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Probabilty My Daughter Has Celiac And Screening Other Family Members?

Brandirae73

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Brandirae73 Newbie
Brandirae73
Posted

Help! I am so frustrated with how long this diagnosis takes! My 4 year old daughter has a life long history of stomach pain and contipation. After spending a year seeing specialist after specialist I starting thinking about glutten allergy. I called my family doctor to ask if she had tested for that (there have been so many tests, I have no idea what we know and don't know). So she ordered the antibody test. This came back "supportive of celiac disease." So next we have to do the dna test. The results were "relative risk for celiac disease - extremely high" She has both DQ8 and DQ2. So it has taken a month from the time I called the dr to get this far. Aren't we pretty dang sure she has celiac disease at this point??? That's what I don't get. My pediatrician won't give me the diagnosis, she wants us to so a pediatric GI doc. That appointment is set for 6 weeks down the road. Meanwhile I am just really frustrated, can anyone tell me what the likelyhood is that she doesn't have celiac disease with these results? I know we need to conitue to feed her glutten in the meantime incase the GI Dr wants to do a biopsy to confirm diagnosis, but O feel like I am poisoning my child everytime I make her a sandwich. Another issue I have is that I have 5 children, 1 has adhd, is very thin, and I have always thought had bad color (dark circles under his eyes and pale), and myself who have had suspicious symptoms all my life (cronic anemia, low blood sugar, diarhea, stomach pain and ulcers). My family doctor doesn't want to screen any of us untill after my 4 year old sees the specialist. Should I insist we start the process because it takes so long, or is she right, it's a waste until we have definative diagnosis in 1 of us?

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CDFAMILY Rookie
CDFAMILY
Posted

With your daughter having 2 Celiac genes, that means you have at least one celiac gene and your husband also has at least one Celiac gene. You only need one Celiac gene to have Celiac Disease. You do not need any of the Celiac genes to have Gluten Sensitivity.

So to the question of should you wait for daughters diagnosis before you start the process of getting yourself tested?...absolutely not, especially with a history of anemia, D, stomach pains and ulcers. You are a major canidate for testing right now! And all your children will more than likely receive at least one Celiac gene so they all need to be tested right now too. You do not need to have symptoms to have the damaging effects of Celiac Disease.

If your daughter had positive tTG antibodies then most researchers say you do not need the biopsy but many gastros still want to do a biopsy. I was biopsy positive but my doctor did not require it for my children with high positive tTG's.

If you truly want a biopsy, maybe you could call the gastro and tell them if you can not get an appointment in the next week, you are going to cancel the appt and put your daughter on a gluten free diet because she is in such pain...that might get you moved up??? and maybe not????

I hope this helps a little

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