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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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I'm starting to feel better. Yeah! I think withdrawl was worse for me that how I would feel after a gluten fest. It was no fun at all. My headaches are pretty much gone and I don't feel exhausted anymore; that's probably why I'm not quite as grumpy now.

I have glutened myself already. I had an Estrella Damm Daura beer. It said gluten-free so I didn't read the label too closely until I was half done... It's still made from barley! No wonder it tasted like regular beer. I had been bracing myself for something with a beerish flavour but it tasted like beer. That's what prompted me to read the label, I guessed it was too good to be true and I was right.

I developed the stomach ache within 15 minutes and by time an hour was done I was very visibly bloated. I went to talk with dh and complain that I thought I'd glutened myself and he just stared at my gut before adding, "You better not be pregnant," in a half joking manner. I really did look pg again.

I was shocked at my own sensitivity. I reacted to (according to the label) 3 ppm gluten. Celiacs are supposed to be safe to 20ppm. Hmph. On the bright side, hubby believes how sensitive celiacs are to gluten now (there was a LOT of eye rolling prior) since he saw my bloated gut with his own eyes. I soooo wanted to say 'I told you so.' LOL

That was 4 days ago and I'm still mildly bloated and have some slow bowels. It's possible I glutened myself again with a cheap vanilla icecream (natural flavors ?) but I doubt it. Could be the lactose causing issues since milk has done that to me in the past.

So I'm doing better. I need to be more vigillant avoiding cc'ing myself, but I'm slowly getting there.

Oh, mom is getting tested, or rather got tested. She's just waiting for results in August.

Round 2 Withdrawl

I thought i was gluten-free for the first 1.5 weeks but discovered I wasn't. My hummus has gluten and I forgot about checking one vitamin. I was having bad headaches too... thought it was withdrawl. I guess it was pms. :huh:

I am almost 100% sure I am gluten-free now, and have been for about 4 days, and I feel just beat! My headache is back and huge and I feel so tired it seems like an effort to open my eyes after blinking. I'm a bit down too so that could be contributing to the fatigue.

At least there are no big stomach aches right now. I get minor ones, like my morning coffee is stirring up a bit of discomfort, but it's really mild. It's a discomfort that I don't notice unless I stop and take stock of my state of being. Also, I get a bit bloated when I eat too many raw veggies but nothing like before.

This headache and fatigue are not something I can forget about. I was even dreaming about a migraine before my headache woke me up this morning. :rolleyes: LOL I'd go to bed for the day but I've got young kids so it's not an option... or at least not one I'm comfortable with.

And I'm grumpy... so grumpy. I have to remind myself to smile with the kids around. Bah hum bug.

I figure I'm about 4-5 days of truely being gluten-free (I'll ignore my gluten-lite days). From what I've read, most people have a tough first two weeks and then it slowly gets better. It sounds like withdrawl can last up to a month, but not usually that long... I should have planned this for winter instead of our incredibly short summer! LOl

All Systems Stopped

Ugh, I haven't gone bathroom in 3 days and I'm starting to get rather uncomfortable. LOL I wish it would get going again. I'm starting to get quite a distended belly, and it's gross to think about why. :rolleyes: That's TMI isn't it?

I just realized that I hadn't checked my fibre supplements to see if they are gluten-free, and one isn't. :( I haven't really been gluten-free these past... 10 days or so. Just really gluten-lite. Oops. Oh well, I'll get there. It took 38 years to get here so I shouldn't expect to completely stop in one day.

I did go through my cupboards and clean out my gluten food. The food bank will get a windfall in soups and packaged sauces like alfredo and gravy. I haven't done my fridge completely but its almost done, then i need to go through the freezer... I need to find someone to give this stuff to. I'm hoping to have the house gluten-free by mid August, and then the kids will switch over.

I just found out today that ridged and flaky fingernails are another celiac symptom. Huh, I've always had that. I rarely paint my nails because it causes my nails to flake off even more. I think it's B vitamin related; I think there could be a biotin link too. i need to find a good biotin vitamin.... I need a nutritionist/dietician!

Down A Few Pounds

I've been gluten-free for just over a week and I'm down about 4lbs. Kind of a nice bonus. If I stopped eating a bowl of popcorn in the evenings, I'd probably be down even more. :)

I'll cut the popcorn to once a week and see if I can't take advantage of my damaged gut to lose a few pounds before it heals and it becomes harder to lose weight... like everyone else. LOL I guess this is the benefit of being celiac: easier to lose weight... for a while.

It probably helps that I'm not trying to replace gluten foods with gluten-free products (except lara bars, mmmm). I've just been eating more fruits and veggies instead.

My headache is gone today. No sign of it. Yeah! And I can say for certain that my shoulder is greatly improved. I can lift it above my head now. It's still weak but most of that bone deep ache is gone. :)

It's gratifying to feel some improvements in the first week. That will make it easier to keep going. I hope the improvements are slow and gradual and last until I am really used to eating this way. LOL
I took my boys to a kiddie birthday party today, and it was the first time that I felt like I'm missing something. They had a wonderful cheesecake, various bowls of chips (no idea of the brands), a few other snacks, and a plate of veggies. I ate a few carrot sticks.

It wasn't awful passing up on homemade cheesecake... okay, yes it was awful but it was do able. I didn't even pout. But I can see where the limited diet will get really annoying in a year or so when this diet grows tiresome.

I suppose I'm fortunate that I have many friends who are... well, health nuts and they already eat largely gluten free for no medical reason, so when I'm out with them it won't be a big deal. In fact, my gluten-free diet will make me fit in BETTER with them, it's just everywhere else it will get in the way.

Oh well. I'm stocked up on Lara Bars. lol

Acceptance Is Coming

I have so many things I need to check for gluten! Mostly vitamins and remedies. I took a Hyland's Calme/forte tablet in the middle of the night when my son kept waking me up and I was unable to get back to sleep. Within a few minutes I had a stomach ache that kept me awake... the opposite of what I was hoping for. lol

About half of my vitamins are obviously gluten-free. I'll have to look into the rest.

I really gotta look into the bacon... that's killing me. lol

I'm getting less bitter about this and starting to feel better about this. i had a sad moment this morning when I thought of the one date night that my hubby takes me on each year; it's a game night at the Bavarian Inn... sooooo good. It's all local wild game meat that hunters have donated and the chef does amazing things with it. It's a 7 course meal. mmmm. BUT it has gravies, schnitzles, and spatzle - I know I've spelled those wrong. I highly doubt I'll be able to eat even half of the meal. :(

And that's the only time dh takes me out each year... that is really pathetic. I better get on him, although nagging someone to take you out takes almost all of the fun out of being taken out. ::)


Starting gluten-free

I "think" I went gluten-free yesterday... not sure. This is what I ate:

m1 - 2-3 egg bake w/ red pepper, onion, spinach, spices and rice milk, 2 slices chicken bacon
m2 - no snack - out of house running a field trip.
m3 - 3-4 egg leftover
m4 - apple
m5 - bratwurst, sauerkraut, peas, cottage cheese, yams
m6 - bowl popcorn and spices

Today I double checked the bacon I ate since I was going to have more at breakfast, and it has smoke flavour... that often has gluten! I guess I need to contact that company and find out if it does or not.

I forgot to check the sauerkraut and I washed the label off the jar... I'm assuming it was fine.

I'm hoping if bacons just say "smoke" it doesn't mean smoke flavouring otherwise I can't eat bacon... that would be a true bummer.

I'm still in a bad mood about my delayed diagnosis, and to be honest, I feel sorry for giving up a few foods I really liked but I'm sure I'll get used to that.



Today I'm just annoyed. I'm mad that I've had this for 30+ years and didn't figure it out... and that my doctor had no clue even when I went to see him about it as a child.


Apparently pain is NOT normal for most people! Most people don't have pain moving or eating... I feel quite ripped off!


I went for my appointment today and I was half expecting the doctor to say I was fine and then I'd have to decide to go gluten-free on my own... but with the back-up plan that I could probably abandon it some day... Nope. :(

I definitely, without a doubt, have celiac.

The home test I did, with not quite enough blood, gave me a very faint positive after increasing my gluten for about 2 weeks. I wasn't sure I had it but it really looked like I did. I kept saying to myself, what if I did it wrong?

I had blood work done another 2 weeks later (June 19)after more than normal glutening and this is what I was tested for with the results:

[indent]Urea Breath Test = Negative - absence of Helicobacter pylori (yeah!)

Endomysial Antibody = Positive abnormal
Endomysial Antibody Titre = 1:40 abnormal
Endomysial Antibody Comment = The celiac screens on your patient are positive. These screens have >90% positive predictive value. Guidelines advise that your patient be referred for an intestinal biopsy. Treatment without biopsy is not recommended. The diet for celiac disease is complicated, expensive and must be followed for life. Referral should be made prior to initiating a gluten-free diet.

Immunoglobulin A 2.07g/L with reference range of 0.60-4.20
Tissue Transglutaminase IgA [b]>200 H[/b] kU/L with reference range of 0.0-20.0 (their bold)[/indent]

Sooo, tTg IgA and EMA are both positive... That's it then. I'm having my last pizza, cinnamon bun and beer tonight.

And I'm skipping the biopsy. I believe it and I'm sure so of what benefit could it be to me?

I know I'm not going to be fully gluten-free until at least the weekend. I have a busy few days coming up and I won't get groceries until the weekend. I will cut as far back on gluten as I can... tomorrow, when I'm done my pity party.

I thought I was okay with this but now that I know for certain that have it I'm struggling a bit with some pity and anger. I'll get on with it, that's my way, but for now I'm bummed.

God I hope my kids don't get it, or have it. I want them to conitue to be in perfect health... we've been so lucky so far. knock wood. please please..

I called my Dr's office today because I was starting to strongly suspect that my results were in but they were normal (or very close to normal) so my doctor didn't call me... he's done that before. In fact, that seems to be pretty standard practice for drs around here.

Anyway, I was right and the results were in but they won't release results over the phone. So I had to make an appointment to get them; I go in on Wednesday now.

So since the doctor didn't call me to make an appointment, I'm guessing my results are normal or close to it. So I'm probably in the same boat as many who don't get a definitive diagnosis. Darn. I was hoping to be the minority. I have a slightly positive on a home tTg test and most likely negative tTg and EMA test done by a lab one - two weeks later. What does that mean?

I know I didn't eat the equivalent 4 slices of bread a day that they recommend before testing but I rarely have done that in my life. I'm not a bread person. I eat pasta every 2-3 weeks. We usually have pizza once a week which is a big wheat day for me. My usual dose of gluten for a day was a tortilla, perhaps some oatmeal, sometimes 2-3 frozen waffles but I know I don't feel my best on those days... I like a bit of Slimfast in my coffee in the morning and that has wheat. I'm not exactly gluten lite but I'm not gluten heavy on most days... I wonder if that affects things.

I supose that the results might have just come in and they hadn't had a chance to call me yet... I doubt it.

It's so odd to be disappointed by the possibility of normal test results! That seems to be a common refrain around here. Sigh. Maybe I am "just one of those people who gets stomach aches when they eat" as my childhood doctor put it.

Enough wallowing. My plan for the next two days prior to my appointment is:

Establish what genes are found in almost all celiacs (DLS Q2 and 8... or something) and request a test.

Establish the usual celiac panel and be prepared to request those tests from the doctor.

Look into vits and minerals that are usually low in celiacs and possibly request tests to find my levels in those.

Find out what positive tTg tests (from the home test)can indicate (like Crohns?) and ask about that.

Inquire about testing my children and mother. One son was already tested by a pediatric specialist (normal), so I'll ask for his results (but our family dr might not have them). Testing them will probably wait until after my genetic tests... why poke them if I don't have to.

I haven't gone gluten-free yet, I'll wait and see what happens on Wednesday. Regardless, I'll try gluten-free and see how I feel. I'm probably gluten sensitive either way since I've had (mostly minor) stomach problem my entire life.

Do normal healthy people get stomach aches after they eat? Not every meal but at least 1/4 to 1/2 of their meals? Am I just getting wussy?

Nicole S
I'm bad at waiting. really. I thought since I am going a little nutsy about finding out if I'm celiac, I would buy another Biocard home test and retest my IgA tTg to double check if that faint line really was a positive test. Maybe I somehow did it wrong... maybe I second guess myself too much. Anyway, the store was out of tests! they only had them for a special promotion, probably for celiac awareness month... I dunno.

Ugh. I was counting on that to help me stop obsessing. Instead I turned to my old standby: junk food. LOL We had leftover stale cheezies. Nasty but tastey when you know it's possible that you might not have them again.

So now I'm waiting... again... until at least Monday. I was expecting quick results. I had my 9 year old tested and it came back normal (I plan on requested a copy of the test this week), and it was done within 48 hours. This blood test will be one week of waiting on Monday... and that's after waiting one week to get into the lab for the test.

Unless of course it was normal so the doctor felt no need to call. They've done that before. And then I'm one of the many with a less than decisive diagnosis and I have to decide what to do. hmm.

Patience is a virtue...

Glutening Sounds Bad

I've been lurking around the forum and I gotta say that the idea of being "glutened" after being gluten-free scares me. I'm still waiting for my blood tests, so I'm not even 100% sure I'm celiac yet (just a positive IgA tTg home test), but the symptoms I do have don't seem as bad as the symptoms many people have.

Yes, I get bloated, often to the point of looking 5 month pg again. I get stomach aches a few times a day but I can usually fake my way through them and no one has a clue. I get head aches and perhaps squint more and smile less but I get on with my day. I can't fake my sore joints since they take a minute or two to get going but once they're warmed up I can play and coach soccer with my kids. Can't fake my thinning hair either...LOL I get worn out and have a hard time getting up some mornings but I don't think abnormally so...

I worry that these symptoms will get worse once I'm off gluten and then accidentally get glutened. From what I read, the symptoms seem much worse after going gluten-free. I read about people who can't get out of bed... I don't think I've ever been that sick... I hope I'm never that sick! (Those poor folks!)

I'm hoping that (for me) it's not that the symptoms become that much worse but that I won't be used to having them anymore. I can get used to discomfort and pain but I think when it takes you by surprise, it seems much worse... for me anyways.

I'm thankful I don't end up with nausea resulting in vomiting like some glutened folks do, I hope I never do. THAT would be tough to deal with... Eek.

Ah well, still waiting impatiently for my results.

Nicole S
I had my celiac screen test yesterday and I am soooo impatiently waiting for the results! I had a positive tTg home test so I'm pretty sure I have it but I want confirming positive blood tests before I drop so many of my favourite foods!

The celiac screen up here in Alberta is for tTg IgA and EMA and from what I understand, if I get positives on that then I'm in the club.... and if I get negatives then I am most likely in the club... LOL

I'm just not great with sticking with dietary changes. I've lasted about 5 months on healthy eating in the past. I basically gave up most processed food; I wasn't gluten-free but there wasn't a lot and I felt great. At the time I thought it was because of weight loss (I'm 30lbs heavier than I want to be) but looking back, it was probably diet. I had more energy, almost no migraines, my skin cleared up, I lost 30+lbs and I remember commenting on how my stomach pains went away (I get stomach aches 1 to 4 times a day for 15 to 90 minutes at a time... always have).

Anyway... that didn't last. I remember saying that I would have just one muffin and before I knew it I was back to old eating habits and gaining weight... and having stomach aches. I want those positives if I need to change my diet that much.

I hope the doctor's office calls this week! I'm so distracted by this that I'm not getting much done. Once I know, then I can get on with gluten-free eating... after one last cinnamon bun and maybe a piece of cheesecake. Hmmm, I bet a gluten-free cheesecake won't be too hard to make... There, I'm looking on the bright side. lol :)

Nicole S

Could It Be Celiac?

I've suspected for a few years that I could be celiac. I wasn't having crippling pains or running to the toilet but I often get a stomach ache about 20 minutes after I ate, I always take extra fibre or things don't move, and a few days a week I get painful bloating in the evenings. It's been like that since I was a child. About 30 years ago, I remember my mother taking me to the doctor who said,"she's one of those people who gets a stomach ache after she eats." Even as a child I remember thinking, 'Um, yah...really?'

I also wondered about it because I have a cousin who is celiac. I also have another autoimmune disorder (ITP) and from what I've heard, it's not uncommon to have more than one autoimmune disorder. And then I started reading this forum and found stories of people who controlled their ITP through diet! That annoyed me... I might have done steroids and had my spleen taken out for nothing if it was celiac related?? And then there is my creaky and painful joints, my shoulder became weak (actually since I upped my gluten... hmm) a couple of weeks ago and I have a hard time lifting my arm above my head. I've even had a rash, that looks suspiciuosly like dh for about 4-6 weeks on my stomach, although is is extremely small and has stopped itching...

I partially put off testing because Of my family and what a hassle going gluten-free (gluten free) would be. My husband is great but he's a true meat, potatoes and bread kind of guy, and my three young boys are picky.... I criticized a family member's handling of her very picky eater before having kids (don't we all know more about raising children before we have them) and then I was blessed with picky eaters. One child survives on the "Beige Diet": bread, chicken nuggets, toast, fries, buns, bananas, muffins, appleasauce... you get the idea.

Anyway, I dislike going to the doctor, and a friend of mine who knew this recommended the Biocard Celiac test which you can do at home. It was on sale so I bought it.

Before doing the test, it recommends eating the equivalent to 1-4 slices of bread a day. I don't eat that much bread as a general rule except maybe on the weekend when hubby makes french toast so I upped my gluten. After two weeks I was getting curious so I tried the test.

I'm not sure how accurate my test was... there is a pin prick where you need to collect a good sized drop of blood and I didn't seem to want to bleed that day. No matter how I squeezed or pushed, I couldn't get the full blood amount the test wanted. I think I had about 75% the correct amount of blood.

Anyway, I mixed it up and dropped 3 drops onto the tester, I felt like I was doing a pregnancy test again... I watched the control line come up and after 3 minutes... still nothing else. I figured that I was fine and that I wasn't celiac, but I'd check again at the 10 minute mark as directed.

By fluke, I stopped reading at the 10 minute mark and checked again, and there was a second line! It was faint but it was there... my stomach just dropped. I thought I was fine but according to this test, I'm a celiac with by over 90% certainty..

I've now got blood tests booked for Tuesday to do a celiac screen and I'm nervous. The home test checks for tTg IgA and if I could get a positive test on that, without a full blood sample, I imagine that the screen (which I think is tTg Iga and EMA) will also be positive.

I'm almost more nervous to get a negative... I think going gluten-free would be easier if I was sure I had celiac but if I start getting conflicting tests... then what? I'm actually hoping for a positive so it is more definitive (in my mind) and I can get on with being gluten-free. I'm not doing the endoscopy since it doesn't benefit me in any way.
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