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

What Could This Mean?


mart

Recommended Posts

mart Contributor

Hi. Does anyone know what this could mean? My 11 year old daughter was screened for celiac disease after her 7 year old brother tested positive. He has all the classic symptoms, she only has a few. The doctor's office called to say that she does not have celiac disease, but could develop it in the future because one of the two serology tests were positive. I read at the doctors office that this test was "99.98% accurate for life." I want to put her on the gluten-free diet ASAP, but they said it isn't necessary and that they want to retest her next year. If the test is so accurate, why do I need to retest in a year? In the meantime, my daughter is approaching puberty and is smaller than her peers.

Has anyone else had this test experience, and if so, what do you make of it? It seems everything I ask the doctor is answered with a quick and dismissing "I don't know." Makes me sad, scared and confused.

Also, do you agree with my thought that my daughter should go gluten free too?


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



Celiac.com Sponsor (A8-M):



aikiducky Apprentice

I don't understand why doctors in general are so reluctant to recommend a gluten free diet anyway. Even when it's highly likely that a person has celiac disease, they'd prefer to see one eat gluten until there's extensive and maybe permanent damage before recommending the diet. :rolleyes:

A grumpy way of saying, yes, I wholeheartedly agree with you. Your daughter tested positive. I don't understand what they expect to change in a year. Better get on the diet sooner than later, and prevent all those future problems before they have a chance to develop.

Pauliina

Smunkeemom Enthusiast
Hi.  Does anyone know what this could mean?  My 11 year old daughter was screened for celiac disease after her 7 year old brother tested positive.  He has all the classic symptoms, she only has a few.  The doctor's office called to say that she does not have celiac disease, but could develop it in the future because one of the two serology tests were positive.  I read at the doctors office that this test was "99.98% accurate for life."  I want to put her on the gluten-free diet ASAP, but they said it isn't necessary and that they want to retest her next year.  If the test is so accurate, why do I need to retest in a year?    In the meantime, my daughter is approaching puberty and is smaller than her peers.

Has anyone else had this test experience, and if so, what do you make of it?  It seems everything I ask the doctor is answered with a quick and dismissing "I don't know."  Makes me sad, scared and confused.

Also, do you agree with my thought that my daughter should go gluten free too?

<{POST_SNAPBACK}>

my daughter kathryn tests were weird and her doctor says that she "doesn't have it now but may develope it one day" and suggested that we keep her on a 'low gluten diet' and wait for her to get sick.

I talked to Kathryn about it (she is 4) and she wants to do the gluten free diet anyway, she says the food tastes good and that way maybe she won't even have to get sick (sounds smart to me)

Kathryn doesn't have the "bathroom symptoms" but does get stomache cramps and has tested slightly anemic though, and sometimes she has really really cranky days and then I remember what all she ate, and it was a whole load of gluten, she was wanting to wait until after tonight to go gluten-free (we went to a hayride with smores) she has decided now that she has had smores that they weren't a big deal and she can live fine without them so tomorrow is her first gluten-free day.

anyway sorry for the long post, talk to your kid and see if she wants to commit to gluten-free for a year or so to see if she feels better and if she grows any, chances are that after a year she will feel so great she won't want to go back... :D

Indea88 Newbie

That was enough for me. A positive genetic test, the DQ2. When I heard this about my 2 year old who hadnt had a formed stool since birth, I started the gluten free diet that day. My toddler is a different child. It sounds like your daughter had positive genetic testing.I know it is harder at this age. My other son who isnt positve is 11 and I know it would be all together different for this age child to begin gluten-free but she will feel better and know the difference...

Guest nini

I would put her on the gluten-free diet ASAP...

I am so sick of the Dr.s that adopt this "wait and see" attitude. Oh lets keep feeding this child POISON and see if in a year she's any sicker... WHAT???? :blink::blink:

With a brother that is pos. and having some pos. bloodwork, WHY WAIT FOR IT TO GET WORSE??? and it will get worse. Maybe not until she is an adult and trying to have a child and has recurrent miscarriages or infertility. It will get worse.

IMHO it is better for your entire household to go gluten-free especially with your son's pos. results. It will make it easier on all of you in the long run.

Don't feel like you have to spend a lot on specialty foods, stick with a healthy diet of meats, fruits and veggies that are naturally gluten-free... there are a lot of options out there.

Carriefaith Enthusiast
I read at the doctors office that this test was "99.98% accurate for life."
which test did she have?

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. - Hmart replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Is this celiac?

    2. - knitty kitty replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Fiber Supplement

    3. - knitty kitty replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      ttg iga high (646 mg/dl) other results are normal

    4. - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      Fiber Supplement

    5. - Wheatwacked replied to Larzipan's topic in Related Issues & Disorders
      36

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,345
    • Most Online (within 30 mins)
      7,748

    rolland mcclay
    Newest Member
    rolland mcclay
    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

    • Hmart
      Hello again. Thank you for the responses to date. I have had several follow-ups and wanted to share what I’ve learned. About a month after my initial blood test and going gluten free, my TtG went from 8.1 to 1.8. I have learned that my copper is low and my B6 is high. My other vitamins and nutrients are more or less in range. After I glutened myself on 10/24, I have been strict about being gluten free - so about a month. I have been eating dairy free and low FODMAP as well because it’s what my stomach allows. Baked fish, potatoes, rice, etc. Whole foods and limited Whole foods. I have continued to lose weight but it has slowed down, but a total of about 15 pounds since I went gluten free. Along with stomach pain, my symptoms included nausea, body and joint pain, a burning sensation throughout my body and heart rate spikes. I still have them but I have them less now. These are the symptoms that led to my doctor appointments and subsequent diagnosis. I also did the DNA screening and was positive. So, at this point, the answer is yes, I have celiac. I have two questions for this group. Any ideas on why my enteropathy was so severe (marsh 3B) and my TtG was so minimal? Is that common? Or are there other things to consider with that combo? And this recovery, still having pain and other symptoms a month later (7 weeks gluten free and 4 weeks after the glutening) normal? I’m going to continue down this path of bland foods and trying to heal but would love to understand the reasons for the long journey. I read so much about people who stop eating gluten and feel amazing. I wish that was my experience but it certainly hasn’t been. Thank you again!
    • knitty kitty
      @Trish G,  I like dates, they have lots if fiber as well.  But what I found helped most was taking Thiamine (in the form Benfotiamine which helps promote intestinal healing), Pyridoxine B 6, Riboflavin B 2, and magnesium, and Omega Three fats. The absorption of nutrients is affected by Celiac disease which damages the intestinal lining of the small intestines where our nutrients are absorbed.  If you have constipation, where your body is rather pushing your food away and not interacting with it, the nutrients in the food are not being released and absorbed.  You can develop deficiencies in all the vitamins and minerals necessary for the body to function properly.   The B vitamins cannot be stored for long, so they must be replenished daily.  Thiamine B 1 stores can run out in as little as three days.  Constipation (or diarrhea or alternating) is one of the first symptoms of thiamine deficiency.  Thiamine needs magnesium, Pyridoxine B 6, and Riboflavin B 2 to make the intestinal tract function.  Thiamine and Niacin make digestive enzymes.  Thiamine provides the energy for nerve impulses to carry messages to the brain and back about digestion.  Thiamine provides the energy for the muscle contractions which move your food through the digestive tract. High calorie meals containing lots of starches and sugars can deplete thiamine stores quickly because more thiamine is required to turn them into energy.   Are you taking any vitamin and mineral supplements?  Correction of malnutrition is very important in Celiac disease.  Thiamine, the other B vitamins and magnesium will help with constipation better than adding more fiber.  What did your nutritionist recommend you take, besides just the fiber? The association between dietary vitamin B1 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11100033/ Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Association between dietary vitamin B6 intake and constipation: a population-based study https://pmc.ncbi.nlm.nih.gov/articles/PMC11584952/
    • knitty kitty
      @kpf, Were you eating ten grams or more of gluten daily in the month preceding your antibody blood tests? TTg IgA antibodies are made in the intestines.  Ten grams of gluten per day for several weeks before testing is required to provoke sufficient antibody production for the antibodies to leave the intestines and enter the blood stream and be measured in blood tests. If you had already gone gluten free or if you had lowered your consumption of gluten before testing, your results will be inaccurate and inconclusive.   See link below on gluten challenge guidelines. Have you had any genetic testing done to see if you carry genes for Celiac disease?  If you don't have genes for Celiac, look elsewhere for a diagnosis.  But if you have Celiac genes, you cannot rule out Celiac disease. You mentioned in another post that you are vegetarian.  Have you been checked for nutritional deficiencies?  The best sources of the eight essential B vitamins are found in meats.  Do you supplement any of the B vitamins as a vegetarian? Deficiency in Thiamine Vitamin B 1 is strongly associated with anemia which can cause false negatives on antibody tests.  Fatigue, numbness or tingling in extremities, difficulty with coordination, headaches and anemia are strongly associated with thiamine deficiency.  Other B vitamins that contribute to those symptoms are Riboflavin B 2, Pyridoxine B 6, Folate B 9 and B12 Cobalamine.  The eight B vitamins all work together with minerals like magnesium and iron.  So your symptoms are indicative of B vitamin deficiencies.  You can develop vitamin and mineral deficiencies just being a vegetarian and not eating good sources of B vitamins like meat.  B vitamin deficiencies are found in Celiac due to the malabsorption of nutrients because the lining of the intestines gets damaged by the antibodies produced in response to gluten.    
    • Trish G
      Thanks, I'm not a big fan of prunes but did add them back after stopping the Benefiber. Hoping for the best while I wait to hear back from Nutritionist for a different fiber supplement.  Thanks again
    • Wheatwacked
      If you were wondering why milk protein bothers you with Celiac Disease.  Commercial dairies supplement the cow feed with wheat, which becomes incorporated in the milk protein. Milk omega 6 to omega 3 ratio: Commercial Dairies: 5:1 Organic Milk: 3:1 Grass fed milk: 1:1
×
×
  • 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.