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

Positive Biopsy, Negative Blood Tests

ToHelpMySon

Recommended Posts

ToHelpMySon Newbie
ToHelpMySon
Posted

This is my first time here and I am desperately seeking some help and advice. My son is 16 months old and he has had severe acid reflux since birth and has been seen by Denver Children's Hospital since that time. At the age of 12 months he had a 2nd UGI, which showed continued reflux and because his Pediatrician felt he should have outgrown it they decided to do an upper endocscopy, which happened at about 15 months of age. They discovered a very nodular duodenum and took a biopsy, which came back as POSITIVE for Celiac Disease, surprising not only them but me too. They said Celiac could be the reason he is still refluxing.

Well, he had blood work done 4 weeks ago and it came back NEGATIVE for Celiac Disease and the GI is saying they need to consult their "Celiac Guru" @ Children's to decide the next step. I have been talking to some helpful moms on Infant Reflux Disease Dot Com and they have told me that the biopsy is the gold standard for Celiac testing and that they believe he has Celiac 100% and should go on a gluten-free diet regardless of what the doctors say. I happen to agree and want to see if anyone here agrees.

My son has always cried a lot, been very fussy, grouchy, very tired, with dark bags under his eyes ALL THE TIME!! He has never had a growth problem but has occasional boughts of diarrhea but no constipation. I have also been sick most of the time since my late teens with so many various sypmtoms that the doctors have never been able to figure out what is wrong with me. I am fatigued all the time, ill-feeling, achy, and I have panic attacks as well. I think I might have Celiac Disease and my son may have got it from me. Unfortunately, I do not have insurance so I can't even see a doctor or be tested for it.

I am considering joining my son in a gluten-free diet so make the whole process a bit easier. After reading this whole book I wrote what are your thoughts? Any advice or suggestions for us?

Thank you!

Melissa, Mommy of Samuel

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

Welcome to the board.

False negatives on the blood tests are common, especially in young children. False positives on the pathological examination of the small intestine biopsy are are extremely rare.

I am not a doctor, but it is my interpretation that your son does indeed have celiac disease, and needs to go on a gluten-free diet now and forever.

Edit: Yes, you should also be tested, as should any other first degree relatives of your son (father and any siblings).

ToHelpMySon Newbie
ToHelpMySon
Posted
  • Author

Welcome to the board.

False negatives on the blood tests are common, especially in young children. False positives on the pathological examination of the small intestine biopsy are are extremely rare.

I am not a doctor, but it is my interpretation that your son does indeed have celiac disease, and needs to go on a gluten-free diet now and forever.

Edit: Yes, you should also be tested, as should any other first degree relatives of your son (father and any siblings).

Peter,

Thank you for responding, I appreciate it! Is there a particular reason that blood tests on young children are so inaccurate?

I am going to start my son on a gluten-free diet ASAP, as overwhelming as it seems I do think the end results will be well worth it.

I don't have insurance nor the money for myself to be tested so I think I will just join my son on the diet and see if it helps me as well. Do you think thid id a wise thing to do?

I hope his reflux stops once gluten is eliminated from his diet, then we can take him off his Prevacid and hopefully his constant hiccups and choking episodes will stop as well. Perhaps he'll also feel better and therefore have a much more energy and be happier.

Melissa

lizajane Rookie
lizajane
Posted

YES i think you should try gluten free for you both. as long as you are willing to accept the response to the diet as evidence that you and your child do or do not need to live gluten free, then you really don't have to be tested. your symptoms sound a LOT like mine. and i am 100% different now that i am gluten free. it is THE BEST THING that has ever happened to my health. i had a biopsy, but my son did not and i still feed him gluten free based solely on his response to the gluten free diet. (we both had negative blood tests. i just didn't want to do a biopsy with him at age 4)

dilettantesteph Collaborator
dilettantesteph
Posted

My son was diagnosed at age 10. He was having bad reflux. He was throwing up 10 times a day and having bad chest pain from the reflux. It went away quite fast when he stopped eating gluten. I hope that encourages you.

ToHelpMySon Newbie
ToHelpMySon
Posted
  • Author

lizajane - Thanks for the encouragement! It is hard w/o insaurance because I want to have the test done but that is just not a possibility and I don't know when it will be. I don't want to wait for my insurance, I want to feel better now. I know what you mean about the biopsy for your son, it was very hard to watch my baby go through that but I am glad we did it in the end. I have been as gluten-free as i am aware of for 7 days now and I am feeling better and my sons reflux is improving.

dilettantesteph - I am glad to hear your son is doing much better! Did he suffer from reflux as an infant and toddler too? I know my son is in pain he just can't tell me where the pain is and that breaks my heart. He is very fussy and irritable all the time, rarely happy.

dilettantesteph Collaborator
dilettantesteph
Posted

As a baby my son was very fussy. It seemed like colic. I wish that I had known about celiac then. He spit up a lot, but I didn't know what it was. He also had problems with #2 leaking out of the diaper making a huge mess. I didn't know what that was either. He was always very skinny and irritable. He had problems at school remembering things and with organization. The symptoms gradually worsened until he got to the throwing up 10 times a day when he was diagnosed. That was when a virus seemed to suddenly increase his symptoms much more. As long as he stays out of gluten he is a changed boy. School is going much better too. You are doing a really good job to get your child diagnosed so early. I wish I had.

We had lousy insurance at the time of diagnosis. That certainly can complicate things. I got diagnosed at the same time and it was such a wonderful thing. I had no idea how sick I had been until I got better.

We had a lot of ups and downs while we figured out the diet. Hang in there, you will get through it.

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

Celiac.com Sponsor (A8-M):


glutenfreemommy Newbie
glutenfreemommy
Posted

My daughter was ill for for a couple of months and finally had to be put on a feeding tube because of severe weight loss, diarrhea, vomiting and lethargy. She struggled on the feeding tube and after doing endless tests (because EVERYTHING came back negative including two tTg screens)we finally pushed hard for the scope which was done and showed Celiacs...something the DR.'s had ruled out because of negative tTg results. Her recovery has be astounding since going gluten free! You will notice a miraculous change in your son I am sure if you adhere to a strict gluten free diet. Also get yourself and your family checked...since then my husband and son have been diagnosed as well. Good luck...this will turn out to be a blessing!

Archived

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

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


  • Member Statistics

    • Total Members
      131,702
    • Most Online (within 30 mins)
      7,748
    Coach Chris
    Newest Member
    Coach Chris
    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

    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      Hi Christiana, Many thanks for your response.  Interestingly, I too cannot eat wheat in France without feeling effects (much less than in the US, but won't indulge nonetheless).  I also understand children are screened for celiac in Italy prior to starting their education. Wise idea as it seems my grandson has the beginning symptoms (several celiacs in his dad's family), but parents continue to think he's just being difficult.  Argh.  There's a test I took that diagnosed gluten sensitivity in 2014 via Entero Labs, and am planning on having done again.  Truth be told, I'm hoping it's the bromine/additives/preservatives as I miss breads and pastas terribly when home here in the states!  Be well and here's to our guts healing ❤️
    • Wends
      Inconclusive results

      By Wends · Posted

      Lol that’s so true! Hope you get clarity, it’s tough when there’s doubt. There’s so much known about celiac disease with all the scientific research that’s been done so far yet practically and clinically there’s also so much unknown, still. Out of curiosity what’s her dairy consumption like? Even compared to early years to now? Has that changed? Calcium is dependent in the mechanism of antigen presenting cells in the gut. High calcium foods with gluten grains can initiate inflammation greater.  This is why breakfast cereals and milk combo long term can be a ticking time bomb for genetically susceptible celiacs (not a scientific statement by any means but my current personal opinion based on reasoning at present). Milk and wheat are the top culprits for food sensitivity. Especially in childhood. There are also patient cases of antibodies normalising in celiac children who had milk protein intolerance/ delayed type allergy. Some asymptomatic. There were a couple of cases of suspected celiacs that turned out to have milk protein intolerance that normalised antibodies on a gluten containing diet. Then there were others that only normalised antibodies once gluten and milk was eliminated. Milk kept the antibodies positive. Celiac disease is complicated to say the least.
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      And thank you for your encouragement. I am glad that her body is doing a good job fighting it. I also just want clarity for her moving forwards. She was only 6 for the last round of testing and she's 10 now, so I'm also hoping that makes a difference. It was weird during her last round of testing though, because right before her biopsy, we'd upped her gluten intake by giving her biscuits made from straight up vital wheat gluten, and her labs actually normalized slightly (lower ttg and her ema went negative). Bodies just do weird things sometimes! lol
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      The first negative biopsy in 2021 just said "no pathological change" for all the samples, and the second one in 2022 said "Duodenal mucosa with mild reactive change (focal foveolar metaplasia) and preserved villous architecture." So I think Marsh score 0 in both cases, though it's not actually written in the pathology reports. I'm really hoping to get a clear positive result this time, just for her sake.  
    • Wends
      Blood results

      By Wends · Posted

      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also had the label of IBS and likely food allergy. Genetic test showed low risk for celiac but not no risk. It sounds like the Gastroenterologist is on it and hopefully will diagnose what it is correctly. Food hypersensitivity (allergy) can also cause similar symptoms and inflammation as well as mimicking IBS. Milk / dairy and wheat (cereal grains) being the biggest culprits. The “oesophagitis” and “gastritis” you mentioned can be caused by another gastrointestinal disorder called “eosinophilic gastrointestinal disorders”. These are named depending on which part of the gastrointestinal tract is affected. For example eosinophilic oesophagitis, eosinophilic gastritis, eosinophilic gastroenteritis, and more rare eosinophilic colitis. They are antigen (allergen) driven. When the blood test measuring anti-ttg antibodies is positive in absence of a positive ema test - which is more specific to celiac, this can also suggest food hypersensitivity (allergy). Usually delayed type allergy similar to celiac but not autoimmune if that makes sense. In this case the ttg antibodies are transient. Which happens. I’ve first hand experience. For info, evidence of villous atrophy too can be caused by food hypersensitivity. Not just by celiac disease. In Egid disorders the six food elimination diet, under a dietitian and gastroenterologist care, is the dietary protocol to figure out the culprit or culprits. Sometimes only two food elimination diet is used at first. The number one culprit is milk protein / dairy. Followed by wheat, eggs, soy, fish and seafood, and nuts. Most are only reactive to one food group or two. Most are only reactive to milk. Hope this is a helpful reply.
×
×
  • 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.