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Do My Other Daughters Need To Be Tested?

dandelionmom

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dandelionmom Enthusiast
dandelionmom
Posted

My 3 year old was just diagnosed with Celiac Disease. Her sisters (6 y/o and 11 m/o) don't seem to have any symptoms. Should I still have them tested?

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2Boys4Me Enthusiast
2Boys4Me
Posted

Yes. It's customary to have all first degree relatives tested upon diagnosis of celiac. The only one in our family who is celiac didn't appear to have any symptoms. He was anemic and that ultimately led to his diagnosis.

lovegrov Collaborator
lovegrov
Posted

All first degree relatives should be tested but the 11-month-old is too young now. Maybe when she's two. BTW, that means you and the dad should be tested.

richard

happygirl Collaborator
happygirl
Posted

Agree with Richard. All Celiac experts agree that all first degree relatives should be tested.

And to add to that, even if all family members test negative now, it doesn't mean that the negative test means they'll always be negative. You can "get" Celiac at any age, so it may be worth re-testing periodically, even without symptoms, and most certainly re-test if symptoms. Many Celiacs are "silent" Celiacs, meaning they are asymptomatic, and still have the Celiac autoimmune reaction.

ptkds Community Regular
ptkds
Posted

I agree w/ everyone else. When my toddler was diagnosed, I had my older 2 dd's tested. I was convinced that my oldest dd had Celiac and that DD#2 didn't, but it was the other way around. DD#1 was fine, DD#2 tested positive. But you may want to wait a while to test the 11 mo, and you and dh need to be tested. I tested positive after my dd's diagnosis.

ptkds

Kibbie Contributor
Kibbie
Posted
My 3 year old was just diagnosed with Celiac Disease. Her sisters (6 y/o and 11 m/o) don't seem to have any symptoms. Should I still have them tested?

Though we have no other children (as of yet) I have already spoken to my pediatrician about testing all future children. Because our insurance covers the genetic testing in full we are choosing to go that route initially. What we do from there will depend on what we find out. Either way our home is staying gluten free.

I also want to add that both my husband and I had our bloodwork done right after our daughter was diagnosed. Neither of us have symptoms and both tested negative (for now). Initially we were planning to have our blood work done each year but we are also going the genetic testing route.

I'm convinced I have both genes... because my grandfather was just diagnosed with Celiac Disease. We'll see in a few weeks :)

chrissy Collaborator
chrissy
Posted

we were suspecting celiac in one of our girls----i tested the family since we had met our 100% coverage and i knew it was genetic---and we discovered 3 of the girls had celiac. one of them did not have any obvious symptoms, but her Ttg levels were higher than the one that had the most "classic" symptoms---and we weren't suspecting celiac in the one with the classic symptoms!!

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mother2gf3 Newbie
mother2gf3
Posted
I agree w/ everyone else. When my toddler was diagnosed, I had my older 2 dd's tested. I was convinced that my oldest dd had Celiac and that DD#2 didn't, but it was the other way around. DD#1 was fine, DD#2 tested positive. But you may want to wait a while to test the 11 mo, and you and dh need to be tested. I tested positive after my dd's diagnosis.

ptkds

mother2gf3 Newbie
mother2gf3
Posted

ooops on the Quote, I hit the wrong button, although I do agree. My son age 6 had very severe symptoms of celiac, He was confirmed pos for celiac disease. Dr. said all family should be tested. Found out 3 of my 4 kids have it ages 2,4 and 6 . All confirmed with biopsy and blood. Dad and I are neg. I would have never thought my 4 year old. She had none of the symptoms my other 2 had.

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    • 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
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      By trents · Posted

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