Anyone else here with celiac?

[Rachel in KY]

Last January, my doctor did a some sort of blood test and told me I have a gluten sensitivity of 4 (on a scale of 1-5). He didn't outright say, "You have celiac." He just said I could never eat gluten again and wrote "Celiac Sprue" on my file.

 

I know that to get a definite answer I need to have a biopsy. I have had no symptoms or GI/digestive complaints whatsoever, so this has been hard to accept. I've only just been doing GF for the last week, and it's not been too bad. Especially since I tried Bob's Red Mill Homemade Bread. It was almost like "real" bread and I was quite excited.

 

Please don't diss my doctor, as I love him to death and he's the only physician who has helped me and acts like he really cares. He's a little on the scatterbrained side and I've found that I need to ask lots of questions. I've suffered from pretty bad fatigue for ten years, and every doctor I went to tested for blood sugar and thyroid problems, and when everything was normal, they'd shrug and send me home. This one said, "Let's find out what's wrong with you!" I feel so much better, and have kicked myself many, many times for not going to see him sooner. I'm on lots of supplements, and he thinks that celiac is the reason why the vitamin and mineral levels in my blood are improving so slowly.

 

It's just kinda hard to adhere to a special diet when there's no motivation to do so.

[SheWillFly]

My 5 year old is in the process of a diagnosis. She had the blood test in September. It came up negative but she had been on a gluten free diet for roughly a year and no one told us that she needed to eat something gluten containing for the test to show anything. After that we started seeing an allergist and a GI in combo to tackle what was going on with our daughter. We will find out in May how the drs. want to go forward because she was having some other GI issues. So, while we do not have an official dx we are in the middle of the whole process and living gluten free with our little girl. It was an overhaul but the difference in her is absolutely worth every inconvenience.

[Ellie]

A friend does. She's pretty knowledgeable, mainly because if the scale is 1-5, she must be a 15! I'll ask her what she thinks.

 

Gluten can be hidden anywhere. You'd be surprised. Even vinegar has gluten. :-o

[Guest Dulcimeramy]

Heinz and Walmart white vinegar are safe. Bragg's Apple Cider Vinegar is safe.

 

5 out of 6 in my family have celiac disease! It is a pain, but we do have the built-in motivation of being extremely sensitive to gluten. We get really, really sick from even trace amounts.

 

www.glutenfreeforum.com is a great place for info. They have a board just for discussing testing and diagnosis, you might find it helpful.

[AnnetteB]

It sounds like there is no doubt about the diagnosis and you should take it very seriously. I am surprised that your dr. didn't give you information and a suggested reading list so that you could become as informed as possible! When our dd was diagnosed with type 1 diabetes I checked out a huge stack of library books and read all that I could in addition to the education classes that we had at the hospital/endocrinologist's office. I purchased several of the best for our home reference. I feel strongly that we have to be informed and our own health care advocates. I wish you well in making the diet/nutrition adjustments needed to regain good health:001_smile:

[LizzyBee]

We are in the process of having my 15 yo diagnosed. If you have celiac disease, you cannot eat any gluten because you will damage your intestines regardless of whether you are having symptoms. If you have non-celiac gluten intolerance, you can eat gluten; you can just adjust your diet to eat what you can tolerate and not eat the things that make you sick. I'm guessing you have celiac disease based on your blood test, but I would ask your dr for clarification, because as you said, it's hard to stick to a diet if you don't have the motivation for it. You might also ask for a referral to a nutritionist or dietician. That is definitely on my list as soon as we figure out what my 15 yo's official diagnosis is.

[bettyandbob]

Having this condition untreated significantly increases your risk of colon cancer. Many people get their first dx of celiac at the time they are dx with colon cancer. So, please take it seriously, if not for you, for your family.

 

Your ds should be tested. Now, and when he is in adolescence. It's genetic. Adolescence is thought to be a triggering event for the disease to develop.

 

I cook a lot of 'regular' meals that are naturally gf. (roast chicken, mashed potatoes, salad, vegetable). You may have a lot of meals you already make and can alter slightly that you can continue to cook and not seem like this is a huge change.

 

As you get further along in your understanding, you can get the hang of ordering things in bulk and shopping at ethnic stores to save money.

 

It's not that bad. You aren't all alone. And you will feel comfortable with the dx with time. We've been gf in our house for 7 years. 2 dc have celiac. It took me 6 months to shop efficiently again. We dropped bread for a year before adding in gf breads. We've learned how to manage restaurant eating. It all comes with time. You'll get there.

[athena1277]

Hi Rachel. I don't have celiac disease, but my dd and dh do. Dd has the "classic" form of it and was diagnosed just before her second birthday. She was very, very sick at the time. She is otherwise healthy now.

 

Dh, on the other hand, only got the blood test because of dd and it was positive. He has had 2 biopsies done and both were negative. The dr said it was "latent celiac disease". This may be more like what you have. He went on the GF diet for a while, but couldn't stand it because 1. he knew what he was missing and 2. he didn't feel any different. Of course, he had no symtoms prior to the diagnosis. He should be on the diet for better long-term health, but he's not.

 

I read all I can on CD. I'm not a Dr, but I will help answer your questions if you need help. Just PM me.

[Ellie]

Heinz and Walmart white vinegar are safe. Bragg's Apple Cider Vinegar is safe.

 

5 out of 6 in my family have celiac disease! It is a pain, but we do have the built-in motivation of being extremely sensitive to gluten. We get really, really sick from even trace amounts.

 

www.glutenfreeforum.com is a great place for info. They have a board just for discussing testing and diagnosis, you might find it helpful.

Yes, I know that white vinegars don't have gluten, but they taste nasty, lol. I also know about Bragg's, but I was trying not to give too much information right off the bat. :-)

[Supertechmom]

Yep, But we are a group of the 8% who test negative on both the blood and biopsy tests. My baby was so sick with a classic case of celiac (but neg tests)that we had to do the diet out of sheer desperation to save her life. The gi claims we are allergic to wheat, rye, barely and oats, the allergist says we have no chance of being allergic to any of that and the ped says we defy current normal -ie AMerican - medical beliefs concerning celiac and gluten. By doing the diet, we discovered solutions to my lifelong gi problems and my oldest son's problems.

 

Gluten never made me sick or so I thought. After a year of being gluten free, I now get very sick if I eat any. It also took 9 months of very stirct gluten free life style-everything from soaps to the forks we used was inspected and had to pass - before I saw the first signs of recovery. Now after a year, I finally have started to feel good. THe baby took about 2 months to being to recover and now after 1 year is pretty much fully recovered other than still being behind in some developmental stages.

[kalanamak]

 

I know that to get a definite answer I need to have a biopsy. I have had no symptoms or GI/digestive complaints whatsoever, so this has been hard to accept.

 

I'm on lots of supplements, and he thinks that celiac is the reason why the vitamin and mineral levels in my blood are improving so slowly.

 

 

You don't have to have GI symptoms. I had a CD patient with low B12, folate, vit K, vit D, and iron. REally low on all of them. He needed lots of D to improve. I'd dose, and check, and dose higher and check. It took a couple months, but he bloomed.

 

Think of it this way: a gluten-free diet is safe. Think of the people out there with diseases treated with side-effect ridden drugs, like cancer. I know, I know, this is the old "there are starving children in India" method of our parents, but its TRUE!

 

:D

[SilverMoon]

Two of my children are celiac. if the blood test came back positive I'd suggest committing to a strict GF diet, give it a couple months before eating a sub for a test. That test is like a pregnancy test, positive means absolutely yes, negative means maybe.

 

My oldest has celiac on his charts without the biopsy. He had a hands off doctor that closely monitored his size, weight and symptoms before, during and 3 months after a strict gluten free diet. The changes in him were remarkable enough that only my dragon in laws could deny it (that's for another thread ;) ). His energy level was higher, he was putting on weight faster than he had in years, his skin looked... thicker, his appetite was the highest it had ever been, he was thinking clearer. Around the one month mark there were more positive changes. More than five years later he's very sensitive to the slightest amount of cross contamination, and he grows normally now. :) He is sensitive enough that we rarely have any gluten in the house.

 

If you really want better testing, check out http://www.enterolab.com - They only require a stool sample, nothing invasive. The downside is most insurances won't accept them as they use fairly new technology. They are highly recommended in the celiac community.

[Supertechmom]

Thicker skin!! Yep that best describes it. Think tiny little pale see through skin with broken straw hair that screamed 24/7 with claws that hooked into you and wouldn't let go ....UGH. Some days I thought I had given birth to a screaming banshee monster like that little ghoul in Harry potter. The first time she smiled on the gluten free diet, I cried. I hadn't seen her smile in probably 5 months. Her vitamin levels were so low, the ped said corpses had higher levels. Life was scary. I can't even imagine how bad she felt.

 

A year later, her skin is thicker, almost with color as her vit d is still low, her hair is beautiful and she rarely screams. In fact yesterday, she even played hide and seek with her brothers and counted to 5 all by herself. A year ago, she didn't even talk, look at people, or socialize in anyway. SHe now speaks in full complete sentences and will sometimes speak to someone outside the family. She at least will now smile at strangers instead of hiding her head in my shoulder and screaming louder. I believe I am deaf in one ear due to the hihg pitched screaming.

 

Gluten free is not as bad as people first think. Biggest thing is to retrain your taste buds. We ate out of the produce and meat section only for 2 solid months. THen we added in one type of "baked" good - like pancakes - until we found the one we liked the best. Then we added in like one thing a month, each time exploring different types of that one thing until we found one we all liked pretty well. We now have a decent cupcake, cake, pancake, loaf of bread, and cookie recipe. ANd chicken potpie and cornbread. We are now trying to find a fluffy high biscuit. SO far we have only made flat biscuit cookies.:D But we keep trying.

[SilverMoon]

Yeowch! Poor little bug. :( My ds had completely stopped growing by his fifth birthday, but I still got the "not and smile" treatment for bringing it up. Otherwise he was happy, "healthy" and a smart little guy with nothing obviously wrong. Other than going from the 70-90%tiles at birth, to barely clinging to the fifth by his second birthday. Straight down is not a growth curve. :p

[Jenn in Mo]

Not diagnosed as celiac, but my naturopath says I need to avoid gluten. Corn also came up as a no-no, which stinks because it is a great alternative in some gluten free recipes. I've only been off gluten for one week and I could tell a difference by day 2! I never had stomach trouble, but I was tired and had weight that wouldn't budge. Within 3 days gluten free, I lost 3 lbs. I'm gearing up to try the kids without gluten as well.

[keptwoman]

I have not been diagnosed. I stopped eating gluten after many fob-offs by doctors and I just narrowed down the culprit myself.

I did have blood tests but I didn't realise that just "glutening up" the night before the test is not enough and it came out negative. I refuse to subject myself to weeks of gluten eating to get a result so I live with no official diagnosis.

However I had a number of classic celiac symptoms that cleared up after I stopped eating gluten.

 

At the start it is a massive change. It does get easier though. At home now I am very comfortable eating and cooking and we have a good varied diet. I find I eat more fruit and veg now too which is great. We do have flour in the house for cooking for the kids but most of the time the whole family eats gluten free because it's easier.

 

Going out is always a bit of a pain as lots of restaurants really don't have a clue and you have to be quite particular in your questioning. It's getting better in that respect though.

[Jennefer@SSA]

Having this condition untreated significantly increases your risk of colon cancer. Many people get their first dx of celiac at the time they are dx with colon cancer. So, please take it seriously, if not for you, for your family.

 

:iagree::iagree:

 

Also when we did a gf/cf diet to try and help my ds who has Asperger's I loved this blog for recipes and ideas...and check out her bread recipe. The best of about 20 loaves I tried!!!

 

Good luck on your journey!

[Nestof3]

My mom, 69, was just recently diagnosed with it. She was in the hospital for pneumonia and other complications. They did a scope down her throat, a colonoscopy, a gi tract scope, and she swallowed a little camera that takes pictures of her small intestines.

 

Her biopsy came back positive for celiac. She has had no intestinal complaints except bloating and constipation -- about all of her life.

 

She is severely anemic now and cannot gain weight. Her intestinal villi are so damaged that she is not absorbing her nutrients. She has a very low auto immune system now.

 

She has been doing great with her diet changes. There are really so many foods you can eat. I make glute-free peanut butter cookies now just because they're so good. (they're flourless). There are so many resources out there and even many prepared foods for when you're in a pinch.

 

http://glutenfreegirl.blogspot.com/2006/10/yum-yum-peanut-butter.html

 

Flourless Peanut Butter Cookies

 

One cup creamy peanut butter

One cup white sugar

One teaspoon baking powder

One egg

 

Preheat the oven to 350°.

 

Cream the peanut butter and sugar in a bowl. (As much as I love my KitchenAid, I have found that this is a hand-stirring job). Beat in the baking powder. Add the egg. Mix until it is all well combined.

 

The dough will be sticky, so be prepared to get your hands messy. Roll some dough into a ball. (How big? That depends on you. I have found, however, that the smaller these cookies are, the better they hold together. Eat two instead of one!) Roll the ball into white sugar. Line a baking sheet, covered in parchment paper, with sugary balls of dough.

 

Bake in the oven for about ten minutes. You will know the cookies are done when they feel coherent, but still a little soft. Take the tray out of the oven and let the cookies rest for at least five minutes. Afterwards, carefully transfer them to a cooling rack. After ten minutes or so, they will have hardened and be glistening with sugar.

 

Eat them

** I use my Kitchenaid and one batch makes between 18-24 depending on the size of the ball.

 

I think the biggest help is to stop thinking so much about bread/sandwiches. Think things like corn tortillas, rice cakes, baked potatoes, rice.