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We're 4 For 4...

luvs2eat

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luvs2eat Collaborator
luvs2eat
Posted

Oldest daughter has just been diagnosed. So, I've been gluten-free for 9 years, middle daughter for about 4, youngest daughter for 1 and now oldest's positive bloodwork makes it 4 for 4. At least she lives in Portland where shopping for gluten-free food and eating out is a heckuva lot easier than it is in rural Arkansas! And at least she's been familiar w/ the whole process for a really long time!

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Takala Enthusiast
Takala
Posted

This is going to make your family reunions, holidays, and get togethers .... uhm, so much easier ! ;)

ravenwoodglass Mentor
ravenwoodglass
Posted

We had a four in four also. Celiac is so much more common than doctors have previously thought. It isn't inherited the way most 'diseases' are. Most diseases have a 1 in 4 chance of inheritance. I do so wish I still had the link that explained why. If memory serves it is because it is a haplogroup (sp) rather than a defect. So it doesn't follow the same inheritance pattern as something like, for example, cystic fibrosis.

Philippa Rookie
Philippa
Posted
  On 6/4/2010 at 11:16 AM, ravenwoodglass said:

We had a four in four also. Celiac is so much more common than doctors have previously thought. It isn't inherited the way most 'diseases' are. Most diseases have a 1 in 4 chance of inheritance. I do so wish I still had the link that explained why. If memory serves it is because it is a haplogroup (sp) rather than a defect. So it doesn't follow the same inheritance pattern as something like, for example, cystic fibrosis.

I don't think researchers know all the genes involved in celiac disease yet. Like most autoimmune diseases there are multiple genes involved, which is why it isn't inherited in a simple, predictable way, like cystic fibrosis (which is a single gene defect). With celiac and other autoimmune diseases there are environmental factors as well.

luvs2eat Collaborator
luvs2eat
Posted
  • Author

My doc told me it was common in those of Irish ancestry (me, altho there's no fam history). I've read that it's also common in Jews (their dad, altho there's no fam history there either). The kids were doomed!! Oldest DD is just happy she got to eat gluten the longest.

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    • Russ H
      Confused about my results

      By Russ H · Posted

      There is a predictive model for children on this link. Depends on sex, HLA genes and number of affected close relatives.  The model only goes up to age 12 so it would be interesting to know what the lifetime risk is. https://hputter.shinyapps.io/preventcd/
    • thejayland10
      TTG IgA and IGA elevated mildy

      By thejayland10 · Posted

      That is a very good point I do not know if they truly ever went down. With my nutrient levels all being good, CBC, metabolic panel I assumed everything was fine over the years. Now Im worried this is refractory celiac or something else 
    • RMJ
      TTG IgA and IGA elevated mildy

      By RMJ · Posted

      I don’t know how common it is, but it happens.  Total IgA going up is not necessarily celiac related.  The body can make IgA antibodies against all sort of things.   But if I understand correctly that until recently you haven’t had a celiac blood test since diagnosis, how do you know that your recent blood tests are a mild rise, vs never going down to the normal range? That also can happen, although not too common. Some people with celiac disease do react even to purity protocol certified gluten free oats. Removing oats from your diet for a few months and retesting is probably a good idea.
    • thejayland10
      TTG IgA and IGA elevated mildy

      By thejayland10 · Posted

      interesting I did not know that was that common or could take that long.  When I was diagnosed 15 yrs ago I was told just follow gluten-free diet and follow up with primary care doctor (who never checked celiac panel again). I felt way better and all the major symptoms went away. It wasn't until recently at 25 (14 yrs after diagnosis) that I thought to follow up with a gastro doctor who then did a celiac panel and noted those minor elevations 3 months ago then I got them checked again by another doctor the other week and were showing roughly the same thing.  I am very strict with what I eat and dieitican was maybe thinking it could be oat flour. I do eat a fair amount of processed food but I...
    • RMJ
      TTG IgA and IGA elevated mildy

      By RMJ · Posted

      Do you have any other results from either of the two labs where you’ve been tested recently?  If so, are the newest results from that lab elevated over previous results? It took me 5 years to get all of my antibodies into the normal range. Then 3 years later one went up into the positive range.  I realized that I had started baking with a different brand of gluten free flour.  When I stopped using that flour the level went back to normal.  Has something changed in your diet, environment, activities, medications or other areas where you could possibly be exposed to gluten? 
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