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WWYD? Probable Celiac Disease....

post #1 of 4
Thread Starter 

All four of our girls (8,5,3,1) show neumerous signs of CD. I didn't really realize how many until yesterday when I saw an UDI's post on facebook and matched up the symptoms with each one of our girls and myself. I immediatly made Dr. appts for each one of them for later this month (the 22nd) when my oldest 2 are off of school. However now I am wondering if I should wait at all because the more I read on CD the more I feel that it is urgent and should be addressed asap.




Would you wait until the 22nd and carry on with a normal diet unti then?


Would you schedule something immediatly this week?


Would you switch everyone to a strict gluten free diet and see if we all improve without any formal testing? We blood tested our oldest when she was around 4 years old and it was negative however we have talked back and forth with our Ped about scoping her for a definate diagnosis one way or another. I am not too fond of the idea of the scope but I am wondering if we should just do it so we know matter of factly.


Any input would be appreciated!




post #2 of 4

Don't drop the gluten before the test!!!!


Other than that, others with more experience in this area can offer their advice.....

post #3 of 4

Do NOT remove gluten from anyone's diet. I would ask your Dr. to order the blood work now. If it's + they will want to do endoscopy to verify. There is debate about the though and if they are truly necessary (there is a new list of 5 criteria and if you have 4 you are considered +)  Just because your DD was - years ago doesn't mean she isn't + now.  You can convert to + any time if you have the genes.  I know scopes aren't fun With the new criteria (look up Dr. Fassano for the info) you may be able to avoid having to do it.


Again, DO NOT remove gluten from anyones diet.  Please, till you at the very least get the blood work and results.

post #4 of 4

I haven't had to do a scope, they diagnosed me on the new criteria.  And good thing because I did a test run of GF diet for 2 weeks before going in for the general blood test.  Of course it came back negative and I was told I would have to do 12 weeks of gluten diet to get a positive blood test.  There was no way I could do that.  Physically, there was too much pain.  But because I have 4 of the criteria, the doctor said, yup you are celiac.  


Even if the blood test comes back positive, there is not much benefit in doing a scope.  Scopes are not comfortable, I would not want to put my 6 year old daughter through one, much less myself.  There is little benefit and since there is another way to diagnose, or you can go with a gluten intolerance diagnosis (my DD's actual diagnosis), you may want to reconsider doing a scope.  There is little benefit to doing the actual scope unless you are very ill because insurance does not cover costs of your GF food and most medical stuff is covered under other symptoms.  If the blood work is negative, you may still have symptoms of gluten intolerance and still need to be on a GF diet.  I was not celiac *we think* until sometime either just before or after DD's birth but it took 7 years to diagnose.  Unless symptoms are severe enough to warrant attention from a gastro specialist to deal with symptoms (severe cramping, weeks of diahherea, constipation, etc.) and what ended up happening with me is they put me on a medication (Humira) that treats both my rheumatoid arthritis (likely a result of undiagnosed CD) and the effects of CD.  


Do you children have serious signs of vitamin/mineral deficiancy, bouts of severe diaherrea/constipation, and cramps?  Or are they generally healthy at this moment?  In children there is an association with Diabetes type 1 in 20% of CD children and they are just now discovering this link.  Do any of your children have Diabetes type 1?  These are severe cases which require immediate attention.  Does anyone in your family have any auto-immune diseases (diabetes type 1, rheumatoid arthritis, lupus, celiac disease, etc)?  Your doctor may ask you this so you may want to find out if you can.


I'm not a doctor, but this is what I have learned on my journey with CD and RA.

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