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glutenjunkie

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About glutenjunkie

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  1. That was a ton of great info- thank you! I have the white tongue, and I get unexplained rashes all over, quite frequently. They put me on Vistaril (like Benadryl) for it, but I despise medication that makes me feel sleepy or groggy, so I've stopped it and try and ride out the rashes. My daughter still gets exactly what you described, raised, crusty patches of skin that drive her nuts. I use bendryl cream because I'm unable to find the cause. (she is gluten-free) I know I need to have a food allergy panel done on her. I tried once with her ped last year and got back her titers instead.. so that didn't help with allergens.

    I will do some searching for candida. Again, thank you!

    There are a lot of people here who have this problem. No matter what, I am certain you can find support and info already in old posts if you do a search. There are various sites in addition that address anti systemic yeast protocols that can easily tie in with going off gluten.

    What some do is go off grains for a while as well of course as sugars and heavy starch like potatoes. Taking pro-biotics and eating lots of veggies and, if you can handle them, garlic and onions, is a given.

    Caprylic acid is good against candida assuming you can handle eating coconut. Pao de Arco is a good anti candida herbal remedy, as are things like olive leaf, black walnut and oregano oil.

    Its helpful to be a meat eater since most of the grains will be a no no for a while. Eventually you should be able to tolerate eating some rice etc. but nothing bleached--and not in great quantities. Ditto with fruits, keep quantities down and emphasize things like berries, esp. frozen ones. And of course stay away from any and all sugars. Use stevia instead.

    If you are lactose intolerant (as many here are) you might want to try making your own yogurt and ferment it 24 hours. It gets rid of all the lactose by doing that and is a great source of probiotics as well of course as something nice you can eat. It does not get rid of casein however of course. Some make fermented cabbage (using probiotics as a starter) instead.

    Its good to try these anti candida protocols, however if they don't work consider investigating other possible causes for your distress as well. For instance, for me ironically what I thought was systemic candida was actually salicylic acid sensitivity (like what is in aspirin), so go figure. It creates itchy, crusty eczema like responses as well as a white tongue--plus it also negatively affects my nervous system, causes swelling and makes it so I can't sleep at night unless I take benedryl for the allergic like reaction.

    Salicylic acid is a component of an awful lot of things since it acts as a protective barrier for many plants. Some of us are unfortunately are very sensitive to it. I have to avoid most fruits, most spices and many vegetables. The fruits I can have I have to peel. Ditto with many of the veggies... I still can't handle much sugar, and even then only rarely--which apparently is typical for this condition. Just goes to show how we are all different and how one condition can seem like another...

    Bea


  2. I know how hard it is, to impose the diet on your child. My 5 year old daughter has been gluten free since she was 2 and while it's helped her IMMENSELY, sometimes I still feel really awful about that. She has adjusted well. She knows gluten makes her feel terrible and avoids it herself. But, it still makes me sad for her, especially at birthday parties where everyone is getting a slice of the bday cake and I'm pulling out a cupcake I made at home and made SURE that frosting matched...

    It gets easier, for you and for the kids. Honest :)


  3. Take a deep breath. Yes it is too much and no you can't learn it all ~ at least right away. I am 11 months into this and finally feeling like I have a handle on it. I started out in the beginning shopping with my Gluten Free Grocery Shopping Guide and a list of ingredient definitions. Shopping took forever. And cooking? I am 60 and have always hated to cook. One day I woke up and realized that cooking wasn't the odious chore it once was and that I had gone shopping and left my Shopping Guide in the car! Please give it time. Take time to grieve your loss because and food and the choices you now have to make are a loss - and know that one day it will all come to you. Honest.

    I'm 33 and NEVER been one to cook. I hate it. Raw meat grosses me out and I just can't do it. Thankfully, my husband picked up on that one for me. But lately, I've started baking gluten free and I'm actually starting to enjoy it. Quite a few bombs so far- because apparently baking isn't easy lol- but I made a gluten-free cake on Valentine's day for my daughter that was actually one of the best cakes I've ever had. (Bob's Red Mills Vanilla cake mix- I cheated lol).


  4. My father was celiac before me, and when I was diagnosed, I was kind of in the same boat as you. Felt like I had at least some idea about what to do, what I could eat, what it would be like, you know?

    2 days into the diet, wow did I feel sick! Lots of gastro pain, yeah. tired, icky, grouchy...all sorts of fun stuff.

    For me, it turned out to be two things.

    1) I turned out to have mild food allergies/intolerances that I had never realized. I didn't get hives, but it DID give me the stomach issues. I never had stomach issues like that at ALL when I was eating gluten. Not entirely sure why it worked this way, but ever since going gluten free, these mild allergies (I was tested for them) get me very sick in the gut, tired, dizzy, all sorts of fun stuff.

    2) I ended up being more sensitive to gluten than my father is. Gluten free products that he can eat just fine actually give me glutening symptoms. Since then, my daughter and brother have been diagnosed as well. My brother can eat everything my father can. My daughter can't. She, too, gets sick on less gluten than my father does. She can have more than I can, though. The whole family dynamic, with all of us together and STILL having different foods that are safe, has really opened my eyes to what a variation there can be in gluten free food and gluten free sensitivity to it, as well.

    If that's the case for you? Dropping most processed foods for plain veggies, fruits, meats, etc... might help a little bit.

    Although to be honest, there are often people who get symptoms that don't correspond to what the official lists of symptoms are in the medical comunity. Perhaps some of the folks here have had gluten withdrawal that corresponds to yours, too?

    I joined here with high hopes that I would find others like me, so far so good. I joined a couple forums before this one, but they were fairly inactive and vague. I have found this forum to be very helpful and I only joined this afternoon.

    My daughter was also never tested for Celiacs. She was diagnoses with Autism just before age 2 and her ped at the time suggested I try the gluten free diet with her. I threw everything gluten out that day and replaced with gluten-free products. Now, 3 years later, when she does have a gluten infraction, we KNOW. Even if it's prolonged skin exposure (band aides, the day she filled the sink with cat food *laced with gluten* and flooded the bathroom and was covered in it). With her, when she's had gluten, I give her a small dose of activated charcoal and it absorbs most of it. I'm on a lot of meds throughout the day and that's not an option for me. I am, however, VERY careful about gluten being anywhere near either of us.

    My parents- while I love them and they are AMAZING with my daughter, have accidentally glutened her several times over the last couple years and mostly before we discovered activated charcoal. She ate a slice of bread at their house one day and for an entire month, she was in agony. She screamed and hurt herself. It was horrible.

    Looking back at that and how I feel right now, just 5 days in... I can't help but think- gluten is evil. It doesn't seem right to me that a FOOD could cause a person such distress or that stopping the food could make one so sick. I've quit smoking- nothing like this. I've quit caffeine, again, nothing like this. The cravings were stronger for smoking and caffeine but not the physical symptoms. The last 5 days have been fairly horrible and I know I still have a fair amount of time to rid my body of old gluten. Any tips on speeding up the gluten detox process?


  5. I remember in my early gluten-free days, I experienced lower abdominal cramping and after eating I could "feel" what I ate moving along my digestive tract.

    I also had a lot of fatigue--I would say that your system is adapting. In some of is it takes a bit longer.

    Thank you. I NEEDED to hear that so badly. This evening I had very little appetite, ate half a pork chop, a small potato and some green beans and I've drank 48oz of water in the last 2 hours. The cramps have eased up. I am also strongly considering taking the probiotics I bought for my daughter (gluten free for 3 years, age 5) but I'm on a lot of medication for anxiety and am slightly worried about interactions. I don't know if a pharmacist will or can vouch for the safety of probitics and meds....

    I wish I lived somewhere where access to knowledgeable medical personnel was more readily available. Boo Maine lol.


  6. Hmmm. I presume you have had other testing to rule out other causes of illness? There are blood tests that she can start with and the biopsy which is NO inconvenience at all...When I first went gluten-free (and I am a blood work AND biopsy confirmed celiac with no GI symptoms but mostly neurological) I felt like I was getting the WORST flu ever. Wow. If I felt like death on gluten, it was death-plus gluten free. Apparently, there CAN be withdrawal effects. I am now 5 months in, putting on weight, my vitamin levels are getting better and many days I still feel like crap. But many days I feel better, so I'll take it.

    If I was in your shoes, I would want the testing. Unfortunately, it CAN come back negative and you still may be helped with the gluten-free diet, this has happened to MANY people here. However, I would still want to start there. If you can get a definite diagnosis, it may make the whole gluten-free thing easier. Again, because I was such a strange case, I don't think I would have ever gone this route if the neurologist I saw for my neuropathy didn't run is as part of a ton of autoimmune tests to rule stuff out. Celiac was the last thing they were expecting. So, it does make it a little easier to not question why am I doing this when my guts seem just fine...

    Good luck! If you have classic GI and other celiac symptoms and really can't be tested by the Dr.,give the diet some time and you may be surprised.

    I think I'm going to switch doctors. I've asked to be tested for Celiacs and systemic yeast for over a year and all they keep saying is to try the diet. If I have systemic yeast, just the gluten free diet isn't going to take care of it.

    I do have probiotics that I got for my daughter and I think I'm going to start taking them tomorrow and maybe on Monday I will look for a new doctor who knows a bit more about Celiacs, gluten and systemic yeast.

    Thanks :)


  7. You are just starting on the gluten-free diet. Your instestinal flora will adjust to gluten-free over time. It wouldn't be a bad idea to take some probiotics though to help with the adjustment.

    I have chewable acidophilus with bifidus tablets that are gluten free, I've just been feeling so awful that I'm scared to death to do anything else. Maybe I'll just suck it up and take one in the morning.


  8. It takes a lot of practice and unfortunately, quite a few mistakes. I haven't found anywhere to eat out that you can guarantee to be gluten free in my area. In the beginning, making your own foods or making sure labels say GLUTEN FREE and sticking to those products until you know all the hidden gluten is a good idea. I think I have a list of hidden gluten somewhere, let me see if I can find it...

    What is Gluten?

    Q. What is gluten exactly?

    A. Gluten is the protein found in wheat, oats, barley and rye.

    Q. What are the most common foods that contain gluten

    A. The common foods are: bread, cereal, pasta, cake, donuts, flour, some alcohol, bouillon, some vinegar and sauce thickeners. It is also very common in medicines, vitamins, lotions and lip balms.

    Q. Does it matter if the flour is organic?

    A. No. Gluten is gluten, organic or not, and is therefore not allowed.

    Q. Do oats really contain gluten?

    A. Yes and no. Oats themselves do not contain gluten but are almost always grown with and/or processed with wheat, therefore are tainted with gluten. Bob


  9. It runs in my family and rather than test me- she suggested I just try the diet. Well, I'm trying it *5 days in* I feel AWFUL. I asked a second doctor yesterday to test and she said the same thing and about what an inconvenience for me test would be (apparently a biopsy of my intestine).

    Is this normal or is it time I find an entirely new practice?


  10. **This is casein (dairy free) too, just ignore the dairy part if that isn't an issue**

    Gluten-free Casein-free Diet on a Budget: Meal Plans

    The following recipes make limited use of specialty gluten-, casein- and soy-free items like expensive flours and other substitute ingredients. Most everything can be purchased at your local grocery store and these recipes are meant so that everyone in the house can eat it rather than needing to cook two meals.

    Breakfast

    * Bacon Potatoes

    * Cereal with milk

    * Cereal, Cream of rice

    * Donuts/donut holes

    * Eggs, fried, scrambled, poached

    * Eggs, Scrambled with avocado

    * French toast

    * Fruit

    * Grits

    * Hash Brown Casserole

    * Hash Browns

    * Hash with poached eggs (corned beef or ham)

    * Hominy

    * Meat


  11. My daughter has been gluten free for 3 years (she's 5). My husband and I have been VERY careful about cross contamination because ANY amount negatively affects her. She has had her own cupboard that NOTHING with gluten goes into. Primarily, the only foods with gluten in our house have been our bread and our snacks. We eat gluten free meals because we eat with her.

    I went gluten free 5 days ago. So I'm living out of her cupboard and started baking gluten-free for her and I. Bought all new baking supplies *pans, muffin tins, rolling pin, utensils* We never really baked before, we just bought the snacks, but with two of us now, it will be MUCH cheaper to bake.

    I am a HUGE fan of Bob's Red Mills products. For me- not being a baker- the pre-mixes have been a life saver. They actually TASTE good. On their website, you can order bundles of either the mixes (cake, muffins, pancakes, bread, brownies, etc..) or you can get a bundle of flours and make your own mixes- I'm going to make the step up to making my own soon.

    Hits in our house-

    Vans Waffles

    Ian Chicken Nuggets

    Natures Path Crisped Rice

    Enjoy Life granola and granola bars

    Enviro kids bars and cereals

    She eats EnerG bread, but I think it tastes like vomit.


  12. Are you saying you ate gluten and then got abdominal pain? Or you have been off gluten and having pain?

    I get terrible pain (along with gas, bloating, many trips to bathroom), but it was the pain that finally made me go to the doc. I thought it was my gallbladder actually.

    I definitely have NOT had any gluten for 5 days. My daughter is gluten free and has been for 3 years, so I know the "rules" of being gluten free. This is pain 5 days into just one day STOPPING any gluten ingestion. Since I posted, I THINK it kind of feels like insane gas. The pain moves around a bit and I've been burping. Not relieving the intestinal cramps though...


  13. I have a family history of Celiac. I asked to be tested and my doctor (old doctor) suggested I just try the diet. That was last year. On Tuesday, I realized I hadn't eaten gluten and decided to give it a try. Today is Saturday and it's been a rough few days- today being the worst. I have some pretty intense cramping/abdominal pain. Gas maybe? IDK. I feel irritable, moody, tired with bouts of feeling really antsy. So far, from various sites and forums, I have found all of my gluten symptoms under withdrawals others have felt- but not the cramping/abdominal pain and I'm slightly concerned. My new doctor is entirely clueless about gluten (I was there yesterday).

    Anyone have this as well? or advice? anything?

    ~L