Celiac Disease / Gluten Intolerant

[AquaBlueRain]

Hi! I have been recently diagnosed with gluten intolerance and will be undergoing testing shortly to see if I have Celiac disease. I've been without any products containing gluten for the past week now and I'm finding it EXTREMELY HARD not to cave and eat a slice of bread, have some Ramen noodles, whatever!

 

Is there anyone else out there with gluten sensitivity, Ciliac disease, or gluten intolerance? I thought we could start a support group, have a place to share recipes or talk about gluten-free products we've tried and loved/hated/meh, and just to have someone else to chat with about having this issue.

 

Or maybe you've decided to cut gluten out of your diet for the health benefits? You are more than free to join in on this as well!

 

Don't be shy!

 

(I've searched and I don't see another forum post for gluten sensitivity--all I've seen is an allergies thread. Please let me know if there is already another topic like this one)!

[babybluefire]

My husband and son both have celiac. Dh has known since he was about three. Ds finally tested positive at six. Products have come a long way in the past few years. Bisquick makes a gf bisquick that works really well in baked goods. Pillsbury makes pie crust that is decent. Udi's makes a gf bread that is good enough for my picky son.

[AquaBlueRain]

My husband and son both have celiac. Dh has known since he was about three. Ds finally tested positive at six. Products have come a long way in the past few years. Bisquick makes a gf bisquick that works really well in baked goods. Pillsbury makes pie crust that is decent. Udi's makes a gf bread that is good enough for my picky son.

Sorry to hear they both have Celiac! But happy to know that the products are improving. I've seen the Bisquick but haven't tried it yet. So far I really like the O'Doughs bagel thins, and Schar's gluten free chocolate hazelnut wafer cookies.

 

Hubby and I tried some rice pasta the other night (I can't remember the brand off of the top of my head). He didn't mind it, I thought it was horrid lol. He's not gluten free but he's trying stuff with me.

[tenavosi]

I have toyed around with the idea of cutting out gluten... Some sources claim that it can help lower the immune response in Hashimoto's.

Edited February 7, 2014 by eaturbyfill

[dragongrrl]

I don't have the problem, at least at this point, but I do have friends with the problem. one of them got me started on pasta made with quinoa, instead of wheat. It's pretty good, but I guess it costs a bit more.

 

There is a local store that specializes in gluten-free products, but much of it is very expensive.

 

Is the increase in gluten intolerance basically in the USA, or does Europe, with the GMO ban, have the same problem?

[babybluefire]

I suspect celiac started originally due to gmos and environmental contamination. It is now known to be genetic as well. Hence my husband passing it to our son, my mother in law was recently diagnosed as an adult as was her father.

 

 

Not every has the same severity of reaction to gluten. My husband and his brother will be puking and have explosive diarrhea for days. My son we only found out after I demanded he be tested. My seven year old son is tiny for his age, his three year old sister is very tall. So while the boy has no super obvious gastrointestinal issues it was stunting his growth. He has shot up several inches and put on almost eight pounds in only two months.

 

 

There is a small issue with going off gluten and testing. The tests are only reliable if you are currently eating gluten. If a person with celiac goes gluten free and is tested down the road the blood and even biopsy results will show a false negative. Back nearly thirty years ago the way to test for celiac was biopsy, go gluten free, biopsy, eat gluten and then biopsy again so see the damage to the small intentions. Now blood tests are somewhat more reliable. However not all persons it is reliable for. Some receive a false negative. My spouse had celiac proven by intestinal biopsy, but his blood work came back negative.

 

 

Anyways if you are interested in more recipes and the like I can go find and copy them for here. Be sure to look for hidden sources of gluten as well. Spices, flavor extracts and many soups and premade foods have gluten or food starch in them. It is a cheap thickener and is widely used. Label reading becomes a huge deal. McCormick spices and flavorings are almost all gf.

Edited February 7, 2014 by babybluefire

[Magic199]

Whoa, I thought I was the only one! I'm gluten intolerant, too!

 

I would hate for you to think that going gluten free is a bad thing, I honestly feel that it is really much better. I'm a vegan, too, so I am very, very limited to what I eat. However, I am perfectly happy the way it is!

 

If you are missing wheat and such, I would suggest seeing if your store has a gluten-free aisle or freezer section, mine has both a freezer area and a store aisle with gluten free foods. They make gluten free bread, too! In fact, whenever I go shopping I always pick up a gf pizza crust, then top it with toppings and I honestly like it much better than normal pizza. I have seen and used many box mixes made gluten free, my favorite box mixes are by King Arthur... especially his brown-sugar cookies! My favorite gluten free product, though, would have to be Van's waffles/french toast sticks. I sort of doubt anyone normal would like them, because they are made with rice, but if you are willing to be brave the taste actually starts to get appealing and delish.

 

And if you want some recipes... well, I am one who can help you out with that, but you'll have to know that most of the food that comes out of my kitchen is desserts... haha, but anyways, there are tons of sites out there about gluten-free recipes. If you are looking for deserts and occasional waffles/breads and such, then I would suggest Yammie's Gluten-Freedom. I know for a fact that she has some bread recipes, and the only expensive ingredient in those probably would have to be Xanthan Gum, however, if you are into baking gluten-free decadents, then Xanthan Gum is worth the bargain. Another site is Gluten Free Goddess, which I have actually only found recently (to be honest, I found it today) but I really like it! I will share one more, which is Honey And Spice. That is probably one of the first baking blogs I ever actually used and liked. Not ALL her recipes are GF though, so you got to be careful. I would share more, however, most of the sites I use are based of vegan recipes, with many of them able to be/are gluten free, so I am assuming that it wouldn't be much fun to invest in egg replacements or funky ingredients for it to be vegan when you probably aren't a vegan... I've been talking too long...

 

I wish you luck on your journey of becoming gluten-free! Anything is possible, and I hope you will enjoy it.

[AquaBlueRain]

I agree with babybluefire--the GMOs and environmental contamination are most likely to blame for this ever increasing problem. Sadly, many of the foods we eat have been genetically modified. I cringe just thinking about it.

 

Magic199- I thought abuout going Vegan as well. That just might be my next step to feeling better. I feel MUCH better since starting the gluten-free regimen, but there is always room for improvement. Since going gluten free I have also cut out soda and high fructose corn syrup. I also don't eat/drink anything containing aspartame as I have a critical allergic reaction to it (I go into anaphylaxis).

 

I'll have to look for those brown sugar cookies! I LOVE cookies!

[popcorncat11]

I have a friend who was diagnosed with that a young age. Because of this it was easier for her to not crave the gluten foods (since I don't think she even remembers the taste) but it still seems hard on her parents because they constantly are having to send replacement foods for whenever we have a party or if she's coming to spend the night or something.

 

I suspect it will be similar to vegetarianism. With this I am speaking in experience. It will be a hard battle to stop craving the foods you want, but with hard effort you will come to a time when you don't even remember what it tastes like, nor do you want it. I don't feel different anymore, except healthier and happier.

 

Oh, and the gluten-free cookies you can buy at the store are delicious.

[PhoenixJewels]

Hello! I'll share my story

 

My daughter is 9 yrs old. When she was born, she would get violently ill (like the scene in the Exorcist - only worse ) For 2 1/2 years I fought with her pediatrician. Without doing ANY testing, he told me she was doing it for attention - and me being a young first time mom, what did I know? So I listened to the doctor. She ended up one Halloween with a fever of 104.5 - and the pediatrician refused to see her. I took her to the ER - she had grade 4 vesicoureteral reflux (kidney reflux). A week after that she got sick at daycare, and again the pediatrician refused to see her (I honestly think they believed I had munchausen's and was making it up). My little girl would throw up 30-40 times a WEEK.

 

I had tried everything - food journals, thinking maybe we could isolate a food, dairy restriction, maybe it was lactose intolerance...I even brought my mother to doctor's visits thinking maybe they would listen to HER. But still we were told she was doing it for attention. Finally I got tired of not being heard and I used some rather unsavory language and told the nurse on the phone to get the doctor to call me back because something was clearly wrong. It took him about 15 minutes before he called me back and it was a lot of "Well we *could* do testing but it would be invasive and painful to her". Excuse me, don't you think puking 30 times a week is painful?

 

So finally we got to a gastroenterologist who did the endoscopy & biopsy on her. A week later the nurse calls me on the phone with the results...and she's blabbing on and on and finally I'm like "it's something weird you can't fix with medicine, right?" "Oh it's celiac sprue, and it's easy, just don't feed her gluten". Oook - so off to the store to grocery shop (after a quick look up what gluten was in, printed off a list of different terms that represent gluten).

 

Two hours later, a very frustrated 2 1/2 year old and I leave the store with fruit, veggies, and fritos - because they failed to tell me that gluten is in practically EVERYTHING. Not just food items either - it's in shampoos, lotions, medicines, stamps, adhesive in some bandages, etc etc. So me being the nerd that I am, research the heck out of it to find out it's genetic. Now her father left us when she was a baby - so I went and got tested. And yay! I'm a celiac too! >.< 24 yrs old at the time now being told I've been basically poisoning my child and myself. And so I tried to be gluten free - I really did. But I have so many other allergies that if I were to pay attention to everything, I'd only be able to eat strawberries, pork chops, green beens, and cabbage (seriously allergic to everything >.< Even soy & rice - which most GF foods are made with!) So I just eat whatever. And yes, I suffer for it. My daughter has been GF since diagnosed and is healthy now, and I am trying to be more GF now - especially since in the last few years they have really stepped up on the GF foods. They're easier to find - but still pretty expensive ($5 or more for ONE loaf of bread?!)

 

They fail to tell you how many things gluten are in, and you have to be careful about stuff like cross-contamination (can't use the PB & jelly jars for GF & non-GF stuff, need a separate toaster -etc) but it's so much easier once you get the hang of it. And thankfully they are working on the texture/taste differences. When my daughter was diagnosed - everything tasted like cardboard & pretty much had the same texture. Now it's usually so similar I can't tell the difference.

 

There's my story - so I know the struggles, and like I said, I researched the living daylights out of it. In fact, my gastroenterologist has me talk to people who are newly diagnosed because I'm able to put it in friendly terms (doctor's are a bit...doctor-y ya know?) So any questions, just ask. And kudos if you are able to actually stick to being GF - I'm trying but it's a struggle!

[PhoenixJewels]

I suspect celiac started originally due to gmos and environmental contamination. It is now known to be genetic as well. Hence my husband passing it to our son, my mother in law was recently diagnosed as an adult as was her father.

Actually - having researched a lot - celiac sprue has been around since before the medieval times. Mankind (like caveman ages) were hunters & gatherer's (meat, fruits, berries, nuts) so our bodies aren't designed to process gluten. Just like a dog's digestive system isn't made to process chocolate.

 

European population is usually the most affected - but it is the most common genetic disorder in the world 1 out of 133 people have it. It is often misdiagnosed as IBS or other issues because there are over 250 different symptoms OR you could be asymptomatic and not show any symptoms at all. So in actuality - NOT being a celiac is what's abnormal You silly gluten-eating freaks

 

I do think though that over processed food is what is making people get sick faster. You can be born with one of the two, or both of the genes that causes celiac sprue. But it can go dormant - so you seemingly don't have issues. Most people will be sick as a child - then it goes into a sort of "honeymoon" phase during puberty. Usually in adulthood it takes some traumatic event (pregnancy, surgery, some major event that causes hormonal changes) for it to be "triggered" again. I was sick as a child, "healthy" as a teenager, and it "returned" when I got pregnant with my daughter.

 

It's nice that there is a much greater awareness of it - but still so much education that needs to be learned. Celiac sprue is different than an intolerance or allergy - those can actually be outgrown. Because celiac sprue is on the genetic level (coded into our permanent genes), we can never "outgrow" it. Even if we aren't feeling the effects of eating gluten, we are still damaging ourselves.

 

And knowing it's genetic makes it something you have to think about when having children. They could be carriers (of one or both genes), have it (again 1 or both genes) or not get either of the genes.

 

I'm sorry if I sound like a "know-it-all" but I had absolutely no clue when I first heard of it - so I'm eager to share all I know to help spread the knowledge so people can make the right steps towards healthier living (even if I do sneak squishy gluteny bread every so often >.>)

[TikindiDragon]

I agree with babybluefire--the GMOs and environmental contamination are most likely to blame for this ever increasing problem. Sadly, many of the foods we eat have been genetically modified. I cringe just thinking about it.

Perhaps in the US, not so much over here in Europe. Yes there *are* GMO foods over here - but they have to be clearly labeled as such, and many people avoid them. Celiac is still as much of an issue here as it is in the States.

 

Speaking of, my partner's niece was diagnosed celiac at a young age, and it's strongly suspect that my partner's brother (her father) is too.

[AquaBlueRain]

PhoenixJewels, thank you so much for sharing your story! It's apparent that you are definitely knowledgeable on the subject. I'm glad that your daughter is better. I know what you mean about doctors--I've had my fair share of ones who think they know you better than you know yourself or your child.

 

Good luck with your own health--I hope you're able to do whatever it takes to feel better for yourself.

 

--

 

It's definitely hereditary, Tiki. I hope your partner's niece is doing okay with it.

[MoonShark]

Hubby and I tried some rice pasta the other night (I can't remember the brand off of the top of my head). He didn't mind it, I thought it was horrid lol. He's not gluten free but he's trying stuff with me.

I don't have celiac disease nor am I gluten intolerant, but one of my housemates (who I've lived with during the school year for the past three years) is celiac so I've learned a lot about cooking GF. And also learned that making pie crust from scratch is a pain. Carrot cake, though, I'm a whiz at, and thankfully that's my housemate's favorite desert.

 

Have you tried corn-based pasta yet? If you have dietary restrictions regarding corn, it might not work, but I've had both rice and corn-based pasta and I love corn-based even more than I love wheat pasta. Rice pasta, not so much. Although it's okay once my other housemate (who is Italian and would probably die if he was gluten intolerant) turns it into mac and cheese.

[dreamtosleep]

I have celiac. Was diagnosed a few months ago. Which stinks, because I had plenty of time to get attached to food.

 

I recommend the Glutino brand of food. It's good, and gluten free!

[AquaBlueRain]

The corn-based pasta is my favorite as well. The rice one has a weird texture. Bertoli makes a lovely corn spaghetti!

 

I have celiac. Was diagnosed a few months ago. Which stinks, because I had plenty of time to get attached to food.

 

I recommend the Glutino brand of food. It's good, and gluten free!

I love the Glutino crackers. They *almost* taste like the ones I remember. It's hard to do the switch once you're used to all of those yummy gluten foods, but it's AMAZING to finally feel better

Edited October 21, 2014 by AquaBlueRain

[Brotato]

Respect for people who actually have this intolerance.

Mad hate for the ones that just pretend they have it just because it's been trendy lately.

Why the hell would a goddamn medical condition ever be friggin trendy?!

But nooooooo, now we got "Gluten-Free shampoo", and "Gluten-Free clothing", and "Gluten-Free water!" What's next?! "Gluten-Free air"?! Because there's too much gluten in the friggen air! Right?!

 

 

Sigh, my apologies... I tend to fly off the handle a lot. It's just that these kinds of things anger me to some extent. I've known people with Celiac's and I feel like these things, well... I you not sirs and ladies, I've seen ads for these things. Even if they were gags, it's just disrespectful for the ones that do have to struggle with this medical condition. I haven't the faintest idea how bad the struggle really is, but it's still rustling my jimmies when I see something so real get mocked like that.

Edited October 21, 2014 by Brotato

[dreamtosleep]

Respect for people who actually have this intolerance.

Mad hate for the ones that just pretend they have it just because it's been trendy lately.

Why the hell would a * medical condition ever be friggin trendy?!

But nooooooo, now we got "Gluten-Free shampoo", and "Gluten-Free clothing", and "Gluten-Free water!" What's next?! "Gluten-Free air"?! Because there's too much gluten in the friggen air! Right?!

 

 

Sigh, my apologies... I tend to fly off the handle a lot. It's just that these kinds of things anger me to some extent. I've known people with Celiac's and I feel like these things, well... I you not sirs and ladies, I've seen ads for these things. Even if they were gags, it's just disrespectful for the ones that do have to struggle with this medical condition. I haven't the faintest idea how bad the struggle really is, but it's still rustling my jimmies when I see something so real get mocked like that.

Actually, there's AIRBORNE gluten intolerance, and gluten intolerance by touch (hence shampoo, and I have no idea about the gluten-free clothing.) And if the bottling factory handles bottling wheat things, they may have to say so. But you don't need to sic "Gluten-free" on it, because most is. There was some serious debate as to whether I was or not, but they ran another biopsy. And to THINK that I might not have had it. Finally get hopes up, doctors be like: "NOPE" AAAAAAUUUGGHHH!

 

This makes me not want to have kids, because I'll pass the gene to them. (Possibly). And if I truly CARED about them, then I wouldn't want to put them through this. Besides, my brother's the one who'll pass on the family name. So why would I want to? What's in it for me?

Edited November 16, 2014 by EmmaD333