Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Now I'm Confused!


ptkds

Recommended Posts

ptkds Community Regular

Two days ago, the dr's office told me that my dd#2 has celiac disease. Then today the dr calls me and tells me that they got more results in and she is negative, although some other number was high. He said her IgA was fine. So I asked him about IgA deficiency and he said it could be a possiblilty but they would have to do another test on both dd's to check for that because it is a diferent test than the celiac panel that they already did. So now I have to drag my 2 older dd's back to get blood drawn again.

So can someone explain this to me? How can 1 number be high and 1 dr say it is Celiac, then another dr says it isn't because some other number is not high? The 1st time I talked to them, it was my dr who diagnosed me, and for some reason his nurse had my dd's results. But today my dd's pedi called me.

So have a completely confused yall?? :blink: I am really tired right now, so I can't really think straight, much less type!

If you can understand all this, then thanks for reading!!! Please help!!

ptkds


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

If you have celiac disease, one daughter has been diagnosed as well, and one of your second daughter's test results was high, it is VERY likely that it was because of celiac disease as well. If they were my own kids, I'd just put the whole gang on a gluten-free diet, to see how they'll respond to it, and if you can see positive changes.

All that besides it being so much easier for you to just cook gluten-free for everybody, and not having the problem of cross contamination in the house. If your husband wants to eat gluten, he can do it outside the house.

Since celiac disease is genetic, it would make a whole lot of sense if your first doctor was right, and your pd is wrong. Why put the kids through more blood work, when the diet is the best test for young children anyway. The tests are highly unreliable in little kids.

Guest nini

my daughter's test result was negative, mine was positive, yet we both responded very well to the diet. my daughter's symptoms were the same as mine when I was a small child... testing in children is unreliable, if it's positive IT'S POSITIVE, but if it's negative, it only means not positive right now... dietary response is the best indicator. My daughter is 6 and adheres to the diet with no problems. It's all how you approach it. I think you should go with prevention over waiting for confirmed damage since it is genetic and just take all the girls off gluten. It will be less confusing on you that way. And if you want suggestions on how to do the diet on a small budget, there are threads on here already on that subject.

chrissy Collaborator

they obviously aren't up to date on testing or they would have done a total IgA serum to begin with. if the only test that was high was the AGA IGA----then that could explain why one doctor would say positive and another doctor would say negative. do you know which tests they ran?

happygirl Collaborator

My best advice:

Get the results, hard copy (not someone reading them over the phone), and post them on here, word for word. The doctor's office has to get them to you. Call them, tell them what you want, and that you are coming up there to pick them up. :)

We'll help you out!

Laura

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - hjayne19 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Celiac Screening

    2. - yellowstone posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Cold/flu or gluten poisoning?

    3. - Churro replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Celiac disease symptoms

    4. - Wheatwacked replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Celiac disease symptoms

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,069
    • Most Online (within 30 mins)
      7,748

    Cr88
    Newest Member
    Cr88
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • hjayne19
      Hi all,  Looking for some advice. I started having some symptoms this past summer like night sweats and waking at 4 am and felt quite achy in my joints. I was training heavily for cycling for a few weeks prior to the onset of these symptoms starting. I have had low Ferratin for about 4 years (started at 6) and usually sits around 24 give or take. I was doing some research and questioned either or not I might have celiac disease (since I didn’t have any gastric symptoms really). My family doctor ran blood screening for celiac. And my results came back: Tissue Transglutaminase Ab IgA HI 66.6 U/mL Immunoglobulin IgA 1.73 g/ My doctor then diagnosed me with celiac and I have now been gluten free for 3 months. In this time I no longer get night sweats my joint pain is gone and I’m still having trouble sleeping but could very much be from anxiety. I was since referred to an endoscopy clinic to get a colonoscopy and they said I should be getting a biopsy done to confirm celiac. In this case I have to return to eating gluten for 4-6 weeks before the procedure. Just wanted some advice on this. I seem to be getting different answers from my family physician and from the GI doctor for a diagnosis.    Thanks,  
    • yellowstone
      Cold/flu or gluten poisoning? Hello. I've had another similar episode. I find it very difficult to differentiate between the symptoms of a cold or flu and those caused by gluten poisoning. In fact, I don't know if my current worsening is due to having eaten something that disagreed with me or if the cold I have has caused my body, which is hypersensitive, to produce symptoms similar to those of gluten poisoning.        
    • Churro
      I'm no longer dealing with constipation. I got my liver test last month and it was in normal range. Two years ago I did have a vitamin D deficiency but I'm know taking vitamin D3 pills. Last month I got my vitamin D checked and it was in normal range. I don't believe I've had my choline checked. However, I do drink almond milk eat Greek yogurt on a daily basis. 
    • Wheatwacked
      Non-Celiac Gluten Sensitivity (NCGS) can be associated with low ferritin and iron deficiency. Once Celiac Disease (1% of the population affected) has been ruled out by tests the next step is to check for Non Celiac Gluten Sensitivity (10% of the population affected) by eliminating gluten for a trial period, then re-introduce Gluten Challange. Have you been supplementing Iron? How are your liver enzymes? Low levels of ferritin indicate iron deficiency, while  59% transferrin saturation indicates high iron levels.  Possibly indicating Fatty Liver Disease.  Choline is crucial for liver health, and deficiency is a known trigger for Non-Alcoholic Fatty Liver.  Some experts say that less than 10% eat the the Food and Nutrition Board established Adequate Intake that are based on the prevention of liver damage. Severe constipation and hemorrhoids may be linked to a bile or choline deficiency.  "Ninety-five percent of phospholipids (PLs) in bile is secreted as phosphatidylcholine or lecithin."  Fatty acid composition of phospholipids in bile in man   Deficiency of these bile salts causes the bile to get thick. Some people with Celiac Disease are misdiagnosed with Gall Bladder bile issues.  Removal of the gallbladder provides only temporary relief. Whether or not celiac disease or NCGS are your issues you need to look at your vitamin D blood level.   
    • Churro
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.