Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Just Diagnosed...


emorgan1985

Recommended Posts

emorgan1985 Rookie

Hello everyone. I have just been diagnosed with Celiac disease and was wondering if anyone had any tips on getting started...grocery lists, recipes, or just plain advice is more than welcome! I am lost and I haven't even begun! Again...any help will be much appreciated. (Especially what to look for on ingredient labels!)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

Welcome!

First of all, know what the ingredients are for anything you put into your mouth and do NOT trust anyone else to read the label for you.

I would start with meats, poultry, fish, veggies, fruit, brown rice, potatoes, eggs ... they are all naturally gluten-free. Eating a simple diet like this will also help you heal. You can cook them in butter, coconut oil, olive oil, which are all gluten-free. Single herbs or spices are gluten-free ... if they have more than one ingredient, it's iffy.

Then, figure out what you want to add to that diet. Research each item ... for instance, pasta ... Tinkyada is a good brand of gluten-free pasta. If you have some other specific food you would like, then post here and we'll guide you.

I would stay away from the gluten-free replacement products until you are feeling better.

CarlaB Enthusiast

On ingredient lists on foods, look at the allergen statement, if it lists wheat, no need to look further. If it doesn't list wheat, look for barley, malt, rye, oats.

On personal products, usually it's pretty easy to spot wheat, barley or oats on the label. Sometimes the names are listed in latin, but usually they have the translation in parenthesis next to it.

Be careful of charcoal ... it has wheat in it. Use natural charcoal or put your food on foil. Be careful of contamination from previously cooked items that were breaded or had a sauce with gluten.

Most soy sauce or Teriyaki has gluten. It will be listed on the label as wheat.

Get a new toaster. Kinnikinnick bread is good, sold in the freezer section of stores like Wild Oats. I also like Van's gluten-free frozen waffles.

Get rid of old wooden spoons or other kitchen gadgets made from porous materials (scratched Teflon, plastic colander, etc.).

It's hard in the beginning, but once you go through all the products you use regularly, it's easy and becomes second nature. I've literally replaced EVERYTHING with a gluten-free version. :)

Lisa Mentor

Carla gave you good advise. Start simple.

Mrs. Dash entire line is gluten free.

Lea & Perrins Worchestershire Sauce

Kraft Products will always list gluten

Con Agra Products will always list.

La Choy Soy Sauce is gluten free as is San J Wheat Free Tamari

New Toaster for you.

Check you Teflon pans for scratches (gluten can hide)

Shampoos - it can get into your mouth

Lipsticks or lip balms - mouth issues as well

Lotions - mouth issues again

The learning curve is a steep one, but it can be done.

If you need help, it is all here. Read, read, read...you will not find a better source for Celiac information.

There are a million recipies on this site. And you might like to check out the Product Information Thread.

AND...welcome to our Club! :)

emorgan1985 Rookie

Thanks sooo much! I really appreciate it!

emorgan1985 Rookie

Do you happen to know where I can find gluten free bread and pasta? I know it's out there but the grocery stores around here don't seem to know what it is!

CarlaB Enthusiast

Kroger usually has a nutrition section that carries some gluten-free stuff.

Wild Oats, Whole Foods, or health food stores also carry it. Be sure to look in the freezer for the bread. I like Kinnikinnick bread and Tinkyada Pasta.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



emorgan1985 Rookie

So how long in general does it take to start healing? When should I expect to start feeling better?

nikki-uk Enthusiast
So how long in general does it take to start healing? When should I expect to start feeling better?

This is really quite a tricky one to answer as it varies enormously from person to person.

Some people start to feel better in a few days - others take a bit longer.

My husband had alot of damage from celiac disease and it took him a good few months to feel any better (and it was a very slight thing - not something he noticed. It was only when he remembered how exhausted he felt at the beginning of going gluten-free that he realised he had made progress)

Hang in there!! - you will feel better :)

Queen Serenity Newbie

Hi and Welcome!

My suggestion for you is to stick to simple foods: meats, veggies and fruits. It will take you a while to become used to this experience. As for the healing time, it really does vary, depending on you and not getting yourself glutened. For me, it took a year for my body to feel a difference. Now, I can tell you, having lived with this for twelve years now, that you will become an expert at handling everything. :D Just give it some time! Back in the day, there wasn't as much food availability as there is today. There are so many companies on-line where you can order some of the best cakes, cookies, and even breads. Try the Gluten Free Cookir Jar. This women uses her own baking facility in back of her home, and makes things that taste like the real thing. Do you have a Shoprite store near you? They do carry gluten free foods. Have you ever approached the grocery manager at you local supermarket, and asked if they could order you gluten free foods? I had to do this years ago, and they can be very accomidating just to keep your business. How about health food stores? Are there any near you? They also carry gluten free foods. It's just a matter of patience and time. Besides, we're all here to help! Never be afraid to ask, no matter how stupid you think it is. Good Luck!

Vicki

barbara123 Apprentice
Hi and Welcome!

My suggestion for you is to stick to simple foods: meats, veggies and fruits. It will take you a while to become used to this experience. As for the healing time, it really does vary, depending on you and not getting yourself glutened. For me, it took a year for my body to feel a difference. Now, I can tell you, having lived with this for twelve years now, that you will become an expert at handling everything. :D Just give it some time! Back in the day, there wasn't as much food availability as there is today. There are so many companies on-line where you can order some of the best cakes, cookies, and even breads. Try the Gluten Free Cookir Jar. This women uses her own baking facility in back of her home, and makes things that taste like the real thing. Do you have a Shoprite store near you? They do carry gluten free foods. Have you ever approached the grocery manager at you local supermarket, and asked if they could order you gluten free foods? I had to do this years ago, and they can be very accomidating just to keep your business. How about health food stores? Are there any near you? They also carry gluten free foods. It's just a matter of patience and time. Besides, we're all here to help! Never be afraid to ask, no matter how stupid you think it is. Good Luck!

Vicki

been so tired, can't think and need to drop every chance i get. Been on the gluten-free diet now for 18 days now very happy that i am not vomiting anymore but cant do anything. Woke up this morning and have bliste on my lip :(

Dontl know if i am doing something wrong or what it's tiring just to take a breath. Feel dizzy went down and got some ensure would liquid vitamins help? Don't know what to do. This is getting frustrating. Thanks Barbara123

emorgan816 Newbie

I've ordered bread and pasta from kinnikinnick foods online. They even have a gluten free version of the Oreo (chocolate and vanilla). The stores by me are very lacking in selection too. Kinnikinnick does charge $10 for shipping, so I usually stock up when I order. Their donuts are not bad either.

Elizabeth

Queen Serenity Newbie

Hi Barbara,

Don't despair! 18 days is just a short period of time. You are only at the beginning of that long road to recovery. If you can, try and get as much rest as you can. Your body has been through a lot. Are you doing anything that is causing stress? Do you work? If so, did you return yet? If you did, ask your boss for light duty. Recovery is essential to your feeling better. You should not feel guilty about resting. Unfortuately for me, I could not do this during my recovery. I had two small sons at the time, and I was a stay at home mother. As for you energy levels, don't worry about it, it's all part of the process. Remember, your body has been through the war, now it has to build itself back up again. Trust me, in time you will feel better. I understand your brain fog issue, but as I said rest is the key. I hope you feel better with each passing day. Let me, or anyone else know, if you have any more questions. :)

Vicki

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,898
    • Most Online (within 30 mins)
      7,748

    MLucia
    Newest Member
    MLucia
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.