Positive Biopsy, Negative Blood Tests

[ToHelpMySon]

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

[psawyer]

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]

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]

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]

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]

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]

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.

[glutenfreemommy]

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!