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

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
      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
      New (possible) celiac diagnosis

      By trents · Posted

      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
      New (possible) celiac diagnosis

      By Judy M · Posted

      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
      Patiently Waiting to See Results

      By Scott Adams · Posted

      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
      Gluten free beer ?

      By Scott Adams · Posted

      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
      Patiently Waiting to See Results

      By trents · Posted

      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.