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Newly Diagnosed
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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.

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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.

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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.

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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. :)

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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.

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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.

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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