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TOPIC: Gluten!!!!!!!

Gluten!!!!!!! 6 years 11 months ago #31323

  • eklein
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Well april if you've been making them for a while you missed an opportunity to win a big prize - I got the recipe from a recent Parade magazine, they were a top prize winner for cookies. It looked so interesting, how could it make a cookie with just those ingredients. I'm not gluten free, I just thought the recipe looked great and it was.

I might experiment adding some rice flour to the mix.

BTW, they do spread out so leave room.
Erica
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Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Gluten!!!!!!! 6 years 11 months ago #31362

  • alicein
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They are a staple in gluten free circles. :) The trick is many people with food allergies can't have peanuts - but we could. :) This is my recipe -

1 cup creamy peanut butter
1/2 cup granulated sugar
1/2 cup packed light-brown sugar
1/2 cup semisweet chocolate chips
1 large egg, beaten
1 teaspoon vanilla extract (optional)


For me, that is too much sugar so I always cut it back a little but had to be careful because it's also what helps hold it all together (with the egg). I might try half xylitol and half sugar sometime and see what that does. The chocolate chips can be left out. I use the dark chocolate chips and really like it.

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Gluten!!!!!!! 6 years 11 months ago #31363

  • Sandi
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Items on my grocery list.

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Gluten!!!!!!! 6 years 11 months ago #31583

  • Katsim
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I'm sticking to the gluten free and managing ok for the time being. Had some of my favourite chocolate yesterday though for the first time in a while and I felt pretty lousy for about 8 hours afterwards :-( I'm trying to think in terms of "healing my gut". What will heal me & what won't - I'm trying to avoid processed foods & too much sugar whilst I'm doing everything else. Clearly failed with the chocolate though & will have to find a new fave.

Just an idea for those talking about recipes - have you heard of Pinterest? It's a site/app that allows you to pin favourites from the Internet, follow other people's boards and "pin" other people's discoveries. It's free & easy to search - I'm getting quite a collection of gluten free recipes and paleo style recipes from there. There's a fab one that's an avocado key lime pie with an almond and date base. I'm not paleo but whilst I'm trying to cut out refined sugar there are some lovely dessert ideas so I don't feel I'm missing out. Even hubby likes them and he's a donut lover!! :-)
Lowest count 1. Highest count 207 (ivig) Indium scan showed predominantly splenic destruction. No meds currently, just seeing how things go.

"Life isn't about waiting for the storm to pass - it's about learning to dance in the rain".

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Gluten!!!!!!! 6 years 7 months ago #34200

  • kaluebke
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Update! I've been gluten free for about 7months and as much as I love my wheat it has been the best decision I've ever made. My levels are sitting high to where I don't have any paranoia about my numbers dropping. In fact I cheated once and that was the only time my numbers have gone down instead of higher. My thought is I'd rather feel good than have a sandwich or pasta. My Hemo has been very impressed with my change and now encourages the gluten free diet for some of her other patients to try (as of date the 2 other patients that have adapted the diet are having the same trend as me). After doing more research I am a firm believer that ITP can be fixed with this lifestyle change! I would recommend to anyone, I wish you could see the amazing improvements for yourself!!!!

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Gluten!!!!!!! 6 years 6 months ago #35384

  • CindyAnn
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I am doing the "15 day ReBoot" from Joe Cross' film "Fat Sick and Nearly Dead", it is a juice diet of 80% Veggies and 20% Fruit and no gluten. At about day 10 I tried and experiment and ate a couple of biscuits - well I reacted to it. So, I believe I need to go gluten free. I spoke with my primary care physician and we will try an experiment again after about a month of no gluten and see what happens. So far my platelets have gone from 40K to 30K but I think it will take time. I have to say, I feel better and sleep much better juicing so even if it does not help with my platelets if it helps my overall health I have to do it B)

Cindy Ann

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Gluten!!!!!!! 6 years 6 months ago #35402

  • NatalieM
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I have been gluten free for about a month now. I started it after reading a very interesting book relating autoimmune disorders to gluten. Simultaenously, my counts began to drop at around the same time, so I thought it wouldn't hurt to try something new in an attempt to heal my gut. I have always had digestive issues and since going gluten free and cutting out all artificial sweetners, such as aspartame from diet coke, I have noticed an IMMENSE difference in my overall feeling and my diet woes. I have not had any upset stomach or headaches since cutting it out. I definitely do NOT miss it as of right now and I am hoping that it will have a positive impact on my platelet issues, too! It never hurts to try! There is just too much research out there to ignore it! :)
*Here's to high platelets!*

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Gluten!!!!!!! 6 years 6 months ago #35433

  • John
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You don't have to have a proven gluten allergy like Celiacs to have a gluten sensitivity. I think many people have the sensitivity and don't realize it.


In my opinion, if you have an autoimmune condition of any kind, I think you should consider being gluten free. Its a no brainer for me. And it is not as scary as you might first think. I have seen big changes in grocery aisles in the last two years. A little perseverance in the kitchen can be a big help.

Now if you want to go to the next level in your quest to manage ITP, look at homeopathy. I know the skeptics will be all over that statement, but from personal experience, this is where you have to go. GL.

cheers,

john

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Gluten!!!!!!! 6 years 5 months ago #36142

  • SOwens
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Hi,

I'm new, and joined the group because I had ITP when I was 13 and was one of the people who got in trouble after taking an antibiotic called chloramphenicol. About four months later my eye hemorrhaged and it was discovered that I had a low platelet count. Prednisone did not work and gave me Cushings syndrome, and when my platelet count got to 4,000, they gave me platelets and then did a splenectomy, which was a brand new idea back in 1967. Later, ironically, my husband's cousin developed ITP. Years later, my daughter was born with developmental delays and problems in her immune system, but those issues turned around at age four on a gluten free diet, and I went gluten free at the same time. I was clearly better globally. Last year we learned my daughter has the haplotype for celiac disease, so I wouldn't be surprised if that was true of me though I haven't been tested. My father had dementia that reversed to an earlier stage on a gluten free diet. So, roll forward the clock many years and I got into autism research which I've done for 18 years. Many of those with autism get better on a gluten free diet, too. About eight years ago, I started studying the biological effects of oxalate in autism, and you can read the study we published on this in the European Journal of Paediatric Neurology. Since then, I have found high oxalate levels in a lot of other conditions that have never been tested because the wrong information got to our doctors that someone would get kidney stones before oxalate could effect the rest of their body. I don't think that can be supported any longer by the data. Anyway, today someone else on my listserve about oxalate started a thread about ITP, so I thought it would be nice to see what would happen to the same sort of question here. My group has 9000 people on it who are lowering dietary oxalate, or using B6 and magnesium to bring down oxalate levels. The one thing no doctor never asked of me when I got ITP was what I was eating, and I was coming home from school and preparing myself a box of spinach eveyday, which is an extremely high oxalate food. Chloramphenicol, which was associated with blood dyscrasias back then which were often fatal, is now noted to kill the one bacteria that degrades oxalate so we don't absorb oxalate that we eat. I've wondered if perhaps my blood issues developed after I had been taking in a lot of oxalate over those four months, building up oxalate in my bone marrow, potentially. I just wanted to throw out the idea that maybe some of you might want to see if this is relevant and find out if your diet is high or low in oxalate or if that has anything to do with your platelet count going up or down. Another curiosity is that a lot of people with oxalate issues see improvements before they even found our listserve by going gluten free first. If you look on google for an article called "Mechanisms Behind a Leaky Gut" on the web, you will findthe mechanisms about gluten's part that I wonder about. Oxalate is something that could be objectively tested in urine and blood, and if anyone here is interested in seeing if that is relevant in your case, let me know, and I'll tell you where you could get tested. The cousin-in-law I mentioned, twenty years after she had ITP, had bariatric surgery which is known to drastically increase your absorption of oxalate, and she had strange things start happening to her after this surgery, like breaking one leg and then the other, and changes in her psychology, and then she died out of the blue of something like a heart attack and she was barely out of her thirties. I will always wonder if an unrealized risk from oxalate led her into trouble. I am just here with this history hoping that maybe lowering oxalate might help some of you here improve your counts instead of having it plummet like I wonder if I did by eating all that spinach. Another source of information is www.lowoxalate.info which will tell you which foods are high in oxalate. I hope this is interesting to someone, but I'll wait and see if someone replies to this because it strikes a cord.

Best wishes, Susan

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Gluten!!!!!!! 6 years 5 months ago #36146

  • SOwens
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Sandi,

I don't know if you saw my post today, but people with lichen sclerosis and Hashimotos both tend to be high in oxalate, too. Literally hundreds of people are referred to our oxalate site every month because the word of this connection is getting out. I had nothing to do with it...people found us not the reverse! Anyway, one of the things I'm looking at is genetic risks for being high oxalate, too, which I hope to figure out using the new 23 and me genetics test. It is often that we find family members who share oxalate problems, but it doesn't present in the same way. We're trying to learn why that is by looking at genetics, too. If you've had success with gluten free, checking out oxalate might help as well.

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Gluten!!!!!!! 6 years 5 months ago #36372

  • John
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www.huffingtonpost.com/dr-mark-hyman/wheat-gluten_b_1274872.html

I found the gut related comments very relevant. I emphasize the final line of this section highlighted in red.

Gluten and Gut Inflammation: The Second Problem

But there are two ways other than celiac disease in which wheat appears to be a problem.

The second way that gluten causes inflammation is through a low-grade autoimmune reaction to gluten. Your immune system creates low-level antibodies to gluten, but doesn't create full-blown celiac disease. In fact, 7 percent of the population, 21 million, have these anti-gliadin antibodies. These antibodies were also found in 18 percent of people with autism and 20 percent of those with schizophrenia.

A major study in the Journal of the American Medical Association reported that hidden gluten sensitivity (elevated antibodies without full-blown celiac disease) was shown to increase risk of death by 35 to 75 percent, mostly by causing heart disease and cancer.[4] Just by this mechanism alone, over 20 million Americans are at risk for heart attack, obesity, cancer and death.

How does eating gluten cause inflammation, heart disease, obesity, diabetes and cancer?

Most of the increased risk occurs when gluten triggers inflammation that spreads like a fire throughout your whole body. It damages the gut lining. Then all the bugs and partially-digested food particles inside your intestine get across the gut barrier and are exposed your immune system, 60 percent of which lies right under the surface of the one cell thick layer of cells lining your gut or small intestine. If you spread out the lining of your gut, it would equal the surface area of a tennis court. Your immune system starts attacking these foreign proteins, leading to systemic inflammation that then causes heart disease, dementia, cancer, diabetes and more.

Dr. Alessio Fasano, a celiac expert from the University of Maryland School of Medicine, discovered a protein made in the intestine called "zonulin" that is increased by exposure to gluten.[5] Zonulin breaks up the tight junctions or cement between the intestinal cells that normally protect your immune system from bugs and foreign proteins in food leaking across the intestinal barrier. If you have a "leaky gut," you will get inflammation throughout your whole body and a whole list of symptoms and diseases.

Why is there an increase in disease from gluten in the last 50 years?

It is because, as I described earlier, the dwarf wheat grown in this country has changed the quality and type of gluten proteins in wheat, creating much higher gluten content and many more of the gluten proteins that cause celiac disease and autoimmune antibodies.

Combine that with the damage our guts have suffered from our diet, environment, lifestyle and medication use, and you have the perfect storm for gluten intolerance. This super gluten crosses our leaky guts and gets exposed to our immune system. Our immune system reacts as if gluten was something foreign, and sets off the fires of inflammation in an attempt to eliminate it. However, this inflammation is not selective, so it begins to attack our cells -- leading to diabesity and other inflammatory diseases.

Damage to the gastrointestinal tract from overuse of antibiotics, anti-inflammatory drugs like Advil or Aleve and acid-blocking drugs like Prilosec or Nexium, combined with our low-fiber, high-sugar diet, leads to the development of celiac disease and gluten intolerance or sensitivity and the resultant inflammation. That is why elimination of gluten and food allergens or sensitivities can be a powerful way to prevent and reverse diabesity and many other chronic diseases.

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Gluten!!!!!!! 6 years 1 month ago #39072

  • Sandi
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I am so convinced that gluten plays a part in autoimmune disorders. I really need to get back to it. I want to start with a three to seven day juice cleanse.

My daughter who has Graves went gluten free for a few months. She was feeling better and for the first winter in 12 years, did not have hands covered in eczema. She was stunned. Due to time constraints, she fell off the wagon and is having a hard time getting back to it.

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Gluten!!!!!!! 6 years 1 month ago #39226

  • John
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Hi Sandi,

I am still on track and gluten free. Christmas is a bad time though and there are too many fresh baked temptations available. When I bend the rules and have some flour baked goods, the consequent stomach bloating and tension in my gut is so obvious.

Changing your diet or going gluten free is a big effort and the commitment can only come from within. You choose the foods you eat and everyone knows that certain foods will make you feel bad (eg. fast food) and for some like me, gluten is just as bad. So why eat?

I have read lately a number of articles in magazines and newspaper claiming the gluten free movement is just a "fad" or "craze", that there's no substance to it. I think in coming years there will be a major "aha" in the medical community when they finally get it.

I am doing really well these days and the homeopathy that April prescribed for me last spring has done wonders. I feel like I did before things went really bad back in 2011. I feel normal, physically motivated and glad to not be thinking about my ITP. I have a medical due early this year and I'll get a platelet count then and will update.

Take care.

cheers,

john

PS My daughter tried going gluten free 1 year ago and has stuck with it. She is 13 years old and lost 10 lbs within months. She eats better and we do our best to find gluten free eating and we eat a lot better for it. She definitely has a gluten sensitivity and she doesn't need me, a doctor, or anyone else to tell what she needs to do about it. I also see signs that she may be a candidate for ITP one day so we need to watch carefully.

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Gluten!!!!!!! 6 years 1 month ago #39230

  • Sandi
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I am the biggest skeptic in the world so I don't believe in much, but having been gluten free myself and listening to my daughter, I know it's true.

My biggest problem is my husband. He does not believe that food of any kind can be harmful, so he cooks what he likes (it is good) even though it has gluten. He will eat what I make too, but doesn't want it all the time. We end up with two different kinds of food cooked and it gets expensive and goes to waste. I don't know how to fix that problem.

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Gluten!!!!!!! 6 years 1 month ago #39231

  • John
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Sandi,

I typically do most of the cooking. But my wife has been very understanding when I had to go gluten free. Then when our daughter decided that was the way to go, we doubled up the commitment to have family gluten free days several times a week. There are ways around it. It takes a commitment and effort and its worth it.

Take a simple meal like homemade mac & cheese. Not the most nutritional meal, but it can be very easily converted to gluten free. Substitute the bread crumbs with gluten free ones and use gluten free macaroni pasta. The rice based ones are by far the best.

The other way to ease into gluten free eating is cut out the sandwiches first and foremost and eat simply: lots of fruit, veg, beans,nuts and meats. Oatmeal in the mornings or a rolled oat cereal with berries/yogourt, or just eggs. Rice based pastas can be very good and I also find cooking risotto (italian rice) is a fantastic meal if you have a taste for it. Soups are another good meal that we enjoy as a family.

You gotta be creative otherwise you will get into a rut trying to stay gluten free.

cheers,

john

PS Our favorite gluten free treat are macaroons.

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Gluten!!!!!!! 6 years 1 month ago #39233

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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John:

I have a lot of gluten free cook books and made quite a bit of things, but I also cut out nightshades which also really affect me....like within hours of eating them. If I eat or drink tomatoes, my muscles feel like they are on fire. They trigger a huge amount of inflammation. Anyway, my husband makes his own spaghetti sauce (handed down from his Mom) and he can't imagine that everyone else can't love it too. We ran into so many situations like that and I ended up giving up. It's not that he isn't supportive. He just absolutely does not believe it. His thinking is that if you can't enjoy the things you like, why live? I keep trying to tell him that life isn't worth living if you are miserable.

He does believe that people can be allergic to gluten. He has a friend whose daughter has Celiac's. He is all for their diet change but cannot fathom that a sensitivity is possible.

I don't know what the answer is, but I have to do something. I'm hitting bottom again.

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Gluten!!!!!!! 6 years 1 month ago #39243

  • firkins
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Following this thread and just want to send waves of support Sandi's way that she feels better and can find the key.

I'm following not for my ITP daughter but for my other daughter and me. She had to go gluten free -- not celiac but had gut wrenching pain and constipation - finally so desperate gave up gluten and, voila, magic! Within four days (four icky days of basically detoxing) she was almost 100% normal. I've gave it up to support her and have found my arthritis (not RA) is much better. I really wish I could get my ITP daughter (age 14) to give up gluten but that isn't going to happen right now. Just so much has happened to her body in the past few years and she, sadly, loves her carbs….

I have found great and really easy recipes in Clean EAting. YOu can just go to their website and type in various ingredients (say what's in your fridge!) and a recipe will pop up. Most of their recipes are gluten free but you can also screen for that in the search engine. Been very helpful to just make food interesting and the recipes are quick and easy. It does feel like we are now eating the way I grew up -- the food my mom and aunt ate: a lean protein, lots of veggies, rice or quinoa or roasted veggies. For some reason it's not feeling old to us. Clean Eating helps there. Good luck everyone!

We saw a GI doctor lately for my daughter and I was surprised that she said the medical field is now really recognizing that there is gluten sensitivity -- not just celiac or nothing. It was encouraging to hear.
Firkins (mom of Zoe (15) and Mia (13). Mia has ITP. Diagnosed 3/2012.

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Gluten!!!!!!! 6 years 1 month ago #39244

  • firkins
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ps our favorite gluten free indulgence is the gluten free pecan pie from Whole Foods. Not cheap but omg so worth it.
Firkins (mom of Zoe (15) and Mia (13). Mia has ITP. Diagnosed 3/2012.

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Gluten!!!!!!! 6 years 1 month ago #39247

  • Sandi
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Thanks for the website. I just might use that!

I made my husband sound like a total ogre. This is more specific. His Mom passed away two years ago. The only thing my husband really wanted was her recipes. According to him, no one was a better cook than his Mom and for many years, he prided himself on making her stuffing, her sauce, her potato salad, etc....Passing her recipes on is very important to him and he wants our kids to learn too.

He always loved her pistachio cake and she made one for his birthday the last year she was alive. I found that recipe and have continued to make it for him on his birthday. I guess I'd have to really play with it to make it gluten free. The point is that cooking has always been a special thing for him, especially his Mother's recipes. When I mention being gluten free, he gets really hurt that I don't want his food. To him, food is good, it is memories, it is family and it can't possibly do harm.

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Gluten!!!!!!! 6 years 1 month ago #39273

  • John
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Here is a great recipe which we tried for the first time tonight. It took some time to shop for the ingredients and prepare it. The family loved it and it was gluten free. I used rib steak which I thinly cut for the beef and substituted soy sauce with Tamari Soy Sauce (gluten free).

allrecipes.co.uk/recipe/5608/chinese-crispy-beef-stir-fry.aspx

We don't cook meals like this every night. Last night was omelettes and the night before carrot soup. Gluten free of course.

cheers,

john

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Gluten!!!!!!! 6 years 1 month ago #39278

  • MommaBee
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We are gluten free at my house as well, my toddler is celiac and my other 2 kids are being scoped Friday to see if they are as well... We are fairly new to it (10months now),but the biggest thing I am now realizing us that most everything I used to make I still can...it takes a few "tries" of most recipees to figure out how much adjustment with gluten free flour (as it tends in my experience to be a bit thicker),but once I realized we could eat mostly the same I realized it wasn't as bad as I thought for adapting... There is gluten free soya and most everything else you cook/bake with as long as you check... So perhaps Sandi you could have your husband try that with some of his recipees...I sure can relate to the saddnessnof changing from family favorites! Funny what a big role food plays in our family events and memories!!!

I will admit though it is hard not to indulge in gluten when not with my toddler and when eating out! Sure crave "real" pasta etc!!!

Hasn't helped my health so far but I think that my health issues stem from a different issue and not the gluten...

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Gluten!!!!!!! 6 years 1 month ago #39279

  • Sandi
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:woohoo: A bit thicker? I needed a putty knife to scrape the dough off of everything!

I found that I could pretty much still enjoy everything, but I never did find a bread that didn't make me feel sick, even the bread I made.

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Gluten!!!!!!! 6 years 1 month ago #39280

  • MommaBee
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Tis true!! Bread is not really replicatable! Also pizza crust!

And I did try a lot of different flour blends... I really like kinnickinick flour blend as it isn't as thick as the others and is closest I have found to regular... But I know brand availability may vary too! Definitely some brands in could not use in my regular recipes!! But my luck was probably getting my husband to think of the recipes alteration as a true challenge so he does more cooking then ever now :),maybe part of why I don't find it as bad!!

Also, as I am sure you can attest, nothing lasts as long!!! That sucks!

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Gluten!!!!!!! 6 years 1 month ago #39289

  • eklein
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For some of you maybe, like me, the part of wheat that could be bothersome is fructans not gluten. Maybe firkins, when you said your daughter had relief from constipation after giving up gluten - consider fructans. Look at giving up onions too - could be amazing.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Gluten!!!!!!! 6 years 1 month ago #39395

  • John
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I found one of those BS articles on the gluten craze. Maclean's is a very well known Canadian wrag.

www2.macleans.ca/2013/09/10/gone-gluten-free/

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Gluten!!!!!!! 6 years 1 month ago #39398

  • Sandi
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I think anyone who does not have health issues will not believe it. You also have to actually try it to see a benefit, so I can understand the skepticism. I would probably be the same way if I hadn't tried it and noticed improvement.

I have read too many positive stories to just ignore it, and that guy should really speak to some people before shooting off his big mouth. I have a friend with Lupus who is going gluten free now and is feeling much better.
The following user(s) said Thank You: Mwalkernc

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Gluten!!!!!!! 6 years 1 month ago #39399

  • John
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I think anyone who does not have health issues will not believe it. You also have to actually try it to see a benefit, so I can understand the skepticism. I would probably be the same way if I hadn't tried it and noticed improvement.


Absolutely true. In my family everyone has tried going gluten free. My son and wife didn't notice any difference. My daughter noticed the big change immediately.

Anyway, like I said in an earlier post, I've seen these types of articles and they do a good job of misinforming.

Sandi, I went gluten free (when on that really strict diet) approaching 3 years ago now. For my health it was one of the best things I did. I'd like to find a way of get around having to give up flour baked goods etc., but for now I stick with it.

Have you tried any homeopathy yet? I talked about gluten free back in 2011 which is some time ago. You need to check out homeopathy. Remember that skepticism towards being gluten-free? Well I bet your skepticism will change if you check it out. Take care.

cheers,

john

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Gluten!!!!!!! 6 years 1 month ago #39400

  • Sandi
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John wrote: Remember that skepticism towards being gluten-free? Well I bet your skepticism will change if you check it out. Take care.



I don't think I'm quite ready to go that far. I can at least understand the theory behind gluten. Homeopathy seems a bit far-fetched to me.
The following user(s) said Thank You: eklein

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Gluten!!!!!!! 6 years 1 month ago #39403

  • firkins
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Erica -- thanks so much for your post. I'm definitely going to check into that. Aat least read up on it.

My family (of origin) rolls their eyes at me when I say Zoe and I are not eating gluten. It bugs me, but I know the gluten thing is such a fad. Still - let them roll their eyes! Zoe is so much healthier and out of PAIN and my arthritis (and farts!!) are better. Whenever I cheat, my arthritis acts up. I've tried many times and it's amazing the link. I've also noticed I'm thinking more clearly. I had attributed that to getting over a very bad concussion I got a year ago -- and maybe that is so -- but I wonder if it's the gluten. Less foggy headed. And I've been feeling foggy for years, long before the concussion…

Anyway -- be well all.
Firkins (mom of Zoe (15) and Mia (13). Mia has ITP. Diagnosed 3/2012.

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Gluten!!!!!!! 6 years 1 month ago #39409

  • John
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I don't think I'm quite ready to go that far. I can at least understand the theory behind gluten. Homeopathy seems a bit far-fetched to me.


I know. I get it. I've been there too. In the last 3 years I've done the strict diet, gluten free, Reiki, acupuncture (for physio rehab) and homeopathy. I don't regret doing any one of these things. They all helped me.

Last winter I had a major setback after a flu infection (H1N1?). So I tried homeopathy. I had nothing to lose. Today I hardly think much about my ITP condition.

cheers,

john

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