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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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    • knitty kitty
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      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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