Hello! Just Got Positive Blood Test For Celiac

[chilligirl]

Thought I'd introduce myself. I'm about to turn 30, and after some urging by my dad's girlfriend, who's an RN, to get tested for Celiac (since my sister and I have identical gut issues), I finally asked my doc to do the bloodowrk. He did some other basic blood work also, as I've been feeling terribly run down for some time now.

Results are in: positive for celiac, plus I'm BRUTALLY anemic (despite eating digusting amounts of red meant and being a total nut for lentils and beans). No wonder I feel so crappy!

I'm not gluten-free yet, doc told me to hang in and keep eating gluten until after I see the GI doc for a scope and biopsy. Apparently going gluten-free can muck up those results? Doc said the biopsy is needed to confirm the result, although it's basically unheard of to get a positive blood result and NOT have celiac.

Most people would probably be bummed to get diagnosed with celiac disease. In my case, I'm actually thrilled.

See, I've had gut problems and strugled with anemia all my life. I've always been terribly clumsy. I have a bunch of ADHD symptoms. Have always been an insomniac. Have intermittent joint pain which led to being diagnosed with serum negative RA a few years ago. Terrible allergies and asthma. And unexplained infertility. I actually have every symptom commonly listed for celiac.Basically, from what I'm reading, all of the things that are "wrong with me", and have made me so unhealthy for so long, can be a result of untreated celiac disease. So I'm thinking going gluten-free just might change my life! My life is alreayd pretty rockin', I've got a great job and a wonderful hubby. To be healthy too? Heaven!

I only wish I'd gotten tested sooner. Celiac was mentioned to me about 4 years ago, and when I looked it up, I thought "that fits". I didn't wnat to ask my doc though, as I thought it would make me look like a hypochondriac. Oh well, at least I asked him now!

How hard was it for all of you to make the diet change? How soon did you start to feel better?

I'm not too stressed about the diet change, as I dont' like bread (never have - maybe my body was telling me something?), which makes things easier. However I LOVE soy sauce and eating out, and I've read that soy sauce is not gluten free, and I know eating out becomes challenging...No more McDonald's for me!

[Shess0816]

I know exactly what you mean about being excited to finally have a diagnosis! When I was diagnosed last March I was absolutely ECSTATIC that I it wasn't "all in my head" like a bunch of other doctors had told me the past 9 years! It's nice to know there was an actual issue and there is a way for me to improve my health and my life!

As for the gluten free diet, it is a bit of a struggle at first. It is more expensive, labels can be tricky to read, and sometimes it's hard to get relatives and friends on board because they just don't understand the "allergy." But, as many people on here have proven, it can be done! I'd keep looking and posting on this board as there are a lot of great ideas and people on here to help you out.

You can definitely still eat out. There are actually quite a few restaraunts (depending on where you live) that have gluten free menus and are knowledgable about our dietary restrictions. There isn't a whole lot at McDonalds that is all that filling, but Burger King grilled chicken salad is always good...also, don't know if you have a Wendy's around you or not, but they have quite a bit on their menu too. If you do a google search for gluten free food or menus in your area, you should come up with a few hits, I'd guess.

As for soy sauce, you can still have soy sauce, you just need to buy the wheat free one. I'm not sure what the name of that brand is, maybe someone else on here can remember. I just know that they have it available at my favorite little Sushi place.

I guess the main things to remember are 1) It's a lot easier sometimes just to make your own meals 2) Always always read labels or if eating at a friends or family memebers, ask what they put in the food 3) Don't give up eating the things you love -- just try to find gluten free alternatives. If you love pizza, they have gluten free pizza. If you love hamburgers, you can always buy gluten free hamburger buns. It takes a little more work, but it's definitely worth it.

You also asked how long it took before people started feeling better or feeling a difference. Honestly, I can tell you that within a few days of going gluten free, I could tell a difference. The first thing I noticed was that the "foggy feeling" in my brain was gone and I could finally think clearly and concentrate. Then my stomach started feeling better, my anemia is better. I used to get really bad shakes -- my arms and hands and legs would just have basically what I would describe as tremors...don't get those at all anymore! I used to lay on the bathroom floor sometimes entire days and nights with just excrutiating pain, cold sweats, joint pain...none of that anymore! I would say that within a couple months, I could not believe the difference in how I felt. The trick is, though, you HAVE TO stick to the diet. No cheating!! ) It's hard sometimes, but just remember that your health and you feeling good for probably the first time in a long time is definitely worth sacrificing some things!!

[nmlove]

Hey, glad you finally made it to the doc. My son's currently going through diagnosis. He's four and has mild symptoms but after finding out about celiac disease, I was like, really? This sounds like me! So after we're done with him (his scope's on Monday) and finding the results, the entire family is getting tested. There's a lot of debate around confirmation with endoscopy. We opted for it because there is a 5-10% he does not have celiacs. The blood test (ttg) is pretty specific but there's still that chance. Also, we wanted to make sure nothing else was going on.

As for the diet, I don't think it'll bother me too much. I have some great stores nearby. And I've already been thrown on a casein free diet because of my 3 month old so my mind's already wrapped around the idea of looking at ingredients and doing more homemade cooking. Though I know gluten is way more difficult. I didn't know how much until I started reading up on it. I will say I can totally relate about family/friends having a hard time getting onboard. And I can speak from both sides. First, my new SIL has a (new) gluten intolerance. We don't know her all that well and even I felt resentment when she'd "turn her nose" up at chicken. Obviously chicken is gluten-free! But of course now I realize you have to know what spices are on that chicken, where that chicken is cooked, etc. So I totally get it and feel bad about how I reacted. And now, with my son, in talking with my MIL, she's like, "Oh, a little bit here and there doesn't hurt. It's only when you eat a lot." Doh!

Hang in there with testing. Soon you'll be on your way!

[LDJofDenver]

I'm so happy that you've got a diagnosis. Most of us (celiacs) have similar stories of years, even decades, of misdiagnosis and frustration. Isn't it just a giant sigh of relief to finally have an explanation? Sure was for me.

The good news is you're 30. I was in my mid fifties till diagnosed, so imagine the level of damage I'm dealing with. But the healing is in-process.

You'll have a bit of a learning curve initially, learning which mainstream groceries are gluten-free, but there are grocery shopping guides available that make that part easier (Triumph, Cecilia's Marketplace, etc.). And, like mentioned above, restaurants are coming on board - more and more have gluten free menus and procedures. Eating out is still something we are able to enjoy, although I am scrutinous and often even pre-screen the restaurant we're going to.

So welcome to healing. I've gotten so much information from this forum, it's a wonderful resource.

[chilligirl]

thanks for the welcome!

I'm in BC, Canada. As for fast food, I'll probably end up dropping it. I've never liked BK or Wendy's (although at least Wendy's has baked potato - yum!), and am not even feeling the McDonald's love since they changed their fries. I LOVE whitespot (best fries ever!), and DQ has great crispy chicken salad and chicken strips. Really though, I can live without fast food. I've never liked breads, and that's gotten worse over the years, to the point that I usually only eat a bite or two of whatever I pick up at a fast food joint. I won't miss pizza - I only ever liked deep dish, super-greasy veggie pizza, and again, only a piece or two.

I WILL miss breakfast cereal. I LOVE cereal, and am picky about it. I know there are gluten-free cereals, but they're not the "right" brand and will taste different - boo! No more fruit loops, corn pops, golden grahams, cinnamon toast crunch, rice krispies (I heard they're not considered gluten-free?), or cranberry almond crunch. *sigh*

I think the biggest adjustment will be getting used to shopping. I've done a couple google searches, but instead of getting a list of brands of products that are gluten-free, I just keep getting the same basic info on what to look for on labels. It would be nice if, my first time out shopping, I could have a list of familiar products that are "safe".

I'm lucky that my hubby is totally on board with this - he's going to go gluten free with me, at least at home. We have three kiddos - an adopted son who's autistic, and two special needs foster kids. So, all meals cooked at home will be gluten free. We'll still buy regular bread for the kids, as it's cheaper and I don't eat bread anyways, and we'll get a separate container of margerine for making their sandwiches and toast (that way the regular household butter and margerine I cook with won't be contaminated).

Another challenge I foresee is going to other people's homes (family particularly) for dinner. I have a former coworker who has celiac, and she always just brought in her own food to work (we work in group homes, so you eat a meal prepared at the home, with the clients). I guess I'll just start bringing a salad or something with me when we go over to people's houses for meals.

I'm a little bit worried about this stat that I read: something like half of all celiacs are also lactose and/or casein intolerant? Ahhhhhhh! I can give up gluten no problem, but dairy? I'd die! My hubby has long been insisting I'm lactose intolerant. I don't see it. I don't see any pattern to my tummy troubles, aside from whatever I first put in my body in the morning (most often a dairy product, but even water gets the same result) leads to a quick trip to the bathroom. Regardless, when I get in to see the GI doc, I'll ask about lactose and casein. Seriously, if I had to give up dairy, I'd probably cry I love ice cream, yogurt, cheese, whipped cream, custards, a nice big tall cold glass of milk...

[chilligirl]

I think the biggest adjustment will be getting used to shopping. I've done a couple google searches, but instead of getting a list of brands of products that are gluten-free, I just keep getting the same basic info on what to look for on labels. It would be nice if, my first time out shopping, I could have a list of familiar products that are "safe".

I take that back - I just found the rockin'est site:

www.celiacsociety.com

Lists all the brands by category.

Laffy Taffy is gluten-free - woot! I love that stuff

[Shess0816]

I take that back - I just found the rockin'est site:

www.celiacsociety.com

Lists all the brands by category.

Laffy Taffy is gluten-free - woot! I love that stuff

I am a big cereal girl too! I used to LOVE golden grahms and honey comb. Well, I can't have those anymore, but I have definitely really started enjoying the cinnamon chex. It's mainstream and I LOVE it now. Also, the Envirokids peanut butter cereal (I think it has a gorilla on it) tastes really good too.

It's kind of hard to stick to some mainstream stuff you are used to having. I know Cookies BBQ sauce (which was my favorite anyway) is gluten free -- it says it right on the bottle! There are a lot of chips that are gluten free -- I think Doritos has quite a few brands. Fresh fruits, veggies, and grilled or baked meats are always easy. Uncle Ben's or Minute Rice have a few rice options that are gluten free.

Oh yeah, almost forgot, it's either Healthy Choice frozen meals or Weight Watchers Frozen meals -- but one of them has the label GLUTEN FREE on a few of their products. So, those are more mainstream and cheaper than buying the frozen gluten free meals from the health food section. I know the sante fe rice and beans (I think tha'ts what its' called) that I buy from I think it was Weight Watchers was gluten free. I had it with some corn chips and it made a really great meal!

Most ice creams are just fine as long as they don't have cookie type things in them -- like chocolate chip cookie dough is not okay...but chocolate chip should be!

[StacyA]

Regarding 'half of celiac's are casien/lactose intolerant' - that may just be at first, due to the intestinal damage. I saw a dietician last month (who herself has celiac's) and she told me not to worry about dairy unless it was already obvious to me I had diary problems (I loooove dairy.) Now, I caught my celiac's early and only have mild damage - your situation sounds different. I'd suggest seeing a dietician at least once to get some good info, and definately get the biopsy so that you never have any doubts later on - especially since the gluten-free diet is tricky.

[happygirl]

San-J has a wheat free soy sauce that is a great replacement. Good luck when you start the diet!