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 Now? Normal Blood Test - But All The Celiacs Symptoms

MommyofTwins

Recommended Posts

MommyofTwins Newbie
MommyofTwins
Posted

My twin 4 year old sons (Feb 17th) had the full panel blood test and everything came back negative for celiacs/gluten intolerance. However, when they eat gluten they have bloated bellies, cramps, and major explosions. Being off gluten, even a couple of days and already they are back to normal. No bloating, no cramps and normal stools.

Should I do anything? Or stick to what I can see as a mom and keep them off gluten.

The blood test was done after the boys had been first off gluten for 3 weeks, then back on it for 10 days. The doctor thought it would be enough time to see appropriate results. I was not sure, although all their symptoms were there.

Anyone have anything similar going on? And if so what are you doing?

thanks,

Eva

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

Celiac.com Sponsor (A8-M):


HiDee Rookie
HiDee
Posted
My twin 4 year old sons (Feb 17th) had the full panel blood test and everything came back negative for celiacs/gluten intolerance. However, when they eat gluten they have bloated bellies, cramps, and major explosions. Being off gluten, even a couple of days and already they are back to normal. No bloating, no cramps and normal stools.

Should I do anything? Or stick to what I can see as a mom and keep them off gluten.

The blood test was done after the boys had been first off gluten for 3 weeks, then back on it for 10 days. The doctor thought it would be enough time to see appropriate results. I was not sure, although all their symptoms were there.

Anyone have anything similar going on? And if so what are you doing?

thanks,

Eva

I think blood tests can sometimes give you a "false negative" (as in there may be celiac but the blood test just didn't detect it) because they are not totally accurate especially in young children. They're not even that accurate in adults, I know someone who had several negative blood tests before finally getting a positive but all the while still having symptoms before it came back positive. I think before it is evident in the blood stream the damage from the disease has already gotten pretty bad. Not that I'm a medical professional or anything but I don't see why the doctor can't give you a diagnosis based on their response to the diet. If it's that clear when they're off gluten, why do more tests? Go with your mommy instincts.

The Kids Folks Apprentice
The Kids Folks
Posted

My son (7) also had a negative blood test. We opted for the diet change and did not get the biopsy. He was on various meds to treat his symptoms. He had such a positive response to the diet, no more meds!! no more gas, bloating, chronic C. He also had slow/no growth in height and weight. He is improving in both areas. He is now a truly happy kid and will be the first to tell you that wheat and gluten is evil!

Our daughter (4), was on relux and GERD medications. She did not have a blood test. We also put her on the gluten-free diet and guess what no more medications. She is feeling much better on the diet!

You truly have to go with your mom instincts - we ended up switching peds, b/c she was upset that we would do the diet that she thought was too difficult, but it was totally okay in her mind to keep our kiddos medicated for years!!!

Good luck and follow your instincts - your kids are lucky to have such a caring mom!

ang1e0251 Contributor
ang1e0251
Posted

Just know there is no test for gluten intolerance. They might not have celiac disease but be intolerant. There is no definate way to know. An endoscopy might prove celiac disease but also could be negative. It's just not a perfect test. In either case, the perscription is the same. gluten-free diet. Do what you as parents feel is best.

bear6954 Apprentice
bear6954
Posted

My son also tested (and still does) negative in blood for celiacs. He is DNA positive with DQ2 and a very positive biopsy. He was 2 when diagnosed and had classic symptoms of celiacs.

Tallforagirl Rookie
Tallforagirl
Posted
The blood test was done after the boys had been first off gluten for 3 weeks, then back on it for 10 days. The doctor thought it would be enough time to see appropriate results. I was not sure, although all their symptoms were there.

I'm not sure that 10 days is long enough for a "gluten challenge". There is debate about how long a challenge should last, but generally it's 4-6 weeks.

It's worth considering asking for a biopsy, just to check everything else is okay. You may well get a diagnosis of celiac disease based on the biopsy results. Even if the biopsy result is negative, there's no reason why you shouldn't place them on a gluten-free diet if it helps.

Children quite frequently experience a "honeymoon period" with lack of celiac disease symptoms in their teens (although you never grow out of the disease), so by pursuing a definitive diagnosis now, you could be doing them a favour later on should they begin to question the need to stay gluten-free.

2boysmama Apprentice
2boysmama
Posted

My older son had negative bloodwork too, but tested positive through EnteroLabs, and also stopped having diarrhea, gas, bloating, stomach aches when we took him off gluten.

He was also tested for food allergies, but didn't test positive for soy allergy. Soy milk gave him HORRIBLE diarrhea. According to his allergist, he "couldn't" be allergic to soy since he didn't test positive for it, yet when I took him off soy milk, he improved.

You know gluten makes your child sick, regardless of what the tests say. That's all the "proof" you need.

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

Celiac.com Sponsor (A8-M):


MommyofTwins Newbie
MommyofTwins
Posted
  • Author

Thank you SO much for all your responses. My husband and I know that the kids are better off with a gluten fre diet. No need for "medical" "proof". The boys are totally back to normal stools and everything - life is good.

thanks again

Eva

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. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      High TTG-IgG and Normal TTG-IgA

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
    2. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      High TTG-IgG and Normal TTG-IgA

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    3. Jsingh
      - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      Hi, My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine...
    4. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin. He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her...
    5. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748
    LMGarrison
    Newest Member
    LMGarrison
    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

    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
×
×
  • 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.