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

  • 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:

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




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

oh trust me, we understand fully. :ph34r:

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
      103,593
    • Total Posts
      918,292
  • Topics

  • Posts

    • Allergy or Preference? Waiter asks
      At my local Five Guys, I told the counter guy that I had to avoid gluten for medical reasons. I was ordering a burger with no bun and some fries. He yelled back "Allergy Alert!" and every line cook immediately changed gloves and cleaned their work space. Will I go back? You bet I will!
    • celiac disease is psychosomatic
      The office is located in another city than location I went to. There is no receptionist at the location closest to me meaning patients wait for the doctor to open her closed door to call their name for a consult. So, I would have to knock on her door which would really make her say that I'm sick since I keep writing letters AND showing up in person. The main office is too far for me to travel with construction going on for the remainder of the year. I suppose I could mail the letter instead. But the staff is very irresponsible so it might be thrown away. The doctor probably told them that nothing needed correction in my records so ignore further requests from me. The other staff member I dealt with seemed normal, but I complained to the doctor about the staff member I dealt with today when she failed to update my phone number that I gave to her a few times (and which she said she updated), which resulted in me showing up for an appointment (I traveled a distance) one of the testers thought she canceled by leaving voicemail for phone number I no longer had. What I mean is I told the doctor that the staff member said she updated my phone number when the doctor asked me why I was there when I showed up for that cancelled appointment. Unfortunately, this staff member answers the phone most of the time. I'm sure she did what she could to make me look bad to the doctor to make her look good because I complained about her. I feel like scheduling an appointment with a psychologist and tell her what ahppened with this name calling. I'm sure it's against the therapist code or I'd like a psychologist's feedback on this doctor's behavior. There are other patient complaints about her on the Internet how she laughs at patient's pain and suffering. I feel that's how she treated me as well. Update: The staff member called me back to tell me the doctor amended my report and she put it in the mail. I wonder if the doctor discussed what she said to me with another doctor who told her what she did was unacceptable in the medical field. I ma hoping my report is amended or not new negative comments are added by the doctor to say I keep writing her letters or something in that regard.
    • celiac disease is psychosomatic
      The letter I am suggesting has nothing to do with the doctor.  I would type it and walk it to the desk when are in the building for your other appointment. 
    • celiac disease is psychosomatic
      Thanks. I'm not sure if the doctor will read another email I send and that's the way I'm told by staff to contact her. It will just confirm that I keep writing her letters although I only sent her one email about it! I already told the staff and her that I didn't want my medical records sent to any doctor's office, but I don't know if they will do it out of spite. It was scary talking to this doctor because she wouldn't listen or let me get a word in...I guess that's the reason why I feel the need to raise my voice at this office. When I requested a Lyme disease prescription from another doctor years ago before I knew I had celiac disease, this ignorant doctor told me not to come back to his office because there's no such thing as Lyme disease so only crazy people think they have it. I thought that was the worst experience I had with a doctor, but this experience was worse. I mean this neuropsychiatrist kept calling me a sick person over and over. It's so scary dealing with doctors like this. I really don't know how many other doctors may have wrote in my records that my symptoms are all in my head because celiac disease isn't real.   And my neurologist said this neuropsychiatrist was great. Maybe he says that about all the doctors he refers to patients to? I don't know if you call her personality psychopath since she appeared really nice during my consult, but she was thinking all this negative s*** in her mind at the time or different than she appeared to be.
    • Nature's Bounty Protein & Vitamin Shake Mix
      Sort of funny.  Says no wheat at the bottom but also says this " Other Ingredients: Proprietary Protein Blend (Soy Protein Isolate, Whey Protein Concentrate), Cocoa (processed with alkali), Inulin, Oat Fiber, Fructose, Natural Flavors, Maltodextrin, Soy Lecithin, Tricalcium Phosphate, Xanthan Gum. Contains milk and soy ingredients. Contains wheat ingredients.   I bet they do not use gluten free oats, so its a bit of a gamble.  Not one a Celiac should take as there is no such thing as "not severe Celiac".  Even if you don't feel the damage, consuming gluten will start damaging you.  Maybe its just catching up with you.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,690
    • Most Online
      1,763

    Newest Member
    jilord
    Joined