Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

The Almost "Definitive" Celiac Sticky

Wolicki

Recommended Posts

Wolicki Enthusiast
Wolicki
Posted

Hi All,

I decided to write this to gel together what I have learned in the last 8 months, since being diagnosed with Celiac. My hope in doing this is to provide some help to newbies in getting through the process. There is SO much to learn. My thinking is that if I can help one person feel better quicker, then it was worth it. The following is my top ten words of wisdom :P

1. Doctors do not understand Celiac, for the most part. Save yourself trips from doctor to doctor to doctor. Blood tests can be inconclusive. Biopsies can be inconclusive. False negatives are common. Celiac may be found on blood tests or biopsies, but it might not. Gluten intolerance and latent Celiac will not show up on a blood test.

2. The definitive test, IMHO, is positive dietary response. If you suspect you have an intolerance to gluten or Celiac disease, do a gluten free trial. You will see positive results if this is indeed your challenge.

3. Once you go gluten free, you probably will develop secondary food intolerances that make you feel really bad, and make you wonder if maybe gluten is not the problem. Many of us experience secondary intolerance AFTER going gluten free. Common culprits are: dairy, soy, nightshades, corn, grains, nuts. The only way to really figure it out, without thousands of dollars in tests, is keeping a food journal. Write down every single thing you eat, and make notes of any reactions. Reactions can happen several days later, so it is tricky to figure out. Dairy seems to be an issue for everyone starting out, because it is processed by the villi in the intestine that are damaged from Celiac. When you start to re-introduce foods, do it one at a time so that it becomes obvious which ones are still giving you problems, and add new foods no earlier than every 3 days.

4. Reason number 3 is my reason for suggesting a very simple diet for a period of time when first going gluten free. The intestines need time to heal, and many foods make that more difficult. Resist the urge to buy gluten free replacement foods, like gluten free bread, cookies, cakes, etc. Stick with single ingredient, whole, unprocessed foods.

5. Vitamin and mineral deficiencies are common. Try to get tests for these deficiencies with your doctor. Be forewarned that most doctors try to convince you that it is not necessary. Supplements that are useful for most Celiacs are a good multivitamin, fish oil, calcium plus Vitamin D, and probiotics and enzymes. Probiotics will help replenish the

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

Celiac.com Sponsor (A8-M):


DonaldandAlanda Evans Apprentice
DonaldandAlanda Evans
Posted

Thanks! I liked that alot.

newgfcali Rookie
newgfcali
Posted

Thanks for posting this, Janie. Excellent words of advice.

I'd just like to add that ALL of these apply to those of us who are non-Celiac gluten intolerant as well. I think a lot of newbies are looking for that magic diagnosis, the LABEL they can hang their hat on, and it's discouraging if all of your tests for Celiac come back negative. That doesn't mean you're not gluten intolerant, though, so try the diet anyway. If you feel better not eating gluten, that's your answer. There are also many many Celiacs whose tests came back negative year after year, then finally were positive. Why wait to go gluten free?

And an addition to Janie's number 1... doctors don't understand non-Celiac gluten intolerance, either.

So listen to your body.

reeetz Rookie
reeetz
Posted

Thank you for posting this! This really does help encourage me especially since I don't have that diagnosis of anything specific yet, but all I know is that I have felt so much better on a gluten free diet! I can actually function throughout my day now!

Wolicki Enthusiast
Wolicki
Posted
  • Author

Oh, good, I am glad you find it helpful. That was my biggest frustration, is that I was sick for over 10 years and doctors just did not have a clue. Once I realized that doctors were not going to be able to help me, and that I needed to take control of my own health, I felt so much better, emotionally and physically.

If even one more doctor told me that it was "in my head," I am certain that I would now be incarcerated for doing something violent, LOL!

And you all are right- non Celiac gluten intolerance, and even Celiac can, for various reasons, not show up in testing. The main point was: If you think you might have it, you have nothing to lose by trying the diet. Yes, it is hard at first, but isn't it worth having a normal life and feeling better? I missed out on quite a few years enjoying life with my two young boys because I was ill. So the bottom line is- it can't hurt to give it a try. Just know that other issues crop up, as mentioned in my "sticky."

Disclaimer: I am not a doctor, nor do I play one on TV :) I am just sharing MY experience.

Janie

newgfcali Rookie
newgfcali
Posted

Disclaimer: I am not a doctor, nor do I play one on TV :)

Janie

LOL!

Yes, but can you teach me the Thriller dance once you learn it? Always wanted to learn that one. :)

Wolicki Enthusiast
Wolicki
Posted
  • Author

LOL!

Yes, but can you teach me the Thriller dance once you learn it? Always wanted to learn that one. :)

Well, I've got the "Zombie Shuffle" down pat :P I haven't worked on the rest of it yet, but will have it licked by Summer. I am thinking I will post it on You Tube :P Nothing like a middle aged white woman doing Thriller for a good laugh, right? :P:P

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

Celiac.com Sponsor (A8-M):


newgfcali Rookie
newgfcali
Posted

Well, I've got the "Zombie Shuffle" down pat :P I haven't worked on the rest of it yet, but will have it licked by Summer. I am thinking I will post it on You Tube :P Nothing like a middle aged white woman doing Thriller for a good laugh, right? :P:P

I think all of you OC girls should get together and perform this on You Tube. Makes me smile just thinking about it! :D :D :D

sandsurfgirl Collaborator
sandsurfgirl
Posted

I think all of you OC girls should get together and perform this on You Tube. Makes me smile just thinking about it! :D :D :D

Now that would be fun!!!

Wolicki Enthusiast
Wolicki
Posted
  • Author

Now that would be fun!!!

OK, so we've got Nightingale, Maggie Mermaid, Sandsurfgirl and Mskedi.......add Wolicki and we have enough for a Thriller line! :P

KateGrace Newbie
KateGrace
Posted

This is SO helpful. I'm completely new and wandering around lost here, so thank you.

Wolicki Enthusiast
Wolicki
Posted
  • Author

This is SO helpful. I'm completely new and wandering around lost here, so thank you.

You are so welcome!

Janie

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,169
    • Most Online (within 30 mins)
      7,748
    A Lye
    Newest Member
    A Lye
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Testing

      By Scott Adams · Posted

      Yes, if you had symptoms when eating gluten ruling out celiac disease won't necessarily mean you'll be able to eat gluten again, although it might mean that you may be able to be less strict with your gluten-free diet. 
    • trents
      Testing

      By trents · Posted

      Have you considered the possibility that you might have NCGS (Non Celiac Gluten Sensitivity) rather than celiac disease? They share many of the same symptoms, the difference being that NCGS does not damage the lining of the small bowel. It is 10x more common than celiac disease. There is no test yet available for NCGS. Celiac disease must first be ruled out. In view of your genetic profile, I would give it consideration.
    • Kj44
      Testing

      By Kj44 · Posted

      Yes
    • mariamccl
      Help with results

      By mariamccl · Posted

      Hi, 25f who recently had a endoscopy procedure to diagnose celiac disease. Mum and uncle are both diagnosed celiacs. I've had symptoms over the past year - headaches that have become debilitating and frequent, feeling faint and nauseous with high heart rate, diarrhea and constipation, anemia, and recently my periods have become almost non existent. My doctor sent me a letter yesterday saying this " biopsies from the duodenum show some very mild features that could be in keeping with celiac disease but also could be due to other causes". I am waiting on an appointment to see him in the clinic to discuss this but in the meantime I wanted to check if anyone else has experienced this? I was eating plenty of gluten before my camera test and for the past 2 weeks have completely cut it out of my diet and I'm seeing changes in my bowel movements for the first time in my life! Headaches, dizziness etc are still there but maybe it takes longer for them to go away? Any help would be so appreciated -  I feel so lost in this whole process!! 
    • trents
      Testing

      By trents · Posted

      Did your symptoms improve after going on a gluten-free diet?
×
×
  • Create New...