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About Dejibo

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  1. My daughter discovered charcoal tabs (gluten-free) helped her greatly after she discovered a wait staff had brought a dish with gluten by mistake. She said she will keep them on hand forever now.
  2. I will have to add this to my cabinet. Thanks for the tip.
  3. I have not read all of the responses (im sorry) but wanted to say that I have been completely grain free for over a month now and I am amazed at how much deeper I am sleeping. I really needed the rest.
  4. I did ask my doctor who explains that my intestine is so inflamed, upset, and over worked that he has me on what is a "modified Paleo" diet. NO GRAINS. He removed tropical fruit temporarily because of the high sugar content that is in fruits grown in a high heat situation. Oranges have much more sugar content than an apple. Since my intestine has been so injured by years of allergic response, and nerve damages from MS I have been sucking up the sugar, but leaving many good nutritiousness behind. They wanted me to do a "cave man" or "paleo" diet till it healed. After my gut has calmed tropical fruits will be added back in. It was just this last week that they called to say my inflammation markers are lower and its safe to TRY tropical stuff. Why no almond grain, yet I could have almond butter, and mechanical chewing of almonds is the same as flour no? He said that anytime you mechanically process (even hand grinding) causes heat, which destroys some of the nutrition in the product. They wanted me to have as high of a level of nutrition as possible. Its been longer than a a month. I am actually bumping that magic six weeks. I was actually not supposed to be eating raw/roasted nuts yet, but was permitted almond milk as a way to transition. Since my daughter spoke of Paleo diets and I was able to explain myself more clearly I have a better understanding. Thank you all for the replies. Having a name or a style of diet to research and look up is immensely helpful. I have found several good cook books and even some dessert books that I can start using 4 flours in a couple of weeks. Almond, coconut, tapioca and arrowroot starch. I am looking forward to some yummies. I guess this goes beyond a gluten free diet as its completely grain/legume/soy free. I am also dairy free, but I can still have eggs. I was told I will be able to do some nuts but not others. Peanuts are high on the mold scale and will not be allowed, but walnuts, macadamia, almonds, pecans and such will. Things that are grown UP in a tree will be allowed, but nuts grown on or in the ground will not be. My gastro is so much better! my eczema is clearing nicely, my headaches have decreased, and my tummy is behaving better. Thanks for the support. I am off to search for recipes.
  5. Ok, I came here hoping to find support, kindness, and maybe some recipes and talk with others who have been thru similar if not the same things. I must not be expressing myself well because I feel like each of my posts have been picked apart and inspected for holes in what my MD has asked me to do. I dont know why I can have nut butter, but not nut flour. I dont know why I can have an apple, but not a pineapple. I dont know why I can have honey, but not sugar. I dont know why I can have whole almonds but not ground almonds. I dont have those answers, and I have asked for it to be explained over and over and over again, but my little cog fogged brain doesnt see why I can have nut milk, but not soy milk. yes, I understand that GMO is something all together different, as in its what is in the seed before it sprouts and becomes a plant. I am lost, confused, sick, and wandering. I wanted support, help, understanding and hopefully encouragement from those who walked a fair mile in my shoes before me. Thank you so much for all of the replies. This is frustrating, and difficult to explain as well as hearing from family members, neighbors, church members, and others that "just a taste wont hurt you...will it?" and the ever popular "wow, that is too much to do all at the same time" or the "I bet you can eat this, cause my sisters, neighbor married a guy who went to church with a man who was celiac." I am not celiac. All of my biopsies have come back negative. I do have leaky gut, an inflamed intestine, MS, as well as other inflammation conditions. my doctor seems to think that their specific recommendations and dietary restrictions will greatly improve not only my gastric functions, but my other conditions as well. I am grateful for some local friends and family that do understand that this is what I was handed, and like it or not, understand it or not, want it or not, this is what I am up to and yes, it has made me grouchy, and irritated and im lost! Day by day I am learning and balancing. If you have some dietary suggestions on cooks books, or recipes or links or resources I would love to hear them, but going back to argue with my MD about their specific instructions isn't going to work. I have already argued till I am blue in the face. Until my gut heals, this is what I MUST do if I want to help myself without surgical or medical interventions. I appreciate this space for being here, and having so many helpful sections. I am hoping to be able to find help here. Thanks for letting me hang out.
  6. I am sorry if this seems confusing, but my MD said NO flours. not grain, not wheat, not nut, not soy, not coconut NO flour of any kind. it is very difficult for an inflamed intestine to digest, and they have removed it from my list of approved foods. its not a matter of preference, or gluten, or even vegan its just that my gut is so upset and inflamed and gastroparesis is the ruler of the day that ALL flours have been removed. I dont know why they removed tropical fruit and not apples. They spoke of how the tropical fruit is grown in extremely hot climates and that causes a concentration of the fruit sugars which is harder to digest than a regular fruit such as apple or pear. I dont have the full technical details that everyone seems to be clamoring for. I just know that my MD said NONE, and I pushed really hard to include something anything of flour so that I could eat baked goods, but was told no flour of any kind should be tolerated right now. Perhaps after my gut heals I can reintroduce a nut flour or a gluten free flour, but for now, none at all. Clear as mud? to me too! All I know is what my restrictions are, and I am working ever so hard to stay afloat with them. I appreciate the inquiry, but all I know is that I have been cut off from many of my fav products and I went thru some nasty withdrawl/detox stuff. I hope to get my tummy working soon. thanks for the help.
  7. Thank you for all of the great replies. Let me try to explain a bit more. I am doing a flour free, Dairy free, Soy free, sugar free, tropical fruit free diet because I have MS, Gastroparesis, allergies, bloating, constipation, psoriasis, survived breast cancer, and my inflammation markers are off the charts. My biopsy came back negative 3 times for celiac. I have been struggling along under the assumption that gluten wasnt hurting me, and that I didnt have much sugar in my diet, so who cared? and that since I was eating clean, healthy and what I believed to be an organic style of life, that I was good and diet wasnt my issue. WRONG! I started seeing a naturopath when my MS slid out of control and my inflammation markers went wild. She believed that I was having a reaction to at least dairy, if not gluten as well, but in order to completely bring to a halt all of the stuff that was going on, I was placed on what she called the "freedom diet" and she removed all of the above from me. I started seeing a nice chiropractor who is a macrobiotic vegan, and his wife is a macrobiotic vegan chef of some sort, so he and the naturopath got in cahoots with each other and that is where this twisted tale begins. It was a rough go at first, and yes it was very hard to remove so many things from my diet so quickly and since I tested positive for thrush and other organisms in my gut I was/still am going thru a detox phase as the buggars die out and their toxins get removed by my immune system. any little change to an MS patient can cause big swings in our disease. I am lucky in that my adopted daughter IS a Celiac patient and she has grown quite knowledgeable thru the years about what this or that does or doesnt do. I am under the care of several MDs, and I am under the care of a naturopath and other alternative health care providers so my care is coordinated, but it was confusing as I stepped into this world full of cognitive fog, confusion, detox, anger, depression, anxiety, and a whole host of other issues. I will be wandering the site looking for Dairy free/flour free recipes. It was not that I woke one morning and said Hmm...let me try this. The MD handed it to me and said NO MORE! I said what about a gluten free diet, and was told NO! do not eat ANY flour. not rice, corn, tapioca, bean, or the like. To take any food and grind it into a flour causes heat to destroy the product and you are eating a dead food that is very difficult on an inflamed gut to process. Eventually I am told that I may or may not be able to add back in some gluten free products but for now, NONE. I will probably never get my dairy back, and I miss it greatly. I can use natural products to sweeten like maple syrup or honey, but no sugar. Nothing refined at all in my diet. I have been stuck at a weight that has been higher than I would like for a long time now, and no matter what I do it wont shift. I have tried diets, exercise, restrictions and so forth with no results beyond two pounds forward and then two pounds back. I have lost 12 pounds in the last 3 weeks. so, this must be either triggering something or im starving. My adopted kid has been wonderful at helping me figure out high nutrition foods that pack a punch so I am not constantly hungry or trying to figure out what to eat after I hit the low blood sugar slide. Thanks for the support. I will check out the links.
  8. Hello, long time no see! I joined this board months and months ago thinking I would do well to try gluten-free free with my MS to see if I could improve my sx. Well, I did it, and discovered my sx remained the same, so gluten-free was probably not my issue. I continued to bloat, have severe constipation, Multiple sclerosis sx, headache, nausea, brain fog and the like. I was kinda bummed because I know someone who is gluten-free and does great on it. Clearly I dont have this odd problem. I was in denial a bit (ok more than a bit) and decided that I could continue to eat what I wanted when I wanted and since my trial and biopsies were negative I was in the clear. WRONG! A bit of time has gone by and my sx are so much worse. My intestines are swollen, gastroenteritis was worse gastroparesis was also always looming and my weight was crawling ever higher each day even though I was not eating that much. I started seeing a naturopathic MD and she investigated my whole background and didnt treat me like most of my MDs who treat one body part at a time, or one disease at a time, she looked at my history, my diet, my interactions with the world, my stress, my brain fog and so forth. My intestine has always been really sensitive and quickly flares into a mess. It was decided that MILK was my issue first and foremost and the reason I didnt react to the gluten-free diet was that I was allowing milk in it. So, it was decided that I would go not just gluten-free but FLOUR free. ALL flours! even rice, tapioca and all the others. Sugar free (without allowance for artificial sweeteners. Not just milk but Dairy free (except Ghee) and as a good measure since so many tropical fruits are so acidic to remove all tropical fruits for a while. I am told that after a while I can add a few things back in, but am promised I wont want to. I have been doing this diet for the last 3 weeks, almost the last month and I have dropped 10 pounds. My tummy bloat is gone. My red face is much calmer. While my intestines are still struggling a bit to get moving, they are moving better. My brain fog is less, but still there, my MS sx seem to be less wild, but still there. All good news yes? then why am I here? OMG Im soooo lost! I dont have any idea what I should be eating, how to cook it, how to keep myself full, what are good choices, bad choices, and for good measure I am a breast cancer survivor so I am soy free. MANY milk alternatives have soy in them. MANY gluten-free products have soy in them. You will probably see me stalking around the recipe threads, seeking things I can eat. My gluten-free friend has gone two steps further and asked me to remove Oats and corn to make it a complete "perfect way of eating" so even more restrictions! I am trying to see it as "what CAN I eat" instead of what CANT I eat, but its hard. Dairy free, Flour free, Sugar free, Tropical fruit free, GMO free, corn free, soy free, and oat free make many traditional choices hard! To top it off I live in the backwoods and we have very few choices for grocery stores around here. There are no trader joe's or other such organic places. How do I know who uses GMO? I was upset to find Kashi does. This has been more than a challenge and with my addled brain im struggling. im hungry and im grouchy! Wave if you see me in the halls. I could use a hug. im tired! but determined.
  9. I am quite willing to entertain the fact that I MAY have a celiac issue. I know that many diseases are diagnosed without clear proof of what is going on. I am also aware of how much money is being made off of my illness. From medical check ups to meds that cost 40k per year. Check ups that run $1k a visit and $5k every 6 months to get MRI scans. I have demanded to drop them to ONCE per year, and NO MORE! It ridiculous how much money is being spent on me. The reason for the endo/colon thing is that for years now I have had a right upper quadrant pain that can be quite painful. I have had them go in to "look" at my gallbladder. They found it HEALTHY! and ...yep, you guessed it, removed it anyway! I was ticked off! To remove a healthy organ in hopes of relieving the issue was NOT a good enough answer for me. I have chased this issue for years. it will show its ugly head and be horrible for months, and then...just quietly go away. A few months or sometimes years later it will come back. The surgeon tells me I have a "cecal Bastule" or a volvulous. that a corner of my intestine keeps folding over, that its no longer attached to the wall of my abdomen. In years past they used to just go tack it back up, but 99% of the time it fails, becomes infected, and dies. Now they just go take that whole corner of 3 to 4 feet. Since I have had so many surgeries in the past after breast cancer to remove my ovaries, and lost my uterus in childbirth, he feels a key hole surgery isnt possible, and wants a big girl incision. What he is saying makes sense, and it certainly fits my sx and my history. I am being extra cautious. I have asked the GI guy to go take a look, and lets see how viable that tissue appears to be in that corner. While they are in there anyway, I figured I would ask for the celiac biopsies that my friend has so often told me I need. it was my hopes to come here, and get advice on what to tell the MD/GI to help make the sampling more effective or make sure its handled correctly. Lyme disease tests are a frequent false negative, and most labs cant handle it properly, so I assume Celiac testing may be the same. its my hopes to get some advice to give my surgeon. I have long since faced the fact that I do indeed have MS. I really, really, really dont want to be more restrictive of my diet unless I need to be. I am pretty close to the "makers diet" now. I have taken great care of my temple, and worked hard to give it good healthy fuels to run off of. Thank you for all the public, and private advice. You guys rock!
  10. How was I dx with ms? Spinal tap showed Obands. MRI reveals typical pattern of periventricular lesions in the perifrontal cortex. positive babinsky reflex After trial of interferons decrease in lesion load. Hx of numerous flares that involve drop foot, and other typical MS reflex responses. positive response on copaxone. Diagnosed by a local MD following up sx, who sent me to a local nuero. Local neuro felt it to be a definitive case of MS, but I wanted to debate it, so i sought out a higher level MS center and has all tests repeated. B12 normal. Vitd a lil low. negative lyme, negative ANA, negative lupus. I have been poked, prodded, examined, scanned, imaged, and turned on my head. it took a great deal of effort for them to prove to me that it was MS, and not something else. Followed up by a 2nd high level MS center to begin anew. All tests were reconfirmed, and I found that I had to face the fact that it was indeed MS. Obands in spinal fluid show a definitive pattern of mylin destruction classic to MS. I am a HUGE believer in "you are what you eat" I have been on a gluten free diet for a year period in the past without relief from my sx. I went back to a diet of non packaged foods. I eat as much from the natural sources as possible. I buy local or grow my own produce. I dont eat from boxes or cans. I avoid MSG, and high fructose corn syrup. My friend who has celiac is a bit...hmm...aggressive thinking that I have been misdiagnosed. Even tho I have been seen by the best of the best, and since I am having an endo, I promised that I would add the whole celiac panel to the event. She is a pro at gluten free, and is quite strict about it. so, I guess I am not willing to cross that bridge unless I have to.
  11. Thanks for the advice. I didnt know they needed to take multiple samples. I have been assured that they have a cutting edge lab at this place I am going, and are well skilled, and have dx celiac in several patients in this lab. I have had these tests before, so I know its not going to be pretty the day before. They give you dulcolax tabs in the AM the day before, and then have you drink Miralax thru the day. 14 doses. no more nasty liquids called golytely or fleets stuff. they found the fleets stuff had given out some kidney damage to several, and have stopped using it. I do have some diaper rash cream because last time, my fanny was scorched. I dont want to repeat that. I am a tough gal to knock down, so they have an anesthesia guy at my table for the ride. They promised to put me out, and keep me out. I have been known to need double the dose of meds, and still wake up in the middle. The endo is just alot of gagging, but its over pretty quickly. Even with the numbing spray, I still gag. I appreciate that so many have started the diet, and felt better. I was given a gluten free diet years ago while on chemo, and it really made no change in my life. I am going to be extremely surprised if my biopsy comes out positive, but have sworn to be tested to put my friend at ease. Heck, they are going to be in there anyway. why not take the sample! She thinks my MS may actually be a celiac issue, and I am willing to listen and take the test. All my MDs swear its MS. All the special folks, including the gastro, surgeon, oncologist, and neuros swear its MS. Its proably secondary to the large amounts of chemo I required years ago to survive cancer. Since I do and always have had tummy issues (at least since I was 25) I am willing to listen. I am told by the surgeon I have a volvulous. A corner of my intestine keeps folding over on itself, and that puts a kink in the hose, causing pain, swelling, bloating, and has been happening for so many years, it has caused that peice of my intestine to become non functional. The colon/endo is going to check to see how viable or survivable that tissue is. The surgeon has become convinced that simply removing that peice of non functional intestine will fix the issue. I am not so quick to cut. btw, I am on a good diet. I eat organic, and whole. We eat from the ground, and buy meats locally. I dont eat anything from a box, or bag, and run from MSG and HFCS. I havent seen a mcdonalds or BK in years and years. If I want mac and chesse, I make it myself, I dont dump it from a box. If I turn the corner and the samples are positive, I will cross that bridge when I get to it, but dont want to give up breads, and be so restrictive on my diet unless there is a need to. IF it comes out positive, I will call my friend, and she will come strip my house of all of its yummy gluten. I dont eat much gluten now, but she would go nuts and strip my place to the bone. I bet she will move in for a week and show me recipes, and dishes. I love that kid! she rocks! so, IF the biopsy comes out positve i am in good hands, but if not, I really dont want to be in another club house. I have enough restrictions on me.
  12. I have been diagnosed as MS a few years back. A wonderful friend who frequents this board (no names ***stares at Julie***) swears that she thinks I have celiac. Lately my tummy has been torn up! wooo! The MD thinks I may have a volvulous, but thats another story. I am trying hard to avoid having 4 feet of my intestine removed, and saw the GI MD who suggested an endo/colono type test. I asked if he could do a Celiac biopsy while he was in there, and he agreed that its not a problem. My question is.... 1. should I suggest a special lab to send the sample to? 2. is there any advice or instructions I should pass on to him? 3. what is YOUR advice to ME? 4. please take my thanks in advance.