Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

New To This And Don't Know Where To Start...
0

20 posts in this topic

Hi

I was diagnosed 2 days ago and I am so lost and confused.

I've given the contents of my food cupboard to my house mates and now they think I am mad.

I have decided not to tell anyone about my celiac disease. House mates know and my parents, but i don't want to tell anyone else. Not because I am embarassed or anything, I just can't be bothered to explain it to people. I can't even explain it myself yet - I'm just not ready to tell anyone.

Has anyone else kept their celiac disease a secret? Just wondered if it is possible?

Thanks

0

Share this post


Link to post
Share on other sites


Ads by Google:

Well i dont know if it is possible to keep it a secret but i know how much trouble it in explaining it to everyone what it is and everything else. i dont know if i would be any help but if you want to you can email me or instant message me at pippigirl32@hotmail.com (thats my msn im) cjtsm@aol.com (my email). i have done lots of research on it and would love to help you. So feel free to im me any time.

Joe Moe

0

Share this post


Link to post
Share on other sites

Hi,

Thanks for that - will hopefully have a chat with you on msn sometime - I would really appreciate some advice!

Cheers

0

Share this post


Link to post
Share on other sites

Hi Nickra, welcome to the board. You know, I've been gluten free for almost 3

months, and I'm still trying to keep it a secret. Same reason like you... I'm not embarassed, I just don't think a lot of people understand what it's really like

unless they're going through it. The people who know are my immediate family and a couple of friends. That's it. And I'm doing my best to keep it that way, but

it's hard. Especially when they keep offering food and you keep turning it down and won't even have just a small bit. I sometimes just say, no thanks, I don't feel good after I eat bread and stuff like that. And that works most of the time. It's a challenge to keep it a secret, but do what you feel until you're ready to tell others.

Good luck and keep asking questions! :)

0

Share this post


Link to post
Share on other sites

I told my friends, especially because I often stay over with a lot of them and you really can't stay at someone's house and not tell them. I thought I wouldn't tell, like, strangers about it, though. But I pretty quickly decided that I'd rather not have people like waiters and stuff think that I was on Atkins when I asked for no bread. I think you just have to make a choice. People are going to think something if they're around when you eat, so you just have to decide what it is that you want them to think -- that you're on a diet, that you're just plain weird, that you have celiac disease.

0

Share this post


Link to post
Share on other sites




I can't say I wanted to keep it a secret, but then again with my Mom there is no way to keep ANYTHING a secret for very long. I was so sick for so long I was thrilled to have an answer that did not involve chemotherapy or worse. I am an extremely private person and I have found that by explaining the celiac disease to friends and family I actually have less to worry about when I eat with them. They all understand the very basics of a gluten-free meal and understand cross-contamination issues. And workers take my questions and requests much more seriously when I mention I have food allergies (I know it is not technically an allergy, but the word allergy equals lawsuit which makes them respond ).

In my opinion, the first few months are the hardest because the part about figuring out which foods you can actually eat is absolutely mind boggling to put it mildly. But it does get easier. I was biopsy diagnosed in Oct 2003. I still have mistakes but it gets easier. I made lists of staple foods, drinks (alcoholic), and restaurants that I know are gluten-free and I can eat at safely.

0

Share this post


Link to post
Share on other sites

Thanks everyone for the advice.

I think it was one of my house mates responses that put me off - i was feeling really down having only just been told i had celiac disease that day and he basically told me that doctors are full of rubbish and not to take any notice. - but he has no idea of the suffering i have been going through to make me go to the doc in the first place

when the doc first told me i was so relieved to actually have something diagnosed, ive struggled for so long with no real explanation - to have this immediatly pulled apart by a friend was difficult when all i really wanted was someone to tell me everything would be ok.

im feeling more positive today :rolleyes: but one thing i am not sure about is sticking to the gluten-free diet before i have my biopsy - i have had a positive blood test result but i am waiting for the hospital appointment now, but i dont want to continue damaging myself before i have the test. do most people wait until they have the biospy before starting the diet - my doctor didnt tell me to wait???

thanks again everyone

0

Share this post


Link to post
Share on other sites

As usual your doctor does not know much about Celiac. Please do not go on a gluten free diet until after your biopsy, it will skew the results. And ask the doctor who gives your the endoscopy to take a lot of biopsies, because Celiac is often missed because there can be spotty damage to your jejunum. Also, even if (and I do say if) the biopsies are not positive. Most of us Celiacs would suggest you try a gluten free diet for at least several months. Also the first month or so stay dairy free, often the digestive system in Celiacs cannot handle dairy. But when the villi begin to heal, you may again be able to consume dairy. Don't allow anyone to deter you from a proper diagnosis, friend or not. You are entitled to feel better and your health is the most important thing in your life. Believe me, I am the poster child for misdiagnoses. I started showing symptoms, dermatitis herpetiformis, when I was 14. And after many, many years of health problems was finally diagnosed at age 67, three years ago. If the dermatologist had put me on the wheat free diet, forever, that he suggested for three weeks, I would probably have a much healthier immune system. So-o-o, make your health your priority. Learn about Celiac. Read the celiac.com website carefully. Go to the GIG website and read that one. I hope your quest reveals the problem and you can lead a health life from now on. Shirley

0

Share this post


Link to post
Share on other sites

Thanks for your advice Shirley,

My doctor was quite honest with me and said she didnt know much about it - in fact she said i was the first person she has had come back positive from the blood test. so i will give her a ring on monday and tell her i dont want to affect the biopsy by going gluten free too soon.

not looking forward to cutting out dairy - but it will be so worth it if it makes me feel better!

thanks again to all of you, this forum has been a godsend in my first few days since being dx

nickra

0

Share this post


Link to post
Share on other sites

I have been gluten-free for over a year - well almost. I don't really tell anyone anything except that I can't eat wheat it is too much to explain. I am sure that I still injest some glutin. Before i went gluten-free I never had any symtoms - now when I have an accident _I get sick -

0

Share this post


Link to post
Share on other sites

andyc;

thats because your body got extra sensitive to gluten and, doesn't want it at all

0

Share this post


Link to post
Share on other sites

hi i was diag.. last summer and i found out that i had celiac disease ... and found out that i had it for a year ,, now i'm going crazy i'm stok in a smal town called lachute whit no one i know that as celiac disease there is nothing in town that can help me the stores that as special food and stuff are far .. crapy .. since the day that the symptomes started my life turn to be crap ... don't know what to do,, tired of having to eat wierd food that taste like crap... need help ,, i'm 22 years old live in a appartment i have look on the internet for stores and it cost so much no credit card ,, don't no what to eat no more .. don't no what to do no more ,, anyway al stop "bitching" i just don't know to who to talk about this kind of stuff ....

sorry for my poor spelling i'm french .... :unsure:

0

Share this post


Link to post
Share on other sites

NeDrz,

stick with the basics.. meat fruit and vegetables also cheeses if you can tolerate them. There is alot of variety just among those things if you give it a try! You can do it!!!

Denise

0

Share this post


Link to post
Share on other sites

yeah i got no problem whit milk (lactose) :D

0

Share this post


Link to post
Share on other sites

neRdz,

If you can eat corn, corn tortillas are really helpful. I make cheeseburgers, tuna salad, chicken breast, just all kinds of things, and eat them wrapped in corn tortillas. And obviously there's all kinds of mexican food you can make that way. One of my favorite easy lunches is quesadillas -- I put cheese in a tortilla and microwave it for 45 seconds or so and eat it with lots of salsa so there's even a little vegetables in it.

Plus you can do a lot with potatoes...I'm making hash tonight for dinner.

It's definitely easier to live where there are health-food stores that sell gluten-free foods, but even if you don't, there's a lot you can do with regular food ingredients. It just means you have to cook for yourself more than lots of Americans do. And if you ever visit a town with a health-food store, or even just with a bigger grocery store than you're used to, look around for things to bring back home. I also write lots of requests to my grocery store, and every now and then they actually get something I asked for, like gluten-free toaster waffles.

0

Share this post


Link to post
Share on other sites

Nerdz, I live in a small town in Kansas, and it takes an hour to get to the nearest decent healthfood store. We are quite poor, just a click above the poverty level, so I don't have much money to spend on "my" food. I just use fruits, veggies, and meats, and fix the meals from scratch. That way, I can hoard what I do get of breads and pastas, so it doesn't cost so much. It is fairly easy to be gluten-free if you shop around the perimeter of the store, do not buy processed foods, and fix everything yourself. Time is a factor, it takes lots of it. I am not sick like I was, so I think it is definitely worth the time!

0

Share this post


Link to post
Share on other sites

Dessa, If the nearest large town has an Asian market, the next time you are nearby try shopping there for cheap rice flour and tapioca flour, also sometimes they have garbanzo bean flour (also known as chickpea flour). That way you can make some of your own breads, etc. Shirley in San Diego

0

Share this post


Link to post
Share on other sites

I don't know about an Asian market, but we do have a mexican store. I will have to check them out. Thanks! :D

0

Share this post


Link to post
Share on other sites

I noticed that these messages are pinned and the one I posted ended up at the very end. Is there a secret to pinning these messages?

Thanks,

Rick

0

Share this post


Link to post
Share on other sites

Pinning just means that the topic is where it belongs on the board. It is more of a note to the other moderators that it has been checked by one of them. Your post winds up at the end because it is the most recent. Look at the dates and times, and you should see them to be in chronological order.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,118
    • Total Posts
      919,454
  • Topics

  • Posts

    • So, I have just yesterday had blood work done to test for Celiac so I am waiting on my results.  This was prompted when my Dr discovered that I was severely anemic and after other testing sent me to  Hematology.  I actually inquired if I could possibly have a gluten sensitive because of the anemia (which has improved with an iron supplement) and feeling bloated after eating and well most of the time actually and after some research I found that this could be a sign that of a gluten sensitivity.   The Hematology Dr also recommend an upper GI.  Do you think that I am on the right course to see if I possibly have Celiac?  Can this develope later in life ( I'm 46)?  I ate a meal last night that was gluten free and did not feel like nearly as bloated after eating, would I notice a change that quickly?  Thanksort for your input.   ANN
    • Yes, the first time you use gluten free flours, it feels like a challenge. ... of a gluten-free living after her elder kid was diagnosed with Celiac Disease. View the full article
    • 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. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,157
    • Most Online
      1,763

    Newest Member
    Anns
    Joined