Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Store.

Do I Get Re-Tested? Several Glutenings In Last Month...

6 posts in this topic

I believe my Celiac dx came relatively soon after onset (maybe within 2 - 3 years) and I my villi damage was only 'patchy' in the words of my Dr.  I went gluten-free last March and my GI symptoms have improved markedly.  After about 4 months gluten-free, I got both blood and endo tests and Dr. said everything was hugely improved, he could hardly see evidence of my GI damage.


Over the last month or so -- what with travel and the holidays, I believe I've gotten glutened 2x - 4x.  As my symptoms aren't severe, it's hard for me to know for sure.  I'm tempted to ask my Dr. to run the tests again, but I don't know how much gluten will damage me.  I'm going to get even stricter about cc for a while and hope that will help, but is there any value to me testing again to see if I've set things back?


How often do you get tested?


Share this post

Link to post
Share on other sites

Ads by Google:

Annually is sufficient since your numbers have already shown improvement.  At this point your body is likely a better indicator of when you accidentally ingest gluten.  Minor glutening and cross contamination is not a reason to get tested...simply a reminder of how careful we need to be.


Take care :)


Share this post

Link to post
Share on other sites

"I'm going to get even stricter about cc for a while and hope that will help,"


You meant you're going to get TOTALLY strict about CC FOREVER, right? :lol:


Just bustin' your chops a little. Hope you're feeling better soon. :)


Share this post

Link to post
Share on other sites

I've only been gluten free for 3 months but my doctor wants to retest the blood at the 6 month mark.  As long as the numbers are going down there won't be any other further testing necessary.  Ever.  Unless I start having some sort of persistent symptoms (persistent meaning NOT as a result of some accidental glutening).


Also just wanted to add... you have to go 100% gluten free.  For life.  Mistakes will happen but we all really have to do whatever we can to avoid cross-contamination and any other source of gluten.  Gluten = antibodies = damage = malabsorption = health problems.


Share this post

Link to post
Share on other sites



If you got glutened, then you know you have been damaged.  No doubt about it.  The immune system doesn't take breaks from celiac disease just because you are lax in your diet.  What's more important than additional testing is getting away from the attitude that is is ok to be lax and take chances.  As long as you have an attitude that it doesn't matter much then you are heading for trouble.  We all make mistakes sometimes though, and that is at times unavoidable.  So the thing to do is get right back on the straight and narrow and learn from those mistakes.  Over time you can learn to avoid such incidents or make sufficient preparation to avoid problems.  It is all a learning process but the right attitude makes learning easier.  And less painful.  Celiac disease requires the gluten-free diet, and the gluten-free diet is a medical diet, not an optional diet.


Having to pay more attention and take more time for your diet than other people do can be a pain sometimes.  And may make holidays a little challenging.  But the payoff is better health.  Doctors can't fix your diet, that's up to you alone.  You are in the driver's seat as they say.  You can do it! :)


Share this post

Link to post
Share on other sites

Thanks everyone, but I'm afraid my quick writing gave the wrong impression.  I'm VERY careful about cc and strict on my gluten-free diet.  However, as you've noted - accidents DO happen. 


I have to travel and eat business meals for my livelihood, and I choose to go out with my family to eat so that my children don't feel, should they eventually get Celiac, that it's a life sentence to solitary.  If I don't feel a restaurant is trustworthy, I have a KIND bar I keep in my purse and eat my own food when I get home.


I refuse to be a victim and allow this disease to keep me in my house.  Perhaps if I'd had more damage at the outset, and more years of pain, I might feel differently, so I don't fault anyone for their choices.  But, per my doctor, my efforts til now have been very successful.  I do not ever, in my lifetime, expect to have the foods I miss, and I've come to terms with that.  It's no big deal and I don't pine for them.  I'm also lucky that I live somewhere with a high awareness of the precautions that need to be taken, and great grocery options.


I will continue to be careful, and yes, step up my already significant efforts to avoid cc.  But take my word for it, I'm not one of those who's dealing with this halfway.  Accidents happen, and I only wanted to know if there's a benefit to testing soon after a feared glutening.




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

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Topics

  • Posts

    • Oat Flour making me sick?
      I wouldn't be afraid to use a stainless steel pot that other things had been cooked in AS LONG AS YOU WASH THEM VERY WELL before making her food.
    • to biopsy or not?
      You are MOST welcome! No problem with making these recipes. If you just follow the directions they lay out, you will be absolutely fine! BTW, I chose to make everything using the flour blend they give you the recipe for. It really is better than the pre-made flours you can buy. To make things easier, I make a double batch of the flour blend and put it in a BIG tupperware (plastic) container & keep in the fridge. That way when I go to make anything I just scoop out the amount I need. Secondly, get yourself a cheap little kitchen scale. I got this one & it works great. Mine doesn't have the removable glass or the kitchen timer but otherwise is just like this one. This one is more like the one I got Weighing out your ingredients makes a huge difference & really it's so much easier than measuring everything in measuring cups. As far as the coffee cake recipe..... I changed it a little bit so it would be like a gluten coffee cake I used to make & we loved. It turns out a little more healthy as well with dried fruit I put in it. I didn't make the topping that they do. These are the changes I made. In the batter, instead of the 1 Tblsp. of cinnamon I used 1 teaspoon. In the batter, I added dried apricots & raisins --- I do it by feel so I will say about 1/2 cup of each maybe a tad more.  My Topping: Then in a separate bowl I put about 1.5 teaspoons of cinnamon, about 3/4 cup of dark brown sugar, and some melted butter. Mix the dry ingredients & pour the butter in mixing the mixture with your fingers. You want the mixture crumbly yet moist. Put the batter in the oven for 5 min. & then take out & crumble the topping on top, then it all goes back in the oven & bake according to directions in the recipe. You could add nuts, dried dates, any dried fruits or nuts you like!   Finally, you owe it to yourself to get some really good pans. This for loaves of bread as gluten free bread requires the extra height & support these pans give. You won't have to use parchment paper or make the tin foil collar which is a pita. These are great for making the dinner roll recipe into burger buns:
    • celiac disease is psychosomatic
      Actually, there is a place I could complain to about how my request to amend my record was handled. zthey really messed up onthis one. I think this doctor was too careless to set a HIPPA policy in place or doesn't pay attention to generic forms included to fill out with new patient forms. I'm debating whether or not to file a complaint. If the doctor adds derogatory remarks to my report, I will definitely file a complaint. I really should file a complaint for all the patients who are mistreated, but I don't need more stress in my life. I have found doctors like her create stress or sometimes it's best to say goodbye without further contact. Can I Appeal if a Covered Entity Refuses to Make an Amendment? Maybe. An institution must accept complaints about its health privacy policies and practices. Filing a complaint with an institution may not be the equivalent of filing an appeal of a denial of a request for amendment, but it may help if it forces someone new at the covered entity to review your request. However, some institutions may accept formal appeals. Consult the institution’s notice of privacy practices to see if there is an appeal method for a denial of a request for amendment. Talk to the privacy officer at the covered entity to see if you can obtain help. You can also complain to the Secretary of the federal Department of Health and Human Services about how your request was handled. The Department’s Office of Civil Rights processes complaints. You can find information about the process at You have another alternative. When a covered entity denies your request for amendment, it must tell you that you can request the covered entity to provide a copy of your request for amendment with any subsequent disclosure of the disputed information. In some instances, it may be important to make the request. Remember that the covered entity is not required to tell others about the dispute unless you ask.    
    • Johnny Carinos
      According to Johnny Carino's' gluten free menu, the potato soup is safe to eat. However, their allergen guide says the soup has wheat. Anybody know which is right? I contacted my local restaurant and sent an email to the email address listed on their website. However, my local place did not know, and no one has responded to my emails yet. I would love to try this restaurant, but now I am worried if it is safe.  allergen guide   gluten free menu    
    • Gluten-Free Diets Are Not Necessarily Healthier, Doctors Warn
      Out of about 15,800 children in the schools, 78 were on a gluten-free diet. Of these, 60 percent had celiac disease, an immune condition that makes ... View the full article
  • 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. Thank You,
      · 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
    • Most Online

    Newest Member