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

Daughter's Tests Negative

Lynne Billington

Recommended Posts

Lynne Billington Newbie
Lynne Billington
Posted

Well, the doctor informed me today that my 13 yr olds blood tests were normal. Yet we seem to be able to control her fatigue like syndrome with food. Why are the tests so inconclusive so often?

Lynne :angry::blink:

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

Celiac.com Sponsor (A8-M):


KaitiUSA Enthusiast
KaitiUSA
Posted

Which tests did they test for? Did they test for EMA and tTG? Those are very specific for celiac. Also sometimes tests come back negative so if you think it may still be celiac don't rule it out yet and you may want to go to a doctor who is knowledgable with celiac.

You may want to have her thyroid checked. Having your thyroid off can cause all sorts of problems including fatigue and thyroid problems are common with celiac.Good luck :D

MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

Sometimes blood tests can be wrong when they come out negitive.

gf4life Enthusiast
gf4life
Posted
Yet we seem to be able to control her fatigue like syndrome with food.

Had you already tried her on the gluten-free diet before the blood tests?? If you did then that could have messed with the results. One book I read says that when you are gluten-free before the blood tests that it can take anywhere from 3 months to more than a year back on gluten for the damage to be done in the intestines enough to produce positive blood test results. Most doctors still recommend about 2 weeks to a month! That is not enough time for most people to produce positive levels of antibodies in their blood, unless they are so highly sensitive that they would most likely end up hospitalized after one day back on gluten!

I would consider either Enterolab(my first choice), or retesting after a longer time on gluten (with your daughter knowing the effects it will cause on her health and it being her choice).

God bless,

Mariann

KaitiUSA Enthusiast
KaitiUSA
Posted

Yes if you think it may be celiac then I would say Mariann is definitely on the right track with the Enterolab suggestion. That does not require you get back on gluten if you are off of it.

Open Original Shared Link

Here is their website if you are interested :D

Lynne Billington Newbie
Lynne Billington
Posted
  • Author

No, she wasn't gluten free before the tests. Had tests done on the same day we started trying gluten-free. Her dad is gluten-free. Thought it couldn't hurt to try it.

And the results were very interesting. If she was gluten-free all day, she was fine. If she ate gluten, the next day she couldn't get out of bed. So, then another gluten-free day, and she was better the next day -- not perfect but much better. Could attend school at least. Then the second day, she was fine. Ate gluten, back to bed.

Lynne :huh:

CarolynM Newbie
CarolynM
Posted

Her dad is gluten-free - celiac? gluten sensitive? I guess my daughter would be labeled gluten sensitive although we have no doctor diagnosis. She is SOOOO much better gluten-free. I think in her case, we found it too soon for intestinal damage or it was not where the samples were taken from. Maybe you are piecing this together before it is showing up in her blood. If her father has reason to be gluten-free, then the odds are good so does she. Don't dispel what you observe as a mother! I wish I had followed my instincts and gone gluten-free after the bloodwork and my observations after she ate pasta.

Good luck.

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

Celiac.com Sponsor (A8-M):


Lynne Billington Newbie
Lynne Billington
Posted
  • Author

Kaiti - I can't tell you what the tests were. They were the 4 or 5 recommended by CSA in their pamphlet. I showed it to the pediatrician and he kept the pamphlet so I can't name them. I know one was Igg -- as far as I know, they're the top ones that I keep reading about. Wish I could answer your question better.

Lynne <_<

KaitiUSA Enthusiast
KaitiUSA
Posted

IgG is NOT the best one for celiac. IgA is one that is pretty good,EMA and tTG are very specific for celiac. If she is feeling better gluten-free then she could be gluten intolerant and not celiac....and some blood tests can come back negative so she may in fact be celiac. What is her dad? a celiac?? I would recommend an Enterolab(tests for celiac through a stool sample and detects malabsorption, etc. They also can do a gene test and on their website it tells what they test for) or York labs allergy or intolerance testing.

If she feels better on the gluten-free diet though listen to the body it's better then any test or answer that a doctor can give you.

Good luck :D

Meadow Newbie
Meadow
Posted

Hi Lynne,

I've been lurking the board for a few weeks, and I am by no means an expert on celiac issues, but I do have a 13 year old son in the same boat as your daughter. Two years ago, his endocrinologist (he has type 1 diabetes) picked up elevated tTG IgA and antigliadin IGG antibodies -- 28 and 30, respectively -- through a routine screen. His only symptom at the time was consitipation. Based on his lack of symptoms and equivcol lab results, the pediatric GI doc that we were referred to did not recommend an endoscopy. He did repeat the antibody screen 2 more times, and his tTG IGA dropped to "negative" while his antigliaden IgG rose to 40.

Flash forward, two years later, here we are with significant belly pain, nausea and headaches, and we have just learned that he has something called selective IGA deficiency. IGA antibodies protect our mucosal organs, including the GI tract, and low or negative levels render traditional celiac antibody tests useless. His NEW pediatric GI has scheduled an endoscopy a week from Monday, which should provide us with answers.

So, the question is, did your daughter's doctors check her total serum IGA? I'm kind of stunned that ours didn't until just now, and our original GI doc has an outstanding rep.

Good luck,

Meadow

Archived

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

Go to topic listing

  • 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. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      20

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    2. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    3. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      20

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Additional Concerns
      2

      Gluten Transfer from Biodegradable Tableware: What a New Study Found and Why It Matters (+Video)

      Thanks for mentioning this, and here is an older article on the topic:
    5. Scott Adams
      - Scott Adams commented on Scott Adams's article in Gluten-Free Grains and Flours
      18

      Cricket Flour Makes Really Good Gluten-Free Bread

      Your concern about certified gluten-free cricket powder is completely valid, as cross-contamination in both feedstock and processing is a real issue. Currently, the availability of certified gluten-free options is limited, but brands like Chapul and Entomo Farms, which I believe have offered products processed in dedicated facilities and labeled gluten-free...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,542
    • Most Online (within 30 mins)
      7,748
    CC324
    Newest Member
    CC324
    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

    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
    • lmemsm
      Supplements for those Diagnosed with Celiac Disease

      By lmemsm · Posted

      I've used magnesium taurinate and magnesium taurate vitamins.  Didn't notice much of a difference when I used them.
×
×
  • 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.