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Leomag

Dr Office Called For Appointment To Discuss Results. Bad News ?

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Hi everyone.

 

My son had blood tests last week for celiac and the doctor's office called to ask to make an appointment cause doctor wants to discuss results. Do you wreckon that means that they came back positive ? (they also tested iron and other little things though)

 

My son is 10, growth deficency, ADHD, enemal hypoplasia, anemia + when eating gluten : red rash on buttocks, extreme sudden fatigue, nausea, gas, constipation. 

 

Your opinion please ? it's the week end and I can't wait until it's monday.  :(

 

Thank you for your help

Edited by Leomag

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If the results are positive, they probably want to discuss your next steps.  If the results are negative, they probably want to discuss your next steps.  

 

I hate when they won't say "The tests were negative.  We want to discuss where we go from here."  Or the reverse.  Would give you time to think of questions.  Any chance you could call back to day and insist on hearing the results.  Tell them you will still come to the appt but want time to get your thoughts and questions together?  That you don't want to react negatively infront of your child in the office?

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I insisted to the secretary but she said she couldn't say. 

I am gong without my son though so, no problem with taking in front of him

 

 

If possible, I would call back and talk to a nurse.  The person who makes appts can't tell you.

 

Make 2 lists of questions - one for negative & one for positive.  I know I forget what I wanted to say when I'm there.

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I am jsut very impatient to know and I wonder if the fact that they are asking to come in and that they wont say on the phone means it is positive ?

 

My son has so many symptoms that I wonder how that could be negative...

Either way, you will know something. My nephew's blood test was negative and they just stopped looking for anything else. I see this as a good sign, that, even if its negative, they want to help figure it out. But, honestly, a positive Celiac diagnosis might be better. You know what it is and can start making him better. Use the weekend to make a list of questions and concerns for either test result. Find some things to keep you busy.

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Did you have the blood drawn at a lab or at the doctors office? If you had it drawn at a lab, they might be able to get you a copy of the results. I always ask the lab to mail me a copy directly of my test results. They just have me fill out a form with my address and mail the results to my house then. If you had it drawn at a nearby lab, you might be able to call them and see about getting a copy. You would probably have to go and fill out the release form, but I'm guessing they could give you a copy right then, but I would definitely call them first. That's just an idea, but there may be some reason why your doctor wants you to wait for the results until you see him on Monday. I would call the doctors office back and try to probe for more info first though. I hope your son feels better soon.

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After I wrote the above post, I decided that wasn't great advice to suggest you call the lab for these results. When I got my positive results for celiac, my doctors phone nurse called and told me I tested positive for Celiac Disease, asked if I had any questions, and the call was at the most two minutes long. I would have much preferred if my doctor would have called me in for an appointment and taken the time to explain everything to me. Monday isn't too far away and it will give you a chance to think of lots of questions to ask your doctor. Hang in there :)

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Sometimes doctors have a policy of making you come in to discuss any results, good or bad. It's really annoying. I had to pay a $30 copay and get out of work to have my doctor tell me that all of the test results in my yearly physical were normal.  :angry:

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Try to calm both your and your son's anxiety over the weekend - you are very close to knowing the answer. I know how frustrating that is, but soon enough you'll see the doctor.  From there you'll have decisions to make, either positive and make dietary changes, or negative --- and make dietary changes.

 

I am in the same boat awaiting results, but already scheduled for biopsy - which I thought was backwards.  I intend to eliminate gluten directly after the biopsy on 3/5. 

 

I'm sorry to hear your son is suffering, and from my limited knowledge it seems it could be celiac or gluten intolerance.  The answer is near.  

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So I've had the results today. 

 

Alleles :

DQA1*05:01 = not detected

DQB1*02:01 = not detected

 

DQ8 alleles

DQA1*03 = not detected

DQB1*03:02 = detected

 

Gliadin IgG < 5.0 U/ml

TTG IGA not detected

 

The doc says that means he doesn't have celiac. Then what does the detected DBQ1*03:02 means ??? I must say I got concerned about all this when the doc was talking about wether or not he thought there was gluten in Corn !!

 

What do you think ?

 

 

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thank you for your answer.. Is this regardless of the symptoms ?

Gene testing can not fully rule celiac in or out. There are folks with the 2 most common genes who don't have celiac and folks without those genes that do.

It doesn't look like your doctor did a full celiac panel on you. Did they test for your total IGA? If you have low IGA then any IGA testing is worthless.

If your testing is finished for celiac then your next step is giving the diet a strict try for at least a couple months to see if the diet helps. Sometimes our body knows answers that the tests don't.

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Are these the only tests he had?  You absolutely cannot rule out Celiac Disease based on these tests alone.  He got mostly genetic tests (which really don't tell you anything more than he may or may not develop the disease in his lifetime . . . and there are always exceptions) and two of the blood tests. (A full panel has 5-7 different tests)  Looks like you need:  1) more lab work; and 2) a new, more knowledgeable doctor.

 

The testing process is very frustrating and even with all the correct tests, your child could still test negative and have celiac or a sensitivity to gluten.

 

If the doctor refuses more tests AND you are unable to change doctors, try the diet and consider it another "test."  If the symptoms improve, you will know he has a problem with gluten.  Some people find it hard to stick to the diet 100% without "proof" but you can do it.

 

Do not let the doctor talk you out of trying gluten free . . .  I've heard some refer to it as "unhealthy" or "drastic" if it is not medically required.  As long as you are making healthy choices, it is fine.  I know everyone in our house has a much more nutritious diet since we went gluten free.

 

Best of luck to you.

 

Cara

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I suggest that you take the time to try to get more complete testing before trying the gluten free diet.  Especially with a child, you could have problems with people not believing that he has the condition further down the road.  You could have problems with schools not wanting to make accomodations.  People have a real tendency to discount symptoms with children.  Celiac symptoms are not that easy to see from the outside.

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