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

Taylor's Blood Work Came Back....

TaylorsMom

Recommended Posts

TaylorsMom Rookie
TaylorsMom
Posted

she does not have Celiac Disease. I am relieved but also very confused right now. I just can't understand, if it's not Celiacs, then what? I just can't accept that her symptoms are of a normal, healthy toddler. The nurse suggested that her distended abdomen may be caused by swallowing excess air, huh, that doesn't make sense to me. And I still don't have an explanation for all her other symptoms. So, we are at square one again. :(

Thank you for all of the support!

Megan

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

Celiac.com Sponsor (A8-M):


Ruth Enthusiast
Ruth
Posted

Dear Taylor's mom,

I'm not fully aware of your daughters situation, but please remember... blood tests do not always show if someone has celiac disease!

I underwent many tests after receiving a negative blood test for celiac. The other tests were unnecessary (hind sight is 20-20) although I am glad I had them to rule out any other more severe problems.

My gastroenterologist insisted on a biopsy --- despite my negative blood work.

Thank goodness he did.

Trust your instincts, cover all your bases related to other problems your daughter may have, and if you still don't have answers, you may have to revisit celiac.

Good Luck,

Ruth

Guest jhmom
Guest jhmom
Posted

I agree with Ruth however I had a biopsy done and it was negative too. When I recognized the same problems in my 8 yr old daughter I did not want her to endure the same tests as I did and we decided to order a stool panel test from Open Original Shared Link and both of our test came back positive. We started the gluten-free diet together and she was like a new child! She didnt complain of a tummy ache after she ate and she wasn't doubled over in pain!

I heard all the same stories from the docs as you, in addition to "she needs to eat more fruits", "the pain is just from the stool backed up in her intestines"!!!!! :blink:

A lot of times we are so wrapped up in what doctors want us to do and what test they want to run next we forget that an improvement on a gluten-free diet is a test in itself.

I wish your little one all the best!

FreyaUSA Contributor
FreyaUSA
Posted

Even if she tests negative to celiac's disease, she could still be gluten intolerant. I would suggest that even if all the tests come back negative (though the enterolabs one is most likely to actually detect the condition, imo,) try the gluten-free diet for a month or two and see if she reacts positively. It is work, but so is caring for a child that is not well much of the time.

mat4mel Apprentice
mat4mel
Posted

Be sure to get copies of the test results. Sometimes dr's will say negative when they are only mildly positive (sounds crazy, but it happens).

Mel

Archived

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

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


  • Member Statistics

    • Total Members
      127,818
    • Most Online (within 30 mins)
      7,748
    vullnetg123
    Newest Member
    vullnetg123
    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
      Royal Caribbean Only, Please

      By AuntieAutoimmune · Posted

      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
      Hidden Gluten in distilled vinegar

      By Scott Adams · Posted

      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
      Can I trust the gluten free label if a product was made in a facility that also processes gluten?

      By Scott Adams · Posted

      If you are super sensitive you may want to look for only Certified Gluten-Free Products, as @trents mentioned.
    • Scott Adams
      Gluten free/ non dairy , low calorie pudding

      By Scott Adams · Posted

      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
      Royal Caribbean Only, Please

      By DebJ14 · Posted

      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...