Celiac's disease?
 

HI I am going through testing for this and there is a high chance i have this. I have been reading about it, but for most people they are skinny!!!! Mostly because of malabsorption of the food. Just wondering if anyone else has this, knows more about it, ways to cope, meal ideas etc. Essentially it is a gluten allergy: wheat, rye, barley, but can also be other foods.

My daughter has this. She's just 3 years old. It took us almost 18 months to get her diagnosed. Basically, we avoid ALL processed grain products. She can have small amounts of things like 100% whole wheat pasta, brown rice and certain other grains. I know that when she eats to much, she starts to get a rash in her elbows, knees, belly, back and legs, it looks ALOT like excema, which was the big delay in the diagnosis, as well as her age, it tends to present itself in early adulthood and the fact most people with this have an immediate family member who also has it. Until her, we had zero hisotry of this issue. We tested everything from diabetes to lactose intolerance, since she was having horrible diarhea. She is and probably always will be an ultra-thin girl. Besides her basic genetic make-up, not being able to scarf loads of what I call "white" breads will keep her from gaining. Meals around here tend to be veggies, fruits, brown rice, fish, chicken, red meat once or twice a week. When I make her plate, I use the same technique I use for us all, 50% of the plate is veggies, 25% is protien source, beans, meat, fish, poultry or tofu and the other 25% is our grain. My shopping philosphy is that it if comes in a box, I avoid it. I try to keep our foods as close to the source as possible, eliminating as many middle people handling the food as possible. I have found she can have white sushi rice, as long as its genuine and imported. Something about the way we process our foods in the US seems to make her food issues even worse. Good luck. There's a plethora of info available on this disease.

Hi!

My future daughter-in-law was diagnosed about six months ago. Within TWO DAYS of stopping ALL foods having gluten in them, ALL of her symptoms disappeared. Over these last few months she and I have been finding TONS of great gluten-free recipes! There's really a lot out there! Just do a seach for "gluten-free recipes", and you will have THOUSANDS to choose from!

Today we made delicious gluten-free biscuits to go with our stew. She's also vegetarian, so she made HER stew separate from ours. It was a very successful meal!

We like the baked goods made with a mixture of rice flour, tapioca flour, and potato starch the best, but there are many other flours for you to try.

If a product doesn't say "GLUTEN-FREE" then it ISN'T. There are other additives to watch out for also which are wheat-based products added to seemingly safe foods. For example, Good Seasons salad dressings contain maltodextrin, which is made from wheat.

My future daughter-in-law doesn't eat ANY wheat products AT ALL. She has been completely free of rashes, stomach aches, and problems with her intestines since she cut ALL gluten from her diet.

I met a girl this summer who found out that the rash she was getting ON HER SCALP was because her SHAMPOO had wheat in it, so WATCH OUT for that, too.

It's been interesting trying new recipes, but even better watching how everyone in the family enjoys these gluten-free foods. Our future daughter-in-law really appreciates coming to breakfast and knowing that gluten-free pancakes will be there. We also found a GREAT cake recipe that we've made several times already. I added Hershey's cocoa last time, and it was the best homemade chocolate cake we have ever had!

Wild Oats Market has quite a few gluten-free products as does Trader Joe's. We are finding quite a few more in the regular grocery store, too. I always talk to the people who are buying gluten-free products because I find that they have WONDERFUL tips and can recommend products that THEY have tried.

Don't worry! After awhile it just seems like you've been making/eating these recipes all your life!

Cheryl

I have a very good friend who was diagnosed two years ago. And no she was not thin as a rail. She is small (meaning hight and frame) but a little overweight. Yes there alot of problem with malabsorbution but that isn't all that puts on weight. It depends on what you were eating. Like Cheryl
DIL most of her health problems went away when she stopped eating glueton. When she does accidently eat something she is not suppose to she ends up in the hospital. It is really terriable.

I've gone shopping with her several times and like Cheryl for most things if it doesn't say glueton free then it isn't. You also need to watch meats because a lot have broth added and the broth has gueton in it. If you get diagnosed then she you should see if there is a local support group. I know that has been extermely helpful for my friend because they provide her with not only support but they expose her to different foods she can eat that she can order thought them such as breads or baked goods that are often hard to find. Also go to companies websites a lot will tell you if the food is gueton free (if you think it might be but there are questionable ingredients).

Good luck with your test and I hope you health gets better!!!

My husband is also going through a lot of tests for chronic health problems and celiac disease is a possibility. He had a ton of bloodwork done and while the main test for celiac came up negative another one came up positive so in order to make sure it isn't a false positive he is having an endoscope done to get a biopsy. Also he is getting a colonoscopy done because he's been having chronic diarrhea. Celiac disease can be brought on by traumatic events like surgery (this is just one thing that can trigger it, there are others). He had his gallbladder out about 3 years ago and his GI system has not been right since. Anyway I've noticed when we have a supper of gluten free foods that he feels better the next morning, not 100% but a bit better. I've heard that it can be a difficult disease to live with because there are so many things that have gluten in them, like the person who mentioned salad dressing but you just have to get really good at reading food labels and asking questions when you go out to eat. Anyway best wishes with your tests, hope you get some answers soon.

Hi,
I have "silent" celiac's and my 16 year old son and my mother both have active celiacs. We were all diagnosed about two months ago. My ds was spending most nights in the bathroom and felt tired and achey all day. He wasn't thin or fat. My mom was down to 92 pounds at 5'4" with severe osteoporosis. We're all eating gluten-free now, and both of them are 100% better. I don't notice any difference which is why mine is labeled "silent".

I've found all sorts of substitutions- my ds lived on sandwiches, and thought he would die without pizza (he's 16, remember). After a few purchased loaves of gluten free bread that he declared as good as a cardboard box, he now loves chicken salads for lunch and is the envy of most of his friends who try to trade him their sandwiches :lol: We've also been very creative with corn tortillas (fajitas, mini pizzas), and have mad "pizza nachos". But enough of the junk food!

I've experimented with gluten free baking- I used to bake a lot of bread so it seemed like it should be no problem. Boy was I wrong! Muffins are easy. Bread is not. I finally last weekend, produced my first loaf of GOOD gluten free bread that looks like bread, tastes like bread, holds together, is sliceable, and doesn't end up a pile of crumbs. It's from the cookbook "The Gluten Free Gourmet Bakes Bread". Unfortunately, as far as I'm concerned, it's still a pretty empty carb nutritionally. But ds is happy.

My biggest change eating GF was finding a substitute for the 1/2 cup of Fiber One cereal that I used every morning to boost my fiber intake. I've added 2 tablespoons of ground flax seeds to my breakfast, and a teaspoon of psyllium husks to my intake somewhere during each day.

If you try to follow a non-processed, whole foods lifestyle, eating gluten free is not such a huge issue. Processed food and most restaurants are a minefield though if you are very sensitive. The least bit of contamination and my son is sick for 4 days. We are VERY careful. I cook almost everything from scratch, and serve a lot of fresh vegetables, fruit, chicken, etc. Be very careful of any kind of sauce or bottled dressings. There are quite a few restaurants that have gluten free menus, or can accomodate you. I just got the GF menus from Carrabas and PF Chang. When in doubt, I call ahead and ask to speak to the manager or chef.

Here's a website with a support forum which I found really helpful.
http://www.glutenfreeforum.com/

The other source of GF foods that I've found is Amazon. They have a huge selection and you can click through to it from the front page of 3FC and help support this site! I paid the yearly Amazon Prime membership because I'm ordering so much from there. It's a lot cheaper than my grocery store, and it sure is easier to just have the stuff show up on your doorstep :) The only cautionary note is that they sell almost everying in bulk packages of 4-6 items. If you're not sure about whether you are going to like something, try paying a little more and buy ONE at your local grocery or health food store, then order in bulk. That way you won't end up with 5 loaves of yucky bread that no one will eat!

Good luck and good health! Feel free to PM me. I haven't been at this long, but I've done a lot of research!

Mel

Hi,

My sister has the same problem and ends up in hospital if she eats something on the no-go list. I think she was so afraid of eating food that her diet became very restrictive - then she went to see a nutritionist who opened her eyes to all the foods she could eat that were safe. Here there is a limited range in supermarkets with goods made free from wheat, etc. I have now got so used to cooking with these ingredients for her that I only eat pasta that is made from corn/ eat corn tortillas as wraps instead of sandwiches/ rice noodles, rice bread, oat/ rice milk, etc. It takes some major adjusting to but once you've had a chance to experiment I'm sure you'll be able to come up with some delicious meals with the ingredients that don't do you any harm. Hopefully there are health food stores in the states that make your life a bit easier.

EM

A caution about oats and comparing US and UK gluten free standards: Oats are controversial for highly sensitive celiacs. It's not so much the actual oats, but the contamination from the processing and packaging plants. McCanns has the least amount of gluten, Quaker has so much that is is NOT considered gluten free. There are two sources of organic, gluten free oatmeal sold in the US, and they are really expensive and only availabe from a few healthfood stores or on-line. Check the glutenfreemall link from the site I posted above.

The labeling standards for GF are different in the UK. More contamination is alloed. At a conference last summer in England, most of the US delegates got sick eating UK gluten free foods. Once you go on a gluten free diet, if gluten is your problem, you'll feel a lot better, but you'll also become even more sensitized to "getting glutened".

Angihas2- If your daughter has Celiac's, either you or your husband carry the genes for celiac sprue and gluten intolerance. They just haven't been "triggered". It's an inherited genetic condition. As a provious poster mentioned, some event "turns on" the genes. But you or your husband carry them if the child is biologically yours. In my family, my mother, myself, 2 of my brothers, and both my kids all carry the same genes. Only my mother, one brother (who is really a half brother), and my son have active cases. My siblings haven't had genetic testing done yet on their children because they have no symptoms. I thought it better for my kids to know- and my son was already sick. My daughter will know what's happening if she does start having problems. If you carry the genes, you could be pretty sick before you start seeing problems. We've chosen to go gluten free even tho we have no symtoms because because it's a whole lot easier to support my ds, and by the time you see symptoms, they could be cancer, osteoporosis, or other life threatening illnesses.

How Cheery!
Mel

Mel

Hi, GFers! My 5yo son, 3yo daughter, and I are all gluten-free.

According to research, Celiac usually manifests either in early childhood or in the 30s. It does have a genetic component and tends to run in families, and is often undiagnosed or misdiagnosed. Unfortunately the blood tests can have high rates of false negatives and even the biopsies are not conclusive, since there can still be healthy patches of intestine remaining. Unless 100% of the intestine has been damaged, it's hit and miss with the piece that gets chosen for the biopsy. IMO, the most reliable way to diagnose Celiac is to try the cure (the gluten-free diet) and see if it works. I wish there was a better test, but the pharmaceutical companies and medical fields don't stand to profit much from Celiac research, since the most effective (and completely effective) treatment is so natural and non-medical. I'm not generally a conspiracy theorist, but I do think that I may be onto something with this one.

There are definitely overweight Celiacs and it is theorized that because the body cannot absorb the nutrients it needs due to the gluten damage of the intestine, the body tried to compensate by increasing the appetite of the individual. So you will see some overweight/obese Celiacs who are malnourished--low energy level, poor teeth, etc.

I've been making yummy gluten-free food for about 3 years now. Celiac.com has some awesome message boards, and the Bette Hagman cookbooks are great. I've been on and off gluten over the past few years and am finally coming to terms with the fact that I will never stay healthy if I keep going back on gluten. The healthiest times in my life have been when I was off of it, and I need to accept that this is a lifestyle forever and be grateful that I know my cure.

Yup, I know it's come down the genetic pip for Alannah, I just don't know where, since as far as we know, noone in our families has it. My dad, may have it, I'm pretty sure, since symptoms are the same and seem to present after a glutenfull meal. He however, wont ask for testing and follows the "I'm lactose intolerant" crowd. He very well could be, but having become a bit more educated on it and from simply watching and observing and listening to his complaints, I truly think it's Celiacs. It's neither here nor there if he wont take pains to find out, after all he's over 18 and free to do as he pleases. All of the people in this house have taken a more or less gluten free lifestyle. If we want more glutenish products, Matt and I have a lunch date while the kids are at day care, but we both admit to feeling blech afterwards.

This is managable if people simply educate themselves and ask questions.