??? about blood tests v/s endoscopy

[Anonymous]

Ok, so my 1st DS had a blood test at 10 months that “indicated celiac” but the upper endoscopy showed no damage although it showed he didn’t have the enzymes to digest lactose and “some complex carbs”. My next DS at around 15 months had a blood test that was positive for both tests that showed a “75% chance of having celiac”. The endoscopy showed no damage, a stool test showed he is malabsorbing carbs. My 3 DS they figure he can’t digest carbs either no tests were done. All three gets diarreah frequently and terribly if they get dairy. 1 DS and 3 DS pukes on and off. 1 DS diognosed with sever reflux at age 5, 3 DS I just was told to avoid spicy foods too! I was told bc the endoscopy did not show damage and the blood tests were positive they do not have celiac but could possibly develope it at sometime. So, is that right?

[Anonymous]

what blood tests did they do? if they did the proper testing, you aren’t going to get a false positive. 3 of my girls have celiac disease. two of them have had endoscopies which did not show damage. the doc did not even bother to scope the 3rd daughter after all 3 girls had positive blood work. kassie gets sick when she eats gluten, molly does not—-but molly’s original blood work was higher than kassie’s—-which would indicate more intestinal damage.

i asked our ped gi about my girls not having any damage, and he said that they probably did with their numbers. celiac damage can be spotty, so if the doc doesn’t happen to biopsy the spots with damage, it looks like their small intestine is clean. also, the small intestine is about 22 ft. long and the scope can only get in about 6 ft, which leaves an awful lot of ft. that cannot be biopsied to look for damage.

sometimes, a celiac will also be lactose intolerant because of the intestinal damage. once the intestinal damage heals the lactose intolerance will go away.

i notice you list 6 different angel babies—-i assume these are miscarriages? if your children have celiac disease, and it sounds like it is a good possibility, chances are that you also have it if you have had that many miscarriages.

we entered a celiac study after our girls were diagnosed and were able to get genetic testing done on all of our family. my husband and i both carry the celiac gene and 8 of my 9 children also carry it—but for some reason, it has only activated in the 3 girls at this point.

do you know what celiac blood tests your doctor ran on your children?

my twins both had reflux problems as teenagers, but after about a year of being gluten free they were able to go off of the PPIs.

the blood tests for celiac are not particularly accurate under the age of 3, so if your child’s test was looking positive at that young of an age it would make me think all the more that it could be a real possibility.

the tests that need to be done are a total IgA serum and a Ttg IgA. Ttg is tissue transglutaminate and there is almost nothing else that can cause a positive Ttg except celiac—–well, graft vrs. host disease can cause it, but you didn’t mention that any of your boys have had transplants…….i think there might have been some other really rare thing that could raise it. basically, if you have a positive Ttg, you have celiac. also, if you have dermatitis herpetiformis, you have celiac disease.

[Anonymous]

I can’t remember with Joshua, but with James both the IgA and the Ttg showed it. The ped GI was so sure there would be damage. I wanted to know what to do abou the blood test results and she said we would have to check for damage every so many years but to just avoid dairy and keep him on a high fat diet with not to many carbs-like Joshua. Now James has gained more weight and doesn’t need so much high fat! :lol

But I would like to figure things out especially for Joshua bc I think something must be causing the reflux at age 5.

For me I’ve always had an easily upset tummy, but no diarreah. My m/c were caused by a luteal phase defect that God has healed! 🙂 Some of DH’s family are bothered by some of the same foods as the boys are.

[Anonymous]

if they are showing positive levels of Ttg, then they have damage—even if your doc is not picking it up with a scope.

an easy way to get a more definite answer would be to put your boys totally gluten free and totally casein and lacatose free—be diligent about all hidden gluten and any possible contamination—-and then have their blood tests run again. if their Ttg levels have dropped, then you have your answer.

i’m not sure what you mean by both the IgA and the Ttg showing it because you have to do a specific IgA test to look for something. in this case, it would be Ttg IgA. i have one child that is IgA deficient, so we have to run IgG tests on him rather than IgA tests.

you don’t have to have diarreah or be skinny to be a celiac. there are plenty of celiacs that are constipated and overweight. the list of possible symptoms that can be caused by celiac is unreal. all 3 of my girls had different symptoms—–one of them had no symptoms.

do you get copies of your children’s blood tests? i would be interested to know what their numbers were and what the lab cut-off results were.

after a number of meltdowns early on, (on my part) we have managed to cook most of the foods we used to cook. we just use different ingredients and some different brands. it is much more inconvenient than it is hard.

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