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
It's good to know (for me) that you have to take such hefty meds - I've upped my dose a bit, and that has helped.
I haven't seen a doctor for this because, unfortunately, I've had a lot of doctors treat me like a hypochondriac. I mean literally, years of me complaining about extreme period pain, and no communication was given to me about what it could be. No tests, nothing. I had a bad doctor when I was a teen living with my parents, and that has put me off. Now I have anxiety whenever I go to a new doctor, because sadly, I feel crazy, like they'll assume I'm making this stuff up. I tend to get teary eyed when talking to a new doctor because my anxiety levels get so high, and that's not like me.
I did seek help from a GI doctor recently (a month or so ago) due to a long term bout of stomach pain after every meal, and all she did was take a blood test to see if I had ingested Celiac. According to multiple people on this site, blood tests are almost like trying to take a blood test for arthritis - aka, yes, it has signs, but that is just a really roundabout way of looking for the actual problem.
Basically I'm a little lost. Would it be more beneficial for me to see an allergist or a Celiac specialist? Honestly, I am terrified that if I see a Celiac specialist, they'll have me eat gluten for the biopsy. I just.... I don't know if I can deal with that. I work a lot, and I'm trying to get a promotion, and can't perform well at all when I've been glutened. I haven't even been diagnosed with an intolerance, just IBS. My blood tests (I've had 2 now) always come back negative. Not to mention the fact that I work at a very low income job and can only afford so many different kinds of tests.
How do all of you deal with the doctors? With the various health problems? I'm so tired of self diagnosing, but I feel like I don't have good resources in the are.
Hello again everyone! It's been a while since I've posted, but I've run in to another problem lately and just wanted some feedback.
I was told that I have a casein intolerance and have since completely gone off of dairy. A few days ago, a friend had me try a dessert from Ecuador that had dairy in it (she's gluten free as well, so I knew it was safe as far as that goes). I had just a spoonful, but I've been having rash outbreaks on my elbows, abdominal area, my feet and ankles, and the majority of my back. I feel ridiculous, but I can't tell if it's hive s, DH, or something else. It could be a series of suspiciously placed mosquito bites, despite me staying indoors for the most part...
I've taken two benadryl since the night I tried the dessert, and my outbreak hasn't improved at all. Has anyone else run in to this? What do you take to help?
I have had it a few times, and I have a small reaction (So I go to the bathroom 6x per day or more, for a few days). I have a really rough time if I drink a six pack within a certain amount of time. Anywhere from a day or two to a week. If I have one every so often, it isn't as bad.
Overall... not that great, other than tasting good.
I'd recommend Green's. It is the only one that really tastes great. Everything else has been so gross or watery, that I don't even bother.
I think that wouldn't be too bad of an idea! I don't know how many cars we'll be taking, but maybe I can talk everyone in to letting me keep my own cooler with product from a Costco or Sam's Club or something.
I’m going on a family vacation soon, and I’m the only one with dietary restrictions. What grocery store would you recommend going to for gluten and dairy free stuff? Is there a really good family restaurant to visit? Any other recommendations?
I don't know, I hope not. I'm eating only at home, making my own food, and I have a 100% gluten-free kitchen. I'm thinking it might be because I had some gluten-free english muffins about 3 weeks after I was exposed to gluten and then found out they had dairy in them. I'm also strictly dairy free, by the by. I also have cut eggs and soy out of my diet because the soy is an inflammatoy thing and I'm always on and off about eggs. For some reason I feel like my diaphragm is agitated, and even laughing hurts for some reason. That's what concerns me. :/
Or maybe today I'm just emotionally spent and everything seems hopeless (I was so optimistic yesterday, DRAT)
Ugh I know that this should eventually go away, but I'm so, so tired of being in pain and having stomach issues (including loss of appetite). I don't have insurance until February... should I be concerned that it has been over 4 weeks and go to a nurse practitioner in a take care clinic? I don't expect any magical fixes, or anything other than "just make sure you drink plenty of fluids" but then again, I want a magical cure.
It is so, so, hard to give it up at first. Especially if you are the only one in your entire family/group of friends that has to adjust to this. It's okay, we have ALL had our weak moments, especially in the beginning. I can tell I've been exposed to gluten because I suddenly crave it, and I'm filled with a drive to obtain a Big Mac or some other poison. I also dream of eating the gluteny/cheesy things, and I usually get sick in those dreams and wake up after my dream self collapsed to the floor in a puddle of tears or "passed out" in a gluteny coma.
Don't be too hard on yourself for giving in. I'm both gluten and dairy free. When/if I get those cravings, I just remember what it does to me and will take out my craving for "poison" by buying something more friendly, like gluten/dairy free candy, or gluten/dairy free ice cream (So Delicious brand makes an INCREDIBLE coconut milk ice cream with gluten free cookie dough! SOOOOOO GOOOOD).
Another thing that helps me when I'm struggling with the diet, and am tempted to just throw it all to the wind, is that I tell myself "I feel better than I did yesterday". Or if you don't feel better than yesterday, say "I feel so much better than I felt last week and I will continue to feel better as I move forward".
Eventually, the risk just doesn't become worth it. Yes, that 5-10 minutes you spend tasting gluteny food may seem to feel good to your taste buds, but spending weeks in misery and pain just isn't worth the punishment.
Again, we allllll have our weak moments. Just do what you can each day to improve your diet. We all make mistakes too, and again, especially in the beginning. It's a learn as you go process.
If you ever want to know about some good replacements for dairy, feel free to PM me
To be honest, I'm no expert on any religion, so my advice may not be too useful. I tried to go to a Hare Krishna temple when I was newly diagnosed, and they provided such wonderful food. There were a lot of people there that were on a gluten free diet, but I was still so full of anxiety (mainly because I was so new to this and hadn't lost that symptom yet) that I was hesitant to eat anything. I can't remember if I got glutened or not. If I did, it was because I felt so guilty asking "is this safe" every time someone handed me food that they made. I haven't gone back since, sadly, because I feel a lot of shame for having to turn away food. I was also raised as a Christian but have turned away from that. For some reason, I worry too much that I'm not able to fit in anywhere, despite how much they welcome me, but that's my own self delusion. I just feel ignorant, and I want to defeat that.
My best advice is pretty cliche. Ask if you can bring your own food, provide money for special food to be made on the side, or ask if you can take charge of preparing your own meal. I honestly don't know how that works in the Buddhist community, but in my eyes, any religion or spiritual organization should be understanding of the human body and its limitations. Like you said
I'd actually recommend asking Forrest, this wonderful, wonderful Buddhist that I've been following for some time. He is incredibly helpful and answers questions with patience. Look up the Purple Buddha Project, and send him an ask. I follow him on Tumblr, but he has a facebook as well. He has really helped so many people through so many different situations and may be able to guide you through this.
I'd say though, go for it. A retreat of this nature is what I dream of, and I'd love to participate in something like this. It would probably take a lot of careful planning before hand, but, if this is an important journey for you spiritually speaking, then it is a journey worth taking. If you don't feel good about it, follow your intuition and stay home, but dedicate time for your own personal journey anyway.
The best of luck to you, let me know if you're able to go!!
Stay strong, you're making progress! The stomach grumbles are a sign that something is happening. I've been gluten free for 3 years, got glutened 4 weeks ago, and I'm experiencing the SAME EXACT THING. You aren't alone!!
I am also dairy free, along with my gluten freeness. I take Realfood Organics brand probiotics. It is plant based and vegan, along with being gluten free. It packs a powerful punch though, so try to make sure you have bathroom access.
I also started taking digestive enzymes yesterday, and while it has lessened my pain, I'm also getting nausea and gas. (Gas is normal. By the way, this goes away, I promise!) I don't know about it yet, but it SEEMS to be kind of helping? I really don't know, tonight was a bad night for me.
I also take 5,000 mg of L-Glutamine, and drink licorice tea before/after meals. Supposedly licorice coats your digestive system.
Just keep reminding yourself that you feel better than you did yesterday, or, if not, you feel better than you did a week ago. That, and that alone is what got me through my initial stages of going from eating anything I wanted to being strictly gluten/diary free.
Last but not least, seeing a nutritionist/dietician is the BEST thing you can do for yourself right now! I chose my nutritionist based on the fact that she was gluten free as well and understood what I was going through. It was her specialty, in fact. She took dairy away from me, but I feel a billion times better for it.
Someone at the health food store told me to take enzymes to combat my stomach pain (4 weeks after a glutening). I was hesitant, but when I did research online (yes, very dangerous), I found this:
So far, two days in, it seems to be helping a bit, along with 1 or 2 ibuprofen per day to help with inflammation. After my last meal (which was mostly protein rich), I'm fairly nauseous, but yay, barely any pain!! What has been your experience with enzymes? Is there a certain food you'd recommend having with this?
Sorry to keep harping on about my stomach pain after this one episode of gluten exposure, but, it has been a very long time since I was last glutened and the reaction has been pretty different from when I was new at this. Anything that messes with my favorite hobby, eating good food, stresses me out. I can't afford to lose much weight either.
With that being said, I could just see a doctor but my health insurance doesn't kick in until February and I am pretty nervous about finding a doctor that I can identify with, if that makes sense.
Thank you all, I hope you know that this website is a huge comfort to me, especially when I feel so alone in a sea of people who have the super power of being able to digest anything. <3