Overwhelmed After Dr Visit Today

[Luvs to Scrap]

Well we finally got home from Kirsten's 2:30 pediatrician visit at 7:00 tonight. He really took time with us and would go research something and then come back and talk to us again. I had taken all of the lab results our family practice dr had ordered on the family and also some stuff I had found about testing from this forum. He made copies of everything. Our dr had diagnosed DH and DS with celiac as the result of positive IGG test. Pediatrician said that he should have done way more testing before diagnosing so I think we are going to have DS do all of the celiac panel blood tests. He has been gluten-free for 1 1/2 months so don't know how off the results will be. I feel frustrated and overwhelmed at same time. There is no pediatric GI in Wichita so he said we will probably have to go to Kansas City do see pediatric GI there--I guess the regular GIs don't want to see kids here.

Anyway he ordered all of celiac blood panel for Kirsten and also some allergy blood test RASP or something like that. We went to the lab and waited forever once they found out her age (18months) The 2 most experience people tried to stick her with no luck and after telling us we needed to come back in the morning they changed their mind and called the morning shift lady in to help. She had to stick Kirsten twice but got blood both times. (The first vein blew after 1 1/2 huge containers of blood) So 2/12 hours into the procedure we finally had enough blood 3 large and 1 medium tube is a lot of volume for someone so small. Kirsten was very mad but at least we won't have to go in tommorrow.

Pediatrician wants to see what Kirsten's results are before he orders tests for Luke but I think we have to have his diagnosis reevaluated. (Jason and I still think he has celiac but dr thinks there might be other issues too) For the time being we are supposed to be restricting both kids' milk intake. They are both milk a holics so this is proving to be difficult. I told Luke that the dr thinks milk might be making him sick like wheat, oats, barley and rye so he was going to have to drink mostly water now.

Pediatrician is going to talk to pediatric GI to see if the scope is still the gold mark for diagnosis but thinks both kids will need one. We really don't want the kids to have to go through that? Have most of you had to do that with your kids or do they diagnose without it.

I came home feeling like some of the things I have been wondering about for awhile are finally being validated (our other dr has said to let the kids drink as much milk as they want and not to worry) but feeling a little scared about all the tests, procedures, and wondering what else we should have been doing all along. Luke's D is better than it was before he went gluten-free but he still has it a lot of the time.

Pediatrician thinks that Kirstens IGG lab might have been lower due to the fact that she doesn't get as much gluten because most of what we eat is gluten-free at the house.

We have to wait 2 weeks for the labs to come back and then I guess we'll see what happens then. Jason is hoping that they scream celiac so we don't have to do the scope. Is that foolish wishing?

Thanks for your comments and encouragement. I could use it right now. Kendra

[Rikki Tikki]

Kendra:

My thoughts and prayers are with you.

[azmom3]

I'm so sorry for what you're going through. Sounds like a rough day today too! I'm with you on the "hope it screams celiac" because you know you can put an end to most, if not all, of their problems. I would be so frustrated if it wasn't because then what do you do?!

I have a 22 month old son...sounds like we're at the same stage of the game. blood tests showed positive and we can't get into a pediatric GI doctor for over 3 months, but at least we have one close by ! I want to start gluten free but know that I shouldn't until after further testing.

I'm also torn about doing the biopsy and even posted something about this. Other people have gone through a company called Enterolab (I think) where you send in a stool sameple and get results. I'm looking into this more to see how the accuracy compares to biopsys. I dont' think it's covered by insurance and it sounds like it runs around $600, but they can also check for other allergies, which is sounds like you might be dealing with. The other thing I'm weighing with this one is...is it better to get the biopsy so we get quick results (assuming they say celiac is positive) so we can quickly put them on the proper diet or is it better to go the safer route with Enterolab, but wait weeks to get an answer and delay putting them on a gluten free diet (if it's even necessary to eat gluten with this test???)

As far as the blood draw goes, they are only allowed to take a certain amount of blood based on the person's weight. My son was 20 pounds when they took the test and they took very little. In fact they weren't sure if it was going to be enough, but it was.

Good luck to all of you. Everybody here is so supportive...we'll help you get through it all. I'll be following this post as I think it'll help me, too.

[Guest nini]

ok, first off, testing in children is extremely unreliable, secondly, the biopsy is only considered the "gold standard" by IDIOT dr's that aren't up on the most current research. (I'm sorry, but that's how I feel about it) The biopsy is quickly being replaced by positive blood work and positive dietary response. Truth be told, positive dietary response is the only truly valid diagnostic tool.

I remember when my daughter was three and the lab kept trying to stick her and couldn't find a vein and they made me hold her down and she flailed and screamed and it was a complete nightmare and the tests came back negative even after all that, but after researching more myself, (since I had been recently dx'ed with celiac myself) I managed to get her pediatrician to support me in trying the diet... lemme tell ya, that is THE ONLY WAY TO GO... why on earth these arrogant gi dr.s think they must torture our children (and us) with all these tests just to satisfy their morbid curiosity, when all it takes is to simply try the diet and see if it works? MY GOD people these Dr.s are living in the dark ages, anyone up for leeches and bloodletting???

Why do the dr.s cling to the biopsy as gold standard? Simple. They don't make any money off of a dietary challenge. And if at first it's not positive try try again? No thank you.

Look, the biopsy only shows damage in the final stages of Celiac, when the body has given up fighting and it is potentially life threatening. The earlier stages of Celiac/gluten intolerance are easily determined by simple dietary challenges. And yes even small children can have full blown potentially life threatening damage, but even in grown adults the damage is usually sporadic, IF we are lucky enough for them to find it at all.

[AndreaB]

You don't have to be eating gluten to do the enterolab tests. We didn't even go through a doctor but I sent the results to the two that we see. Never heard back from them. If you want the official gold standard test with the biopsy, then yes, you need to stay on gluten. It really depends on how you will feel if you don't have it done.

[eKatherine]

Why do the dr.s cling to the biopsy as gold standard? Simple. They don't make any money off of a dietary challenge. And if at first it's not positive try try again? No thank you.

Look, the biopsy only shows damage in the final stages of Celiac, when the body has given up fighting and it is potentially life threatening. The earlier stages of Celiac/gluten intolerance are easily determined by simple dietary challenges. And yes even small children can have full blown potentially life threatening damage, but even in grown adults the damage is usually sporadic, IF we are lucky enough for them to find it at all.

Before they had this test, they diagnosed the disease based on all the symptoms present. But "progress" for medical science has trended toward relying on technology. This was a "good test" in that it gave clear results that are either positive or negative. This misled them into thinking that it gave more useful information than it did, as though intestinal villi atrophy were a clear marker for celiac, not just an indicator of the progress of one symptom. It also led to total reliance on the test and ignoring of all the other symptoms, which may be much more serious in some patients who nevertheless have negative biopsies. And treating all these symptoms as unrelated doesn't help, because it doesn't remove the cause, but doses the patients with prescription drugs and bombards them with fruitless tests.

Research has moved on, but doctors cling to this against all new research to the contrary, as though merely trying a gluten-free diet is harmful and to be avoided at all costs.

[imsohungry]

What a stressing day for you all! I hope they find answers; I'll keep your family in my thoughts and prayers.

Julie

[Ursa Major]

Kendra, I am sorry that your doctors are insisting on all this testing, and torturing little Kirsten (and you, by watching) with taking all this blood.

If they both had a positive IgG, and had a positive dietary response to the gluten-free diet, I have no doubt that they both have celiac disease. Your first doctor was ignorant enough not to know that initially nearly everybody with celiac disease needs to be dairy free as well, as the tips of the villi produce the lactase that enable us to digest milk products. After about a year gluten-free and dairy free, some people can tolerate dairy again.

After being gluten-free for 1 1/2 months, Kirsten may have healed enough for the bloodwork to be meaningless. It may well come back a false negative. And a biopsy will defininetely come back negative, unless you put the poor kid back on a high gluten diet for at least six months to a year. Are you prepared to do that?

Have you considered having your kids tested by Enterolab? If you really feel you need an 'official' diagnosis, and can afford it, that's the way to go. It's easy and painless and far more accurate than any tests your doctor or ped GI may be doing. And you don't have to consume gluten to do it (but it will yield false negatives if too long gluten-free as well, so it would have to be soon).

[Luvs to Scrap]

Thanks for all of your support and prayers. Kirsten was really fussy today--basically screamed an hour after she got up this morning and then did the same thing after nap. Part of it might be I am not letting her have as much milk. She maybe only had 1-1 1/2 cups today as opposed to 4 or more. Luke did really well with his milk restriction. I filled his cup this morning and told him that was all he was getting all day and so he should take 1-3 sips when he really needed it and then put it back in the fridge. He kept asking and I told him the dr didn't want him drinking much milk for now--too much might be making him sick. He eats a yogurt for breakfast and I still have dairy in the food we eat but dr seemed most concerned with his huge milk drinking consumption. I will remove all dairy if that becomes necessary but am just cutting back for now. Dr didn't want to do more testing on Luke until we got Kirsten's tests back.

DH who wanted me to try dr is now saying that if it comes down to having scope he is willing to do Enterolab. (What I was wanting to do last week) We are still hoping her blood tests show something. She had gluten for lunch today and a little for snack and supper. But the rest of the time she had gluten-free with the guys. Kendra

[maggee]

there are some good non-dairy milks available. It may take some getting used to but soy, almond, etc. in flavors (to help getting used to new tastes).

I hope you get some answers soon.