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Positive Biopsy, Negative Blood Tests
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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

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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).

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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

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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)

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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.

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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.

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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.

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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!

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    • I've been eating gluten for 4 weeks now, as recommended by my doctor, to test for Celiac. Today I got 'some' of my blood test results back, although not all... I have my biopsy test scheduled for tomorrow morning, but I don't know if I should go through with it or not if the other results are not back by morning (which would show a clear positive or negative)... The results I got so far have a few alarming numbers...

      My platelets are marked as High, being 484 x10^9/L but what I found more confusing was that my ESR is a Low 5mm (with average rate being 10 - 14)... 

      My Ferritin (Serum) is 36 ng/mL which I think is low(?)

      I'm no doctor, and I know that the best thing to do is ask a doctor, but I'm quite sure that if I go for my biopsy appointment tomorrow my specialist would insist on me taking it, even if the other results are not back by then. I'm sure it's not a pleasant experience and would like to avoid going through with it unless it is necessary. 

      Also, I took my blood test after eating gluten for only 3 weeks (since that was a week ago), and if my blood tests result as negative, I'm thinking about trying to keep eating gluten for another 4 weeks and test again then... if that comes positive, I'll then want to have the biopsy test done.

      What do you make of the above numbers? Any connections with celiac? Or with something else? 
    • The first two tests (at least in the US and most of the EU) have been replaced by the DGP tests (at the bottom) of GFinDC's list of celiac tests.  Not all celiacs test positive to the common Screening TTG.   The TTg is good and catches most and it was cheaper to run the best one (it is all about the money), but researchers realized they were not catching all celiacs.  Here is a link to the University of Chicago's celiac website.  When I was diagnosed three years ago, this site recommended just the TTg (as did the American GI Association).  Now they have expanded the list of celiac tests.   http://www.cureceliacdisease.org/screening/ Luckily, my GI must have just attended a GI conference and he ordered the complete panel for me.  ($400). It paid off.  Only my DGP IGA was positive and the rest of the blood panel (including the popular TTG test) was negative.  My biopsies revealed some severe intestinal damage.  My new health provider only allows PCP/GP doctors to only order the TTG.  So, if I want the follow-up testing to see if I have improved or had a gluten exposure, I must go to my New GI.  Yep, it is all about the money!   Keep eating gluten and make sure your  GI takes four to six samples during the endoscopy.  Maintain copies of all your results.   Your symptoms?  Yes, there are over 300 celiac disease symptoms.  celiac disease does not just affect the gut, but mis-informed and those who do not keep up with the latest in medical, do not seem to know that!   Do not give up!  
    • It's great to hear from you, Nightsky.  Glad to also hear of your steady progress.  Living gluten free is definitely a learning process, and even the baby steps are times to celebrate.  Wish you all the luck in the world as you continue to heal for the glutenization.  
    • Hi Nicky, When you first go gluten-free your symptoms often do change.  Feeling better or worse is possible.  The healing process is a major change in our gut and that means a big change in the gut flora is likely,  which can cause symptoms by itself.  Additionally the immune system doesn't stop making antibodies on a dime.  the immune system keeps working  to defeat the gluten invaders until it is darn good and ready to take a break. You really shouldn't start the gluten-free diet until all testing is completed.  That includes a full celiac disease panel and an endoscopy with biopsy samples.  It's much easier to complete testing while still a gluten eater than it is to stop gluten and go  back on it for testing later.
    • Hi Kircket, Welcome to the forum! Yes, he could be wrong.  Not everyone passes the blood tests.  And they are just one part of the diagnostic process anyway, although an important one.   Did you have the complete celiac antibodies panel? Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA If you didn't have the full celiac disease antibodies test panel, I'd insist on getting it done.  There have been numerous people on the forum who tested positive on one antibody but not on others.
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