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The Almost "Definitive" Celiac Sticky

Wolicki

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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

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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

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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

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      Hi there any advice welcomed. I have had 4 years of symptoms ranging from immune related anaphylactic symptom sudden onset food allergy to peppers/paprika/chilli/capsicum family derivatives. all these allergies fizzled out and following a food challenge test in hospital I reintroduced them a few months ago. Since then my digestive system is a mess. i have since noticed that 4 years ago when testing for iga allergies my iga level was .62 and my ttg was less than .1 (due to symptoms I was probably eating very plainly at that time). should I insist on being retested for celiac? I’ve since read two indicators for celiac include: sensitive to spicy foods when in flare up tooth enamel weakness and symmetrical discolouration patches on teeth which I have had since childhood on my two front teeth     thanks
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      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
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