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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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  1. Hi guys, I am newly diagnosed celiac. I found out about a week and a half ago, and have been gluten free for 5 weeks (I stopped after the biopsy was taken). I never really suspected celiac, so it was quite a surprise, but when I started reading about it it made a lot of sense in terms of symptoms etc. I am 34 yr old female, my main symptom was lack of energy for as long as I can remember, blood tests only ever showed low iron (not quite anaemic) but supplements never made a difference (now I know why!). For the last 5 years I have also had constipation, bloating and gas, but I put it down to stress or bad diet and if I am honest because it was a bit of an embarrassing issue to talk about I became complacent. As this is all very new to me, I feel like I have so many questions so thought I would put some here and if anyone has any input or advice from their experience that would be great! I will probably also post more in depth questions in the relevant sub-forums - For those in the UK, how long did it take you to speak with a dietician. The letter with my diagnosis was sent on 12 April and said I had been referred but I haven't heard anything - I am interested to know whether other celiacs/strict GFers ever eat foods which say "may contain traces of..." or "made in a factory which processes...." etc. So far I have avoided anything which says "may contain" or "not suitable for celiacs due to..." but I did eat something which said "made in a factory" (Walkers crisps) as they were the only option but then I felt guilty after! - What procedures do you take when eating out, i.e. do you only go to places which are certified by Coeliac UK (if you're in the UK), do you find speaking with the waiter etc actually helps? I have eaten out a few times since being gluten-free and feel like I am being a bit difficult when I bring it up and that they don't really understand. I am lucky to be in London so there are lots of certified restaurants, but even in Pizza Express I didn't think that the waiter really understood. - For those who had energy/tiredness problems before, how long did it take you to notice a difference? The only difference I have so far noticed is I am now more regular toilet wise and have had very little bloating/gas. - I have always had low iron which is most likely due to celiac but also as I don't eat meat (I do eat fish), I am hoping now that iron supplements will help now so have been taking the gluten-free Floradix for the last week. Anyone noticed a difference in this after stopping gluten? Thanks anyone for taking the time to read, and feel free to put any general advice you have Rachel
  2. Hi all, Forgive the presumption. I don't have anything near the experience or knowledge base of others here, however I wonder if there's a need for an Intro post for the pre diagnostic board that could serve a similar purpose to this one: The same questions come up again and again, so this could save some time for users helping new members as long as they agree with the 'stock' answers. I have some time on my hands and want to put something back here having been the recipient of your collective support, so I thought I'd have a go at a draft. If you think the forum is better off without such a post (perhaps with a simple stickied redirect to a bona fide medical site) instead then by all means say so. If however it's a good idea in your opinion. feel free to tear it apart and correct as you see fit. ------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------- Welcome to the forum. If you're in this section, or have been directed here, you've yet to be diagnosed but may suspect that Celiac or gluten could be an issue for you. Please note that we are not medical professionals and although happy to share our experience and support you should at all times seek medical advice rather than relying on internet based sources. That said, we'll do our best to answer any question you have, just start a topic, but before you post please take a look at the following answers and links to see if they help answer your questions. I have symptoms X,Y and Z could I have Celiac or Gluten sensitivity? We don't know! No-one here can diagnose you via an online post, however detailed or however much your symptoms suggest a connection. Diagnosis is something for you to explore with your Doctor. What we can tell you is that as Celiac affects the auto immune system it can present in a lot of different ways or none, here's a short summary: http://www.cureceliacdisease.org/symptoms/ and here's a much longer list of associated conditions: https://glutenfreeworks.com/gluten-disorders/symptom-guide/ I don't feel well, should I give up gluten to see if that's the problem? Giving up gluten shouldn't be your first port of call, that would be your doctor! Even if you're right to suspect gluten, an accurate diagnosis of Celiac requires the patient to be consuming gluten. If you remove it beforehand you may have a much harder time finding out if gluten really is a problem for you. Also, the Gluten Free diet can be tricky to follow and it may be that you don't need to be quite so restrictive. There is evidence to suggest that other foods may be to blame for symptoms: http://bottomlineinc.com/before-you-give-up-gluten-try-a-low-fodmap-diet/ but you won't find out if you remove gluten first. I've already excluded gluten and feel better on the gluten-free diet, should I still get tested? This is something you will have to decide for yourself, preferably after a discussion with your doctor. The benefits of testing may include recognition and additional ongoing support from the medical community, further testing for malabsorption, monitoring of intestinal damage and recovery, access to dietician advice and automatic testing for close relatives who may have undiagnosed celiac. The validation of a positive test may also be helpful in maintaining the gluten-free diet for life without exceptions. Why do I need to eat gluten to get tested? Celiac involves an immune system reaction to gluten. The blood tests measure levels of antibodies in the blood. If gluten isn't present prior to testing those antibody levels could be affected and the test may result in a false negative. Most doctors recommend at least 8 weeks of gluten exposure prior to blood testing and at least 2 weeks for biopsy. How much gluten do I need to eat for the test to work? There doesn't appear to be a consensus on the level of gluten required, so you're best bet is to discuss with your doctor. Further information on a gluten challenge is available here: https://www.verywell.com/whats-involved-in-a-gluten-challenge-562708 What tests should I request? Tests differ with some labs not offering all the available tests. Ask your doctor or gastro enterologist to outline which tests they use. These are the current markers which should be tested: Anti-Gliadin (AGA) IgA Anti-Gliadin (AGA) IgG Anti-Endomysial (EMA) IgA Anti-Tissue Transglutaminase (tTG) IgA Deamidated Gliadin Peptide (DGP) IgA and IgG Total Serum IgA I went through testing and got a negative result, should I forget about gluten? If you've exhausted the diagnostic process and have a negative result for celiac you may still want to try diet changes to see if they help with symptoms. Estimates suggest between 0.5% and 6% of the population may suffer from non celiac gluten intolerance: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3820047/ You may not have to give up gluten however: http://bottomlineinc.com/before-you-give-up-gluten-try-a-low-fodmap-diet/ If you've finally decided to give up gluten keep a food diary to help track any intolerances and see the celiac newbie thread for help with the gluten-free diet: Other resources: https://www.coeliac.org.uk/coeliac-disease/coeliac-disease-faqs/ - a collection of questions and answers from a UK based Celiac organisation https://www.coeliac.org.uk/coeliac-disease/getting-diagnosed/ - a guide to the diagnostic process from a UK perspective. http://www.cureceliacdisease.org/screening/ - Advice from the University of Chicago's Celiac Disease Centre https://health.ucsd.edu/specialties/gastro/areas-expertise/Pages/celiac-disease-clinic.aspx - Advice from University of California, San Diego Celiac centre http://www.celiac.ca/?page_id=128 FAQ from Canadian Celiac Society https://celiac.org/celiac-disease/diagnosing-celiac-disease/screening/ - screening info from celiac.org http://www.beyondceliac.org/celiac-disease/get-tested/ - Testing info from Beyond Celiac
  3. Hello everybody, I went looking for a site to log my experiences and found this one yesterday that seems to be the closest to what I'm experiencing, so here I am introducing myself today. I am in my late 50's and have battled with weight and body image all my adult life. Consequently, I have been on many different diets over the years. Some people who know me will say that this is "just another diet" and in all fairness to them, I can't say I know they are 100% wrong. However, before, my diets have always been about losing weight. This time I want to see if my aching joints and fatigue go away. Those are my most prominent complaints at this time. About a year and a half ago I gained some weight because I quit following the low-carb diet that I'd been on. Then I discovered the classic Lyme disease ring on my leg after having been out raking leaves. I had a test (which came back negative), but my hips began to really bother me a lot. I blamed it on the weight for a while. (I'm not talking a huge amount of weight, maybe 20 pounds...) So, I had a second test done last winter as they had suggested I do if the first test was negative. At the time of the second test, I had also begun to be tired all the time. So they tested for Lupus also. Both tests came back negative. I started entering symptoms into Google and gluten-sensitivity kept coming up. Over the years I've had chronic UTI's. My ovaries would not work on their own, so I took fertility drugs to be able to conceive. I have two children, but lost three. I have a very hard time sleeping due to the hip pain. I have never been able to grow nice nails. My skin is dry and itchy most of the time. I'm hungry a lot - even when I'm not on a diet - or maybe it's even worse when I am not on a diet. I have a "sweet tooth". I have suffered with constipation most of my life. (I have developed a fondness for glycerin suppositories over the years. Sorry, if that's TMI.) Often in the evenings I need to unzip my pants or go get into my nightie to be comfortable due to the belly bulging (that wasn't so bad earlier in the day). Probably there are more symptoms that I am forgetting, but that's a good start. So... What the heck is wrong with me? Could it be I've been gluten-intolerant all these years? So, I just bought a book, The Gluten Connection, and, having read less than half of it so far, it seems like some things are starting to click. Or is it just my crazy mind latching onto yet another diet scheme? I'm not ready to go to the doctor's (long story, maybe another time...) and have testing done yet, -- which could be false negative anyway, right? So, I'm thinking, what's the harm in going gluten-free for a few weeks or months to see if things improve. Isn't that really the best test, anyway? That brings me to logging my experiences. I've read some things on this site that encouraged me to choose to post here. I hope that's alright. I'm very open to feedback. Thanks for "listening".
  4. Hi, I'm new to all this. My 13 yo was just diagnosed w/celiac after endoscopy. How long will it be before he stops throwing up every time he eats? He is eating everything gluten-free but he still has stomach pain. He eats chicken then has dry-heaves. I'm just concerned and would like some idea. I've called the doctor and he says he should be feeling better. Any thoughts?
  5. I think I just need a little bit of encouragement from those that understand where I'm coming from. Quick update, I haven't been officially diagnosed with celiac, but my Dr has agreed I have at the least an intolerance due to my reactions. My ttg Iga tests came back negative. I showed signs of marsh 1 on my endoscopy. Positive DNA test. And a definite reaction to gluten. Basically I've had cronic D, completely messed up female hormones, headaches, joint pain. Anyway, I'm 1 month gluten free/ dairy free and generally I have good days and bad days. I'll have a week of no D and feeling good. And then days like today where I'm in the bathroom every 20 mins. I've been extremely careful, but I feel like every moment of my day all I think about is food. Sorry Just venting. So my question is if this just an intolerance does it still take time? Maybe I'm just expecting to much to soon.
  6. Hi everyone. This is my first time posting although I've been reading some of your posts for a week or so now. I have a few questions that I hope you can all help me with. A little catch up on where I've been and where I am currently. I was diagnosed with hypo thyroid 10 years ago and have been on Synthroid since then. At that point I was getting horrible back pain, tired all the time, and just plain didn't feel well. Since then some symptoms have stabilized and some have just gotten worse. For the last 10 years and probably well before then, new issues just keep popping up. Just a list of symptoms I have had on going and unexplained are chronic diarrhea, stomach pain, constipation, bloating, gas that just seems to not go away, pain in my lower back, random hot flashes, anxiety, dizziness, fatigue, crying for no reason, and other minor symptoms. I have had days where I would have to run to the bathroom 5 or 6 times a day. After I would feel so exhausted and hungry to the point that I just can't seem to get full. This would be followed by about a week of constipation, bloating, gas etc. I have had stomach, liver and gallbladder ultra sounds come back normal. I have taken multiple thyroid tests that came back normal. About 2 years ago I started having short periods that would last about 2 days and then I would get multiple in a month. Usually about every 2 weeks. I've had ultrasounds for that come back normal. I've been told its hormones, depression, all in my head. At one point I was in my Drs office in tears because nothing was making sense. I've also been diagnosed with high levels of fatty enzymes in my liver. I am only 30 years old, I exercise, eat very healthy. I rarely have sugars and eat mostly whole foods. So you can see where all my frustration is. Recently my sister suggested something called the FODS food list for IBS, I did that for about a week and noticed that my symptoms flared up when I ate bread. So I cut it out for about a week and I started feeling better. Anyway, I had my blood tests for celiac this morning and have an appointment with the GI next week. I know I am supposed to continue eating gluten until testing is completed. I was only off for about 5 days and since then have been eating it just not every day. I noticed when I do eat it I have horrible stomach pains, I bloat up with in 30 minutes, I get really tired and heavy and this lasts about 3 or 4 days. My question is do you think being off of the gluten off and on a couple days here and there would make much of a difference? And is it normal to get such a horrible reaction to it only a few days being off? My doctor had said I didn't have to be on it for the blood tests but everything I read says the exact opposite. I'm really hoping that this could be the answer. I'm at my wits end and at this point just don't want to eat for the fear of getting sick. Have any of you had similar experiences or have any advise on how to get through all this? Thanks all!
  7. Over the last 28 days, I been in the ER 4x and hospitalized once. It all started with what I thought was a heart attack and me being whizzed away from my home and six year old in an ambulance. When released from the hospital the last time, I was told they suspect Celiac disease but weren't sure what's wrong with me. They suggested I go gluten free and that if I felt better, then I'd know what it was. Since being home, I received the blood tests which were all negative but with liver numbers five times what they should be. I'm awaiting the results of Celiac genetic testing (I have five family members on my mother's side that have Celiac disease). I am also seeing a liver and GI specialist next week. No one knows what is going on, least of all me. This has been an absolute shock since I've never been ill before and have not been able to work since the "attack" early this month. Also, after going gluten free 12 days ago, I took a Tylenol Extra Strength for a mild headache and joint discomfort which instigated a new round of "heart attack" symptoms and subsided the next morning but left me with what feels like a spike through the left side of my head. Do any of you share a similar story or have similar symptoms? I'm thinking I want to forgo the endocopy and liver biopsy to see if the gluten-free diet helps and causes my liver numbers to drop. Have any of you had success with this? Any thoughts or advice would be greatly appreciated. I've outline my "symptomology" below. Warmly, Sick, Shocked and Scared One year prior to November 1st “Attack”: Loss of menstrual cycle Hair loss & shaking hands Frequent bruising Memory Loss Crashing fatigue after school (three months prior) Frequent stomachaches after eating (or some radical bouts of food poisoning) & gas Irregular stools: constipation to diarrhea, blond to dark in color. Excessive coughs, colds and flus November 1st “False Heart Attack”: Started with a mild concentrated chest pain and a feeling of unwellness. Increased temp, a numbness down left arm, shortness of breath, irregular & increased heart beat. After November 1st : Intermittent chest pain and shortness of breath (only three large “attacks” - # ER visits) Numbness in left arm and both hands (nearly unusable left arm on Sunday ER#2) Numbness of varying levels in feet Loss of large motor skills Loss of fine motor skills Very slow movement Slow thought & mental confusion Memory loss Ex: At 4th emergency room intake, I heard the clerk state that my mother would have to have me sign the intake form. After she was seated next to me, I asked her when I would sign the form. She then told me that I already had signed it. It came as a total shock to me. Ex: I had difficulty remembering my address right after the attack. I would search my mind but couldn’t remember it or misstate it. Frequent Urination Nausea and dry heaving (primarily the first four days after Nov. 1st In ability to walk (primarily the first week after Nov. 1st) General malaise & excessive sleeping (12 to 14 hours) Involuntary full body spasms, leg reflex spasms while awake, involuntary jaw clenching Seeing and feeling like I’m moving (when not) increased when eyes are closed Some Kidney discomfort A feeling of being perpetually hung over No sleep (or sleep cues) for a few days after Nov. 1st then excessive sleeping No hunger cues (can eat some but not much) I was unable to eat for several days after Nov. 1st (stared feeling better) Oddities I previously forgot to mention: Water tasted metallic or poisonous the first few days after Nov. 1st Urine smelled like feces the first few days after Nov. 1st. When the chest pain and shortness of breath are present, the numbness seems less I have clarity of thought and some energy for gross motor but then “crash” afterward.
  8. Hello, I've been so distraught about all this for the past couple months, and I don't know where to turn/how to get the help I need. I am female, 22 years old, and live in Ontario. For the past couple of years, I've had general crappy feeling issues - regular headaches, light-headed, almost daily headaches, unsettled stomach, constipation, diarrhea. After suffering, I decided to go to the doctor and was told I had IBS and that there wasn't really much to be done. I think I wasn't taken as seriously as I have a history of anxiety/depression, and think my issues were chalked up to nothing more than stress. Several months ago, I began having a lot of pains in my chest and upper stomach that were sharp and pulsing, then disappeared. After going to three different doctors, I was finally tested for h. pylori, and the results came back negative. I was told to take the h-pac (8 pills a day of antibiotics and acid meds I believe?). While it helped, I still had symptoms and was put on a PPI. I was still feeling incredibly weak, light-headed, foggy, exhausted, and asked to have a blood test which my physician reluctantly agreed to. She told me if there were any issues, that she would call, otherwise, come back in a month. A month later (now), things had not improved, and I went back to see her. At this point, I am experiencing the following: -headache (almost daily) -nausea -extreme fatigue (even with sleeping 8 hours a day) -light-headed -can't focus -need to lie down a lot -diarrhea, or just having very heavy BMs -constipation -tingling in my left hand that comes and goes -hard to explain, but when I close my eyes, my brain feels weird My blood test from beginning of October showed (don't have exact numbers, I didn't get my own copy): -very low iron, hemoglobin -very low vitamin B12 I've been crying a lot because I feel so hopeless and trapped. I was also so angry that I had lived a month with such low levels of iron and B12 considering I've been feeling like a zombie all month and she forgot to call with my positive results. Does it seem possible that I have Celiac? What are the best ways to know for sure? My doctor said she's going to refer me to a GI for an endoscopy, but that process is going to take months. Is there a way I could speed this up? Would going to my ER be an option? I don't know how much longer I can handle these symptoms/constantly feeling awful. Also, has anyone else experienced a link between H. pylori and Celiac? I have read things about Celiac being started by some kind of event/infection that really exacerbated symptoms? Any advice/support/information or places to go for support would be so appreciated. I'm barely an adult and facing this wall of daily symptoms has really taken a toll on me.
  9. Thank You For This Site

    Good afternoon! I have been a creeper on this site since June, and just had to join. I'll hopefully keep this post shorter, but also introduce myself and give some of my background. I am a stay at home mom with two children, run a small daycare in my home and also have a part time job as a bookkeeper. I live in Canada, and have a mini zoo in my home. As a child I always wanted to 'save' every animal I found, and now that Im the grown up I get too... and major bonus is my husband supports it What brought me here? I had my first born, and from the moment he was born both of us were going through medical issues. I knew the second he was placed on my chest that there was something wrong. But it was chalked up to be being a young parent and hormonal. At the age of 5 months my son had already been in the hospital 3 times, and we found out that he was anaphylactic to dairy (I supplemented with formula). This is were my journey with learning everything there was to know about food began. My son has major food allergies, but as he has gotten older he has been reintroduced to many foods that he can now have. At his worse, he had to be a vegan who was also allergic to a handful of fruits a couple of veggies and nuts. It was a crazy time, and felt like the biggest elimination diet ever (this lasted for 18 mths) He is able to eat almost everything now, except he is anaphylactic to dairy (all derivatives), peanuts and tree nuts, and all types of seafood. He's 9 yrs old now Now about me, since I had my first born I started feeling ill all the time. I had to run to the bathroom, what felt like every time I ate. I started suffering from horrible migraines, and restless nights. I felt tired all the time. I had gone to the doctor many times about my issues, brought it up at every physical. I had gone for blood work, and everything came back normal. After 4 yrs of my complaining they set me up an appt for a colonoscopy. I couldnt make that appt due to the fact I found out I was pregnant with my second child. I prayed that my issues would correct themselves with this pregnancy. They did not. They got worse. I had to start seeing a neurologist for my migraines, as I was getting them in clusters. My stomach issues got worse, so I was set for a full panel of allergy tests. Everything came normal except a few things. I was in horrible pain all the time, and never had energy to do anything. I started having joint issue's, and got sent for xrays to see if I had arthritis. I also got sent to a dermatologist because I starting suffering from psoriasis. My goodness, I felt broken. Then in the beginning of this year I had had enough! I chose to do a total elimination diet for myself. I started feeling better after a few months, my skin started clearing up and my migraines even got better. After a doctors appt I had in May, I told her what I had been doing. She sent me for more blood work (first time that she had check for gluten screen). I got a call the next week from a GI doctor asking me to come in. I met with him at the end of May, and give my medical history he was very surprised that I hadn't been referred to him years ago. He told me to go back to eating what I was when I was ill, and that I'd have an endoscopy done. Boy oh boy, I did not realize what I was getting myself into. My endoscopy was booked for Aug 29, so needless to say I had the worse summer ever. I was so sick, all the time. I had to go for more blood work 2 weeks before the test and it came back with low B12. I had the biopsy done and he suggested right after the procedure I go on a gluten free diet asap. I was told that I would get a call once the test results came back. (during the summer months I started really looking into things, and that is how I found this site) I had my appt with the GI doctor two weeks ago and got the diagnose of celiac disease. He said that he was pretty shocked to see the amount of bluntness to the villi considering I was gluten free for some time before we had even met. So, I am gluten free 100%. Ive changed hair and makeup products and have already started seeing a change in my skin. It's been a long road, and I'm sure it'll still be a bit longer as I'm gonna need time to heal. Both my children have been requested to go for blood work to check them, and their B12 levels by their paediatrician. I'll be bringing them next week. The doctor is a tad worried about my daughter, she's almost 4, as since she was 7 mths old she has had constipation issue's, and has already gone for a barium enema. My son has been screened before, but the doctor would like to do it again. Do to his medical history, and he is also anaemic. So... ya... that was my "short" post on introducing myself. Thank for reading!!
  10. In Search Of Help.

    Hey guys, I'm pretty new to this whole thing. I'm 15 years old and yesterday was the first day of my sophomore year or highschool. A week ago yesterday I had a stomach scope done. For the last 8 months I have been struggling with intense stomach problems. I had the hida scan, an ultra sound, blood tests for various types of ulcer related problems. However, they never tested me for a gluten allergy. When the surgeon had discovered my inflamed small intestine he decided to take a sample of my tissue. He told us there was a slight chance I had a gluten allergy, but it was very low. That is was probably caused by stress. Yesterday, I recieved a call confirming I had celiac disease, only half way through my first day of school. I truly believed that that wasn't going to be the problem, so it took me back quite a bit upon learning that it was. Now I'm struggling knowing that this is a life time problem. It's honestly depressing to know. I'm also struggling with finding gluten free foods. I live in a small town (no walmart) so it's been hard. I really could just use some advice and maybe some easy foods to eat without gluten? Please, I'm feeling really lost seemings as nobody I know has this problem... Thanks!
  11. Hey Everyone, First, this forum is great Thanks for sharing all of your knowledge! Second, I just started a gluten-free lifestyle (going on 3 weeks). Here are a list of symptoms that lead me to this change: For the past two years: Diahrrea (managed for 2 years with probiotic treatment. Never fully corrected, but managed). Intense and painful gas. bloating. Brain fog. Poor Performance on Balance Test. Weak fingernails with pits (I was told this reflected poor absorbtion of nutrients). For the past three months: Migranes More noticable brain fog. Chronic Urticaria. Once the Chronic Urticaria (hives) kicked in, and having seen 7 different doctors to no avail (they simply said "IBS" after I tested negative in a blood test and colonoscopy), I self-diagnosed some type of gluten intolerance (I notified my doctor before starting the diet) and began a 100% gluten-free diet. The Hives cleared up in 2 days, and I've taken 1 probiotic in 3 weeks and have had much more normal digestion than I ever had in the past 2 years (I had been taking 2 Probiotic Pearls a day for half a year, and before that 1 a day). I'm still learning which things to avoid (I've accidentally glutenated myself a couple of times...and Udi's products cause most of my symptoms to return), but on the whole my life is much improved on the diet. One thing that I've noticed is that since starting the diet, I've needed a lot more sleep. It's fairly normal for me to sleep nearly 10 hours. One day I stayed home from work and slept almost 20 hours for that day (I was, however, on anti-histamines because the hives had returned thanks to a so-called "gluten-free" option at a local resturaunt). So a few questions: 1) Does anyone have any tips on how to navigate going to the doctor? I've been pretty frustrated by their inability to put two and two together. Not to be offensive towards doctors, but I have seen 6 of them! 2) Has anyone else had this over-sleeping experience? I figure that my body is trying to heal itself and that's causing me to sleep so much. What are your thoughts?
  12. Hi! Boy am I relieved to have found this forum. I need help! I just started playing with baking totally from scratch (no mixes) and decided to attempt cobbler topping. Even though I thought I did everything according to the recipe and ratio instructions online - from reputable sources like gluten-free Goddess - it did not come out at all like I'd hoped. What I was picturing was crisp/crumbly on the outside and soft/tender in the middle. It came out kind of dense and very rubbery/gummy. We all know how time consuming and expensive these experiments are and I'm also dealing with severe chronic Lyme so I can't just whip up another batch. Any help would be really appreciated! I haven't been able to bake in a long time and really missed it. Then I discovered that if I break recipes into segments, over a few days, and do a lot of the work from bed I can do a project once in awhile! It's such a joy for me. But each project is such a production I can't do more than one every month or 2. So I really want to maximize my efforts and get a recipe as good as I can before I put all that precious energy in. Sorry for the long story, just wanted you to understand my world a little :-) So here's what happened (if anyone's still reading ;-))... I found gluten-free Goddess' cobbler recipe and was going to basically follow that, using the flours & starches I had on hand. There's also an article on her blog that describes how to make your own flour blend, what ratios to use, etc. She says 40% whole grain and 60% starches and gives a list of what falls into which category. But, her cobbler recipe did not match this ratio so I wasn't sure which to follow! I ended up going by the 40-60 rule. I also decided to bake the topping separately from the fruit because I've had trouble in the past with it getting soggy after a couple days. Topping recipe I created following the "rule": 40% sorghum and almond meal 60% tapioca starch and cornstarch So for flour mix, used: 1/2 c sorghum & 3 Tbl almond and 1 c tapioca & 2 Tbl cornstarch 1/2 c coconut palm sugar 1/2 tsp salt 1 tsp xanthan gum 1 3/4 tsp baking powder 1/3 tsp baking soda 1/2 c butter, cubed 1 egg Splash vanilla 1 c milk I mixed dry ingredients together, cut in butter using food processor. Separately whipped egg, added vanilla and milk. Stirred all together til just combined. Batter was wetter than expected, sort of between biscuit dough & pancake batter. Poured into 9x13 and baked at 350 til done. Now here's her original recipe (which doesn't follow 40-60 rule): 1 cup sorghum flour or brown rice flour 1/2 cup almond meal 1/2 cup tapioca starch 1/2 teaspoon fine sea salt 2 teaspoons baking powder 1/2 teaspoon baking soda 1 1/2 teaspoons xanthan gum 1/2 cup organic cane sugar 1/2 teaspoon bourbon vanilla extract 6 tablespoons of light olive oil or melted vegan butter spread 1 egg replacer (I used Ener-G Egg Replacer) 1 1/4 to 1 1/2 cups unsweetened So Delicious Coconut Milk, or hemp, almond, or rice milk Thanks so much for your help!! I really appreciate any and all input :-D
  13. Hi, all. I've just started my 4th week gluten-free. I haven't had any diagnosis, tests run, etc., but gluten-free seems to be working for a lot, if not most, of my health issues: vertigo, migraines, excessive fatigue, severe menstrual issues, severe bloating, etc. I could go on with the list, but I won't. It wasn't as if I had a plan when I started eating/living gluten-free. I've always wondered if a gluten-free life would make me feel better. After reading an article about someone with decidedly similar health issues who was diagnosed with a severe gluten sensitivity, I made the final decision to do this; and so here I am. Being in the profession I'm in, I've been able to find most of the gluten-free life information I needed to make this change happen. The kitchen and bathroom have been purged of gluten and scoured. I'm reading labels until I go cross-eyed. Since I was already lactose-intolerance, the dairy elimination has been something of a non-issue for me. I've never been a fan of eating out often, and I like to cook; so food prep is working out fine. The first three weeks weren't necessarily the easiest I've ever experienced; but they were valuable. When the vertigo disappeared within days of going gluten-free, I knew this had been a good decision. I honestly don't remember the last time I felt so good! And then . . . this past weekend happened. I went out shopping, touched all sorts of fun things, washed my hands using commercial liquid soap in store restrooms (what was I thinking?); and by Saturday night, I felt like I was dying--awful stomach pain, a return of the vertigo, rounded out with constipation. I didn't eat anything that was prepared outside of my home during the holiday week. So, I'm a bit stumped. Can a glutening happen so quickly, so slyly that you never quite figure out what happened? (The only food that contained gluten on Thanksgiving Day was a pumpkin pie brought to the lunch by a friend. I used a separate pie-cutter for it, and didn't let it touch anything else.) I'm finally starting to feel a bit more like myself today, except for lingering vertigo and headache. Anyone have any thoughts, suggestions?
  14. Not sure where to begin... I'm 57, had BC 3 yrs ago (Double Mastectomy, no Chemo or Radiation) and diagnosed with Lupus last year. I tried gluten-free a couple of years ago (because so much cancer info I read suggested it) and lasted all of 11 days. During that time I felt HORRIBLE, flu like, but going to the bathroom seemed to be what it ought to be. I began bioidentical hormone therapy with a top specialist in that field a few months ago and the depression (that accompanied the 20-25 hotflashes per day) is gone. This doctor said that if I had such a strong reaction when I tried gluten-free, it would probably benefit me to do it. So, I'm here now at about a month. Some feeling sick about the 2nd week, but not as bad as the time before. However, although I never got stomach problems before from wheat, now that I'm "off" it, if I have a little bit somehow (like about 5 of Arby's curly fries must have had it), I BLOW UP (gas, etc.) Is this because my gut was all leaky before and the big molecules were just dropping through, messing me up but not causing discomfort? And now it does cause problems because the lining is smoother and the big particles can't just drop through like they used to? I'd rather not mess with testing as we have a $5,000.00 deductible, this hormone specialist is costing a lot (out of pocket), and we just can't afford it. Does my situation sound like Celiac or just "leaky gut" that has probably resulted in poor absorbtion leading to the other health problems? This diet IS a pain to me: I have two special needs girls whom I homeschool and it's hard to fit in all the cooking. My family will NOT eat gluten -free so it adds that much extra to do. I'm wanting regular buns on sandiches when I need to eat out, soft, fluffy rolls that are set on the table at a restaurant...I want to be in denial, I guess that this is what I need for my health. I hope this is the place to post this. I spent a lot of time looking for a gluten-free support group for adults and was directed here . I could find no other online group for adults on Gluten Free that weren't labeled as for "Celiacs). I live too far out in the boonies and am too busy to get to "local" groups. I appreciate any help anyone can give me with my confusion. Thanks, tklp
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