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

Waiting For Results

mom2katry

Recommended Posts

mom2katry Newbie
mom2katry
Posted

Hello. I am new here. My daughter is 7 and has a positive blood test for Celiac. She had her biopsy last Wednesday and we are currently waiting for the results. I thought maybe I could ask a few questions here while we wait.

Her main symptom is constipation. She has suffered from it since she was a baby. Doctors kept telling us that it is normal and that some kids just have "functional constipation" and she might eventually grow out of it. Well, at her 7 year old check-up, they noticed that her growth has slowed tremendously. She went from the 50th % to the 5th % over the last few years. They sent us for bone age X-rays which show her as being 5 years old. Next we were sent for bloodwork, which came back positive for Celiac Disease. Within a few days we were seeing a GI doc who took her in for a biopsy that same day. When the doc came out, he showed us pictures and told us that he didn't see much damage, just some inflamation. He seemed to think that maybe she doesn't have it, but wanted to wait for the biopsy to come back before he said for sure.

Now I am confused. If she ends up NOT having Celiac, than what else could it be!?! Something is obviously stopping her from growing? Everything I have read leads me to think that she DOES have Celiac. Don't get me wrong, I don't want her to have it, but if she does, at least we will have answers. If they tell me that she doesnt' have it, I have NO idea what else could be going on with her.

Does anyone know if she can have a positive blood result, but NOT have Celiac?

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

Celiac.com Sponsor (A8-M):


leadmeastray88 Contributor
leadmeastray88
Posted
Hello. I am new here. My daughter is 7 and has a positive blood test for Celiac. She had her biopsy last Wednesday and we are currently waiting for the results. I thought maybe I could ask a few questions here while we wait.

Her main symptom is constipation. She has suffered from it since she was a baby. Doctors kept telling us that it is normal and that some kids just have "functional constipation" and she might eventually grow out of it. Well, at her 7 year old check-up, they noticed that her growth has slowed tremendously. She went from the 50th % to the 5th % over the last few years. They sent us for bone age X-rays which show her as being 5 years old. Next we were sent for bloodwork, which came back positive for Celiac Disease. Within a few days we were seeing a GI doc who took her in for a biopsy that same day. When the doc came out, he showed us pictures and told us that he didn't see much damage, just some inflamation. He seemed to think that maybe she doesn't have it, but wanted to wait for the biopsy to come back before he said for sure.

Now I am confused. If she ends up NOT having Celiac, than what else could it be!?! Something is obviously stopping her from growing? Everything I have read leads me to think that she DOES have Celiac. Don't get me wrong, I don't want her to have it, but if she does, at least we will have answers. If they tell me that she doesnt' have it, I have NO idea what else could be going on with her.

Does anyone know if she can have a positive blood result, but NOT have Celiac?

Hi there! :)

False positives are pretty rare when it comes to bloodwork.

I think it's pretty telling that her doc noticed some inflammation. You'll have to wait and see how the pathologist reads the biopsy - remember that she's only 7. It wouldn't be surprising if she didn't have full-blown celiac disease yet, she's so young. Also, damage can be patchy and they may not have taken a part that was damaged...we have 20 feet (or something like that) of intestine so what are the chances?

I read a story on here a week or so ago where a mom took her 6 year old daughter who has positive bloodwork for a biopsy and they told her she didn't have Celiac. A year or so later they retested her and Bingo, Celiac Disease. It's progressive so if she hasn't had it long enough, they'll tell you she doesn't have it even if she really does, she just doesn't have extensive damage...you don't really want to give her gluten if its hurting her right?

Either way, I would take her bloodwork to heart and get her on a gluten free diet ASAP...you have nothing to lose! All of her testing is done so it's safe to do so now.

Welcome, you've found an amazing support group! :)

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,127
    • Most Online (within 30 mins)
      7,748
    Steve715
    Newest Member
    Steve715
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Just wanted to add that checking B12 and Vitamin D only is not going to give an accurate picture of vitamin deficiencies.   B12 Cobalamine needs the seven other B vitamins to work properly.   You can have vitamin deficiency symptoms before the B12 blood level changes to show deficiency.  You can have "normal" B12, but have deficiencies in other B vitamins like Thiamine and Niacin, for which there are no accurate tests. Take a B Complex supplement with all the B vitamins.  Take additional Thiamine B 1 in the form Benfotiamine which has been shown to promote intestinal healing.  Thiamine Mononitrate found in most vitamin supplements is not easy for the body to utilize.  What makes thiamine mononitrate not break down on the shelf also makes it hard for the body to absorb and utilize.  Thiamine and Niacin B 3 deficiency symptoms include anxiety, depression and irritability.  The brain uses more Thiamine than other organs.  Take the B Complex and Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and look for health improvements in the following weeks.
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      Hello, @rei.b, Ehlers Danlos syndrome and Celiac Disease can occur together in genetically predisposed individuals.  Losing ones gallbladder is common with celiac disease. I'm glad Naltrexone is helping with your pain.  Naltrexone is known to suppress tTg IgA and tTg IgG production, so it's not surprising that only your DGP IgG and DGP IgA are high.   Have you tried the Autoimmune Protocol diet designed by Dr. Sarah Ballantyne, a Celiac herself?  The AIP diet helps lower inflammation and promotes intestinal healing.   The AIP diet is a Paleo diet that eliminates foods that can cause intestinal inflammation until you heal on the inside, then more foods can be added back in.  The low histamine AIP diet will help reduce inflammation further.   Histamine is released as part of the immune response in celiac disease.  Foods also contain various amounts of histamine or provoke histamine release.  Lowering the amount of histamine from foods helps.  The body, with help from B vitamins, can clear histamine, but if more histamine is consumed than can be cleared, you can stay in an inflammatory state for a long time. Cutting out high histamine foods is beneficial.  Omit night shades which contain alkaloids that add to leaky gut syndrome found with celiac disease.  Night shades include tomatoes, peppers including bell peppers, potatoes and eggplants.  Processed foods like sausages and gluten-free processed products are high in histamines.  All Grains are removed from the diet because they are inflammatory and provoke histamine release. Blood tests for deficiencies in B vitamins are notoriously inaccurate.  You can have vitamin deficiency symptoms before blood levels show a deficiency.  Blood levels do not accurately measure the quantity of B vitamins stored inside the cells where they are utilized.  The brain will order stored vitamins to be released from organs into the blood stream to keep the brain and heart supplied while deficiency occurs inside organs, like the gallbladder.  Gall bladder dysfunction is caused by a deficiency in Thiamine Vitamin B 1 and other B vitamins.   The eight essential B vitamins are water soluble and easily lost with diarrhea and constipation, and the malabsorption and inflammation that occurs with celiac disease.  Because they are water soluble, the body can easily excrete any excess B vitamins in urine.  The best way to see if you are deficient is to take a B Complex and Thiamine in the form Benfotiamine and look for health improvements in the following weeks.  Most B Complex supplements contain Thiamine Mononitrate which is not bioavailable.  The body has a difficult time utilizing thiamine mononitrate because it doesn't break down easily.  Benfotiamine has been shown to promote intestinal healing.   Remember your intestines are in a damaged, permeable state.  Treat them tenderly, like you would a baby until they heal.  You wouldn't feed a baby spicy bell peppers and hard to digest corn and nuts.  Change your diet so your intestines can heal.   I use a combination of B12 Cobalamine, B 6 Pyridoxine, and B1 Benfotiamine for pain.  These three B vitamins have analgesic properties.  They relieve pain better than other otc pain relievers. 
    • Mari
      My only proof

      By Mari · Posted

    • trents
      High DGP-A with normal IGA

      By trents · Posted

      Sorry, I think I got you mixed up with another poster.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I hadn't been eating gluten free before having the antibody test done. I started eating gluten free after having the test done because the gastro PA told me to eat gluten-free for 6 months. I'm now 3 months in.
×
×
  • 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.