We Got The Bloodwork Done Today!

[BlessedMommy]

This was long and hard fought for! After researching like crazy, switching doctors, and doing a 13 week gluten challenge, my 8 year old daughter got her celiac bloodwork (and a few other tests) done today!

 

I'm so glad that we've made it this far and it'll be wonderful to be out of limboland, no matter which way things go. I'll just be glad for an answer finally!

 

I got some of the other blood results back already, but the celiac tests are done in a different lab and will take a few days to come back. My daughter's white blood cell count is abnormally low and her hemoglobin, hematocrit, and red blood cell count are abnormally high. 

 

We have a doctor's appointment in a couple of weeks to discuss all the bloodwork. So we'll see what happens then!

[nvsmom]

  On 10/21/2014 at 11:45 PM, BlessedMommy said:

This was long and hard fought for! After researching like crazy, switching doctors, and doing a 13 week gluten challenge, my 8 year old daughter got her celiac bloodwork (and a few other tests) done today!

 

I'm so glad that we've made it this far and it'll be wonderful to be out of limboland, no matter which way things go. I'll just be glad for an answer finally!

 

I got some of the other blood results back already, but the celiac tests are done in a different lab and will take a few days to come back. My daughter's white blood cell count is abnormally low and her hemoglobin, hematocrit, and red blood cell count are abnormally high. 

 

We have a doctor's appointment in a couple of weeks to discuss all the bloodwork. So we'll see what happens then!

 

Good luck!  I hope you get very clear cut answers.  Let us know!

[BlessedMommy]

Thanks. That's what I hope for as well.

 

It really doesn't matter if it's positive or negative, I just want it to be clearly positive or clearly negative. No ambiguity!

[frieze]

hmm elevated H+H?  has hemochromatosis been checked for?

[BlessedMommy]

Not yet, but thanks for the suggestion! We see the doctor on 11/4 for follow up and I will ask her.

 

My daughters RBC, hemoglobin, and hematocrit were all elevated higher than the normal range. 

[edgymama]

Ahh wishing you luck on finding answers! I may be fighting for the same for my toddlers soon! 

[BlessedMommy]

Finding a good doctor makes a great deal of difference! My daughter's new doctor didn't hesitate to order the celiac tests.

[1desperateladysaved]

I am hoping for a definitive diagnosis, and that your kitchen can be gluten free for your sake.

 

Dee

[BlessedMommy]

I got the phone call from the doctor's office. The celiac tests came back negative. I'm thankful that we can move forward with that confidently ruled out. I'm thankful that I did the gluten trial and saw how well she did with that, as well as got the bloodwork run. If I didn't, there would be always be that nagging lingering doubt in my mind. The purpose of the tests was to give a clear yes or no answer as to whether she needed a gluten free diet, and I believe that we have accomplished that goal. Yay!

 

I will go over the results with the doctor. It will be interesting to see if they were borderline or if they were very low numbers. I also need to cover the abnormal CBC results with the doctor too.

 

My daughter is absolutely thrilled with the results and very happy to be out of gluten/gluten free limboland. I'm thrilled with the fact that I now no longer have to keep gluten in the house, now that her testing is presumably complete. She can just eat gluten at restaurants and friend's houses, no need to worry about getting in 1-2 slices of bread (or equivalent) every day.

 

Thank you to everyone for your support, we wouldn't have been able to get this taken care of without the support from the forum. 

[beth01]

Ruth- I'm glad you got an answer for your girl. It's got to be good to know the gluten can be gone now, at least for a few years. I would have been in full space suit mode if I had your reactions.

About her other labs, how high were they? So many things can cause slightly HGB, HCT, and RBC. Dehydration and asthma are two that my cloudy mind can think of off the top of my head. Sometimes it's just a fluke, the specimen isn't properly mixed before they analyze it or if the specimen had a small clot in it that can also affect the results. I hope it's nothing worrisome and you guys can get back to your normal routine.

[edgymama]

Aww so glad you got answers for her!!! 

[nvsmom]

I am glad she is fine. . Remember that her testing is not complete though, she will need to be retested every couple of years or sooner if she develops symptoms. celiac disease can develop at any time of life and with an immediate family member who is a celiac, she will continue to be at high risk of developing celiac disease.

But the odds are in her favour. I hope she remains healthy!

[BlessedMommy]

So how should I broach it with the doctor? Technically speaking, I'm not DX'ed, but the doctor knows my situation and my inability to complete the gluten challenge due to extremely severe symptoms. I've also talked to her about my recent neuro symptoms that I suspect were from gluten exposure after starting the kids' gluten challenge. She was concerned enough to suggest that I go see an allergist when I told her about my neuro symptoms.

 

She mentioned doing an endoscopy for me, but I pointed out that it wouldn't be accurate after 4 1/2 years gluten free anyway. (plus I'm uninsured)

 

Should I ask her to treat me as a celiac then, as far as testing for the kids goes?

[StephanieL]

Why would she suggest an allergist for you? 

 

I forget, have you had the genetic testing done on you?  If you don't have the genetics, then I don't think it would be necessary to continue to test the kids (unless they present with symptoms that may be).  

[BlessedMommy]

She thought that the symptoms sounded really worrisome and apparently outside a celiac reaction, I don't believe so, nor do I think there would be any point to going to an allergist.

 

I've thought of genetic testing, but I don't have an extra $600 to go get it done. 

[BlessedMommy]

I think, though, that doing genetics is a good idea. At least if I tested negative for genetics, I could save myself the trouble of testing the kids in the future. (unless they develop symptoms of course).

[StephanieL]

From everything you are talking about, I don't seen signs of IgE allergies which is what an allergist would test for.  It isn't recommended to test for allergies unless there was a KNOW and specific reaction to a specific thing.  Blanket testing is not the recommended practice as even IgE allergy testing leads to many false positives (upwards of 50%).  All the IgG testing that alternative practitioners do is not scientifically vetted as being of any use. They relieve you of nothing more than money.  

 

If your child is insured, perhaps they can be gene tested?  It isn't diagnostic in any way but if you know they have the genes, they testing every 3 years or when there are S&S is recommended for sure.

[BlessedMommy]

Our next appointment is November 5th.

 

Now, to focus on dealing with my daughter's 1 autoimmune disease that she's currently diagnosed with (vitiligo), hopefully we can get some answers for that! We see a specialist at the U of M this Friday.

 

We also screened for thyroid and B-12 and those numbers were normal. I'm glad--since people with vitiligo are more prone to AI thyroid diseases and pernicious anemia.

[BlessedMommy]

Excellent idea! If my daughter got the gene tests and they came back negative, it would save us a lot of time and hassle.

[nvsmom]

Genetic testing for re is a good idea. If you can not get that done then i would see if the doctor will treat her as if you are a confirmed celac (I forgot you did not have a diagnosis) if she is continuing to eat gluten. She will be safer that way, especially since she already has one autoimmune disease.

The safest route would be to keep her gluten-free, and for your own safety too. Otherwise, retesting and keeping a close eye on her is the best way to go.

It's tough with kids isn't it? Two of my three ave signs of gluten sensitivity but they tested negative. Since I am a celac it seemed safest to assume they are too. They feel better gluten-free but they have no diagnosis of anything.

[BlessedMommy]

I need to make a list of these concerns to take back to the doctor. I'm so glad that I have a doctor who appreciates patient input and takes my concerns seriously.

 

I'm also wanting to see the actual numbers on my daughter's tests. If they were borderline, I might pursue things more.

 

In other words, if a 20 is positive and she scored 19, then I would be inclined to retest her after a few more months of gluten consumption, rather than dropping the issue.

[BlessedMommy]

  On 11/2/2014 at 4:11 AM, nvsmom said:

Genetic testing for re is a good idea.

 

I'm not familiar with the abbreviation. What is re?

[ravenwoodglass]

  On 11/2/2014 at 3:30 AM, BlessedMommy said:

I think, though, that doing genetics is a good idea. At least if I tested negative for genetics, I could save myself the trouble of testing the kids in the future. (unless they develop symptoms of course).

It can also backfire on you if you happen to be one of us that doesn't have one of the two most commonly associated celiac genes. While it is rare there are celiacs that don't carry one of those two genes. I am a double DQ9 which has only recently been discovered to be celiac associated. Doctors don't commonly check for that gene and one of my children who got gene tested had her biopsy and blood work positive diagnosis taken away after that gene test. 

IMHO simply retesting antibody levels periodically is a better way to go. 

[StephanieL]

  On 11/2/2014 at 9:34 AM, ravenwoodglass said:

It can also backfire on you if you happen to be one of us that doesn't have one of the two most commonly associated celiac genes. While it is rare there are celiacs that don't carry one of those two genes.

 

IMHO simply retesting antibody levels periodically is a better way to go. 

 

It is exceedingly rare to not have the genetics.  As BlessedMommy is very aware on these things, wouldn't retesting IF there were S&S even if the genetics would happened to not be there be more helpful than having to do gluten challenges every x number of years and risking her health as there have been issues with the challenge in the house?  

[BlessedMommy]

I think that I'm simply going to go with the symptom approach. My doctor is aware of my severe issues with gluten, so I will let her know that if my kids develop migraines or neuro symptoms (or the more classic celiac symptoms) that I want the kids tested ASAP. I don't even know if I have celiac (I could have some other issue with gluten like gluten ataxia or NCGS for all I know), so I'm not sure that testing them every couple of years no matter what would be very helpful.

 

I hope that consuming gluten outside the house will be enough for them, because I simply cannot have large amounts of gluten in the house regularly. My kids are young, and no matter how many times they are reminded, do not always remember to avoid touching gluten free food with their hands after eating gluten. My 2 year old also has a habit of grabbing at my face and trying to put her fingers in my mouth.