• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • 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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Newly Diagnosed Celiac- Have Removed Gluten But Still Having The Primary Symptom!
0

10 posts in this topic

Hi and thanks for reading this.

I finally had an endoscopy done last month which confirmed that I do have celiac. She sad my intestine was wrecked from it and had to start gluten-free immediately. So of course I have. But my main symptom, lower abdominal distention and pain (not stomach pain, but intestinal pain) continues.

So, I wondering what the hell is going on!

Is it because I'm having an issue with dairy now too? Or because I'm not really strict in the sense of having a gluten-free kitchen- I mean, I can't have my family go gluten-free too. I use the toaster they do...

or, is it the dairy

or, am I having other things that trigger the same response from my body that gluten does? Like does gluten-free steel cut oats not work for me?

And thoughts will be much appreciated.

Thanks!

0

Share this post


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


If you are using shared condiments, a shared toaster, and other sources of contamination, you are not yet gluten free, and cannot really expect to get better until you go completely gluten free.

2

Share this post


Link to post
Share on other sites

Yes, living in a household where others eat gluten, using a shared toaster, and eating oats can all cause your symptoms. Many of us with celiac cannot tolerate oats regardless of whether or not they are certified as being gluten free. Also, many of us cannot tolerate soy and/or dairy. Sometimes as our autoimmune systems are producing a lot of antibodies, they can mis-identify other foods as containing gluten when they don't.

In the beginning, it's very important to make your household as gluten free as possible and to eat only natural, whole foods. Is there a reason why your household cannot go entirely gluten free? It's easy to do....and it can be a very healthful diet for everyone. Cannot the other members of your household simply consume gluten outside the household? If you eat whole foods, we're only talking about things like bread, pasta, crackers, and desserts that might contain gluten. These can all easily be replaced with gluten-free alternatives. Eating a gluten-free diet isn't like eating "bad" food--really, everyone can enjoy eating a gluten-free diet.

It sounds as though you'r trying to go "gluten light," and, quite frankly, this will not alleviate your symptoms. Please read as much as you can about celiac--I believe you'll begin to understand very soon why your present arrangement can only spell disaster for your recovery.

2

Share this post


Link to post
Share on other sites

You have to be really strict. If you can't get your own toaster then you could try those toaster bags. I don't know that they work because I haven't tried them. Or make your toast on a cookie sheet in the oven.

We got my daughter her own little fridge for condiments and such. We had to because there just wasn't enough room in the big fridge which really isn't all that big.

Hard to say on the oats and dairy. Some people can. Some people can't. But bottom line you need to be really strict.

0

Share this post


Link to post
Share on other sites

I agree with what others have already said. You could pick up an inexpensive toaster for yourself, which would probably be cheaper than buying toaster bags.

Some of us did have to give up dairy for awhile. I'd definitely suggest you do that and hopefully after you have healed, you may be able to successfully incorporate dairy products into your diet. Others have problems with casein, which is in all dairy products, but for now you might want to just give up dairy products to see if you get to feel better.

Personally I didn't consume any oats right away but you could try reintroducing them later (gluten-free oats, that is). A small percentage of us cannot tolerate oats at all.

If you stick to a whole foods diet right away, you'll have a whole lot less labels to read, too. In the meantime you might want to check out the Newbie 101 topic here.

1

Share this post


Link to post
Share on other sites
Ads by Google:


You cannot use their toaster at all. Period. That right there is probably your issue.

0

Share this post


Link to post
Share on other sites

You cannot use their toaster at all. Period. That right there is probably your issue.

Thanks for all your insights. I guess their is a learning curve when it comes to this. I guess the idea of living so rigidly kinda sucks, and I don't want to do it. I will, because I want to get better- but it sucks. Okay, done feeling sorry for myself.

I am so grateful for this forum. I'm going to read as much as I can and meanwhile, consume meat, veggies, and fruit- only.

0

Share this post


Link to post
Share on other sites

Also, there's a good chance that you won't always be the only gluten free member of the family. Much easier to make the family gluten free after that!

Your doctor should have told you (but most don't) that if YOU are diagnosed, everyone in your family should now get tested, with or without symptoms (because the disease can be doing damage for a while before symptoms develop). And if they test negative, they are supposed to get tested periodically for the rest of their lives, like every 5 years or so, or if they ever develop symptoms.

Your siblings, children, and parents are in a category where 1 in 22 people have this disease. Your aunts/uncles, cousins, and granparents, it's 1 in 56.

1

Share this post


Link to post
Share on other sites

A note to that you may go through some withdrawl symptoms while healing. Any reaction your body makes is a good one. It is a sign of healing to come. How long exactly that it takes to heal depends on many factors.

How long you have been suffering damage.

How completly you avoid gluten.

If you can absorb the nutrients you need.

I believe supplements are important to add nutrition.

If you can stay on your diet regardless of social pressure.

If you can discover other intolerances and avoid them, for as long as it takes.

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
      106,798
    • Total Posts
      932,530
  • Member Statistics

    • Total Members
      64,287
    • Most Online
      3,093

    Newest Member
    Butt
    Joined
  • Popular Now

  • Topics

  • Posts

    • Thanks. Still figuring it all out. 
    • I've had plenty of uti's in the past, pre knowing I couldn't eat gluten, so I know how they present in my body. Peeing every 5 minutes a tiny bit with extreme pain. Not fun. They were so bad for awhile I had to take a prophylactic antibiotic every time I had sex, with lots of water. It was like, sorry honey, can't cuddle. Gotta run to take my meds! But thanks for the idea!
    • 1. I think the pain is more diffused than on one side or the other.  2. Sacroiliac joint sounds familiar to me, from when I was doing pt? I think this was something where one side was lower than the other. She would correct it, but it wouldn't stay put for long.  3. I haven't had any scans in ages!  4. Every pair of pants I have are elastic or tie right now! I'm at my mid weight. I guess I've got fat, mid and skinny clothes, lol. I'm losing a bit of weight here and there because one of my meds causes me to have a lower appetite. 5. Are you getting any help from the chiropractor? 6. Thanks so much for this food for thought. I do so hope you find an answer to your issues asap. I hate stuff like this that is seemingly so ambiguous. Much easier to just have kidney stones and get them over with, lol.
    • Many celiacs can eat 10- 20 mg of gluten per day (10-20 ppm in one kilogram of food) without adverse effects.  That is roughly equivalent to 1/16-1/8 teaspoon flour.  More than a trace, but still a small amount.  Some of us cannot handle that amount.
    • Everything with the gluten-free certification must be below 20ppm in a lab test. THAT is much much less then a crumb. Toasters are cheap just get a new ones. If you eat whole foods only your chances are much much less of getting CCed. We normally suggest no gluten-free processed foods (dough, mixes, chips, crackers. breads etc) for the first few months only eating whole foods to boost your healing also remove dairy and oats as they can be hard to process with the initial damage (Diary requires the enzyme lactase which is produced by the tips of the villi in the intestines which are the most damaged).   To make it much easier clean our your microwave really goods, put down some paper towels in the bottom when you use it and get some nordicware microwave cook ware, a new mixing bowl. measure cup, spatula, and some basic eating and cooking utensils and you can start fixing stuff that way starting off without worry. I love steamed veggies, omelettes, etc done this way so tender and easy to digest.  I might also suggest using freezer/butcher paper for a clean prep surface starting off also makes clean up a breeze since you just trash it when done.  You can get the rest of you appliances, pots, pans and everything else changed over later. And this makes it simple to get started....PS crockpot liners are a life saver and making huge pots of stew, or roast in them from raw ingredients is super simple and you can eat on it for days.
  • Upcoming Events