Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1-m):


utahlaura

Advanced Members
  • Content Count

    26
  • Joined

  • Last visited

1 Follower

About utahlaura

  • Rank
    Star Contributor

Contact Methods

  • Website URL
    http://
  • ICQ
    0

Profile Information

  • Gender
    Female
  • Location
    Utah

  1. Celiac disease is an autoimmune disease because your body mounts a response to gluten complexed with your tTG molecules. If you have active celiac disease, meaning that you are consuming gluten, then you may be more likely to get sick since your body is using energy to attack itself, so it has less energy to protect itself against pathogens.

    That's just the enlightenment I was going to get. I thought I was getting a lot of colds and they lasted longer that say if my husband caught it. So the Celiac can cause this. Such a bummer, huh?


  2. When I feel iccky and I want comfort food for me that's cream of buckwheat. It tastes and has the texture of cream of wheat without the gluten and with a lot more easily digestable protein. I use the Pocono Brand which is grown in dedicated fields and processed in a plant that only processes buckwheat.

    Yeah! Hurray for buckwheat! Right now, it's the only grain product I am always safe with. The buckwheat cereal you mentioned is a staple of mine when I need a good carb fix! Also, I've been able to bake with buckwheat flour. ( The cheapest way to get it is the 100% buckwheat pancake flour..not the "mix") I use buckwheat flour in place of wheat flour to make breads like banana or zuccini bread ( substitute any veggie or fruit mash desired) and I use mechanically press palm oil as the shortning ( it's about the consistancy of cold cream and works great.) The yeast breads with buckwheat were a no go, though, because the flour is too heavy to rise. The banana bread thing is heaven, though, and SO easy and fast. Use carrot or squash or anything you're sure about for you.

    I also make little buckwheat cakes ( thick) to use in place of buns and they have a great nutty taste. A little baking soda and powder must be added, but you can experiment with quantity there. I still am, but have had no real bad results with any estimations yet. For about 8 little buckwheat cakes/buns ( 2 c. flour) I use about a half teaspoon of soda and the same with the powder. That's working well right now.


  3. I'm in the in the initial healing process, and I know it's supposed to be hard. Been diagnosed by endoscopy biopsy. Eating non- gluten of course, bit still have WAY too much trouble reacting to many non-gluten foods. Such as fruit or anything sour...any starchy veggies...milk products. And can I please ever make a non-gluten baked good that I don't react to??? Seems like anything too complicated or diverse sets me off even if the individual ingrediants usualy don't. What up with all this?? I'm so confused!!!


  4. I'm on fish and vegetables and buckwheat only right now. I can't even do rice ar any grains at all. No starches. No fruit. Almost no fats ( common dietician says) Lactose intolerant, of course. Absolutely no strong flavors of any kind. But then I'm just beginning the healing process and am grateful just to out of the IV clinic finally!

    I really wish I could find a good web site that doesn't just say don't eat wheat, barley, or rye. Geeze! Wish it were that simple! And what are these "night shades"? I'm so limilted right now and keep making mistakes like when I tried eggs. Bad 4 me! Potatoes, beans...I never know what to do, so I'm just sticking with what I know right now. Fish and non starchy veggies and buckwheat. Starving here!!! AAUUGGHH!!!


  5. This never happened to me before, I just cant seem to tolerate red wine anymore. I used to be able to have several glasses of wine and have a good time. Now when I drink it I get nauseus, trouble sleeping, and anxious. I just came back from being down the shore and I tried to have a glass of wine again and it just sat in my stomach and then I had to throw it up.

    Could it be that when you go gluten-free your body changes? Do you think its just temporary? I think that Im really sensitive right now, I can tell my body is going through a healing so maybe that is the reason I cant drink.

    Has anyone else experienced this?

    Im just going to give up drinking entirely. Its not worth it.

    I can tolerate any really sweet wine but just a terrible reation to a dry wine. huh. Sour fruit does the same thing. What makes things sour anyway???


  6. I've been gluten-free for 7 weeks. My symptoms have been mostly neurologic. There were really no digestive changes when I went gluten-free. I still feel horrible, but there have been a few baby steps towards progress. (Getting off NSAIDS). Saturday morning, I woke up feeling relatively clear headed. I had my gluten-free tea, plain walnuts, gluten-free rice chex, and DAILY meds (gluten-free vitamins, Strattera, and Cymbalta [EliLily will only confirm no wheat]). Within the hour, I started feeling my old headache, tension, buzzing, lethargy. That has continued for 48 hours. Then today, I got my version of soft stool with tiny bits of food. It was moderately painful, but brief. The neurologic relapse is feeling a bit better today. Canker sores are appearing. I'm thinking the most likely sources of gluten were invisible flying husband crumbs, invisible flying birdseed (gluten-free on special order), or my momentary relapse into nail biting).

    At this point in my treatment, I have several questions for all of you.

    1) Does this sound like any of you when you get glutened (especially the 48 hour delay in digestive symptoms)?

    2) If I did gluten myself, does that mean I had been successful at being gluten-free?

    3) If the most I can say after 7 weeks of gluten-free is that I'm off NSAIDS, can climb stairs a little easier, and walk a little faster, shouldn't I be asking for more? (I'd say I'm 4% better) My 2 month appt is coming up and I'm thinking about discussing the following with my rhumatologist:

    * vitamin testing/injections

    * investigating additional autoimmune diseases

    * wondering about refractory (I don't want to think it, but I've had so little progress and all the incomplete diagnosis along the way make me on my guard for a better explaination).

    4) When is the earliest I can get my first gluten-free bloodwork done accurately? I'm tissue transglutiminase IgG negative. Everything else was moderate to strong positive.

    As far as my gluten-free attempts go, I'm eating almost all whole foods, stopped most beans/soy last week, kept old unscratched expensive teflon, DH still has gluten, no gluten baking for me, prerinse gluten plates for dishwasher, called company on all prepared foods (or lablel says gluten-free), no restaraunts, no makeup, Suave shampoo, B&Bworks shower gel (no obvious gluten), dishwash can opener, crest toothpaste.

    Thanks for any opinions, personal experiences, and web links you can share.

    SGWhiskers

    The first couple of healing months for me have been absolutely awful! I of course react to gluten, but aslo to so many foods that are non gluten. Trouble with fats ( dietician ays that's common) lactose intolerant. The only grain I can tolerate at all is buckwheat ( not really a grain but a flower) Natural and artificial flavorings absolutely throw me down! No fruits yet or anything sour ( like a dry wine too) I worry aout my fat soluable vitamins because I'm getting very little fat and my energy level id low cause I can't take any startchy or sweet carbs like beans or rice or fruit. Even potatoes are still off limits.

    I like to say I get my variety having fish and vegetables one day and then vegetables and fish the next. lol Yeah this is a tough time for me, but yesterday I was able to tolerate 8 oz of fat free milk! Yay! And even though I can't tolerate chicken, I discovered I can have pork ( of all things) if it's boiled clean of too much fat and in small amounts. I can also drink tea again too! Nothing flavored, though.

    So I'm getting better and smarter and more patient. Patient especially has been a biggie with me. Not trying to eat all foods that are non-gluten too fast. Wierd that we have all these other food reactions at the beginning of the damage manifesting itself. I was SOOO discouraged and always sick for a while. But at the very beginning I was actually doing the IV food bag clinic cause I couldn't tolerate a bite of anything. Hideous! Thank God that part is over at least!


  7. I've seen my doctor for my dizziness that comes and goes and I've had all the tests. So right now we think it's either anxiety symptoms, or CC from gluten. I just don't know right now because I have stress that I'm dealing with (classes start tomorrow) but I've been so careful fixing my food and I've been sticking to only foods that are made to be gluten-free (not mainstream grocery store foods).

    Anyway, the question is, how long does the dizziness last if I am getting glutened?

    Oh sure! That's a celiac thing. I get dizzyness, loss of balance, ringing in the ears, extreme irritability, disorentation,numbness and neuropathry in the extremities, and bone and joint pain all accompanied by extreme sleepiness and exhaustion. But you can't lay down cause it makes it worse. AAAUUGGHH!!!

    My reations always get better in sequence. First I feel better mentally ( less sort of creeped out feeling or basic anxiety) then I know the dizzyness and and balance problem goes. Numbness next, but the joint pain lasts longer. Usually 24 hours or so, but the disorentation ( I call it the Jessica Simpson complex) and ringing in the head can go on for days with any food at all stirring things up and I have to be really careful eating too much at a time.

    I'm losing too much weight and worry about being malnourished. I take good vitamins and calcium too because after a bad reaction I have to eat nearly nothing for a few days so as not to "stir things up again" I've been told that when this kind of thing happens some Celiacs take laxative to clear out whatever caused the darned crap in the first place cause it can take a few days to natually void it out. I haven't tried that yet. It seems so drastic! But I almost did that this weekend. My reaction ruined my weekend totally. I'm going to ask my doc about the laxative thing to make sure it's OK occasionally before I do that.


  8. I was diagnosed 3 months ago and have been on the diet ever since. I get severly and instantly sick if i eat it by mistake. The last few days it seems to be getting worse even though im eating the same foods. Could i suddenly be developing a problem with lactose? thats the only thing that i can think of that i am having out of my normal foods. Anyone know? please help im tired of being sick....thanks christine :(

    I can really relate!!! Isn't this "healing process" the most confusing anf frustrating pain in the butt??? AAUUGGHH!!! Good luck to us "healers" and especially God speed!!!


  9. Hello all,

    I have a question..I have been gluten free for about 3 months now, and feeling pretty good for the most part ( you all know after 3 months "learning experiences" can happen that tend to be unpleasant) anyways, I saw a GI doctor about 2 weeks ago who happens to also have celiac...kind of convenient. Anyways, I went to see a GI doctor b/c I need to know for sure if I have celiac ( blood test were inconclusive) and b/c while I do feel better I still get stomach issue and d although it is less frequent..also I have really high levels of billirubin. ANYWAYS, my question is, since I have been gluten free for 3 months they seem to think the biopsy I am having done in 3 weeks will not be accurate since I have been gluten free, SOO they told me to start eating gluten again...I dont think I can. I have been hospitalized 4 times this past summer for severe sickness, and when I do accidentally eat gluten I get really sick ( you all can relate) I just cannot see putting myself through this AGAIN for 3 week. I need to find out if its my gallbladder and or pancreas causing all the trouble or something else, and they are biopsying pretty much everything that can cause stomach issues. did any of you have to do the same thing and how the heck did you manage it...I have a full time job with mental health clients who relay on me to be there, but when my stomach acts up its really bad...any suggestion would be appreciated. Also, does the biopsy hurt and how long recovery time? thanks so much,

    Jewles

    My IGA tests were inconclusive so my gasroenterologist told me to eat gluten foods for a week before blood testing again because being gluten free for even a couple of weeks will make the antibody test negative.

    I made it four days and I was DONE with that!! The IGA test came out negative so he decided to schedule the endoscopy biopsy. There is absolutely NO NEED to eat gluten for a time before this test!!! Damage to the villi ( what the test looks for ) takes years my doc said and no matter what I did food wise before the test would not effect the results at all.

    I stayed gluten free then ( geeze! Of course! ) for the few weeks before the test and it showed villi damage. Celiac. The test was a breeze, though. I was unconscious for the whole thing, and they gave me a colonostopy while they were at it to check for possible bad things down there which can be cause by Celiac Disease. Happy to say that came out fine.

    I had no "recovery" time. I couldn't tell anything had even been done, so don't worry about that.

    If your tissue examination ( biopsy) shows villi damage don't be alarmed. You kinda should already expect that may be the case. Your doc just wants to verify the Celiac diagnosis. They just do.

    If you do show damage and are in the "healing" process, don't be shocked to experience confusing reactions to non gluten things sometimes for no apparent reason, a lot of frustration figuring out how to stop your unexpected reations. No one will be able to advise you either. All they can say is that Celiac is "different with everyone" and the healing process is impossibly hard to deal with cause weird things will happen continually.

    Even though @%$& happens constantly, though, and the time span for this is unknown for sure ( everyone is different again) if you are gluten free you will still be healing even when weird unexpected reations still go on for a while for no apparent reason even gluten free. Your intestines are screwed up for the next two months to a year. Geeze, can they please give us a more narrow clue???? AAUUGGHH!!! Basically we're on our own and good luck in hell. That's basically it. Rest assued it will improve bit by bit with nose dives all the way..but fewer and fewer with time.

    My advise is to just grit and bear it. What else can we do really? What a pain! Look toward the future, though. Keep reminding yourself that once you get through this initial bad part you will discover a lot of health issues you may have had for years will go away from joint pain to gingivitus. Really, I'm not kidding. Things will get tons better so hang in there, and God bless us all.


  10. I went on a gluten free diet on the basis of an intestinal permeability test, which proved I was suffering from terrible malabsorption. I am still on this diet and have been for almost two months now; the school has even given me a personal chef, and I am feeling ill. I'm sure her food is safe, and I know she is cooking it right, and with dedicated pots and pans. I've suspected from the beginning that celiac was not my issue, because the test was not very conclusive. Anything I eat, not just gluteny foods, make me sick. What should I do?

    Thanks!

    I had two IGA tests that came out normal, but then my endoscopy biopsy tissue test for villi damage showed quite a bit of "stubbing" and confirmed Celiac. My gastroenterologist ( which I chose for his expertise on this) said that there is such a thing as non- antibody Celiacs. That's why my reaction symptoms are mostly neurological instead of the stomach ache, nausia, vomiting, headache that results from antibody producton..as though one suddenly has a bad flu. Joint pain, disorientation, loss of balance, and ringing in the head are my main pains in the butt.

    But I still have the same problem as you..I seem to be actually getting worse during this healing process sometimes. I'm able to eat fewer and fewer things every day. Was fine with rice, olive oil, fish and dairy before. Now, no go. But my reactions aren't as serious. That's the only improvement.

    My dietician told me that every Celiac has their "nemisis foods" that they will react to that are gluten free, and that these will change around continually during the initial "healing process" and to expect a lot of confusion, frustration, and unexpected reactions. Sometimes just because of a stressful day, you can get reactions out of thin air without even eating. basically expect a lot of "hell" for a while and more weight loss till things eventually start to turn around. When this will happen is anyones guess. That's most of the frustration..not knowing anything for sure or what to expect for sure at first. You don't have anyone to go to..anyone to advise you on what you are doing right or wrong. It's all so confusing and we are really actually on our own. Bummer, huh? Good luck to us all!


  11. I've just stared my healing process, so I still get reactions lots of times unexpectedly for various reasons. The first thing I'll always get when I start a reaction is a buzz or hiss in the head. If it's a bad reaction this hiss can be very loud! Does anyone else get this? Also it's the last thing to go away..lasting often into the second day ( a bit less then) and sometimes even slightly into the third day. It's so annoying! I really feel sorry for people that have tinitus all the time!


  12. I was just diagnosed a month ago and have been gluten free of course, but there were still tons of other things I reacted to cause I still needed to heal, I guess. Trouble is, even though I've been gluten free for a month now, a lot of the things I could tolerate a month ago I react to now.....dairy, olive oil, rice, fruit...stuff I could eat before. Now I'm just on a steamed veggie diet and only small amounts at a time. I'm wasting away and just don't understand why this is happening. Aren't I supposed to be getting better??? What's up?


  13. I was just finally diagnosed with celiac after my endoscopy biopsy. I was actually relieved to be finally verified as to what I already knew was wrong with me after about a hundred hours on the net and scientifically done food experiments on myself. ( seems you practically have to diagnose this disease yourself sometimes.) Finally ended up at a gastroenterologists office who believed me and did an endoscopy biopsy at MY request. Sure enough...Celiac.

    As far as neurological symptoms..that's what started this whole journey in the first place. It started out with foot neuropathy ( first I was screened for diabetes...no diabetes) Then I started getting the VERY sleepy and weak effect. When I actually collapsed once after a meal, I really started to research this.

    My internist gave me the IGA test which was negative..but I was still convinced it was the gluten. After eating I began to have a lot of pain in my bones and joints, dizziness, an overall "ill" feeling, horribly loud hissing in my head, bad foot neuropathy, extreme sensitivity to sound, and worst of all..extreme emotional response which could either be sobbing, anxiety, or anger to the point of rage. ( so very wierd! ) This would only happen after eating.

    I eliminated gluten and went totally veggies only and was totally reaction free for a couple of weeks and felt great! Then I started reacting to even a bite of a vegetable that I was fine with the day before. Things got really confusing then. I barely ate for weeks and ended up in the ER on a food bag! What I didn't know was how difficult the "healing" process was. A nurse at the ER told me that for some it can be so bad that they have to eat as little as possible and come in every few days to the IV clinic for the food bag treatment until they were healed up enough to eat even gluten free. WOW! I prayed this wouldn't be me!

    Thank God after a time the reactions to every single thing subsided and I am now able to get enough calories, etc. to survive on while I heal up. At this time I can eat only fresh veggies (except for potatoes or tomatoes) and I can also tolerate olive oil, long grain brown rice, and fish. No soy products, fruit, lactose, corn products, no anything else at all yet. But my dietician says that as time passes I'll be able to add things in. Many Celiacs, however have trouble with some non-gluten foods all their lives. Corn, tomatoes, beans, and eggs are common. One woman I met can eat anything gluten free except for watermelon. Strange, huh? Another women I met who owns a gluten free strore ( bless her!) cannot eat eggs. She says that all Celiacs have one or more non-gluten foods that will still give them the glutened reaction. Go figure.

    So, here I go on my healing adventure. Right now I am just over joyed to have been able to add rice to my "good" foods. Before that I was DYING for carbs!!! Now I feel much better and have stopped losing so much weight and have more energy. Whew! Now if I can only add eggs back in! Patience plays a big roll, though. If I want to "test-add" a new food ( like potatoes again, please!) it has to be just a tiny tiny bite or else I can be really sorry.

    So wish me luck. I heard that during the healing process you can be going along fine in your regimine and all of a sudden you nose dive for no apparent reason, and everything gets so confused again. Here's to hoping that won't happen to me!!!!


  14. The nightshade foods are potatoes, tomatoes, peppers, eggplant and tobacco. If you get reactions to those, you probably shouldn't eat them.

    Potatoes give me the same reaction as most other starches, diarrhea, gas, bloating and pains and aches in my back and my joints.

    Tomatoes cause migraines for me. Peppers give me big, ugly, pus filled pimples all over my face. I don't know what eggplant would do, because I don't like it anyway. I am severely allergic to tobacco smoke (it gives me asthma especially).

    Yeah! Potatoes and tomatoes both! Especially tomato juice. I was able to have tomato juice for a while till this whole gluten intolerance thing got so full blown. Now..NO tomato juice! I thought it was because it was made from "concentrate" A Celiac "bad foods" site I found listed tomato puree or tomato paste on the bad list. Could this be the tomato juice problem? Nothing from "concentate?" You know they never do list what is in the "concentrate" Those snakes!

    Thanks so much for answering!!!! Huh..peppers too. Vinegar too maybe? My homemade gluten free salad dressing ( vinegar in it) may be my problem with salads?


  15. If you are are a Celiac and it doesnt sound like you have had all of the testing yet. And BTW being gluten free will make your tests inaccurate for Celiac most likely.

    But if you are....then it can take time for your villi to heal and during that time you can become more sensitive to foods. You may also have dysbiosis going on with too many bad bacteria/yeasts and this is making it hard for you to digest starches.

    Do you have a doctor? Do you have Naturopaths where you live?

    Actually, now that you mention it, I have been 100% sure of being gluten intolerant for a couple of months now. Since three different doctors were clueless, I begain my own research on food intolerances. None matched my symtoms till I hit on gluten intolerance. It matched exactly!!! Finally!

    So I began the very careful introduction of gluten free foods ( I had been fasting for two weeks because my food intake reaction was so severe!) The gluten free diet worked a tiny bit at a time. ( though dairy and protiens plus startchy veggies are still a no-go) My occasional reactions were way less severe, though Hurray!! I'd react sometimes in my experimentation ( like the potatoes and once non dairy creamer) but not so awful, except for the potato insident.

    A week ago, however, I was finally blood tested for the antibodies ( IGA tests) and today I found out that they were normal! So you're definitely right about the gluten free diet making the tests inconclusive.

    I have an appointment with a gastroenterologist in five days. I expect her to know a lot more about this, and be able to help me.( hopefully) I have a friend of a friend who told me that when she was first diagnosed ( six years ago) that she was first given a five day course of prednisone to "reboot" her immune system and it really helped her to be able to eat more than just a couple of forks of veggies at a time ( like I have to do now..about every two hours. What a pain!!)

    So what do you guys think about that? I know it's not very homeopathic, but I'm desperate. What else may she do to me? If she suggests an endoscopy where you have to eat gluten for a week first, I'm sure it will be too intolerable. Can you eat gluten for like a few days and then get the antibody test again? Why anyway? I already know what I have, here...right? So I'm nervous about seeing her. Leaky gut doesn't fit my symptoms, by the way. It's all gluten intolerance al the way.

    And thank you SO much for answering about the potatoes..it inadvertantly answered a question ( the test results) I was going to "topic on" today! You're great, :D ShayFL!


  16. I'm not all healed up yeat and am still eating carefully and in bits theses days. I notice, though, when I have to take one of my regular meds ( a big honkin' horse pill) that I have a slight but definite reaction to the filler in it. The reaction isn't horrible like a full blown one, so that's not my main concern.

    Here's my question, though. Especially right now while I'm still healing, is this harming my progress? And what about when I'm finally much better..will this medication be dangerous to me as far as causing underlying damage?


  17. I may be wrong about this, but I've read that all boullion is on the "bad" list. I checked my beef bullion cubes in the cupboard and sure enough they are loaded with gluten ingredients. Perhaps gluten free boullion is available or perhaps just canned "stock" is gluten free? But I definitely know mine contained various hydrolyzed ingredience and modified vegetable proteins and starches. Perhaps a bad brand? If you think about it, though, there's something holding it together and somethiing else making it oily enough to smash apart.


  18. I was reacting to so many different things for a while..even some proteins and some dairy. I fasted for a week ( no kidding!) and began introducting gluten free ( positively) fresh veggies mainly. I did so well that after a time I though.."Huh, maybe it was all in my head, or I had salmonella poisoning or something. lol!

    So I did the acid test! I actually ate a hamburger bun. Sure enough there it was. THE REACTION! It wasn't as bad as I had with products like soy sauce or packaged gravy or barbeque sauce back before we figured things out ( my doc and I and a IGA test) With the bun I didn't have the extreme bone/muscle/joint pain or foot pain. I still did get pretty dizzy and weak and ill feeling, but not so horrible as I have had.

    I looked at the ingredience of the buns and it listed first " wheat flour-less that 2% wheat gluten" What?? I thought wheat flour was all gluten. 100% gluten! Of course I reacted to it still and wouldn't include it in my diet, of course...but what IS gluten, then? How is it made and why? Is it from a process or extraction? And what does hydogenated or hydrolized even mean? And "modified"...what's up with that?

    I'm totally confused now about what gluten actually is. I thank anyone in advance who will take the time to respond and enlighten me.


  19. OK, I'm totally new about this....I've been blood screened for about everything else so far, but I'm pretty sure I have either Celiac disease or just Gluten intolerance ( not the same neccesarily )

    Only after I eat gluten containing foods my reaction is as follows:

    First heavy eyelids, tired eyes, sleepiness. Then bone joint and muscle pains start in the usual sequence..first in my shoulders and next in my ruptured disc area, then continuing to the other usual areas. This happenns at the same time as extreme weakness and fatigue. Then dizziness, disorentation ( easily confused) and spinning head balance problems and an overall "ill" feeling ( Yuck!!) but not neccessarily nausia or vomiting. Then burning tingling feet with extreme irritability along with buzzing in the ears. Sounds can even sound sharp and grateing.

    This starts after consuming gluten at about 10 minutes to 30 minutes later and continues for about 1 to 2 hours, then fades, sometimes leaving me weak and shaky all day..but sometimes feeling completely better depending on severity. The reactions also vary in severity depending on how much (or how damaging )the intake was. Still learning about that.

    So...I have had urine and blood tests to screen for about everything so far with no conclusive results. My own experimentation has proven this particular intolerance I believe. I can ingest definitey gluten free food with no bad reaction. Gluten containing food results in this reaction every time.

    I have an appointment with a gastroenterologist in a couple of weeks ( after seeing my family doctor, an Internal Medicine specialist, and an ER doctor when I had an especially bad reaction, and they were all mystified ) Their nurses where the ones suggesting gluten intolerance!!!

    I will be tested properly I assume and screened for possible damage if it is Celiac disease ( endoscopy screening) I'm hoping it is just gluten intolerance which doesn't cause intestinal damage, though I know I will have to have regular screenings to make sure. Bummer.

    So what do you say? Gluten problem? I guess!!! <_<