Gluten Free

After reading all your post about being gluten free and doing some research on the internet about gluten and fsgs i decided i am going to become gluten free... i read that a lot of problems come with eating gluten. anyone who is gluten free have any advice on how to get started?

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There are plenty of website to help you. Since celiac disease is a condition where individuals can't eat gluten. Just search google for "celiac disease diet". I have a condition where I am allergic to gluten and break out in itchy hives. I lived gluten free for a year and at first it sucks.......but o wells plenty of other food still left to be enjoyed.

Tip - start reading labels for their ingredient list most of the time people on gluten free diet ingest them by accident because they don't know the ingredients that are gluten



Good luck

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What ingrediants should I look for specifically

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http://www.celiac.com/

wheat

* including einkorn, emmer, spelt, kamut
* wheat starch, wheat bran, wheat germ, cracked wheat, hydrolyzed wheat protein

barley
rye
triticale (a cross between wheat and rye)

bromated flour
durum flour
enriched flour
farina graham flour
phosphated flour
plain flour self-rising flour
semolina
white flour

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Also watch anything with malt...sadly, for those with troubles, gluten free means no beer. My son in law has this and has to be VERY CAREFUL. Watch that sausages etc do not have filler, etc.
Many caramel colourings also are gluten based. Check out the American Celiac Disease site...also, many grocery stores now carry gluten free bagels, english muffins and bread.
Good luck...I'll be interested to hear how you do. When my son in law is here, we are all wheat free, gluten free and my condition is no better (i have fsgs), but I know this is different for everybody.

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I have an appt with my renal dietician on Friday, and I am going to ask her about going gluten free. I have never had any intestinal problems when I have eating gluten, so I don't know if this is appropriate for me, especially as my diet re potassium and phosphorus is already so restricted.

When I made the appt, my dietician recommended a book, The Ultimate Omega-3 Diet. She said that it addresses the issue of inflammation; in fsgs, your kidneys become inflamed and then scarred. She said that she is not aware of any direct link between gluten and fsgs, but if you are gluten sensitive already, then obviously inflammation is an issue.

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Moosemom let me know what you find out when you meet with the dietician. Im going to look into the omega 3 diet also.

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I just ordered that book The Ultimate Omega-3 Diet from amazon. Its really cheap on there i got it for 5 dollars.

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Hi everyone, maybe you saw my post in another thread. I have FSGS w/nephrotic syndrome. After going gluten-free in September, I went into full spontaneous remission within about 6 weeks. I'm off all medication since November and all numbers are normal. I tested negative for celiac disease and do not have digestive problems. I believe gluten problems materialize in my glomeruli, not the villi in my small intestine as w/celiac disease. My nephrologist said there is no scientific evidence that eating gluten causes FSGS or that going gluten-free makes one go into remission. But he is intrigued and is looking into it; he is open to the possibility that gluten may be a problem for some kidney patients. He said my improvement is remarkable.

I am here on this site not to gloat, rather because I feel it's my moral obligation to spread this news around because it MAY help you. I was scared and desperate until I discovered this to be my solution. I'm sure this isn't the answer for everyone, as there are multiple triggers to FSGS, and most of us have an unknown cause. There is a theory floating out there by allergists and doctors that gluten can cause FSGS and MCD. I believe one day science will catch up. This is not well known, and it's by word-of-mouth.

You can go on http://celiac.com, go on the forums and search "kidney disease" "fsgs" and "mcd" and you will find others with a story like mine. That's where I found my inspiration when my BFF with celiac disease pointed me to that website. I found a woman there named Liz who had the same success that I eventually had. She'd convinced a mother to put her son on a GF diet, and he got better, too, and got off all medication. That website is an excellent resource and has a very comprehensive list of safe and unsafe foods. You can find it on the left-hand toolbar of the home page.

For those of you that decide to give this a try, I wish you all the best and I hope you find this helps your situation. I have my life back, and am so grateful. GF can be a little daunting at first, but after a couple months, it's second nature, and if it helps, it's certainly worth it.

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Hey. I actually read you wrote about being gf and how it helped you. You've inspired me to do the same. Yesterday was my first full day of being Gluten free. And it was pretty easy. I'm sure it won't be easy everyday but I'm determined to test this out! I'm happy to hear of your success!

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This is kinda related to this thread. I don't have Celiac Disease I don't think because I'm overweight but.... I went to a free class the other day on "The Blood Type Diet" and found out for my blood type I shouldn't be having anything with wheat in it and some other foods on the list. I've been following this diet for 6 days now and I've been losing weight and feeling much better and my joint pain in my knees (moved to a house with lots of stairs recently) and my digestion is 100% better now. So there might be something to the gluten free diet and fsgs since I have fsgs too. I have no clue if the blood type diet is a bunch of bull or not but hey, if it works then it's a good thing right? I do know that I'm eating really healthy whole foods now and feeling great.

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Yay! I'm so happy you're giving it a try! I'm finding that after falling into a routine with food, it's not difficult at all. The most challenging part is in social situations such as eating out or eating at someone's house. I ate at a friend's recently. I asked ahead of time what he was preparing (pasta), and asked if it was okay that I bring my own brown rice pasta because I have a gluten intolerance. He was very accommodating and I was able to eat his homemade pasta sauce on top of it. We were both low key about it and none of the other guests even knew. Most people are understanding, and you will run into to some that think you're on a fad diet or others try to get you to try a bite of cake because "it's just a little bit of gluten". Keeping your sense of humor and not letting any of get under your skin is a must! After all, it's your health, not theirs.

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DeniseSt, I am so glad that you took the time to tell us about your GF diet! You've made so many important points. I think we as a society underestimate the power of food, both the good and the evil. Our food is so industialized that we have lost the knowledge of what real food actually is. Many people don't/can't/won't cook and depend upon big agriculture to feed them, and the result is a generally unhealthy population. The additives, the salt, the sugar...ugh.

Inflammation...I think that is the key word. For you, it seems that gluten is an inflammatory agent. And it is so pervasive! I was so surprised to see how much gluten is in things that you would assume were gluten free!

I just came back from CA where I spent two weeks at a family reunion. Everyone knows about my kidney problem and were very understanding about my diet, but they didn't REALLY understand about the complexities of it. My aunt loves to cook, and she made most of our meals, but they were invariably loaded with things like cream (as in corn chowder) and cheese...all phosphorus rich but easily overlooked. My husband thought he was doing me a favour by making me some creamed corn because he knew I could eat corn, but, genius that he claims to be, thought "creamed" meant merely "smooshed"; it actually never occurred to him that there might be "cream" in "creamed corn." That's the sort of thing that happens when you are in a situation where you can't control your own food processing.

Anyway, thanks so much for helping us to focus on this issue of the possible inflammatory nature of our food. It's really an important topic for those of us with this inflammatory disease! THANK YOU!

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RiverHipster: That's very interesting to hear about your success so far with cutting wheat out of your diet. What is your blood type, by the way? Mine is A+. I'll look into that diet. There is a lot of noise out there about diet, and I try to block out the noise of those that are obviously just trying to make a buck. I think Ayurvedic diets make sense, based on complexity I'll simplify to call a "body type" for lack of a better word. I try to remain open-minded enough to consider that the right diet may help my medical condition -- or the wrong diet may have caused it.

FlyingFeet: I'm laughing about your comment about beer. Sad, isn't it? I gave up beer 18 months ago in support of my BFF with celiac disease. This was before I came down with FSGS. She said she missed beer the most. I mourned the loss of beer, but like anything, time heals all wounds! I'm completely over it.

MooseMom: Thank you. I'm so thankful to all of you who are at least listening and/or giving this a try. The cream corned story is funny! You have to laugh, right?

In doing research, I found that wheat has been in our diet for only 10,000 years. In terms of evolution, that's barely an eye blink. Cavemen didn't eat wheat. They also didn't eat dairy after breastfeeding was done. (I'm in denial about dairy and continue to eat it neverthless.) Wheat became a highly used staple in our diets only starting about 100 or so years ago during the industrial revolution. And the last two generations, and more so this generation, wheat has been used to add to most processed foods, fast foods, frozen dinners -- all those foods we eat so that we can spend less time in the kitchen cooking real food. And sodium! The incidences of FSGS are on the rise, and the population of who gets FSGS has been shifting to children. The source of the wheat proliferation story is on http://celiac.com. I will have to look for my source about the population shift of FSGS to children...right now I don't remember where I saw that.

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Ohhh, this is weird.

Of course I've heard of Oprah, but I don't think I've ever watched an entire episode of her show. Just comes on at a bad time for me. But I happened to turn on the TV this AM as I was doing some chores, and the conversation was about "real food." One guest was the guy who has written several book about the subject, including his latest, "Food Rules." Michael Pollan I think is his name (too busy to go look it up). Some of his rules were:

Don't eat anything your great-grandmother wouldn't recognize (ie, string cheese.)

Don't eat anything that has ingredients which a third grader couldn't pronounce (ie all of those preservative chemicals).

Don't eat anything that doesn't rot (ie a Twinkie he had used as a prop two years ago...it was still "fresh" when he unwrapped it).

Diet and disease is a really interesting topic. I haven't started reading "The Omega 3 Diet" book yet, but if any of you have read it, let me know what you think, OK?

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Michael Pollan is one of those guys that intrigues me because he strips diet down to sensible basics, and therefore, rings true. Eat what people ate three generations ago before processed foods, canned vegetables, and before wheat was stripped of its nutrients to make bleached white bread & pasta, etc. His recent book is on my long list of "must read" books.

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Denise,

I'm type O+ blood type. They say type Os carry the genetic imprint of the very first humans and thrive on high-protein, meat based diet as hunter-gatherers. Dairy and some grains like wheat are some of the foods I should avoid.

I don't know much about type A blood type but it says for type A blood type that "red meat, pork, lamb and chicken are difficult to metabolize, that dairy foods are mostly not digestible, grains except wheat are beneficial, and Tomatoes, sweet potatoes, yams, white potatoes, mushrooms and cabbage are hard to digest. Alkaline fruits are more beneficial than acidic fruits."

That's just a short list and not detailed but interesting.

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After reading all of the previous posts, I will give the gluten free diet a try and see how my next blood results are. Luckily there is a health food store down the street from me, Roots, and they have a huge variety of gluten free foods!

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Hi my 16 yer old daughter in the fall of 09 was diagonosed with FSGS..weaning down right now from 80mgs. of predisone and is lucky responding with trace of protein down from 3-5. I'm so scared that she will relaspe and you have inspired me to try a gluten free diet!! Please keep posting those who are trying this diet and let us all know how you are doing, successful or not. It is all so scary, not really knowing what is causing this. Sometimes feel so overwhelmed and helpless. These posts and forums have helped alot. Wishing you all the best!!!

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This is great news that you found your way here and that you are giving gluten-free a try. It isn't necessarily a straight line to improvement. Give it some time. I hope you do research and see other stories of people like me who have found this to be their solution and are in full remission and on no medication. We all start in different places and our path to health is different. It may or may not help, but it's worth trying. I would love to hear your stories as you give this a try, whether it is helping or not. Buffie, who hasn't found her way to this thread yet, also started a gluten-free diet this week.

Because of this diet, and of course needing to eat very low sodium, I prefer to eat at home. Though, when I have to eat out, I get on the restaurant's website first to figure out what I'm going to order, and/or get my questions lined up. Most popular restaurants have the gluten-free topic addressed in their FAQ section of their website. Or you can google your question, such as "Do the french fries at Johnny Rockets contain gluten?" Usually, your answer pops right up...google is an amazing help. By the way, some restaurants coat their fries in flour and/or fry them in the same fryer with onion rings or other things with gluten. (Not that I'm a huge french fry eater -- I indulge occasionally! I'm just using this as an example.) You have to ask questions, and ask them to talk to the chef or check the ingredients on the package. It's a hassle and makes you a high-maintenance pain in the butt, but worth the trouble if it improves your health. Depending on where you live, restaurants in larger cities are getting pretty hip to the gluten-free thing. No matter what, I take the responsibility to ask all the questions and don't assume wait staff and cooks will know about this.

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RiverHipster, I'm looking at the list of "no-no" foods for A+ blood type, and I think the only food group left is "chocolate." Oh boy!

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