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Just Diagnosed Today...
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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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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!!!!

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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

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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.

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

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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!

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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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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.

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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

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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!

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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.

http://www.ncbi.nlm.nih.gov/pubmed/19595389

http://www.ncbi.nlm.nih.gov/pubmed/18467904

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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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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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