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
I have had this, and I have no clue what it is either.
It is like a sunburn feeling without a sunburn.
I first noticed it when I was pregnant, like 7 years ago..and I would get it once in a while..and as you said, it would last from 24-48 hours and go away, but what just so annoying when I had it...and uncomfortable.
I started to figure out it would happen where maybe I strained a muscle or something and then I would get that nerve sensation. Like if I am raking leaves in the yard, maybe I will feel it on my hand the next day for a few hours. I have been gluten-free almost 3 years now, and since being gluten-free maybe it is less, but it will happen every now and then. At first I would freak out with worry about it, and then my mom told me she gets it too, so I just kind of forgot about it.
Since I was diagnosed, I have been trying to urge my family members to get tested. One sister has it, the other tested negative by blood. Mom neg by blood. And then my dad (who I suspected was the culprit) finally got tested. He has had a long history of reflux and digestive issues, and had his gallbladder removed in the late 90s. Also has a history of low iron.
So, my dad finally goes to get the blood work done. Positive. He does it is a second time to confirm. Positive. He gets an endoscopy. Negative.
Since the beginning of the summer my dad has been basically carb-free, lost weight and feels great, but he made sure he ate gluten for like a month before the test, daily. He told the dr he hasn't had reflux, etc... since going carb-free or carb-light, I should say.
Anyway, I was there when he had the test done, and the dr told me how he did test positive by blood, but only one of the 4 things they tested were positive the other Ttg was negative, I think that is what he said. I thought he seemed arrogant and kind of rubbed me the wrong way..especially when he told me dad just to take Prilosec...what, forever???? What kind of cure is that? He also said his villi seemed a bit "fat" which I have not heard of before.
So, today my dad goes in for his follow-up and is told he does not have celiac, yet he does have Barrett's esophagus from years of reflux. And his solution....take iron, take prilosec.
Of course, my dad is happy he "does not" have celiac. But I am very skeptical. And I hate that the dr just said to take a medicine to cover symptoms. I mean reflux come from something, so does low iron, and with the fluctuation of the testing, I just don't know what to think.
I just had sushi last night, and the first place we went to, we ordered, got our drinks and then he waiter tells us there is wheat in the seasoning they put on the rice for the sushi. Ugh...so we left and went to another sushi place. I was shocked and never would have expected it in the rice. I posted it on Twitter and others responded that they had, had similar experiences, so be sure to ask about anything being added to the rice.
Maybe I am the only one who feels the opposite, or maybe I just snacked more before?
I definitely can tell that if I add protein, like peanut butter, I can last longer, and if I have a bowl of cereal, I won't last very long...but I feel like my window of not having to eat is much shorter now than when I did eat gluten. I wonder why this is? I am not a meat eater, so maybe that is why, but I wasn't before either. I just had all my bloodwork done and that was all good, and my celiac numbers are negative too. I try to make sure I always have nuts or fruit on me.
I am the opposite, I notice I can't go nearly as long as I did pre-gluten-free, and this is after a year and a half....but I think it has to do with having too much refined flours and no more whole wheat, and I know for myself, I have to try hard to balance out with protein and fats in addition to the carbs and then I am good for a few hours. If I have a carb-heavy meal (full or rice and potato flours), I will need food sooner afterwards.
I second the Kind bars...I don't like energy/protein bars either, but I love, love, love the mango macadamia nut Kind bars, which I always keep in my purse at all times. Plus Starbucks carries them, so I always know in an emergency, I can pick that up at Starbucks for $1.99, though I can pick them up at my local grocery store for $1.69. Or, I will buy a whole box from a local co-op.
If i am at home, I will have a spoonful of peanut butter or mix greek yogurt with peanut butter and dip apples in it...so yummy!
Thank you, obviously I know I will always have celiac, but I would like to know I am doing the right thing. And I will continue being gluten-free forever, trust me, I know how awful it is to accidentally get it and I want to avoid that at all costs.
I actually emailed these to my GI dr and she said as long as the first one represents TTG it is good, so I am going to call back my dr today to find out. This also makes me happy since I do eat (gluten-free) oats once a week, so I know they are really gluten-free like they say.
I went in for my one year celiac panel...or more like 1 1/2 years. I was supposed to go a month ago, but I was glutened, so I waited 30 days, because I figured it would be a waste to take the test after knowing I have gluten in my body.
So, I called today and asked the nurse to read me my results..obviously she didn't know what any of it meant, and I just had the tests done by my GP ay my annual physical (she is the one who diagnosed me in the first place) to save me a trip to the GI which is an hour away.
Overall, she said it was negative, when I asked for the numbers, I got this:
TTG AB IGA <3
Endomysial screen - negative
Endo titer <1:5
IGA serum - 165
Are these results I should be happy about? If someone could let me know exactly what I am looking at and how to interpret it I would really appreciate it!
wow, i actually had to look who wrote this, because i thought it might have been me. i could have totally said these words! just like you i read labels carefully, and now i will eat anything that says gluten-free...which is so unlike what I used to be like.
and like many of you said....before i was diagnosed, i was trying to loose weight and it melted off, like 15 lobs super easy, i was so happy, and then about 3 months after going gluten-free it started to creep back up and now i am like 20lbs over...and so miserable about it. i actually rote a blog post about it today on my blog..glutenfreemusings.com, about this very thing.
it is like if i see something that is gluten-free, i have to grab it right there and then, because i am scared it might not even be found again
First, I find it interesting that before I was diagnosed I have low cholesterol, and then I get better and it is high. Though I did have it high before as well, and it runs in my family.
My doctor suggested taking fish oil. If you read my other thread you will see I am debating going back to meat, but taking fish oil still grosses me out...especially taking farm-raised fish oil with concentrated levels of mercury, etc... I know there are some brands at Whole Foods that are from Alaskan fish, but wow these are not cheap! So my question is....can I still get the benefits from taking flax seed oil?
Does anyone take flax seed oil for high cholesterol? And is it helping?
Thanks for everyone's input, it is really helpful to read everyone's personal situation.
T.H. Unfortunately, while i LOVE quinoa, my stomach can't handle it anymore, so I can't eat it, and because of that I have kind of stayed away from amaranth, because the stomach ache is so horrible with quinoa, I am terrified the same thing will happen.
I should clarify when I said i don't want to put "all that" in my body...I meant......basically any illnesses the animal has, antibiotics, etc...
And yes, when I go to events, BBQs, I usually take my own food, or eat beforehand, and since I only want to eat "happy" meat if I eat meat, I doubt that is what I would find at a BBQ anyway.
Sometimes I wish I could be like most people out there and not think so much about it and just eat it.
I do have low b12, or I did. I took injections last year and now take it orally a few times a week to keep my levels up, so I am sure meat wouldn't hurt after being a veggie for so long.
I felt the same for a long time, that is why I posted this.
I know I would never ground beef...no way! Unless it was farm-raised and the butcher ground it on the spot.
The only meat I have eaten this year has been farm-raised, local, organic meat and i think that is the only way I could do it. I don't think I could stomach the idea of eating mass-farmed meat from the big grocery store.
See, I am queasy about the fish oil pills, and have been wondering if flax seed oil would help the same way?