Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

pugluver31902

Help!

Recommended Posts

Hi, I was just diagnosed with celiac's disease, and Im feeling very overwhelmed. Im having a hard time believing its even true. I had foot surgery, and my post op bloodwork was coming back abnormal, so the doctor ran a big panel of tests and the celiac test came back positive. Then I had a biopsy and the diagnosis was confirmed. I have never had any gastrointestinal trouble, so Im having a hard time believing this is really happening. I have started the gluten free diet, met with the dietician, and had a bone scan which revealed osteopenia. Im feeling really overwhelmed. Im reading these pamphlets that are talking about how Im at a huge risk for cancer, and other auto immune disorders and stuff. My biggest fear is that I wont know when I have accidently eated gluten, since Im asymptomatic. I guess I dont even know what my question is. Just seeing if anyone else can relate.... :(

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Even though I had been suspecting my daughter of having celiac for 7 years before she was dx'ed gluten intolerant by Enterolab, it was still a shock. And then I was shocked again to find out I had it, too.

You may notice that you feel better in general after you stop eating gluten. And you may start having symptoms when you do have gluten once you have eliminated most of it.

Once I started the diet, I felt a difference within 3 days. Many things that I just thought were normal went away. I thought I had ADD, I was always tired, and I had brain fog. Now I can tell when I have had some gluten because that all comes back. I also get a slight stomach ache right after I eat it. I never knowingly have gluten but I have been cross contaminated before.


Karen

gluten free 4/06

casein free 7/06

DQ1, DQ8

Daughter (11) gluten free 5/06, casein free 6/06

Daughter (9) gluten free 3/06, casein free 7/06, soy free, trying peanut free

vegetarian

gluten lite on and off since 1999

All dx'ed by Enterolab

Share this post


Link to post
Share on other sites

Also, if you follow the gluten free diet, your risk of cancer returns to normal and I think your risk of developing other auto-immune diseases decreases also.


Karen

gluten free 4/06

casein free 7/06

DQ1, DQ8

Daughter (11) gluten free 5/06, casein free 6/06

Daughter (9) gluten free 3/06, casein free 7/06, soy free, trying peanut free

vegetarian

gluten lite on and off since 1999

All dx'ed by Enterolab

Share this post


Link to post
Share on other sites
Guest celiacsher

Hey and welcome. Yes it is overwhelming and can be scary. As for the cancer, it can increase your risk but following the gluten-free diet will help alot. I am asymtomatic as well but can get upset tummy if glutened. It will happen from time to time just be very careful and read ALL labels. It will get easier and things will become just the norm. You are fortunate that you were diagnosed before you became very ill like I did. It has been 1 yr and 5 ms for me and I am feeling better slowly. Just remember it is a lifestyle change and will get easier I promise. If you have any other issues please email me I will be glad to help.

I hope this will become easier for you as time goes by.

Sherri

Share this post


Link to post
Share on other sites
Guest cassidy

That must be tough not to have any symptoms. I certainly feel bad for myself when I get glutened and feel crappy, but I think it would also be tough to be trying your hardest and not really know if you are doing everything right.

Just to try to put your mind at ease - most people get the hang of the diet fairly easily and if they are careful don't get themselves sick very often. So, even though you can't tell, you are probably going to do just fine on the diet. It does get easier. I really don't think of it at all when I'm at home because I have a good list of foods that I am used to eating.

Secondly, I have never really heard of anyone talking about cancer on this board. Yes, I realize it is a risk, but my mom was diagnosed in her 50s and me in my late 20s and lucky for us, that has never been an issue. People here do talk about all other sorts of complications that have gotten from celiac, but most resolve on the diet. So, yes, cancer is a concern, and may scare some people into staying on the diet, but based on what I have seen it isn't like tons of people are being diagnosed with it all the time. I stick to the diet and don't ever think about that anymore.

Good luck, you will find some great information here. Glad you figured things out before you got sick so you didn't have to suffer with unexplained symptoms for a long time.

Share this post


Link to post
Share on other sites

You are not alone in feeling asymptomatic. Be glad it was caught this early, so that you are. (I know, it's a mixed blessing...)

It's hard to get adjusting. Depending on how fast you naturally adjust to major change, you may find that you've only got another month to go, or another six months, until you feel comfortable having broken all the old habits (of eating wheat filled stuff) and replacing them with new habits (of having gluten free stuff around).

There's lots of different helpful advice around here, so keep on reading and asking questions!


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

Share this post


Link to post
Share on other sites

Thanks guys. I feel better knowing that everyone felt a little overwhelmed at first. Its just so hard! I was diagnosed right before Thanksgiving, and now with all the Christmas parties. Arrggh! But I am thankful that it was caught early. No complaints there. And I am thankful that I live in an area with a lot of gluten free stores. But it still sucks..... Lol

Share this post


Link to post
Share on other sites

I think some sites talk about the increase in cancer and auto-immune diseases to either make celiac seem more important to the ignorant who think it's just like a minimal lactose intolerance (Oh, so you get a little gas, who cares!) or to make newbies take the gluten-free diet seriously or to help health care professionals and us to bear in mind that the percentage of, say lupus, in the general population is a small number, but in symptomatic celiacs not on a gluten-free diet (or not yet healed) that percentage is higher (After all, diagnosis is a percentage and numbers game). so, IF you don't follow the diet, think about those other things. If you go gluten-free, think about more important matters.

Share this post


Link to post
Share on other sites

pug,

we are happy you are here and learned about Celiac Disease. i am sure you must be overwhelmed-especially without the symptoms. although it is tough, i am so happy you learned.

once you go gluten free and stay on a strict gluten free diet, your risk of many cancers and other problems decreases. Its often the undiagnosed that have higher rates of problems. however, there still is an increased risk for some. but the risk is still small!!! it is hard to grasp it all, but on the other hand, its a blessing to know we have the control to help ourselves!

feel free to ask any questions. let us know what we can do to help!!!

Laura

Share this post


Link to post
Share on other sites

Well here is a strange new turn of events. When I got my diagnosis, I was telling my mother-in-law about it, and she goes "Oh! I had celiac's when I was little, but I outgrew it. You will be fine in a few months." Now if you knew my mother in law, you would certanly NOT think she was fine. She is at a doc appt four days a week for one of her many ailments, and she NEVER thought it had anything to do with the celiacs! So then, her whole family starts thinking maybe they have it too. I have a sister in law who has the worst circulation and many other health problems. I have a niece and nephew (her kids) who also have problems. One is 8 and the size of a three year old. They thought he had a growth hormone problem. And my neice, also has a lot of medical problems. My husband has always had dental enamel problems. So once I start telling them about celiac's they decide to go get tested. My husband, sister-in-law, and niece and nephew all tested positive. All their problems were because they were so malnourished! So I thougth that was quite a coincidence. But my mother-in-law is still insisting that everyone will "grow out of it." So now that my husbands whole family has it, and I have it, and who knows how many people on my side of the family have it, we figure that when we have kids, they are doomed. Lol

Share this post


Link to post
Share on other sites