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What Made You Have Your Child Tested?

Hopefulmama

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Hopefulmama Apprentice
Hopefulmama
Posted

Do you or someone in your family have Celiac or G/I? Did you think something wasn't right with your child? Did your doctor suggest it? Had you heard of this before your child was diagnosed? Just wondering. Thanks!

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wolfie Enthusiast
wolfie
Posted

My suspected diganosis (my bloodwork was postive, but I went gluten-free before I saw the GI dr and felt so good I wasn't going back on gluten for the endoscopy/biopsy) and DS's behavior. He was being evaluated for ADHD and I asked his Ped to do the Celiac Panel before I would consider putting him on medication. His bloodwork was positive, as was his biopsy and he does have a diagnosis. Incidently, his behavior and grades have improved since going gluten-free.

Annie/NM Apprentice
Annie/NM
Posted

He was 3 and had the big D 5-6 times a day for over a month. After all the other tests came back negative they sent us to GI for Pediatrics. She was a nut and put him on a high fat diet, mentioned Celiacs but never tested him and I thought she did. 6 months later still had the problem, between constipation and D. He refused to eat much of anything, had black circles under his eyes, was really ADHD like and had bruises all over. I took him to a new GI. They repeated all the tests and did a Celiac panel. He was positive and they did the biopsy. Now gluten-free for a year, he is like a new child. He dropped from 100%ile to 50%ile but they didn't really notice since he was still a big boy for his age. He gained 5 pounds when he went gluten-free.

shan Contributor
shan
Posted

my daughter was so ill, her skin had the green look (of course i thought she still looked the prettiest of all the kids at daycare :) ). She hadn't grown in ages and we had already been accused of abusing her! We changed drs and country and she had a celiac panel as routine for any child that has FTT. Her numbers were crazy high,but now 1 year gluten free she is FAT :D

jayhawkmom Enthusiast
jayhawkmom
Posted

My wee one, who was almost 5 at the time, was throwing up every morning. She had "the big D" several times a day, every single day. She was always hunched over, complaining that her tummy hurt.

It took us a while to narrow it down. Her pediatrician could not find anything wrong with her. He sent us to an allergist, who found that she has food allergies, including wheat. We knew of other allergies, but some additional ones were found on top of the ones we were already aware of. Following that, he said her nose looked "gunky" and sent us to an ENT. The ENT assumed her tummy aches were due to the fact that she was swallowing "infected" sinus drainage gunk.

She had her tonsils and adenoids removed, and while she was recovering...and unable to eat solid foods, she felt better than she'd felt in years!!! But, that wasn't the answer we were hoping for, since as soon as she started eating again, she started getting sick again. In the meantime, her allergist HAD run a Celiac panel - and it came back while she was recooping from her tonsillectomy.

She's been gluten-free ever since.

dandelionmom Enthusiast
dandelionmom
Posted

Our little girl was pretty sick. She'd been worrying us for a while but the pediatrician kept dismissing everything "some kids are just anemic, some kids just get rashes, some kids just get sick a lot..." Finally, I requested an appointment to sit down and go over all of my concerns and demand some testing. They tested her for just about everything out there! I had never heard of Celiac Disease before she was diagnosed.

Since her diagnosis, we've learned that I also have Celiac Disease. Oops, guess I wasn't really lactose intolerant all these years. :huh:

jayhawkmom Enthusiast
jayhawkmom
Posted
Since her diagnosis, we've learned that I also have Celiac Disease. Oops, guess I wasn't really lactose intolerant all these years. :huh:

Same thing happened here. Woops.

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cruelshoes Enthusiast
cruelshoes
Posted

We had both of our kids tested immediately after I was diagnosed because they are my first degree relatives. My son had no outward symptoms, except for no growth for a year. His tTg was nearly as high as mine was, and I was almost dead. It really said a lot to me about how outward symptoms don't necessarily correlate to internal damage.

zenmama Newbie
zenmama
Posted

after 5 weeks of diarehha and blood/stool tests with no results or ARNP referred us to a PED GI who tested her for Celiac.

zenmama Newbie
zenmama
Posted

After 5 weeks of diarrha and blood/stool tests with no results or ARNP referred us to a PED GI who tested her for Celiac.

crittermom Enthusiast
crittermom
Posted

My Katharine had THE largest bm's I have ever seen out of a child in my life. I kept saying to my mom I have no idea where this poop is coming from! She also had blood in her stool. The dr thought that she might have a fissure due to the size of her movements. They prescribed suppositories (sp?) but they didn't work. Her bm's were still huge but now they were also turning greyish white. She also would not eat anything and complained of a belly ache constantly. Thank goodness after only 3 visits to the doctor (I know it takes years for some) my doctor said, this may be a long shot but lets do a blood test for Celiac. Her TtG came back at 28. The doctor said, "I know this is a little high but I am not exactly sure what normal is within the range so I am sending you to a GI". That was in June, when he got into the GI Katharine's TtGs were off the charts. Thank goodness our doctor was on the ball, she caught Katharine right as it happened! I love our family doctor she is wonderful!

gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

I was the first one diagnosed in my family. My oldest was tested because she is my child and has other food allergies. My second was tested, begrudgingly by the drs, because of all of her health issues. Turned out the oldest is severly lactose intolerant, but not Celiac for now (No gene test done). The youngest had the gene, was blood tested and biopsied with "inconclusive results". I made her gluten free against the Drs demands and she is a healthy child now, looks so much better, ni longer starving 24/7, growing, gaining weight, no more behavioral issues, no more Big Ds or rashes, etc.

I needed my children officially tested, one because I have the disease and two to eliminate the argument years from now about if they really have the disease. In the end, I still have no medical test proof, but a reaction to gluten happens every time! Looks like I might still hear that argument when they grow up!!!

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
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    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • 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.
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