• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Dr Office Called For Appointment To Discuss Results. Bad News ?
0

Rate this topic

18 posts in this topic

Recommended Posts

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

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


I can't predict what the doctor will say.  Don't think of it as bad news though.  Think of it as knowledge that will allow your son to get better.  Try to do some fun things this weekend to get you mind off it. 

  • Upvote 1

Share this post


Link to post
Share on other sites

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?

  • Upvote 1

Share this post


Link to post
Share on other sites

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.

  • Upvote 1

Share this post


Link to post
Share on other sites
Ads by Google:


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...

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites


Ads by Google:


I remember waiting for my test results.  Monday will come.  I believe I would call and talk to the doctor or nurse though.  Your child does seem to have many symptoms that are suspicious.  I wish you all well!

 

D

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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 :)

Share this post


Link to post
Share on other sites


Ads by Google:


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:

Share this post


Link to post
Share on other sites

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.  

Share this post


Link to post
Share on other sites

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 ?

 

 

Share this post


Link to post
Share on other sites

Just having a gene doesn't mean you have celiac. About 30% of people have at least 1 gene for Celiac. They have to " turn on".

Share this post


Link to post
Share on other sites


Ads by Google:


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.

  • Upvote 1

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,143
    • Total Posts
      939,895
  • Member Statistics

    • Total Members
      66,132
    • Most Online
      3,093

    Newest Member
    Andre
    Joined
  • Popular Now

  • Topics

  • Posts

    • Its interesting you should say that. I don't normally drink alcohol, I've always felt it tasted like medicine - no idea why! -  but drank some sparkling wine recently out of politeness.  Oh the pain!  At my last appointment my gastroenterologist had asked me if I drank - she never told me why, but if that's what alcohol does to people with gastritis it should be the first thing to avoid I reckon. Also interesting that you had that as an initial diagnosis.  I too had what I am sure was gastritis pain before I was diagnosed.  I was on omeprazole for a month which took the pain away but omeprazole seems to cause D for me. The strange thing was after I stopped the omeprazole the D did not.  That was why I ended up having the scope.  In a way, I wonder if I would have ever been diagnosed had it not been for the gastritis and the omeprozole. 
    • Joseph, for the first 6 months at least, you might want to cook ALL fruits & veggies except maybe bananas & pears. Make it easier on your damaged gut to digest and allow it to heal faster. Also, home made bone broth is amazingly nutritious as well as healing. https://blog.paleohacks.com/bone-broth-recipe/#
    • Can you tell me if my symptoms can be caused by gluten intolerance? burning sensation in mouth (gums, lips) quickly rising blood sugar after eating gluten, then high heart rate I only eat gluten once a day. Later in the day, blood sugar won’t rise as much, but also goes down too much, despite eating a good combination of protein, carbs, veggies. No matter if I eat less or more. burning esophagus burning stomach stool that passes so quickly that I have bad cramps for a while afterwards and feel nauseous often joint pain itching burning skin constipation ringing in my ears nightmares  stiff muscles, especially in my arms anxiety after eatng gluten temper tantrum after eating gluten (crying, anger, anxiety, ocd thoughts) hunger after eating gluten; sometims for hours, even at night shortness of breath/air hunger/not being able to breathe in deeply yawning I am feeling so desperate. I had blood tests and biopsy and it showed no celiac disease. I do have symptoms of itching, burning mouth, high heart beat, nausea shortly after eating gluten, so I know I am sensitive. I tried to stop gluten and then got such bad hypoglycemia, that I did not know how to continue. So I tapered slowly. But in the meantime, not really getting better. The hypoglycemia is now worse and seems to have to do with my hormonal cycle, which is also messed up. Tryng to stop gluten actually worsened pre-existing mild hypoglycemia. Also when teying to stop, I felt very dizzy, as if my blood sugar was too low all the time (couldn’t measure, no meter back then). I got very anxious, a lot of itching, my menstrual cycle got messed up, pain in my calves and cramps in my feet. When I cut out a small bit, I had it milder. Especially the dizzyness, brain fog and not being able to think clear got better. Can I expect the hypoglycemia to get better?  I am so fed up with feeling sick all the time. But I am afraid too, what will hapoen when I stop, as I know the last time I tried was bad.  Thanks in advance for taking the time to answer my questions. Kirsty
    • You can be safe with just a general multivitamin.  Look for one that is gluten free.  Read our Newie 101 thread located under the “Coping” section of the forum for tips.  Browse through Celiac.com for more ideas.   Food is till the best source for vitamins and minerals, but sometime supplementation is needed.  I do not take any (took iron when I was first diagnosed since my anemia was severe), however, I make sure I eat a varied gluten-free diet and I try to avoid processed junk food.   You might look into avoiding nightshades for a while (white potatoes, tomatoes) to see if that helps with joint pain.  Besides celiac disease being ruled out (please make sure you had more than the TTG IgA and IgA deficiency test because not all celiacs test positive to the TTG like me), did they check for R. Arthritis?   I am sure others will contribute more soon.   Welcome to the forum!  
    • Hey Joseph!   You might re-think that gluten-free oatmeal.   For years,  oatmeal was prohibited.  Researchers eventually determined that some celiacs could have oatmeal as long as it is pure (no possibility of cross contamination from field to factory).  But some 10% of celiacs  still react to oatmeal.  Plus, there is a new controversy over sorted vs. dedicated grown oats.  So, best to avoid oats for the first six months and then experiment.   When my GI tract is inflamed from celiac disease (flare-up) from accidentally being exposed to gluten, I stick to well-cooked foods (even fruit).  It makes it easier to digest.  Once better, I go back to my normal gluten-free diet.  
  • Upcoming Events