• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
wj73

Newly Diagnosed

Rate this topic

Recommended Posts

I was diagnosed 3 days ago with celiac disease and am feeling very overwhelmed. I had an endoscopy done for other reasons and as a way to eliminate causes for problems I was having the Dr did a biopsy to check for celiac. I did not know she was going to do this and did not think anything of it until she called me 3 days latter to tell me I have early stage celiac disease. I meet with a dietician this week and have been trying to do some research nonlinear but it has only made me feel more anxious.

I am a 38 year old wife and mother of 2 teenagers. I teach special education in an elementary school and I am nervous about what life style changes this means and how it will affect my family. Any advice would be appreciated.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


It's not as bad as you think. Once you get used to the diet changes, it is pretty easy. I would recommend finding a support group in your area and/or possibly a nutritionist/dietician to get you started. Look for Celiac conferences and gluten free food fairs. They have great info. And ask lots of questions on forums like this. We have all been through it and probably have answers.

To start, for bread my favorites are Udi's and Rudi's. Scharr makes great products too.

As for your family, they will be fine with your changes. My kids were 8 and 11 when I was diagnosed and it hasn't affected them much. They actually eat better because I cook and bake more!

Hope this helps! Good luck!!

I was diagnosed 3 days ago with celiac disease and am feeling very overwhelmed. I had an endoscopy done for other reasons and as a way to eliminate causes for problems I was having the Dr did a biopsy to check for celiac. I did not know she was going to do this and did not think anything of it until she called me 3 days latter to tell me I have early stage celiac disease. I meet with a dietician this week and have been trying to do some research nonlinear but it has only made me feel more anxious.

I am a 38 year old wife and mother of 2 teenagers. I teach special education in an elementary school and I am nervous about what life style changes this means and how it will affect my family. Any advice would be appreciated.

Share this post


Link to post
Share on other sites

It seems overwhelming at first, but you get used to it.

Since the biopsy found damage, it will take time on the gluten-free diet for that damage to heal.

Share this post


Link to post
Share on other sites

Welcome to the board!

As a teacher, one of the things it will mean is that you will not be able to handle any food products containing gluten in the classroom - projects with macaroni, PlayDoh (sp?), class treats, unless you are extremely careful about handwashing.

It also means that, since celiac has a genetic component, you should have both of your children tested for celiac also (the blood tests).

As far as a lifestyle at home, this is up to you. Some families choose to go gluten free in the house and eat gluten outside the home. It makes it a lot easier and safer for the celiac, and it makes cooking easier. Cooking two meals for a working mother is not something that should be expected IMHO. That way you can rid the house of gluten except for special snack foods that can be kept separate. Most of your basic meals are inherently gluten free anyway, meat, veggies, fruits, beans, rice, nuts, etc. You will have to come up with gluten free stocks (beef, chicken), something for thickening sauces (cornstarch, gluten free flour, a good all purpose baking mix (Pamela's is often a good place to start, or Bisquik gluten free), cereals, bread and pasta. Read all labels of any processed food you buy - wheat is required to be listed, but not barley or rye, and barley can sneak in as malt, e.g., on cereals. You can make it a rule if it is easier at first not to buy anything unless it is marked as gluten free. IF either of your children test positive this option would seem to be good for your family.

If your family is not willing to forego their gluteny breads then they must be trained to clean up their crumbs off the counters. You will need separate shelves in the fridge and pantry for your gluten frees, including jars of mayo and other spreads (cross-contamination), separate toaster and colander, cutting board, etc. Ready Newbie 101 for getting started.

I wish you well on your new style of eating. :)

Share this post


Link to post
Share on other sites

Sorry to hear of your diagnosis as celiac can be overwhelming at first. On the bright side, it sounds like you've caught it early so you may be able to avoid the complications that living with untreated celiac seems to produce. Plus as the others said, the diet gets easy pretty quickly.

There are a lot of books on celiac since we apparently are the "new and trendy" autoimmune disease now a days. LOL ;) I really liked Green's book entitled Celiac Disease: a Silent Epidemic; there is even a Celiac Disease for Dummies now. Wheat Belly is a great book to read if you want some reasons why everybody should cut wheat out of their lives.

Take the books, or food lists, shopping with you the first few times you go to buy gluten-free foods. It's often handy to have a reference to check if in doubt. There are many substitute foods out there like rice noodles, corn or rice tortillas, pancake and muffin mixes, and many types of flours to cook with (get a few gluten-free cookbooks from your library too). Be careful of sauces like soy, worchestershire, and teriyaki which usually have gluten. Some spices have gluten, and many powder sauce mixes and gravies do too. I cleaned out my cupboards and fridge and gave away the gluten containing sauces and malt vinegars and replaced almost all of it with gluten-free foods so cooking would be easier for me. Also, be careful of sugar bins or baking soda (etc) that a floured measuring cup might have been dipped into.

I appear to be the only celiac in the house but I only buy gluten-free foods to save me hassle (and to be safe just in case my kids do have it). Everyone has slowly adjusted; I switched them over to gluten-free over a few months.

You might want to get your thyroid checked (TSH and thyroid antibodies) since Hashimoto's hypothyroidism occurs with some frequency amoung celiacs. Also, many celiacs have low vitamin levels like D, B12, calcium,and iron because our ability to absorb nutrients is compromised.

Share this post


Link to post
Share on other sites
Ads by Google:


Welcome wj.

It looks overwhelming at first . . . but you'll be surprised how quickly you get a handle on this gluten free thing. My daughter was diagnosed over 5 years ago. I'm amazed at how much easier it is to find gluten free products (I can get the majority of my gluten free products at my local Krogers) and how much better the overall quality and selection is.

We are a mixed household. It's really not that hard to do. All my cooking and baking is gluten free. I only "cook" one meal for the family and adjust the bread products accordingly. For example, tonight we had cheeseburgers and mac & cheese and veggies. The cheeseburgers & veggies are naturally gluten free, the mac and cheese, which were left overs from the other night, were made gluten free, the gluten eaters got gluten buns, the gluten free eaters did not. (My daughter actually prefers her cheeseburgers bun-free ;) ) It's really not too difficult to turn your current gluten meals into gluten free meals. Just ask for help with substitutions . . . there are lots of people here who have already been through it.

The gluten items that come into this house are all prepackaged kind of things . . . cereal, bread, crackers, cookies. The rule was (aimed at my son the gluten eater) if we didn't keep the kitchen clean enough or if we cross contaminated my daughter's peanut butter, butter, cream cheese, etc then I would take the whole house gluten free. Five years in and we are still good.

Here is a helpful link:

http://www.glutenfreeindy.com/foodlists/index.htm#donothidegluten

This is a list of companies that do not hide the gluten in their ingredient list. You just read the label and if you don't see wheat, rye, barley or oats listed, then it is not in there. Most celiacs can eat such a product . . . some sensitive celiacs may need to do further investigation to determine if the facility or equipment is shared with gluten containing products.

Good Luck . . . ask lots of questions. We're here to help.

  • Upvote 1

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
      108,946
    • Total Posts
      943,629
  • Member Statistics

    • Total Members
      67,291
    • Most Online
      3,093

    Newest Member
    Babyleprechaun
    Joined
  • Topics

  • Posts

    • They have all given you good advice. Like Ennis_Tx said this is not medical advice. Just some observations. Ennis_Tx mentioned already a good B-complex. But people who have Perncious Anemia low B-12 have "Pens and Needles' feeling in their extremities. Mine was much more pronounced when sleeping. . . while sleeping my nerve ending would go to sleep. This would wake me from my sleep.  I would shake them awake/loose much like a leg that had fallen asleep while awake.  We have all felt that feeling before except the whole side of body's nerve ending would tingle/fall asleep enough to wake me from my sleep. Once taking a homocysteine tablet (B6,b12 and folic acid) tablet call FABB for the abbreviated ingredients under doctor's supervision this "pens and needles' went away. This also happened in my finger and toe tips while awake as if I had pinched a nerve in my back. These sensations are now in remission. Also if you think it is Rynaud's then try Niacin or Niacinamide.  It is a natural vasodialotor and the 'warm sensation" people take when using Niacin especially in a work out supplement is Niacin they add to enhance athletic performance for body builders.. . . because this opens capillaries approx. 10 % more allowing more air into the muscles thus improving their work out. This flushing goes away after a couple days of using Niacin.  The Niacinamide form does not flush the way the Niacin form does but provides the same benefit. Both Niacinamide and Magnesium each lower blood pressure approx. 10% each this way.  But if BP is a real problem for you  take the Homocysteine tablet mentioned above or just Folic Acid by itself. My BP is now normal after taking Folic Acid because it controls' how/what triggers constriction in our blood vessels thus effectively controlling BP. These are some times that I have used to improve my circulation. *** again this is not medical advice just things that have helped me with similar issues.  I hope this is helpful. 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God,
    • Thank you for your advices, Kareng and Ennis_TX. Hope you guys are still doing well with celiac. I will ask my doctor about the preparation for the Celiac screening and lymph node checking. By the way, do these test cost much? To Ennis_TX: Did you do any test or check for your lymph nodes, when you noticed them swelling. And did you have many of them? did you member their size? Were they hurt you. Sorry for asking to much. My doctor just told me do ultra sound. I dont know should I ask her to do another tests to make sure the reason of swelling lymph nodes
    • IF your still getting cramps look into supplementing with Magnesium, either Natural Vitality Calm or Doctors best in the glycinate powder. Depending on other symptoms and the way your body works depends on which form is best. Calm is best if you have hard stools, do not go daily with a BM you start it off small 1/4tsp and work it up to the full dose over a week or two. If you get loose stools cut back as you dose this to tolerance. Doctors best is easier on the stomach and will not cause D or loose stools like Calm but can cause you to really relax too much and cause very vivid dreams (this is a good sign that it is working) You will notice the cramps lessen with both of these. The cramps in combination with the numbness is a sign of magnesium deficiency which is caused by your damaged intestines normally and can be made worse by PPIs and a few other issues.
    • There is a test called Biocard available in Canada.  It is a home test kit.  Should be cheaper than $125.  Biocard is NOT a genetic test though.  Genetic tests are of limited usefulness.  
  • Upcoming Events