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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,548
    • Most Online (within 30 mins)
      7,748
    Lunaluv
    Newest Member
    Lunaluv
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.