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

Just Been Diagnosed -- Help Me!
0

5 posts in this topic

I had been having stomach problems for a couple years, but my doctor didn't attribute it to Celiac disease. Finally, after going to a specialist and taking some tests, he said that the blood test revealed that I may have Celiac diseas and that my slightly low bone age backs that up. A few days ago I had the endoscopy done.

Prior to the procedure, I was told to maintain a regular diet. Now eating gluten-free, it has been difficult. I love potatoes, so I was glad to have a gluten-free starch that I enjoy. Unfortunately, I am a picky eater. Could someone please give a 13 year-old Celiac some advice on what foods are good? I can search stores for specific brands, if you have any.

School has been difficult as well. In the cafeteria, my problem is not about finding something I like, but something that I am allowed to eat. All I have found is fruit (peaches, apples, banannas, grapes, etc.) and yogurt some days. Thus, I have been eating meal replacement bars for lunch, in addition to whatever fruit I can get. I have also kept corn cakes and some gluten-free cookies in my bag if I start to starve. I haven't found many good meal bars? Again, any advice?

Finally, having just begun the diet, I am not entirely knowledgable. I have read and researched a good deal and will soon see a dietarian about what I can eat and stuff. I have a nine year old brother who likes to eat gluten-packed foods, but that hasn't bothered me too much yet. The rest of my family is being tested. Any advice for a Celiac new to the diet and way of life? All responses are appreciated. Thanks for helping.

0

Share this post


Link to post
Share on other sites


Ads by Google:

celiac3270:

I'll be honest that it isn't easy. I'm 28 - diagnosed when I was 2. I would bring my lunch most of the time. Just to be certain. Trust me, it is not worth it - eating something that not only is going to make you feel terrible, but cause possible permanent damage to your body. Hang in there. If you have a Whole Foods store or Wild Oat store near you - they have a wonderful selection of foods and products. You can almost make anything that you want from what they offer. If not, get online and start ordering.

Keep your head up high and be thankful that what you have is only Celiac Disease and not something else that was terminal, etc.

With time, it will just become natural as to what you can and cannot eat. Again, hang in there. You'll be o.k. Tammy :)

0

Share this post


Link to post
Share on other sites

Hey celiac3270...

As Tammy said, being gluten free isn't easy. We all struggle and feel down about it and you'll have days where you feel like that too. But the reality of it is we can't change the facts. But you know what? I'm sure you can do this. Below is a link to a list of gluten free products... I hope you find it helpful... it has helped me out a fair bit. These message boards are a great resource because you'll find a lot of people on here who are going through the same things as you. Also, there is a teen section that may be helpful for you since you're 13. I'm 20 and being g.f. is tough on me, so I know there will be tough days for you as well. But I'm SURE you'll be able to do this! Try your best and good luck to you. Here's the link:

http://homepage.mac.com/sholland/celiac/GFfoodlist903.pdf

0

Share this post


Link to post
Share on other sites

Wow celiac3270, it is hard to believe that you are only 13. Having Celiac must have made you smarter than the average population. Just the fact that you are posting here says alot for your determination.

I am 59 and have had Celiac since age 8. My primary, main goal in life is to have good health so I can help others. My new grandson has Celiac too. I've started creating new recipes with him in mind, so that is where I'll start.

Eating meats, fruits, and vegetables is the simplest way to avoid gluten. Making your own meals assures that you keep a healthy diet. Carrying foods and drinks with you wherever you go makes it certain that you will stay strong. I haven't seen many prepared foods that I can eat. Milk and dairy in prepared products can be hazardous, along with casein, whey, malt additives, egg whites and yeast.

I went to meats, fruits, and vegetables only for awhile, then added back one food at a time. I like sugar. I eat a little each day, and am doing great. Chocolate, butter, etc. are based on milk. I eat Imperial Margarine instead, and can eat Kraft Mayonnaise. I can drink Diet Rite Raspberry soda, A&W Root Beer, and Dr. Pepper Diet Caffeine soda. It is good to get a lot of liquids.

My top priority is to put only the foods I trust into my mouth. Reading labels diligently and learning what the food industry calls things is important. Let us know how you are doing, okay? Remember, we are all doing this diet "one day at a time!" Always, Welda

0

Share this post


Link to post
Share on other sites

celiac3270,

Glad to see you here, and know that everyone here will help to answer your questions. I have only been gluten-free about 6 months, and I come here nearly every day, mostly because there are people like me here. I just had my first Gluten ACCIDENT, and trust me, it ain't no fun. After a week, I'm finally feeling better. The biggest thing for me has been to train myself to read, read, read, EVERY LABLE. Even then, something may throw you a ringer.

Chin up, and be glad that it isn't something worse.

You have friends here.

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
      104,365
    • Total Posts
      920,552
  • Topics

  • Posts

    • Well, I am stressed to the max. I just spent 3 days in the hospital with D and stomach pain, dizziness, chest pain, generally unwell. Then another trip to the ER on top of that. My protein was low and my RBC and hemoglobin dropped below normal in 3 days. Not terribly low, but below normal. I also had metabolic acidosis which still confuses me. I usually eat every 2-3 hours despite it causing pain to keep my energy up and was unable to eat that frequently in the hospital. I usually carry protein with me and had been taking liquid iron which I stopped a few weeks ago because my new endo is not a fan of iron supplements. As soon as I got home from the hospital I started with my protein drinks and blackstrap molasses for iron.  I now have bilateral mild pleural effusions and a nodule on my left lung, which hopefully is nothing, but was not there on a CT back in March. In addition, my left adrenal gland, which also appeared normal in March, is calcified and the report indicates this is most likely due to a previous bleed or infection. My colon appears tortuous (whatever that means) and we are waiting on colon/endo biopsies. I have been gluten-free since March except for cc so expect the biopsies to again be negative.  My primary care is useless. I am in the process of getting a new one I will see on the 7th but need the current one to fill out FMLA paperwork because I both physically and mentally need time to recover. I will have to go off of payroll for 2 weeks but I think I need to. I called the primary's office today to discuss the hospital tests which she does NOT have yet and to ask if we should/could start a low dose of prednisone because my body is attacking itself. My thyroid on ultrasound is also abnormal though my bloodwork thus far is normal. But it hurts on that side. The only reason the ultrasound was ordered is because I asked for it in the first place. The only reason I have started seeing an endocrinologist is because I found one myself. Anyway...I broke down in tears on the phone eith her today and she told me I was having a "manic episode". I have no history of mania. I only recently started taking xanax to help me cope with the stress of being sick. I was not sick until I did this stupid gluten challenge over the winter. My mother was in town and spoke with the doctor on the phone as well who was trying to get my mom to take me to a psych hospital. She also threatened to send the police to check on me. My mother assured her I was in no danger and we hung up the phone in complete shock. Admittedly, I was in tears when I called her and probably sounded like a fucking mess. But I believe I referenced the dropping iron, protein, fluid near lungs, enlarged thyroid and attacked adrenal gland then literally said "my body is attacking itself and I need help" to which she said, "I think you are manic". Lovely. If I was a mess before that phone call it was 10x worse when we hung up.  Anyway, this is the first night it has been extremely difficult to sleep. I admit my thoughts about my odd symptoms keep me up often recently. I mean, who the hell bleeds from or gets an infected adrenal gland?! I am sure it was another time I begged my primary for help. On a side not, the NP at the ER told me the primary should be putting these pieces together and communicating with my other doctors better. He then stated that he used to go to the same practice but left because the practice got too big and like a business. So I got some validation from that chat.  A melatonin or a .25 xanax usually does the trick for me to sleep but I am so disturbed about my interaction today, stressed at my health, stressed that my ex has our son so much because I am always sick (bless him for coming through), stressed that I have to go back to this awful doctor because I will need the FMLA paperwork before I see the new doc on the 7th.  8 months ago, I took a multivitamin when I remembered it and that was it.  End rant. Maybe now that it is off my chest I can finally sleep. 
    • Hi DKH0614, I use aspirin, Pepto Bismol, and peppermint tea or Altoids peppermints.  Pepto Bismol has a soothing effect on the gut.  Pepto Bismol also has aspirin in it.  Peppermint is helpful for relaxing smooth muscle tissue and getting gas out of the stomach. As per KarenG, you may be reacting to dairy.  Dairy has a sugar called lactose in it that some people with celiac have a hard time digesting.  You could try avoiding dairy for a few weeks to see if that helps.  Or try taking lactaid type pills when you eat dairy. It doesn't take very much gluten to cause an immune system reaction.  So it is important to avoid even traces of gluten if possible.  The stuff is hard to avoid sometimes if people around you don't understand how much a small amount of it can affect your body. Let us know if we can help with any  more questions, or if you have concerns we haven't addressed. And welcome to the forum! Also, if you subscribe to the thread (notify me of replies) you'll get an email when people respond to your thread.    
    • After a year and half, if you are eating gluten-free, you shouldn't be having pain from Celiac.  Perhaps you need to find out what is really causing your issues?  Dairy/ lactose is an obvious first place to look.
    • Hi! I am 15 and have been diagnosed with celiac disease for about a year and a half now and I am woundering what do some of y'all use to relive some of the abdominal pains that come along with celiac/gluten allergies?  ( Ibuprofen,  Tylenol, etc.) 
    • Hi Laurabella, Yes, you could have celiac disease!  It is important to keep eating gluten until all testing is completed, including an endoscopy with biopsy samples if the doctor recommends it.  The doctors usually do want the endoscopy.  The biopsy samples of the small intestine lining (4 to 6 samples) are checked for microscopic damage that indicates celiac disease.  Gall bladder problems can happen with celiac disease.  Your pain could also be from intestinal damage in any part of the small intestine. Some things you could try while you are waiting for your tests to be completed are stopping all dairy, and taking peppermint tea for gas in the stomach.  Celiac disease damage makes it hard to digest dairy sugar (lactose) and that can cause bloating and pain.  Constipation and diahrea are also possible fun symptoms. Welcome to the forum!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,439
    • Most Online
      1,763

    Newest Member
    DKH0614
    Joined