free diet, and because there is celiac disease in my family. Also, I had canker sores all over my mouth, diarrhea, and other indicators that I had a problem with gluten. Sure enough, the blood tests and biopsy came out inconclusive/negative, except that my DNA testing revealed that I have the HLA DQ8 marker.

That was enough for him; it may not be enough for many other doctors though.

Here is a link to an article about one of the primary researchers who is studying how celiac disease "opens the door" for other autoimmune diseases to develop:

http://www.umm.edu/n...ses/zonulin.htm

and here is an abstract by Dr. Fasano:

http://ajp.amjpathol...ract/173/5/1243

Hope this helps!

JoAnn

[mushroom]

JoAnn, thank you for posting those links, especially the first one, which explains in language even I can understand how Zonulin is the gatekeeper between the intestine and the blood stream, and how too much zonulin keeps the gates open and allows all the problem stuff through--the leaky gut explained in a nutshell.

[nasalady]

mushroom, on Jun 1 2009, 01:52 PM, said:

JoAnn, thank you for posting those links, especially the first one, which explains in language even I can understand how Zonulin is the gatekeeper between the intestine and the blood stream, and how too much zonulin keeps the gates open and allows all the problem stuff through--the leaky gut explained in a nutshell.

You're welcome!

I was so excited when I found out that medical research is apparently on the brink of a big breakthrough in the area of autoimmune diseases! And Fasano's theory just makes so much sense.

One year ago I was trying to figure out what was wrong with me. I started to visit various specialists: rheumatologists, neurologists, gastroenterologists, etc., etc. Every time I saw a new doctor I came away with a new autoimmune disease.....at least, it seemed that way. I actually had to change primary care physicians because my former doctor started to treat me as if I were a hypochondriac (or a liar). She actually said to me, "Just how many times can lightning strike in the same place?"

I started to wonder that myself....until I read about zonulin and the role of celiac disease in the development of other autoimmune diseases. Then I knew that I wasn't a hypochondriac, I wasn't losing my mind, and it wasn't just that I have bad karma or something! There was a concrete physical reason underlying every single one of my AI diseases.

And now I can tell my children and other relatives how to ameliorate their own AI issues or even prevent themselves from developing AI diseases.

Knowledge really is power.

[SGWhiskers]

The adjustment has been harder on my husband than it has been on me (I'm the Celiac), but at 6 months gluten-free, he had that AHAH moment. He had been doing the grocery shopping for a few weeks because the bakery air was causing supersensitive me all sorts of problems. I was sick yet again, and went and put my head on his chest and whined "I hate Gluten" and he said "Me too" and really meant it. I questioned him on it, and he said he knew how much it affected me, and so it affected him too. He has stopped bringing bread home without me asking for anything other than a 2 week trial and my CC worries have faded when I walk in my door. We still bicker at times about if something is really a CC risk, but he no longer is irritated at my irrationality, and washes the dish again when I ask.
Tonight, I was feeling bad again, and he started analyzing my diet and my vitamins, and I realized how much he has learned in the past 9 months. OK, really it is just the basics that I learned in the first week or two of being gluten-free, but he is a medical illiterate and until tonight didn't know that all food went through the stomach into the intestines and out the other end. I think he thought there were multiple paths to the finish line. I don't know??? Oh that made him sound like a moron. He is actually quite smart and gifted in other respects.

And in regards to me feeling bad again and again. I'm starting to come to the conclusion that I have another disorder that is causing problems, but that I've been blaming all my bad days on the Celiac. So dont' think that everyone feels bad 9 months out. After 3 months, there was a drastic improvement in my health when I finally felt full for the first time in months and also quit making mistakes in my diet.

Oh! and when I start telling him something medical or need to research the possible significance of a test result, he has started asking what the source and the research say. Again, this is from a guy who could fall for a "buy this product and cure all your woes" type of ad in a heart beat. I'm also hoping that this improved respect for research and knowledge of the human body will translate into more willingness to get his scheduled screenings and tests as he approaches 40 and beyond.

Oh, and we eat a great meal every night and my Cholesterol dropped 53 points in 9 months almost without trying (I admit that I do limit myself to 3 oz of ground beef/turkey blend in almost every meal we eat because I knew that Celiac's are prone to hight cholesterol and mine was already too high). I still enjoy steak and have as much as I want of whole pieces of meat, but when it is spagetti or skillet meals, I just rely on veggies and herbs more.

And the cake. THE BEST CAKE EVER. Knickinick white cake. Substitute OJ for the water. Make Jello cook and serve lemon pudding. Cut the cake into multiple layers and spread lemon pudding inbetween the layers. Top with Whipped White Frosting. It really was the best cake I have ever made. The idea came off the Betty Crocker site and I just adapted it to make it gluten-free. (I'm still waiting on the Betty Crocker gluten-free cakes here).

SGW

[FMcGee]

SGWhiskers, on Jun 3 2009, 08:17 PM, said:

And the cake. THE BEST CAKE EVER. Knickinick white cake. Substitute OJ for the water. Make Jello cook and serve lemon pudding. Cut the cake into multiple layers and spread lemon pudding inbetween the layers. Top with Whipped White Frosting. It really was the best cake I have ever made. The idea came off the Betty Crocker site and I just adapted it to make it gluten-free. (I'm still waiting on the Betty Crocker gluten-free cakes here).

SGW

Orange juice for water! That is a revelation! I am trying that ASAP. I LOVE orange-flavored things (I am a Florida girl, after all). Placing my Kinnickinnick order now...

[ang1e0251]

I use pineapple juice in place of water escpecially in pineapple upside down cake. M-m-m-m!

[Takala]

Quote

I think he thought there are multiple paths to the finish line

There are, actually. Cupcakes go directly to the hips.

[JNBunnie1]

Takala, on Jun 4 2009, 02:02 PM, said:

There are, actually. Cupcakes go directly to the hips.

HAHAHAHAHA!!!!

I have a positive story, in regards to my family. My mother lives on the floor below me, we bought a house together. She got so sick of having to be so careful cooking for me, but loves to cook for me so much every so often, that she's pretty much made her kitchen gluten free just so she can cook without worrying. I actually do most of the cooking for all of us, my boyfriend & I and my mum, but she likes to do it every 1-2-3 weeks to give me a break.

And my boyfreind!!! He won't let gluten in the house. When people visit, he makes them wash their hands when they walk in. Everyone always asks him, because we have a gluten-free kitchen and he eats gluten-free at home, "Don't you miss out?" His response has always been, "Have you tried her cooking?!?!" He wouldn't care if I fed him porridge daily though, because he's seen how sick I get on the (rare!) occasion I slip up, and he HATES it. Mostly because I'm so miserable, but a little bit because I'm not up cooking!