Very Frustrated

[gf4life]

I'm sort of really angry right now. I've been waiting for my kid's blood test results for 5 1/2 weeks. I really felt like this was way too long, and I kept calling the doctors office. They kept saying some of the tests were pending.

Well the doctor ordered the full Celiac Panel including gene testing from Prometheus labs. It is the only lab he trusts to test for celiac disease, and although we weren't sure my insurance would pay for it, I had signed the part on the form that said we would be responsible to pay for the tests if the insurance wouldn't cover it. Well, the insurance wouldn't cover it, and without checking with either me or the doctor they went ahead and processed them through Quest Diagnostics. The very same lab that messed up my tests and did my kids first celiac tests which came back inconclusive. They are still showing positive in IgG only and they don't do the gene test! I'm waiting now for a call or e-mail from the doctor to see if we can repeat at least the gene test through Prometheus at my expense. He prefers to use them. Otherwise I will have to use Enterolab, and although I trust them, and the doctor did not discount them for my diagnosis, he doesn't know enough about them to accept the diagnosis for his patients. $1200 is a lot to spend for the Enterolab tests for three kids, so I want to make sure the doctor will not order new tests before doing it. I am really upset about this. They took 5 tubes of blood from my middle boy, for a bunch of tests to run with Prometheus and never even used them. They only need one for the Quest tests. I am really very discouraged, since I was hoping for an easier time of testing for my children.

Mariann

[gf4life]

Well, I can't get the kids in to see the doctor until April. I checked on the cost of the Prometheus tests and it is $290 for the blood tests, but if they are negative then they run the gene test. The cost for both is $730! Times three, it just makes my head spin. Even with the 25% discount for credit card pre-payment it is still $1650! I think I would rather pay @ $1200 for Enterolab. I wouldn't have the doctor's full backing, but I would have the results a lot sooner. I've pretty much made up my mind here, but I have to clear it with my husband first, since I would be pretty peeved if he went out and spent over $1000 without telling me first! I really need a little encouragement here. I just am really upset that this happened at all. I am almost envious of people who have an easy time of diagnosis. I mean how many people get diagnosed as gluten intolerant and never even knew it exhisted, but if you think you have it and try to get a diagnosis, good luck!

sorry for my ranting. You guys are the only ones I know who understand what I am feeling!

God bless,

Mariann

[Guest jhmom]

Mariann:

I am so sorry you are having to go through this but I don't blame you for being angry. You know, we trust doctors and labs to do their job and they let us down all the time! They make us feel like what we are experiencing is all in our heads and that the pain is not real!!!!! It's almost like they are offended because is most cases we are more knowledgeable about celiac disease than they are!!!!

APRIL??? The least they could do is see you again ASAP after the mistake they made!!!! I am sorry I am being negative, I just know you have been patiently waiting for these results and for them to wrong, I feel your pain!!!

Mariann, I know it is very important for you to have the doctors backing but in my opinion Enterolab is the way to go. You know when I received my diagnosis I did not even take my daughter to her Peds doctor to have her tested, of course this was the same doctor that told my daughter to eat more fruit when I took her in to check out the abdominal pain!!!! There was NO WAY I was going to allow the doctors to poke and prod at her like they did me!!! In fact I immediately put her on a gluten-free diet then a month later decided to have her tested through Enterolab and it came back positive. The way I look at it is there is NO reason for her docs to know about it because it's not like she needs meds for it, ya know? As far as her school goes I sent a letter explaining celiac disease along with the email from Dr. Fine, which included his diagnosis. They added it to her file with no problems at all.

I hope your husband agrees with the Enterolab testing and you get some answers soon! Remember we are here for you and praying for you too! Cheer up friend!!!!

[gf4life]

The way I look at it is there is NO reason for her docs to know about it because it's not like she needs meds for it, ya know?

Stacie, it isn't so much that I need the diagnosis from the doctors so they can treat the gluten intolerance, since that is treated at home, it is for the unexpected things that come up...

Like when they get sick with an infection and need antibiotics or decongestants, I need to make sure the meds are gluten-free. Most pharmacies give you what the doctor orders, no substitiutions except generic brands. Or if they have to be hospitalized for some reason and need to be on a gluten-free diet, they would have to get sick by eating the gluten if the hospital wouldn't believe me. Or when I take them to the Asthma & Allergy specialist to see if they still need their asthma medicine once they are well established on the diet. If he wants proof that they have gluten intolerance. I guess I'm just dreading them being treated like a hypochondriac all their lives, like I have been. My wonderful GI doctor made me feel just grand when she said the biopsy is negative and I could just forget about the whole "sprue thing". She gave me this look like I was just making my symptoms up, I don't want my children to have to go through that. I've had more GI related tests than most 31 year olds (except maybe on this site! ) but she can't find anything wrong with me, so I just have IBS and get sent home with a little pat and a shove. No one should have to be treated like that.

Thanks for the support though. I really need it right now. And I tried to get an earlier appointment date, but since they are seeing all three kids, their computer won't let them put more than one kid in a time slot, they have to have three back to back appointments. It's a children's hospital and they run a pretty tight ship! I actually had an appointment following my son's Upper GI xray tests on March 23rd, but they moved it so they could fit the other kids in with him. Now that made me mad, too. I'm going to talk to my husband about it when he gets home form work tonight, and we'll see about ordering the tests. I'm looking forward to the day when Dr. fine's test are the standard acceptable procedure, and we won't have to worry anymore.

God bless,

Mariann

[Guest jhmom]

The way I look at it is there is NO reason for her docs to know about it because it's not like she needs meds for it, ya know?

When I made this statement I was talking about my daughter, just didn't want you to think I was being judgmental of you.

Like when they get sick with an infection and need antibiotics or decongestants, I need to make sure the meds are gluten-free.

Mariann: Yeah this does make sense and I understand now. Do you not think Dr. Fine's findings/ diagnosis would be sufficient for these things? I sure hope they are!

I understand how you must be feeling right now and for whatever it's worth I am here for you and support you in the decision you make. Trust in God, it's all in his hands, you just keep doing what you are doing as far as looking oout for your children's health and well being.

You and your family are in my prayers, I hope you fine "accurate" answers VERY soon!

[gf4life]

I'm crying right now. My husband won't agree to the testing. He says this whole gluten trip I'm on is costing us too much money. I just feel like he is being so insensitive. He says I was fine before I knew about gluten, so he doesn't see what my problem is.

I wasn't "fine". I was in horrible pain everyday, but I had suffered for so long that I just kept the pain to myself. No body really wanted to hear about my complaints and the doctors weren't going to do anything about it. He has no clue what I was feeling.

He said no more testing. Well, hey I don't want anymore testing either, but I need to know for sure if the kids really are sick from gluten. I don't know what to do. I don't want to just put them on the gluten-free diet and forget about it. I at least need the Enterolab results for the school to cooperate. I just can't stand this.

Mariann

[Guest jhmom]

Oh Mariann, I am so sorry I know this is all very frustrating for you and I understand why you want to go through with the testing. You want your children to have answers and not have to struggle for them later in life!!!!

Would you be satisfied with the gluten sensitivity testing, it would be a lot cheaper and your hubby may agree to it?!?!!?? Just a thought

[gf4life]

Yeah! He changed his mind and agreed to the testing. I had to totally convince him that Dr. fine was not some fly by night quack out to get our money, but I had all the information at my fingertips, so that was easy. He is really worried about being able to pay off our credit card. And I don't blame him. There is no overtime where he works (at least right now, since they have overhired, and some guys aren't even getting full time hours) and there is no way to make any extra money. With three kids we couldn't afford childcare if I got a job, so we'll just have to sit on it a while. But I feel like the full panel is the way to go, since if they carry the gene, but aren't producing very many antibodies, I will still have them gluten-free. I just want a yes or no answer. No more maybe, not when my kids health is as stake.

Thank you so much for all your support. It will be so much better when I can get all the gluten out of the house. I think I will get contaminated less, and we will all feel better!

God bless,

Mariann

[Guest jhmom]

That is wonderful news, YEAHHHHHHH for hubby!!!!

I know this is a big relief for you!

[gf4life]

I ordered the tests. It has just been an emotional roller coaster the last two days.

I went out and got more gluten foods for my kids to eat during the next week. I hadn't gotten very many, since I thought the Prometheus tests would come back soon. I just have to keep the kids from eating too many of my gluten-free foods, and keep them on gluten until the tests are sent off. I will then stop buying gluten foods and let them finish off what is here, until the tests results come in. I hope the testing goes quickly. Since it is Friday, my order won't be processed until Monday and then it will take a few days to get the packages and I'll have to wait until the following Monday to send the tests back to them. So we are looking at the middle of March for the results. At least I will know before the follow-up with the Ped. GI. He might not accept the results, but oh well. I can't afford the higher priced Prometheus test and I don't trust the others.

God bless,

Mariann