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

Anyone Had Positive Diagnosis After Neg Bloodwork? Doc Wants To Scope Next Friday.


luvmytwoboys

Recommended Posts

luvmytwoboys Newbie

Hi everyone. I am VERY new to this, and have lots of questions. My almost three year old son went to the hospital in July with dehydration related to some diarreah that we think came on from an antibiotic. However, after the antiobiotic was through, the diarreah persisted. He has had it for two months. Luckily, I have a very good relationship with our pedi GI (he treated both my boys for severe milk protein allergies and reflux as infants) So, he called me at home last saturday night and said he wanted to see him right away monday morning. We went in Monday and he told me that he really didn't like my son's appearence. He still has dark circles under his eyes, tired, skinny with a distended abdomen (only after he eats) and jsut not glowing like kids do, know what I mean? He's almost three, 35-36 inches tall and 28 pounds. He also seems VERY irritable with everyone.

So, he orders a bunch of labwork. Here's what they called with today...they said everything so far is coming back negative. They are still waiting on the IgA results becuase if it comes back low, then we have a false negative. He wants to go ahead and scope him next friday and in the meantime we won't get the IgA results back until Tuesday because of Labor Day being Monday.

What do you guys think? Has anyone ever gotten a positive diagnosis after having negative bloodwork? I know that this will most likely be resolved next Friday when he looks inside. But I am going to crazy in the meantime wondering if everyhting I feed him is like poison to his little system.

Just looking for some advice, words of encouragement, and your experience getting a diagnosis. Thanks in advance for any wisdom or help.

Allison


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



Celiac.com Sponsor (A8-M):



gfgypsyqueen Enthusiast

Hi, Yes, my blood work was negative and my scope was "text book celiac" positive biopsy.

I think diagnosing kids has got to be the hardest. My youngest is 2.5 and she has been blood tested and scoped. The scope was inconclsuive. So after months of dairy free helping but not making her better, she is now gluten-free/CF and seems to be doing better. Actually tomorrow is her 1 mth gluten-free anniversary. She has already had accidental gluten and back comes the diarrhea and rash. I think she is a celiac, but I need to wait a few months to see growth and health changes. She has only started to put on a little growth and weight since going dairy free. I am hoping now that she is gluten-free CF she will really start to grow fast and gain some weight.

IMO, if you have a dr who is willing to scope to look for celiacs, go with it. Rule out celiacs if you can. Make sure the dr takes enough biopsies and sends them to a good lab. Remember to keep feeding plenty of glutenous foods before the biopsy. Going gluten-free before the biopsy will skew the results.

Best of luck. I know it is really hard watching your little one feel terrible and worrying about their health. If the results are positive, everyone on here has ideas for foods and snacks.

natalie Apprentice

Mine blood work was negative, but I was Marsh 4 ( completely flat ) in my biopsy.

Guest j_mommy

I would do the scope too, it is definetly possible for the scope to be positive. I had the dark circles under my eyes as well...those went away after going gluten-free.

Also I would do the testing b/c what if you put your child on a gluten-free diet and then the child wants to know for sure later? Than they have to do a gluten challenge and that is definetly not something I would want to go through.

Good Luck!

luvmytwoboys Newbie

Thanks for the replies. We are scoping on Friday. I can't wait to find out what is going on with my little boy. I am SO ready for the black circles around his eyes to go away. I can't imagine what people must think. They probably think I don't ever let him sleep. And people are ALWAYS asking me if I feed hime becuase he is so skinny. I really hope we can take care of those things on Friday.

I will be sure to post an update after the scope and let you know what we found out. Thanks again.

Allison

buffettbride Enthusiast

My DD also had the dark circles before dx and they have disappeared as well since going gluten-free. Her eyes have actually always been a good indicator of when she was getting sick. The normal bruise-ish look would turn red when she was getting a bonafide illness such as fever, strep, etc.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    2. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • 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.