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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Yeah, that's what I thought. I told her this as well, but she seems to think that the test should show something - and the endoscopy will pick up something if my intestines haven't healed (which it sounds like they haven't).
I avoid soy for the most part, most meals are dairy free. I haven't noticed any worsening symptoms depending on whether I eat dairy or not. In fact, sometimes it doesn't even matter IF I eat. My tummy is awful (usually in the morning). I've had a persistent dull ache in my right side for the last month.
Hence why she thinks Crohn's is also a possibility. But, I don't have diarrhea.
I just hope they can tell me something it's been so frustrating with people not believing me.
So after a bad 'flare up' of something last month, I called the doc and told him. I've had issues on and off for years with my BM's, but this was exceedingly bad. He sent me back to the GI (last time I went was 3 years ago - they wanted to do a colonscopy then, but couldn't tell me if it was safe while BF, and it didn't seem a big deal then). Saw a new Nurse Prac., and she was amazing, and asked all the right questions. I explained all my issues over the last few years, even back to when I was 9 and complaining of a tummy ache everyday (it was at that point I stopped complaining, no one cared). She thinks at the very least, possibly IBS, probably Celiac and/or Crohn's. She ordered a blood draw to check for a bunch of stuff, including the Celiac and Crohn's markers. I go for my upper and lower endoscopy on Wednesday, finally.
But... I've been gluten-free for a year. When I asked my GP for the test, he didn't think it neccessary. I couldn't afford to go to the GI at that point. And since I felt so much better being gluten-free, I just gave up on a diagnosis. What started me back down this track is my symptoms coming back. When the cold hit, my arthiritis came back so incredibly bad. Everyone kept telling me it was stress. Then my stomach started back up. Of course, I've been basically pain free again, but I started my anti-inflamatory soon after the pain started. Now I've been off it for a few days, of course its back again. The arthritis is weird though. It... floats?? It's random, doesn't stay in the same place for more than a few hours.
I don't know what to think. I won't get a positive diagnosis for Celiac's a year after being gluten-free right??
I would call them and let them know that you did wind up with a rash. My friend's little boy had a similar problem, with 'cockroach' on the SPT. They had her measure the size of the rash and took that as a reaction.
Yeah, I've been reacting severely to even the tracest amounts of gluten. The reaction is ridiculous, lol. But, yes, you could have developed a dairy problem as well. I, personally, am having a sudden severe issue with egg of all things. I've always had a little trouble with them, but now I can't eat eggs (unless they're baked into something, go figure). So odd.
Allergy testing is not always accurate. It really only gives the chance that a reaction may happen. There is a small amount of people that allergy testing does not work for at all (something like 5% of people). Skin prick testing is more accurate, but not the end all be all. For some, it works fantastically, for others, not so much. We have a 3 year old girl in our local allergy support group who tests negative on EVERY test - and yet is anaphylactic to dairy, chamomille, grass and more. The only true, definitive test is reaction. Her Mom has the same problem (not responding to any testing) - and lived with food allergies and their consequences for decades because the doctors said her tests were negative (it wasn't until she was nursing her daughter and had to go on an elimination diet that she figured it out - amazing how all those odd symptoms go away, lol).
For myself, I've never tested positive to anything either. It's rather frustrating because the doctors didn't believe me about my issues either. I had to take matters into my own hands.
I know how frustrating it is. But, it might be very likely that since you had zero reaction to the SPT, you may not get many answers from the RAST test either.
My doc gave me (forgive me spelling!) Meloxicam? It's an anti-inflammatory. It worked yesterday, thankfully! Today I woke up mostly pain free. I was glutened a week ago today. I have zero interest in taking liver and body damaging pills for forever and a day!
I'm just so tired of being in pain and tired. I know that I can't just take a pill and be OK. My gluten sensitivity (or Celiac, whatever) is obviously linked to this, since I'm fine so long as I stay gluten free - and make it to the gym a minimum of 3 days a week, lol. I think that's probably why it was so bad this time. I've been potty training my 2 year old, and only made it to the gym on Friday.
Thank you very much for the advice. I feel like I'm just not taken seriously, and I'm really debating on taking this to my doctor. I AM writing down my symptoms EVERY day (even if there aren't any!), any known glutenings, etc. He wouldn't give me the Celiac test so... Though I know that its not always accurate. It just leads me to believe he's going to say its something else... and I'll need to find a new doctor.
My co-worker is seriously considering going gluten-free as well. She said she would have a hard time sticking to the diet... my response was "if you tried it for 2 weeks and your pain went away, then it would be worth it, wouldn't it??" She agreed. I'll give the doc a call on Monday I think. Schedule my yearly physical. Go over what's been going on, and hopefully the insurance company will pay for the testing...
Is that possible?
I know that autoimmune diseases can run together (though I am not diagnosed Celiac, I maintain that I'm highly allergic b/c I do suffer BADLY with even the slightest cross contamination!). And 2 co-workers want me to get tested for RA. I have not been tested for ANYTHING. I'm getting really frustrated with the lack of concern... because to me, this seems like cause for concern when I am not even 30 years old.
So, I cut the gluten out in October. I had horrible pain, mostly in my right hip. But my joints would ache, and my knees have made noise for years. The hip pain may have distracted me from other pain, but my legs always hurt (in fact, when I use to manage a theater, I would go home in TEARS my legs hurt so bad after an 8 hour shift, I was only 24). My hands as well.
Well, now if I get glutened, the pain is horrible. It takes a few days, but I've tracked it down, and can tell you how long it takes before I'm hurting. That night, I'll start with a mild headache and a slight rash. Next morning, awful migraine. The next day, the awful hip pain returns. Day 3, all over pain. Hands, knees, legs, feet, shoulders... everywhere. Day 4, wake up feeling like I have fluid in my hands, knees, elbows, right hip, right shoulder, both ankles. Soooo stiff. Day 5, getting back to normal, but still stiff... Day 6, back to being horribly stiff. I had to take an anti-inflamatory pill this morning for it. My back is soooo achy as well.
It's just so ridiculous how much PAIN is involved! It was my hubby's fault, he forgot to wash his hands... it happens about once a month, takes me 2 weeks to get back on track (and have my sparkle back ).
Asking a co-worker who has RA (and suggested I get tested), she said her symptoms started out quite similar. She is not gluten-free, and is on meds for it.
I just don't think I can handle more of this... I know as long as I stay gluten-free, I remain symptom free. I just feel lately like I'm fighting an uphill battle with my own body!! Why does it rebel against me??? And this happens the same way every time I get glutened from the teeniest, tiniest amount of CC.
I made this, but subbed all purpose flour, tapioca flour and some sorghum, plus aded a little xanthan gum to keep it together. It turned out great! Nice and spongy, springy! Glad to have something quick to make, cause I am so tired of making a loaf of bread twice a week!!
OK, here's what I did... I really got to start writing this stuff down, lol.
Measured 1 1/2 cups bob's gluten-free ap flour, added tapioca flour to make 2 fulls cups (all together, so 1/2 a cup of Tapioca)
1 package of yeast, 1/2 tsp of xanthan gum,
3 T of sugar, combine all in a large bowl. Add warm water and 1 tsp of salt. Beat with an electric mixer on low to medium sped for 30 seconds (I did it by hand). Using a wooden spoon, mix in 2 more cups of gluten-free AP flour. Knead in enough of the flour to make a moderately stiff dough that is smooth and elastic. Cover and let rest about 10 minutes. Grease a baking sheet generously while waiting. After the ten minutes is up, divide the dough into 12 portions; shape into smooth balls. Punch a hole in the center of each and pull gently to make a 2 inch hole. Place on prepared sheet. Cover and let rise for 20 minutes. Broil bagels 5 inches from heat for 3-4 minutes, turning once (the tops shouldn't be brown). Meanwhile, in a deep pot, bring 6 cups of water and a tablespoon of sugar to a boil. Reduce heat, and simmer bagels 4 or 5 at a time for 7 minutes, turning once. Drain on paper towels. Place drained bagels on a well-greased baking sheet and bake in a 375* oven for 30 minutes or until tops are golden. Makes about 12.
Of course, you can add whatever you like too. Raisin, cinnamon, onions, etc! Yummy!
I made Devil's Food cupcakes a few weeks ago, same cookbook. I just sub what I need to (usually adding corn starch and tapioca starch), and some xanthan gum. The cupcakes were divine! I took them to work, and everyone that was brave enough to try the weird gluten allergy girl's baking thought they were great, lol!
I swear, my best cooking guide is my old Better Home & Garden's cookbook I got for my wedding!
I pulled it out today, and made bagels! It took me nearly 2 hours, but they rose, and they baked, and they actually tasted good! Now I want to make some 'kid' friendly ones, different flavors, etc. It was labor intensive, but easy at the same time. My DH said "hey, you're getting really good at the gluten-free cooking stuff", and he usually doesn't pass out compliments, lol . They took 2 hours to make, and they were GONE (all 12 of them!) in 20 minutes!! DH & I had eggs and cheese on them, next time, sausage . Nothing cheers me up quite like making food that is gone quickly .
I love your story! So glad you figured out the cause of your family's problem. I just discovered in October that both I and my 4 year old son have a gluten allergy. I'm 75% sure my Mom also has a problem, and relatively sure my Dad has a problem as well. My symptoms were so vague, and seemingly unconnected. Severe nausea, joint and muscle pain, allergy fog (I'd had it so long, I honestly thought it was NORMAL), I had pain in my hip that was so bad I almost had surgery on my back b/c of it (it was a debilitating pain that would make it nearly impossible to run, walk, climb stairs, carry my 2 year old!!), severe fatigue, constant hunger... I'm sure the long I'm gluten free, the more I'm going to notice. I am not diagnosed with Celiac, though my doctor refused the test and simply recommended I try the diet. It worked, and now I cannot see going back on the painful food to get an accurate test done.
I really wish my Dad would try this. He's a diabetic (diagnosed at 7), has had kidney disease for years (has had 3 transplants actually), numerous other health problems that I can't even list cause it would just take too long! He takes a ridiculous amount of medication everyday.
My Mom is planning on going gluten free, and I really hope she tries it. She suffers from depression, insomnia, and lots of other stuff.
Congrats on finding your 'cure'!! I know how good it feels to not feel like crud anymore
Ha Ha! The sad thing is, he asked for help - and the lady handed him the tartar sauce! WtH? Whatever...
Yeah, I made chocolate waffles with some cocoa I had in the cabinent. Put some peanut butter on them, and they were super yummy and filling! As far as dinner goes... I'm still at a loss. Hubby will have to improvise .
So, I've got no money to get to the store, so I need to make something with what I Have on hand.
I've got no yeast, of course, except one packet that I'm pretty sure is nasty bad, lol! I found it hidden under some stuff in the cabinent - and there's no way I'm using it (it doesn't feel grainy, it feels mushy).
So, I've got Sorghum, Tapioca, Garbanzo and Bob's Red Mill All Purpose gluten-free Flour. Oh, and corn starch. Eggs, almond milk. Sugar. Brown sugar. No cream of tartar, cause I asked my hubby to pick it up - and he came home with tartar sauce .
Any ideas or recipes?? My kids are bread-aholics, and I don't know how we didn't get enough groceries for the week!! We're even down to our last 2 apples (which they are currently eating, lol). I've got to work tonite, and I want something to feed them besides hot dogs...