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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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About Woolygimp

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  1. I've started eating grain free because I have Sjogrens (an autoimmune condition) and celiac disease. After over two years on a gluten free diet I wasn't getting better... Eating grain/dairy free has really been a big improvement for me, I feel like I have a lot more energy, my Sjogrens has died down a lot, and I feel much less inflamed.
  2. I didn't have insurance at the time and was around 20 years old and remember thinking that they'd have to take me to court to get that money. I'd have paid something reasonable- and maybe $500 or so without much fuss, but not 8k. Not for a medication refill. The only bill I've torn up and refused to pay.
  3. Well I'm feeling great. I don't remember my thought clarity being this good, or having this amount of energy...ever. I went from barely being able to walk from one side of my house to another, struggling to lift my arms, swollen facial skin, asthma, and just generally extremely poor health and now I feel awesome, and the only thing I changed was my diet. Today I started running again... something I haven't managed to do in nearly 8 years. I have diagnosed Sjogrens, along with Celiac disease, and my salivary function/skin/eyes felt great and were very watery, something I can't ever remember them doing. Normally I'm use to dealing with the excruciatingly dry mouth but it's been gone. Definitely holding my breath and hoping the improvements remain. Was gluten free for years. Didn't help. Cut out dairy a few weeks ago, improved a lot... but relapsed immediately if I had any whatsoever. Stopped all grains and improved again but I'd have bad days and good days and was generally inconsistent. Took a few days of a food diary to find out what was causing the inconsistency and still causing me to feel poor. High Fructose Corn Syrup. Apparently I'm allergic to it, along with just a couple dozen other foods, including all grains. I assumed that it was like distilled vinegar and "safe" and never really even considered that there was a possibility that I was reacting to it. I knew it was main from corn, obviously, but I didn't think that there were any residual traces of corn in it, or not enough to cause me to react. But I was reacting to it. It's even innocuous because a LOT of fruit beverages, especially fruit punches and even orange juice have the stuff added to them so you have to be pretty diligent with identifying it. I have grown to absolutely loathe this country [America] and our government because of things like this. HFCS is in every food/beverage that we consume because of our unnecessary subsidies of corn and other grain crops. Beverages most other places in the world are still flavored by sugar, which while unhealthy is at least known to be safe. But NO not in America, we're going to flavor everything with corn... which is not only a low quality sweetener and tastes terrible, but is much more dangerous for you, especially those with allergies to corn, than the alternatives. And to heck with doctors too. I was sick for eight years and they had no solutions to any of my problems. Every visit, every medication was a massive waste of time and money. Sorry, I had to rant... I'm just very upset the last 8 years of my life from 17-25, my best years, were wasted because our government doesn't give a damn about the health of its citizens. We can't even get proper gluten free labeling laws passed. I'm not one for conspiracy theories but there's no way that nobody in a position of power, authority, or in a medical field knew about what food could do to you if you develop antibodies to it. They've been herp-derp about gluten sensitivity/celiac disease for over 80 years without ANY progress, even though it's been linked to every autoimmune disease imaginable and is probably one of the most common ailments in Americans. But no, banning stem cell research and online poker are more important. I stopped by a local hospital to get a quick refill for a medication, sat in the waiting room from 11pm to 2am, then spent another 45 minutes in the doctor's office waiting. He walks in and says, "refill huh?" I said, "yeah" and it took him 15 seconds to scribble the Rx out and then he says, "have a good night" and walks out. I got billed for $8,500. Sometimes I feel like we're still in the bloody stone age. /rant off and sorry for the language.
  4. They should be safe, unfortunately it's not just gluten that give most of us problems. I thought it was for me and wasted 2+ years doing a gluten-free diet by the book without improvement. Corn & Dairy were big offenders that I always thought were safe.
  5. My Doctor Is An Idiot..

    If it makes you feel better, I was skinny my entire life. When Celiac disease "started" around when I was 17 I literally jumped up from a lean 140-145lbs to 190lbs in a month. Keep in mind that I had NEVER weighed over 150lbs before that point. So I gained massive amounts of weight, at least for my size, when I got "sick". Everyone around me thought I was taking something, I'm sure because I had completely changed within a month. All the information outdated and erroneous information that says "gluten allergy", which causes celiac disease, only causes weight loss and malnutrition is exactly that. Bulls$#&. Celiac causes weight gain in many; for instance when the antibodies form many develop thyroid/pituitary disease and that alone can cause massive weight gain. It's literally one of the most common and understudied diseases, and now it's starting to come to the light that this may be the basis for all autoimmune diseases. Anyway, I caught mine too late and I developed Sjogren's so a diagnosis is important. Find a better doctor and then there's still Enterolab, which was held in very high regard around here and I'm sure still is?, that does DNA testing and is very accurate run by Dr. Kenneth Fine. They check your stool for antibodies, which supposedly is a lot more accurate than blood tests, and also for DNA sequencing that indicates whether you have the gene. I had both genes. I'd also stop with milk. I'm telling you, I love milk and I ate a "just gluten free diet" for a long time and the milk was DEFINITELY preventing me from being healed/causing additional damage. My casein antibodies were 3x higher than my antibodies to gluten, for instance. I'm back down to 175lbs right now but I'm going grain/dairy free to see how things go.
  6. When I first started the diet, after a few days of eating nothing but beef... I had felt better than I ever had. I felt like I could run 10 miles, my awareness was through the roof, and for the time in seven years I felt amazing. I didn't have any muscle pains, exactly the opposite, and I don't ever recall having THAT much energy. It felt great. Then things have gone down hill. First I ate some nuts and that was the last day I felt good. Then I ate some dairy a few days later, a few pieces of cheese etc. and blah. I haven't felt that good in 24 years so something did it. I only hope it's a lasting change once I get things sorted.
  7. If autoimmunity is caused by increased permeability, which I'm almost positive it is, then have you seen people with RA/Sjogren's/autoimmunity improve w/ this restrictive diet? Both me and my sister developed autoimmunity and massive allergic problems to food I've NEVER had problems with in succession to Celiac disease. Our intestines were wrecked and it didn't take long for me to develop Sjogren's and her to develop Rheumatoid Arthritis. Almost positive both were caused by undiagnosed celiac disease.
  8. I just don't understand why I'm the only person here that reacts this way to food? It's not like a generally feeling of malaise, it's literally being zombified after eating something that I react to. It may be a combination of anaphylaxis (cause of low blood pressure) mixed with my general fatigue to produce a double whammy effect? I don't know. That or my pituitary is being attacked and my body can't supply enough cortisol when I'm being "stressed" by introducing an allergen and I'm getting massive fatigue from very low levels of cortisol? That would explain the weakness but not the muscle aches?
  9. I've been gluten free for over two years. All my gastroinestinal symptoms resolve immediately after going gluten free, and return (along with DH) everytime I'm glutened. I know when I'm glutened and these reactions that I have to these foods are definitely not the same reactions that I get when I'm glutened. A reaction to gluten can take 3-14 days to resolve, sometimes longer for the DH to disappear. The reactions I have to these foods last about 6-24 hours, maybe a tad longer, but instead of having any gastroinestinal issues, as I would with gluten, I instead get MASSIVE fatigue, inability to think, crushing weakness, and literally it feels like the blood is draining out of my body.
  10. It took me nearly 15 minutes to get off the floor to type this out. Everything I touch, eat, drink makes me sicker and sicker. I can go from feeling fine and energetic when I don't eat to literally crying in pain, unable to walk, collapsing on the floor because my muscles ache so much, everything feels massively inflammed, muscle weakness so bad that I can barely lift my arm. Every diet recommends Fish, Eggs, or all this other food that I can't tolerate. I'm pretty sure it was less than 3 fish oil capsules that did this to me. These extra foods aren't intolerances because I don't get any gastroinestinal symptoms from anything but gluten. I don't think they are allergies because I've never seen "massive inflammation, muscle weakness, fatigue" to the point where it's crippling as a symptom of a food allergy listed anywhere. I'm having a hard time finishing any of the diets when most of these "recommended" foods make me feel like I'm dying. Fish. Eggs. Nuts. Avacados. Grapes. Then there's grains and dairy, which I KNOW I react to because I have gastroinestinal symptoms and confirmed celiac etc. but even though they make me feel bad, they don't make me feel NEARLY as fatigued/poorly as fish, eggs, nuts and the other foods do. Except it's not just food but it's medication too. I'm only 25 and I have celiac disease, sjogrens, chronic prostatitis (probably inflammation related), low testosterone (I get test flu after every injection from the benzyl alcohol?, I can't even take hydrocortisone without it making me pass out for hours. It's made me discontinue every medication except the testosterone. I couldn't even tolerate androgel. EVERYTHING I touch makes me feel run down. Literally, the only thing that I feel comfortable eating is chicken and olive oil. Fish is the worst for me, and it's a staple food where I'm from. I grew up on seafood and now literally any bit of it will make me feel like I've lost a ton of blood pressure, and literally make me sit in bed for days unable to move - almost in a dream like state. When I'm like that, it literally feels like it takes more energy and willpower to pick up my arm than it does to benchpress 100 lbs on a good day. Literally, picking up my arm when I feel like that feels like they have 50lb weights attached to them. My life has been in a see-saw. I'll feel bad, then some days REALLY bad, then some days AMAZINGLY good. Albeit the bad days are far, far more common the good ones. But I don't know. I'm lost... maybe I'd be better off if I let the Dr. put me on a ton of prednisone. I'm losing faith fast and I need some encouragement and I'm finding it increasingly difficult to follow a restrictive diet when most days I can barely get out of bed and most of the recommended foods cause me to feel worse than when I've been glutened... Sorry for the rant, I just really needed to vent. Friends and family members aren't really willing to help because I put on a good enough "show" that they think I'm healthy, especially since I usually only leave my house on the days I feel well.
  11. I was never officially diagnosed with Sjogren's. The symptoms seem to come and go; before my diagnosis my mouth/eyes and such were extremely dry, but as of now when I'm typing this my eyes feel fine, my mouth has plenty of saliva in it (not as much as other people), enough to where I could drool/spit if I felt so inclined. However, the worst is in the mornings. I'm pretty sure it's Sjogrens but I don't think I have it AS bad as others; that or something is helping.
  12. I had very bad DH on my chest and back prior to diagnosis with celiac disease, but I've been on a gluten-free/CF diet for around a year and a half to two years now and the DH issues have not resolved themselves. It's nowhere as bad as it use to be prior to gluten-free and I notice things such as seafood, V8, and a couple others foods cause a flare up. But even without flares, it sort of dies down for a couple weeks and then will come up again for not obvious reasons. I'm following the SCDiet and I haven't had any tomato juice, fish, or anything of that sort and it's still there. Not sure what to do at this point. I don't like having a rash all over my chest, back, and shoulders.
  13. Chatycady, how long were you on the SCD before you started noticing an improvement in dryness? And did you follow the SCD to the letter, or were there additional foods that you left out and additional foods that you included? For instance, I know for a fact that I can't have any milk based probiotics or even the home made yoghurt as I reacted to it.
  14. I have no problem eliminating grains, but on the SCD it asks you to eliminate all sugars which is much, much more difficult to do.
  15. I'll be resuming SCD diet. I've noticed that I feel terribly fatigued after eating any type of grains, especially rice. I also wanted to add that I started taking a medication called LDN (low-dose Naltrexone) and I feel MUCH better. There's a ton of literature out there but it has been shown to help people with all forms of autoimmune diseases by adjusting the T-cells. It has also helped people with Celiac disease. The dryness has definitely abated a good amount since I started this therapy. Here's the Wiki: http://en.wikipedia.org/wiki/Low_dose_naltrexone Here's a good source of information. http://www.lowdosenaltrexone.org/