Postive Blood Test For Celiac

[zapsmom]

My DD who is 7 tested postive for celiac. Her level that i know of for one test(I guess the main one that say if it is postive or negative) was a 39. Not that high but the dr said it was a postive. We are waiting to get int o see the ped GI which right now is not till June and that is just the consult. I am not sure if she has any signs of celiac except for the fact that she has loss 12 lbs in three weeks, she has constipation(DH who has celiac says that she should have diahra to have celaic), acid reflux. She also has type 1 Diabetes(dx'd at 18 months)and hpyothroidsim. She also has learning delays and chronic sinus/ear infections even after tubes were put in. So I guess I am wondering(maybe I am in denial at the thought she will has something else that will be a major cahnge in her life)but could there be a chance that it is a false postive. We are keeping her on gluten like the drs have said till she has her scope. I guess I am also concern about her weight loss and the 3 month wait till we see the GI specailist. Will that be safe for her?

Thank you...

[Benshell]

The chances of a false positive are almost none, false negatives are more common. Also, once you have one auto-immune disorder, the chances of having another, increase dramatically (you mentioned thyroid disorder and diabetes). I felt the same way when my daughter was diagnosed - like what else can go wrong, she's got no thyroid (been on medication since birth), joint issues and now this! And people with untreated celiac can have constipation or diahrhea - its not one or the other. Chances are, her instestines are damaged, not absorbing the nutrients, leading to failure to grow or put on weight. Also, not absorbing the fiber necessary and therefore making her constipated.

FIrst thing - if her bloodwork came back positive, call the GI dr and insist on getting an earlier appt - play the sympathy card that your daughter is extremly sick, are there any other offices the dr goes to that may not be as busy. Ask to be put on a waiting list for a cancellation. Yes, there always is a wait. I have several friends that tried to get an appt with my daughter's gastro and were told to wait 3 mos. Some were able to be slipped in one month by going to a different office. Yes, she will need to stay on gluten until she sees the dr in case they want to do an endoscopy since her #'s are not that high or redo blood work. However, you don't need to give her a loaf of bread a day.

I can almost guarantee once your daughter goes gluten free, her sinus issues will clear up, possibly improvement in diabetes (you must see a nutritionist b/c a lot of gluten-free products are made with simple starches which could affect her blood sugar levels)

Just so you know, you're not alone...my daughter was born without a thyroid at all and it was her endocrinologist who actually tested her for celiac. We've been on the thyroid medication rollercoaster - the ups & downs, joint issues, hernia issues, teeth issues. Its hard, then with the celiac diagnosis I also couldn't believe it. But I did a ton of research. Celiac is genetic, so if you dh has it, chances are she does too. No one in my family has celiac, but we've never done the genetic testing, so who knows. Also, a gluten free diet actually helps people with thyroid disorders as gluten acts as a trigger for the auto-immune system. In the first 6 mos of going gluten free, my daughter's thyroid medication was cut from 80mcg to 50mcg because all the sudden her body was absorbing the medication.

You will see a miraculous difference. Please feel free to message me with any questions. Yes its, scary, but once you know whats definatley wrong and can fix the problem, she'll get better real fast.

[Lovemykids34]

My DD who is 7 tested postive for celiac. Her level that i know of for one test(I guess the main one that say if it is postive or negative) was a 39. Not that high but the dr said it was a postive. We are waiting to get int o see the ped GI which right now is not till June and that is just the consult. I am not sure if she has any signs of celiac except for the fact that she has loss 12 lbs in three weeks, she has constipation(DH who has celiac says that she should have diahra to have celaic), acid reflux. She also has type 1 Diabetes(dx'd at 18 months)and hpyothroidsim. She also has learning delays and chronic sinus/ear infections even after tubes were put in. So I guess I am wondering(maybe I am in denial at the thought she will has something else that will be a major cahnge in her life)but could there be a chance that it is a false postive. We are keeping her on gluten like the drs have said till she has her scope. I guess I am also concern about her weight loss and the 3 month wait till we see the GI specailist. Will that be safe for her?

Thank you...

I think it is ridiculous for your daughter to have to wait 3 months for an appt. with GI doc. Being that she tested positive she may have celiac disease and since you have to keep her on the gluten till the scope the gluten will damage her instestine. Are there any other GI docs that you can see? I would call your pediatrician and ask them to get you an appt. as soon as possible as your daughter is rapidly losing weight. If they dont help, I would ask to go on a waiting list and look for other qualified GI doctors within your region. Good Luck and keep trying!

[mamaupupup]

Hi there!

Thinking of you and your DD. I agree with the others: call to get an earlier appointment. Tell them she has lost 12 lbs in three weeks and that you think her health is deteriorating quickly.

Waiting for our appointment--it took me six weeks just to get on the list for an appointment--was one of the greatest stressors in this whole process.

I badgered the staff, I talked to the staff supervisor, I called daily. Oddly, one day I called and said, "We were hoping to get to see the doctor on March x, were you able to fit us in that day?" and the receptionist said yes and gave us the time. I think being specific and calm that time helped. Then I was paranoid that something would happen and they'd cancel on us but it all went smoothly!

From what you're writing, there sounds to be a very good chance your DD has Celiac. (BTW we have two kids who will have their final diagnosis in about 10 days and neither of them has had diarrhea). I too went through a period of denial...it seems it's part of being a hopeful mom! Hang in there and do what you can to get an earlier appointment.

[Mom-of-Two]

There is probably no doubt that she has celiac- the fact that dad has it adds even another piece to the puzzle. It explains so many of her issues, while it is difficult to accept, try to realize that this is a positive- you can fix it, there is something you can do.

That is a huge amount of weight loss, I would do what you can to get that appt sooner, you could try having your pediatrician call the GI office.

My children are being tested in a couple weeks (because I am newly diagnosed) and I am really nevous. But glad to just know and go on with gluten free life.

Hang in there, I imagine so many of her issues will resolve, which as a parent will be wonderful for you to see!

[kb27]

A 3 month wait is a long time. We only had to wait 6 weeks, and it was ok only because my son didn't really have any symptoms. If he had lost 12 pounds, I'd be really concerned about waiting any longer (that's a lot for a 7 year old).

Can they put you on the cancellation list (call you up if someone cancels)? Is there another clinic in a bigger city you can go to? (Our Ped GI is only in town 2 days a week, but we probably could have shaved a week or 2 off by driving 3 hours away to the big city.)

The only thing that was nice about the wait was that it gave everyone a chance to get used to the idea of going gluten-free. We tested out a few recipes, slowly started to clean the kitchen, bought up a few gluten-free items like pretzels and pasta so we were ready to go, and read a lot of books with my 8-yr-old. He loved "The gluten-free Kid".

[Skylark]

Poor kiddo. She got more than her fair share of health problems. It's probably real. There is a high incidence of celiac among people with Type 1 diabetes. She doesn't need diarrhea to be celiac. Some people with celiac are constipated instead.

She does need to be on gluten until the scope, but you need to be sure her GI knows that she is ill and losing weight. Call the GI's office, get them to acknowledge that they have written the rapid 12 lb. loss in her chart. Then ask them to talk to the doctor, verify that it is safe to wait three months, and call you back. That way if she gets sicker you will have chart notes and possibly justification for an earlier appointment.

Get on the wait list for cancellations and call frequently early in the morning, very gently and politely asking if there is a cancellation. They will get sick of you, and sometimes it helps.

[zapsmom]

First, THANK YOU all for your support! Secondly, withthe help of her Diabetic team, we were able to get her in sooner. She NOW has an appointment March 26 to see the ped GI specailist and her scope is scheduled as well for April 11.. I am anxious to get all of this done so we can finally get her healthy and get her D back in control!