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

Waiting for test results


leighannh2

Recommended Posts

leighannh2 Rookie

I've lurked on this board for a long time, figured I should say hello.  I was tested for celiac and other things 7 or so years ago (just the blood test) and it was negative back then.  This board is where I found out about Bile Acid Malapsorption so I got the meds for that and went on from there.  Then, in 2016, I just started feeling terrible, joint pain, foot pain, overweight, GERD, ibs-d with cramps and urgency, and I set out to figure out if the food (Standard American Diet) was causing problems.  By spring of 2017 I had pretty much started eating Paleo most of the time, losing weight, feeling good, losing weight, all the above symptoms getting better for the most part.  But I noticed on vacations and times when I went back to my old diet I would start having issues again.  This past weekend, I visited family and ate everything they were eating (chick fil a, cracker barrel, etc) and the heartburn started right away, then two days later, watery D and cramping, malapsorbtion, and it lasted for 4 days.  So I went back to my doctor and she's running the same tests again.  I hope I've eaten enough gluten for the test to be accurate.

I've dealt with this so long, I know what to expect however the test turns out, I'll just be glad to have an answer.  If it's negative, it's going to take more work from me to see what exactly is causing my issues.  I'm thankful for this board for all I've learned and I'm sure regardless of the results, I'll be back here often because I've learned so much here.  

My son's best friend has celiac, and I was able to cook for her when she visited us a few times, with only one small mishap at a restaurant.  So, thank you all.  I'll post back my results


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

I am sorry that you are still ill.  

Unfortunately, after being gluten free, celiac experts recommend 8 to 12 weeks of consuming gluten daily prior to the blood tests.  Why?  It can take that long for antibodies to get into the bloodstream.  Of course, it can be much shorter for some, but experts rule on the side of caution.  They want to catch as many celiacs as they can.  Now, a challenge is much shorter for an endoscopy (2 to 4 weeks).  That is because they are going into the small intestine where antibodies are building and attacking the small intestinal wall, but even then it takes time.  We are talking Autoimmune and not an allergic reaction.  

So, a weekend of gluten will most likely yield a negative on the blood panel.  The odds are not in your favor and your doctor should know that (he has access to Dr. Google and probably subscribes to some daiky email newsletter).   Your health insurance might even balk at an endoscopy, but that can be overcome.

So please take the time to research celiac disease.  Know what you are up against.  Read not just the page, but the entire website.  The University of Chicago’s celiac website is well written.  Better than other centers and often better than the celiac non-profit organizations.  

Keep advocating for your health. 

Open Original Shared Link

Oh, if you can, insist on the complete panel as not all celiacs are positive on the TTG (like me).  Or better yet, if the TTG is negative and then consider the gluten challenge and re-test using the complete panel.  

leighannh2 Rookie

I questioned the doctor several times about my diet and how I don't eat that much gluten.  She felt like what I described was enough.  I have a GI in mind if this doesn't give me the answers I need.  I will check out the page you mentioned, thanks so much!

squirmingitch Veteran

It wasn't enough! The doctor is wrong. Seen it a million times on here. 

cyclinglady Grand Master
2 hours ago, leighannh2 said:

I questioned the doctor several times about my diet and how I don't eat that much gluten.  She felt like what I described was enough.  I have a GI in mind if this doesn't give me the answers I need.  I will check out the page you mentioned, thanks so much!

Maybe it was enough to get a positive.  It not, consider a challenge.  ?

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,819
    • Most Online (within 30 mins)
      7,748

    Susan Goodman
    Newest Member
    Susan Goodman
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • AuntieAutoimmune
      Great tips, Deb. Thanks.  What a pity that they no longer mark items as gluten-free. And it is even more of a shame that you must bring protein bars instead of the crew helping you with your needs. Are you planning on sailing Royal again? 
    • Scott Adams
      I've not heard of any issues with Primal Kitchen, but it certainly would be worth not using the brand for a while to see if this helps. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
    • Scott Adams
      If you are super sensitive you may want to look for only Certified Gluten-Free Products, as @trents mentioned.
    • Scott Adams
      I'm not sure about low calorie, as puddings are typically a dessert, but we do have this category: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-pudding-recipes/ This one might work if you cut back on the sugar:    
    • DebJ14
      We are off next week on our 9th RCCL cruise since our diagnoses.  I send an email to special_needs@rccl.com before every cruise letting them know that I am both dairy and gluten free and my husband is gluten free.   Unfortunately, with the new menus they introduced in 2023, they removed the gluten-free designation from each item on the menu.  Instead of having a dedicated person take gluten-free orders, it now falls to your regular wait staff.  Some have been great and some not so good.  We had a great cruise in May and hit it off with our head waiter.  She went the extra mile and ordered gluten free desserts that were not on the menu.  My problem arises from other food allergies.  I am allergic to dairy, beef, and several types of fish.  On those days my husband is a happy camper with a steak or salmon, veggies and a baked potato.  I end up not getting enough protein, so I bring protein bars.  I also bring snacks for the room. As long as the food is commercially prepared and unopened, you can bring it. Often the only dessert choices that are gluten free contain dairy, so I am out of luck.  But, if you are just gluten free, they have plenty of choices.  See the head chef in the Windjammer buffet and he will give you a tour of the gluten-free choices.  They usually have 2 gluten free desserts out at lunch and they are labeled gluten free. We have found that it works best to have assigned dining rather than anytime.  That way the waiters learn from the get go what our needs are, and we don't have to explain ourselves every night.  We also get a private table for 2.  I frankly got sick and tired of tablemates telling me a little bit of gluten would not hurt me.
×
×
  • Create New...