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Just Diagnosed Today...

KarenW

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KarenW Newbie
KarenW
Posted

I just heard from the doctor today that my blood work came back positive for Celiac disease. I will be getting a packet in the mail with lots of information including a script for a bone scan and an appointment with a dietitian. I have been reading through the site and I'm feeling a little overwhelmed. I see many things that I can relate to. I am not underweight however , just the opposite and I am worried. I see that many people on the site talk about well needed weight gain and being hungry all the time. I certainly don't want to gain weight. I am also overwhelmed by the restrictions. Is there a complete (or extensive) list somewhere of things to avoid, beyond the obvious. Are there levels of Celiac disease? I do have the bloating, joint pain, dry skin, insomnia, periodic stomach pain with vomiting, bowel trouble, ridges in my nails, anemia. It seems like a lot as I am writing it, but there is a part of me that feels I am taking a lot of little things and making a big deal out of it since I am also in my 50's and some things are just expected with age. Has anyone else been conflicted? Thanks.

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farmwife67 Explorer
farmwife67
Posted

I just heard from the doctor today that my blood work came back positive for Celiac disease. I will be getting a packet in the mail with lots of information including a script for a bone scan and an appointment with a dietitian. I have been reading through the site and I'm feeling a little overwhelmed. I see many things that I can relate to. I am not underweight however , just the opposite and I am worried. I see that many people on the site talk about well needed weight gain and being hungry all the time. I certainly don't want to gain weight. I am also overwhelmed by the restrictions. Is there a complete (or extensive) list somewhere of things to avoid, beyond the obvious. Are there levels of Celiac disease? I do have the bloating, joint pain, dry skin, insomnia, periodic stomach pain with vomiting, bowel trouble, ridges in my nails, anemia. It seems like a lot as I am writing it, but there is a part of me that feels I am taking a lot of little things and making a big deal out of it since I am also in my 50's and some things are just expected with age. Has anyone else been conflicted? Thanks.

There are not levels of celiac disease, you either have it or you don't. (just like you can't be a little pregnant you either are or you aren't) You must completely omit wheat, oats, barley, and rye. There are many places to get help, keep asking questions here, it really isn't a bad diet. You just have to be cautious when eating out. If your whole house can go gluten free that helps too, because then there is no risk of cross contamination. It seems overwhelming, but it really isn't that bad, unless you are going away, then you just have to plan ahead. It is worth feeling better! Keep searching the web and this site and you will be very happy. I would like to recommend Udi's bread. It is the only bread that really tastes like bread and doesn't fall apart. You can get it at many places and your local health food store may be able to order it so you don't pay shipping charges. Trust me and many others here it is the only answer to store bought bread. I guess there are good recipes for bread, but I don't have time for that. Good luck and it will be worth the effort!!!!

sandy-sas Rookie
sandy-sas
Posted

There are not levels of celiac disease, you either have it or you don't. (just like you can't be a little pregnant you either are or you aren't) You must completely omit wheat, oats, barley, and rye.

Not everyone has to eliminate oats do they? My husband eats them all the time with no problem. I buy the gluten free oats. My husbands gastro doctor said he could eat regular oats as long as he didn't react to them.

Sandy

Jestgar Rising Star
Jestgar
Posted

gluten-free oats are fine if you have no reaction to them.

The diet gets easier with practice. It is completely overwhelming at first, but as you get used to knowing which things you can, and can't eat, it all becomes a habit.

For the first few months don't worry about how much you eat. Stick to healthy foods, and eat when you're hungry. Your body is deficient in a lot of nutrients and it is trying to recover them. After going gluten-free I lost about 30 pounds without changing anything else.

There are no levels - it is yes or no.

KarenW Newbie
KarenW
Posted
  • Author

Thank you all for replying. I am looking forward to learning and getting heathier.

nyctexangal Rookie
nyctexangal
Posted

I have lost 7 pounds since going gluten free in 3 months. So if you are overweight- you're body will love being gluten free and will work for you, not against you. But yes, VERY important to get on all the right supplements. Hang in there, I know it's overwhelming!

bluebonnet Explorer
bluebonnet
Posted

rewind 3 1/2 months ago when i first went gluten free and i lost 10 lbs in 1 month and steadily since. as of last weekend i am taking the gluten challenge and feeling it. like you, i am not an underweight celiac ... i had about 30 lbs i wanted to finally be rid of. BUT since eating gluten for a week i have not lost anything (actually put on 1 lb and my waist ballooned 2" to 3" ). bloating and D & C extremes. i'm trying to eat my gluten in healthier forms such as kashi over a donut so i don't think i'm gaining from that. it just seems like my body doesn't drop the weight like others. strange.

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Skylark Collaborator
Skylark
Posted

I just heard from the doctor today that my blood work came back positive for Celiac disease. I will be getting a packet in the mail with lots of information including a script for a bone scan and an appointment with a dietitian. I have been reading through the site and I'm feeling a little overwhelmed. I see many things that I can relate to. I am not underweight however , just the opposite and I am worried. I see that many people on the site talk about well needed weight gain and being hungry all the time. I certainly don't want to gain weight. I am also overwhelmed by the restrictions. Is there a complete (or extensive) list somewhere of things to avoid, beyond the obvious. Are there levels of Celiac disease? I do have the bloating, joint pain, dry skin, insomnia, periodic stomach pain with vomiting, bowel trouble, ridges in my nails, anemia. It seems like a lot as I am writing it, but there is a part of me that feels I am taking a lot of little things and making a big deal out of it since I am also in my 50's and some things are just expected with age. Has anyone else been conflicted? Thanks.

There is no such thing as levels of celiac. You have it, and will feel SO much better on a gluten-free diet. Don't worry about weight gain. Some celiacs are underweight, but others are overweight because they are malnourished and their body keeps telling them to eat. I had no weight changes at all when I switched diets.

Instead of getting overwhelmed, start simple and cook a lot. Eat fruits and veggies, salads with oil and vinegar (anything but malt vinegar is fine), rice, potatoes, and fresh meats with simple flavorings like onions or garlic. Plain, unprocessed cheese is great if you're not casein-sensitive. The produce department is the best place to find naturally gluten-free food. For breakfast, get gluten-free cereal like Rice Chex, Cream of Rice or grits, or make eggs and gluten-free toast or homemade hash browns.

Our host site, Celiac.com has links to diet lists right on the front page.

Salax Contributor
Salax
Posted

B) Congratulations on your new adventure!

I am not sure if you have health issues that got you to this point, but the journey here was the toughest for most of us. So if that is your situation, your not alone.

This site is the best site for us, the information is great and the people are awesome. We can and are your support group through this new adventure.

In regards to oats, gluten free oats are ok. Regular oats can be contaminated with wheat as generally they are grown and processes in the plant on the same lines. Which is why we usually avoid oats unless they are specifically labeled gluten free. No sure who asked that question. ;)

I too am an overweight celiac and the weight since the diet has started to slowly fall off. But a word of caution, processed gluten free foods usually (in most cases) have a higher calorie count. So beware. If you stick to meats, veggies, fruits, rice, corn and potatoes (if you can eat those as well), and some dairy after a bit (moderation of course)..you

jenngolightly Contributor
jenngolightly
Posted

Hi there. I wasn't underweight, either. Unfortunately, when I started the diet I looked for replacements to all of my gluten food and ended up gaining more weight! There are lots of prepackaged gluten-free junk foods that have lots of calories and can prevent you from losing weight. Cookies, chips, cereal, cinnamon rolls, muffins, bagels, pasta... What I had to learn was to stop buying that junk (and it's so much more expensive than the gluten counterparts), and start eating healthy food. Shop the perimeter of the grocery store - fruits and veggies, meats, and dairy aisles. There are also cereals as another poster mentioned. You don't have to live at Whole Foods, many foods are available at your local market. But you will find that it's more expensive in the long run. A loaf of Udi's is $4.50 - and it's much smaller than a loaf of regular bread. But well worth it.

I don't know about you, but I wasn't a cook before I was diagnosed. That made it hard to eat well. All of a sudden I had to learn to use my stove and oven for real food, not just warming up frozen dinners or making hamburger helper. I think that's another reason I gained weight - I was still trying to find quick alternatives to eating out and that meant junk food and lots of carbs.

Moral: Gluten-free doesn't mean low-calories!

Skylark Collaborator
Skylark
Posted

As far as oats, the scientific consensus is that while most celiacs can eat uncontaminated oats safely, a few cannot. Across studies, some people have dropped out of oat studies because they felt unwell, and one had a biopsy-proven reaction. There are also immunological measures that suggest minor reactions in some people. What's recommended in the literature now is that celiacs eating oats be followed with blood tests to be sure they can tolerate them.

Here's a link to two abstracts of recent reviews.

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gf-soph Apprentice
gf-soph
Posted

My grandmother is 85, she too thought that a lot of her problems were age related. She went gluten free as she know about my gluten intolerance and noticed that she felt sick after eating more whole grains. She survived bowel cancer in her 40s that nearly killed her, has osteoporosis and anxiety and didn't enjoy food much.

A few weeks later she feels *years* younger, is free of the stomach pain that she had for years, and is happier than I have ever known her. She enjoys her food again, sleeps better, has lost weight, and is far less anxious. Not everyone has such a quick or obvious reaction to going gluten free, but it goes to show that 50s certainly isn't too late to benefit :)

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