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Tests? Help! Confused!

mom2matt

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mom2matt Newbie
mom2matt
Posted

Hello,

My Name is Kathy and My son has undergone several test, a small Intsetine Biopsy, and now his Gastro ordered a celiac Panel, today when I called to ask for the blood results, she told me it was genetics and takes a week or so to come back. What is she talking about? If she has done the biopsy, then why dose she need blood tsets? My son is 6 and most of his life his BM have been either Runny or Very Hard. Also he has had Reflux sense birth, and now The EGD found 4 ulcers in his stomach.. I don't know much about the Biopsy in his small intestine, other than the doctor told me to take him in for some additional test. Celiac panel.. Shouldn't the Biopsy confirm celiac if it is present? Is their something else that Mimics Celiac? I don't know it's all news to me. Any Answers would be great.. My son is also a Type 1 Diabetic and has asthma. I know the Diabeties is in the same window as celiac, as far as the body attacing it's self, so is this all some how related? Dose my son's symptoms even fit Celiac?

Confused mom,

Kathy

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buffettbride Enthusiast
buffettbride
Posted

My daughter had both the endoscopy (first) and the blood tests (second). Her endoscopy showed signs of villous blunting so they decided to follow up with blood tests. It was actually surprising to the doctor's to find evidence of Celiacs on her biopsy since her symptoms were so mild and somewhat atypical.

The blood tests are important if the endoscopy was considered inconclusive, meaning some indication of Celiac, but not complete villous atrophy (flattening of the villi). Plus, the blood test will give them a baseline of what you're working with. The panel for Celiac came back about a week after the blood was drawn and did take longer than the other blood tests that were run.

Let's say hypothetically the TTG level comes out at 100 on the first test. Your son will go on the gluten-free diet for several months, hopefully with great improvement. You will likely have a follow-up appointment after 3 months or so to see how your son is doing. At that time, they will want to know how he is responding to the gluten-free diet and probably draw more blood to check his TTG levels, among other things. If his levels are 100+, then you would at least have a reference to his initial test of 100. Chances are the number will have gone down hopefully significantly (my daughter was at 100 at the time she was diagnosed and was retested at 7.6 at her 3 month re-check). Endoscopies are not a practical way to recheck Celiac symptoms.

I don't think there is anything that mimics Celiac, but it is something that doctors like to have both the endoscopy and blood tests to confirm. It is a booger of a disease to diagnose, so the more facts you have to back it up, the better.

With all that said, if the blood has been drawn and the endoscopy completed and if YOU feel confident Celiac is what he has, you can safely remove gluten from his diet and help him start feeling better.

mom2matt Newbie
mom2matt
Posted
  • Author
My daughter had both the endoscopy (first) and the blood tests (second). Her endoscopy showed signs of villous blunting so they decided to follow up with blood tests. It was actually surprising to the doctor's to find evidence of Celiacs on her biopsy since her symptoms were so mild and somewhat atypical.

The blood tests are important if the endoscopy was considered inconclusive, meaning some indication of Celiac, but not complete villous atrophy (flattening of the villi). Plus, the blood test will give them a baseline of what you're working with. The panel for Celiac came back about a week after the blood was drawn and did take longer than the other blood tests that were run.

Let's say hypothetically the TTG level comes out at 100 on the first test. Your son will go on the gluten-free diet for several months, hopefully with great improvement. You will likely have a follow-up appointment after 3 months or so to see how your son is doing. At that time, they will want to know how he is responding to the gluten-free diet and probably draw more blood to check his TTG levels, among other things. If his levels are 100+, then you would at least have a reference to his initial test of 100. Chances are the number will have gone down hopefully significantly (my daughter was at 100 at the time she was diagnosed and was retested at 7.6 at her 3 month re-check). Endoscopies are not a practical way to recheck Celiac symptoms.

I don't think there is anything that mimics Celiac, but it is something that doctors like to have both the endoscopy and blood tests to confirm. It is a booger of a disease to diagnose, so the more facts you have to back it up, the better.

With all that said, if the blood has been drawn and the endoscopy completed and if YOU feel confident Celiac is what he has, you can safely remove gluten from his diet and help him start feeling better.

I dont know uch about Celiac to feel ok about a diet, i dont even know which foods to start with.. I guess i'm just stuck.

Thanks for your great info.

buffettbride Enthusiast
buffettbride
Posted

The diet is essentially easy. No gluten means no wheat, no rye, no barley, no oats in any form or in any ingestible product (like Chapstick, etc.). The hardest part is not ingesting gluten when you're someplace away from home.

The easiest way to start would be with basic foods like meat (make sure they are not marinated), fresh or frozen veggies, fruits, rice, and minimal dairy. Avoid anything processed or packaged to start.

Your son's symptoms could be Celiac disease. I'm still not clear if that is what the doctor said it was for sure or if it was only a possibility. Celiac is pretty common for Type 1 diabetics, which you mentioned.

However, you also mentioned ulcers which could simply be the root of your son's digestive problems as well. Either way, a diet of whole foods could likely still benefit him.

hathor Contributor
hathor
Posted

There are some doctors who feel that without particular genes there cannot be celiac and that celiac is the only gluten intolerance there is.

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