Celiac Disease

[cynsaun]

Anyone have any information on this?

Thanks!

 

[laurajetter]

My husband's friend has it... he was diagnosed a few years back after doctors were fervently trying to figure out what was wrong with him. I don't remember the details, but I know at the time he was having stomach problems and ended up losing a bunch of weight.

Finally they diagnosed him with Celiac disease, which means he is allergic to gluten. I don't know if there is more to it than that, but that is how he explained it to us. His allergy is extremely sensitive, his food can't be cooked in the same cookware as anything that may possibly have gluten in it... even the slightest trace amounts affect him horribly.

I know that he now needs to shop for food at specialty stores, and it really has been a lifestyle change. It's hard for him to eat out anywhere because unless he sees or knows for absolute certainty how something was prepared, he can't have it.

Are there specific questions you have? I can try and find out the answers for you.

Laura

 

[cynsaun]

Thanks, Laura. I am just learning about this, as I just saw my doctor this morning. She wants me to change my diet, as she thinks I have Celiac Disease.

I was just wondering how people that have this deal with it, how much of a difference eating a gluten-free diet really makes, etc.

 

[ksjayhawks]

My friend has two dd's that have it. If you want, I can pass your name and email on to her. I know she works with others who have family members with it.

 

[DisneyLovingMama]

Soon to be ex-DH thought he had it for seven years. He never had a biopsy, but had two blood tests. Only one came out positive, but his doctor never told him that - just told him he had celiac. He followed the diet for 7 years, with some improvement. When he got sick again, for a prolonged period of time, he went to a doctor that specialized in celiac. Turns out he has Crohn's Disease.

My only advice is to get the biopsy and not just the blood tests.

 

[tiggerlover]

My husband's friend has it... he was diagnosed a few years back after doctors were fervently trying to figure out what was wrong with him. I don't remember the details, but I know at the time he was having stomach problems and ended up losing a bunch of weight.

My mother was the same way, she was so sick for so long (we thought she was dying) and after many, many tests it turns out she has celiac. She has to have a gluten/wheat free diet. Makes her choices limited, however, with the proper education and specialty store that sell wheat-free/gluten-free products you can eat some foods you would think you can't. Pam's Gourmet makes some wonderful cookies, which I used this Christmas to make a crust to a cheesecake for mom. She now makes her own bread in her breadmaker since she can't have regular breads and she even found a gluten-free bakery about a half hour from her house.

Here is some information that I had from the web:

Celiac Disease
What is celiac disease?
Celiac disease is a disorder that causes problems in your intestines when you eat gluten, which is in wheat, rye, barley and oats. Gluten is like a poison to people with celiac disease.
What does gluten do to people with celiac disease?
Gluten damages the intestines. This damage keeps your body from taking in many of the nutrients in the food you eat. These include vitamins, calcium, protein, carbohydrates, fats and other important nutrients. Your body can't work well without these nutrients.

How did I get celiac disease?
Celiac disease runs in the family. You inherited the tendency to get this disease from your parents. If 1 member of your family has celiac disease, about 1 out of 10 other members of your family is likely to have it. You may have this tendency for a while without getting sick. Then something like severe stress, physical injury, infection, childbirth or surgery can "turn on" your celiac disease.
What happens to people with celiac disease?
Celiac disease can cause different problems at different times:

An infant with celiac disease may have abdominal pain and diarrhea (even bloody diarrhea), and may fail to grow and gain weight.
A young child may have abdominal pain with nausea and lack of appetite, anemia (not enough iron in the blood), mouth sores and allergic dermatitis (skin rash).
A child could be irritable, fretful, emotionally withdrawn or excessively dependent.
In later stages, a child may become malnourished, with or without vomiting and diarrhea. This would cause the child to have a large tummy, thin thigh muscles and flat buttocks.
Teenagers may hit puberty late and be short. Celiac disease might cause some hair loss (a condition called alopecia areata).
What happens in adults with celiac disease?
Adults who begin to be ill with celiac disease might have a general feeling of poor health, with fatigue, irritability and depression, even if they have few intestinal problems. One serious illness that often occurs is osteoporosis (loss of calcium from the bones). A symptom of osteoporosis may be night-time bone pain. About 5% of adults with celiac disease have anemia. Lactose intolerance (problem with foods like milk) is common in patients of all ages with celiac disease. It usually disappears when they follow a gluten-free diet.
Celiac disease sounds really serious! How can I control it?
Celiac disease is serious. Fortunately you can control celiac disease just by not eating any gluten. By following the right diet, you can reverse the damage caused by celiac disease and you'll feel better. But if you "cheat" on your diet, the damage will come back, even if you don't feel sick right away.

You'll have to explain your problem and the gluten-free diet to your family members and ask for their support and help. It will take time for you and your family to learn how to avoid gluten in your diet. You can contact one of the celiac support groups listed in the right column of this handout. These groups are excellent sources of information and advice. They'll help you find gluten-free foods and good recipes, and give you tips for successfully living with celiac disease.

How can I be sure I have celiac disease?
New blood tests can help your doctor diagnose this disease. It's necessary to have these blood tests before you start a gluten free-diet. If you have dermatitis herpetiformis (an itchy, blistery skin problem), you have celiac disease. The diagnosis can be confirmed with a biopsy (taking a piece of tissue using a thin tube that is put into your intestines). The best confirmation, though, is if your symptoms go away when you follow a strict gluten-free diet.
What resources are there for people with celiac disease?
In the following cookbooks, the author, who has celiac disease herself, shares what she has learned about a gluten-free diet. Bette Hagman is the author. The publisher is Henry Holt and Co.

The Gluten-Free Gourmet: Living Well Without Wheat
More From the Gluten-Free Gourmet
The Gluten-Free Gourmet Cooks Fast and Healthy
This book is a general guide to living gluten-free:

Against the Grain: The Slightly Eccentric Guide to Living Well Without Gluten or Wheat, written by Jax Peters Lowell and published by Henry Holt and Co.
Other Organizations
Celiac Disease Foundation
http://www.celiac.org
13251 Ventura Blvd., #1
Studio City, CA 91604
818-990-2354

American Celiac Society-Dietary Support Coalition
58 Musano Court
West Orange, NJ 07052
973-325-8837

Celiac Sprue Association
http://www.csaceliacs.org
1-877-CSA-4CSA
celiacs@csaceliacs.org

Gluten Intolerance Group of North America
15110 10th Ave. SW, Suite A
Seattle, WA 98166-1820
206-246-6652

Since my mom was diagnosed and started her new eating plan all of her symptoms have gone away and she is now problem-free.

 

[Honu]

Soon to be ex-DH thought he had it for seven years. He never had a biopsy, but had two blood tests. Only one came out positive, but his doctor never told him that - just told him he had celiac. He followed the diet for 7 years, with some improvement. When he got sick again, for a prolonged period of time, he went to a doctor that specialized in celiac. Turns out he has Crohn's Disease.

My only advice is to get the biopsy and not just the blood tests.

Same thing happened the my co-worker's teenager daughter. She was on a Celiac diet for 2 years.

I hope you are feeling better soon.

 

[cynsaun]

Thanks, everyone for your replies. I'm still really confused about all this, as I merely went in today for a physical!

 

[chell]

Sorry that I don't have first hand knowledge of this but I have heard that a gluten-free diet does wonders. Hope you get relief soon and feel wonderful again real soon.

 

[LMC]

I thought biopsy was for Chrons and blood tests were used to determine celiac. We are going thru all this right now w/ my DS10. They want to scope him from both ends to see if they can find out what is going on w/ him. His IgA was a little low which they say can be celiac. He has problems immediately after he eats. I think he's gone thru just about every non-evasive test they have so now I have to think hard about putting him thru anymore. I want them to just tell me the diet and we follow it, but they say that the diet is too hard and if kids don't have celiac they don't recommend trying to follow it. So let's just tramautize my special needs kid instead.

 

[DisneyLovingMama]

There are biopsies for both.

 

[LMC]

So the blood work is not definative? To get a definative answer on celiac, they must biopsy? I just really don't know what to do. Sometimes I think spastic colon but whenever he eats its 50% of the time running to the potty for a bm and 50% vomiting. Sorry to get a little OT. We go back in two days so I'll talk to them some more.

 

[HayGan]

If everyone in your house is not on the diet you will have to be very careful with preparation surfaces, cooking utensils and appliances. A friend of mine has celiac and has to use seperate toasters, baking sheeets etc. for all of her food.

I should say that she feels SOOOOO much better than she did before her diagnosis.

 

[AnaheimGirl]

We have friends with Celiac. Both daughters are doing great on a gluten-free diet after horrible problems without it. Based on their experience, I'd also recommend doing the biopsy now, rather than after changing your diet. One of their dd's went gluten-free without doing the biopsy, but now that she hasn't had gluten for so long, any damage to her intestinal lining would have healed, so a biopsy won't show whether she has it or not. To diagnose Celiac, they'd have to put her back on a regular diet for like 6 weeks or so, in order to be able to see the damage being done. Well, who would want to do that?! They would, however, prefer to have a confirmed diagnosis. From what my friend says, it sounds like the blood test is just a screen, not a diagnosis, but don't take my word on that!

Good luck!