Newly Diagnosed And Clueless

[adorrell]

I was just diagnosed, tried one day on the diet and failed. I was wondering if it is worth it. Can anyone tell me that they feel markedly different. Will I really have energy on that diet? How to I get my sugar fix? What snacks can I eat? When can I expect to feel better?

Overwhelmed.

[angel-jd1]

I was wondering if it is worth it.

I guess if cancer, diabetes, lupus, infertility and tons of other nasty things don't make it "worth it" then I don't know what does.

I feel 200% better on the gluten free diet. I was deathly sick before. Now I have life and energy.

There are tons of things to eat. Most are naturally gluten free. It takes some work to get the hang of the diet. But it is much better than being sick.

When first starting out, stick to non packaged foods. Go for fresh meat, fruits, and veggies. Let your stomach heal. Then you can get a little more creative. Begin calling the manufacturers of some of your favorite products and ask them if they contain gluten. Most companies have that information readily available. You will find that many things are gluten free. You will learn what brands you can trust, and how to read labels. Things will fall into place and get easier. Hang in there.

-Jessica

[mommida]

Yes it is worth it! You're worth it!

There are so many people here, on this forum to help you. No question is stupid. You have been very sick and everything is probably overwhelming right now. Give yourself time to heal. You can get the hang of this diet.

I would suggest a Gluten-free Gourmet cookbook by Bette Hagman just for the description of Celiac, "the dark days" and Kids with Celiac by Danna Korn for emotional understanding and reference. For an actual cookbook with recipes that work for my cooking skills, Gluten free Kitchen by Roben Ryberg.

"Tomorrow is a new day with no mistakes in it." L.M.M.

Laura

[celiac3270]

It is completely worth it for the reasons Jessica mentioned above, in addition to how it makes you feel in general. And you didn't fail if you weren't 100% gluten-free the first day. I didn't get all the kinks out of my diet until I was a month in (I wasn't checking natural flavors, artificial flavors, modified food starch, etc.). Just get familiar with the diet, learn what you need to avoid, contact manufacturers, read the boards, and you'll understand it completely in a month.

Go to the site index on the celiac.com site...there are forbidden/safe ingredient lists and tips on maintaining a gluten-free diet...and information on a lot else.

[Canadian Karen]

It is perfectly normal to feel the way you do at the beginning. You are one the same road that we have all travelled down...... You will get to the point where, believe it or not, this diet will become easier and easier to accept and adhere to. Also, there are LOTS and LOTS of "regular" stuff on store shelves that we can still have. Have a look: (make sure you go down to the end of the post and click "View Full Message".....

Condiments and sauces:

Open Original Shared Link

Candy:

Open Original Shared Link

Convenience Meals:

Open Original Shared Link

Desserts:

Open Original Shared Link

Snacks:

Open Original Shared Link

and there is a whole lot more from where that came from!!!!!

Honestly, we aren't really as restricted and we feel like at first.....

Just make sure you look at all aspects of gluten in your life. I made the mistake of continuing to take Gas-X tablets like candy for my gas and bloating, and it turns out they contain gluten. It can be hidden in shampoos (I use Pantene), toothpaste (I use Aim), make up etc. etc. There is also a category over at Delphi for household and beauty products. They have an awesome list that I use quite often. Also, I rely alot on Kraft as they have a really good policy about not hiding any gluten.....

Also, if you need to check on any medications, go to:

www.glutenfreedrugs.com

Don't worry, we are here to navigate you through this and remember, no question is too weird or stupid. Just post and we will do our best!!!!

Karen

[adorrell]

Thanks for all your advice! When can I expect to feel a change?

[Canadian Karen]

Every person's healing process is different and unique. There are some that I have read that have said they had a monumental change within days.... others had to be on the diet for months before they started to feel better. It also depends on how successful you are in totally eliminating gluten. Just about everyone on here has had to go through their "slip-ups", until they got the hang of it. There are soooo many ways to get glutenized, i.e. hand lotions, glue on envelopes and stamps, cross contamination, vitamins, etc. that we all have had our slips and learned from them..... Just take one day at a time and soon you will sit back one day and say to yourself, "Hey, this isn't so terrible after all!!!!"

Karen

[minibabe]

I think that when you start feeling better is different for everyone. I statred feeling better after about three weeks. Hope that yours is sooner. Good luck

Amanda

[KaitiUSA]

It took me about 3 months to really see a change and then a few more months to get back to normal. It is so worth it otherwise you put yourself at risk for tons of things that are very serious and life threatening.

https://www.celiac.com/st_main.html?p_catid=12

Here is a link to the forbidden and safe lists that celiac3270 was talking about and it helps as a general guideline.

It may seem overwhelming at first but it gets better with time and you will eventually feel so much better. Hang in there

[ianm]

You didn't say your age and for how long you've felt sick. I didn't find out what was wrong with me until I was 36. It took 3 months to start feeling better and a full year before I could say I was healthy. It seems from most of the postings from older members that it takes longer to get better but it does get better. One day is not enough time for anybody. I have a close friend who I am convinced is gluten intolerant but won't go gluten-free because there is no instant cure. This attitude just doesn't make any sense to me. She has seen my life be completely transformed but would rather destroy her body than show some discipline and be responsible. I've learned more from this website than any other resource. It takes time but it is so worth it.

Ianm

[celiac3270]

Yup--there's no way to tell. It could be a month...could be three months--that's pretty likely, and it could take double or triple that. Either way, all you can do is be dilligent to the diet and if you make a mistake, don't stop altogether. Your intestines can be salvaged after one or two inevitable accidents. You could start to feel results within two weeks of being fully gluten-free, though...so don't give up!

[Guest BellyTimber]

Hi,

I felt a great deal better in a matter of weeks (at age 47) but have been up & down since. That's because my body has various side issues to get used to - also because my practical grasp of this new way of life is still a bit variable.

I happen to have heard of younger people who "infringe" from the gluten-free way of life because they get fed-up. I know what they mean. A number of us on this forum have gone through every known emotion because of all this. Keep reading - and asking - and I hope you will feel this is an incredible adventure that is always beckoning us back.

Now I did notice you mentioned a sugar fix - I don't know whether within reach of you, you have a shop that sells packaged gluten-free cakes, fruit pies & cookies - well those are just the thing in the circumstances though they are terribly expensive !

Some of us found our blood sugar swung more noticeably since going gluten-free but that's a thing to judge from your experience as you go, and above all, don't get anxious about it.

Really there is a very wide range of foods that are naturally gluten-free, perhaps they are less subsidised than the gluteny ones. Meat - fruit - veg - eggs - dairy - fish ...

(Use high levels of green leaf veg to keep up calcium & magnesium levels)

The forum has a large number of recipes on it, and so do many other sites and books.

If you can get them, puffed rice (without barley malt), corn flakes (without barley malt), puffet millet and puffed buckwheat make nice breakfast cereals.

I am lucky I like "subtle" (i.e. bland!) tastes fairly well anyway. But one can throw anything else tasty in as well!

I occasionally get bread like pumpernickel but made solely of buckwheat, millet and the like.

Rice, and "pasta" made from these grains, are relatively simple to cook (at the limit of my own skills more than two years in).

The crux of the matter is, I need to do more of my own baking & cooking, which I wasn't used to doing ...

Don't stop exploring this site for info. already posted, and ask - about utensils, methods, etc. Start very simple though, that's what I'm doing.

Very best of wishes

Michael

[plantime]

The first couple of weeks I was gluten-free, I didn't think I was feeling any better. Then I ate a regular roll. Whoa, boy, the difference was monumental! I knew without a doubt that I felt much better off gluten than I did on it! It takes time to heal and to notice the difference. It is very much worth it. I saw how my mom died, as an undiagnosed celiac. She did know that certain foods made her sick, but she ate them anyway. Her death was horrible, for her and for us. I do not want to go that way! I would much rather take the time to read labels and avoid certain foods than die young and horribly.

[sally-chippendale]

Hi All

I am so glad that you asked that, is it worth it. I have been thinking along the same lines. After finding out i had celiac disease in Oct 04 i have been on and off the diet.. i feel like i am trying to quit smoking or something.. that may seem silly but i love KFC and McDonalds so much!

I keep thinking of the damage its causing to my insides. I really don't want to get cancer. Does anyone know about the cancer bit, as my doc (specialist) was not very imformative. (I was not impressed.) I mean is it very common or rare?

I kind of ignored what i had at first... being a "silent celiac" it was very easy. i mean i get tired and feel run down but thats about it. . i have decided to stick to it though.. i think at some point you have to say "thats it im gluten free". I am on day two, again. I really hope you stick to it and hopefully i will too...

Celiac Sally

[KaitiUSA]

If you ignore the diet things such as cancer,osteoporosis,infertility etc. are common.You are putting yourself at risk for an early death....for gluten....is that worth your life? Even if you don't feel it...it does damage to your intestines. There are foods at McDonalds that are gluten free they have a list on their website however KFC does not have any. I love McDonalds fries and hash browns and have them all the time.(they are made is separate fryers) We can have more then you think though any place you go to you have to be careful of cross contamination.

[Ally2005]

In regards to cancer, osteoporosis ect. which are the most commom associated diseases? I asked this quesion to the President of the Celiac Assoc. where I live and she said the most commom associated diseases were anemia, osteo and diabetes in that order. I was unders the impression that cancer was not a significant risk. Someone described it to me this way...if you smoke you have a significant risk of getting cancer, if you have celiac and adhere to the diet you risk is very very verys low. Does anyone know where I can get the hard facts as to what diseases are most commom adhering and not adhering to the diet. I would love to know the numbers and this may lessen the panic I am feeling. The longer my symptoms persist the more I think about associated diseases.

Ally

[KaitiUSA]

If you follow the diet your chances for cancer are very low...if you do not then your chances sky rocket...If you follow the diet your body straightens itself out to function normally again. It took my symptoms a few months to go away...your body needs time to heal itself...the longer you go undiagnosed the longer the symptoms take to go away because of damage. What symptoms do you experience?

[celiac3270]

If you are on a strict gluten-free diet, you will likely not develop these conditions. If you went 20 years without a diagnosis, however, you could already start to develop some of these problems before you have a chance to turn it around. If that is the case, though, the gluten-free diet might act as....damage control...and prevention of other long-term problems. While on that, the long-term risks include:

Here is the list @ celiac.com about conditions that are definitely, probably, and maybe associated with celiac disease: at this link

But that list also includes the short-term symptoms (diarrhea, abdominal distention, etc.). Some long-term problems include:

Allergies

Asthma

Anemia

Arthritis

ADD

Autism

Cancer (Gastrointestinal carcinoma or lymphoma)

Diabetes (Type 1)

Epilepsy

Fibromyalgia

Kidney disease

Migraine Headaches

Nerve disease

Osteoporosis

Thyroid disorders

"Left untreated the mortality rate for someone with celiac dsiease is double that of the normal population. Further, the odds of acquiring gastrointestinal carcinoma or lyphoma (cancer) increase by a factor of 40 to 100 times that of the normal population...." - From the celiac.com site

[ianm]

Before going gluten-free I was about 80lbs overweight, high blood pressure and was on the verge of diabetes. Since going gluten-free I am down to a healthy weight, normal blood pressure and no problems with diabetes. I was 36 when I found out what the problem was. At about the age of 30 is when I really started to feel sick. It was always a problem before but became unbearable in my 30's. It's never too late to improve your health.

Ianm

[Rikki Tikki]

I think all the feelings we have are normal. I think when I was first diagosed I really didn't believe it, how could food that I liked so much make me sick? Then I cheated (just a little), eventually I figured that I liked the way I felt without it much better than the way I felt eating gluten. I am not going to say the road has always been easy, sometimes I really miss grabbing a hamburger, donut all those things. But I just ask myself if getting sick is worth the cost, and decide no.

Of course, today I had to go out of town, I ate some white rice at a restaurant and tonight I am not feeling so great. This is when it drives it home to me. Gosh, my tummy hurts....