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Blood Tests


kalo

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gf4life Enthusiast

Have you taken him off dairy too? Sometimes dairy can delay the healing process. If this is the case and he is still getting contaminated somehow, then it could explain the increase. What did the doctors say about it? I also wanted to say that not everyone is able to fully heal in six months time. Some people take much longer. How are his symptoms? Are they improving?

God bless,

Mariann


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ROYAL BLUE Apprentice

It actually was the GI nurse that gave me the blood test results when I phoned. She said she would check with the Dr. and get him to call me. She also said I should also look at his symptom not just the numbers.

I have not taken him off dairy, I thought he was taking it fine ( how would I know otherwise)?

His bowel movements are normal almost always, his bloated abdomen I think has gotten smaller and he has been growing about 1/8-1/4 inch a month (but maybe this is normal for a 7 yr. old).

I am very careful about cross contamination. If their is a possibility of contamination, I do not buy him that brand of food. It is possible to get contamination from school or ( maybe his dad). But the occasional contamination or accident would that cause his numbers to be twice as high as before he was gluten free?

Tracy

gf4life Enthusiast

Another one of the members here posted earlier this year about her bloodtest numbers being higher, but when they did the biopsy her intestine showed that she was healing. So you never know. Did they do a biopsy on you son? They could tell by repeating the biopsy and comparing the results. Otherwise the only way to tell is to watch the symptoms.

God bless,

Mariann

Guest NitaB

On this subject of testing, I have another question. If I do the gluten-free diet for 3 to 6 months, and decide to be tested again to see about the lesions, can anything other than an endoscopy tell? I have friends asking if I couldn't have a catscan or MRI. I've never had either, and not sure what they can tell. I'm assuming the test needs to be more internal. Can anyone clarify this for me?

I won't do any more blood tests, as they came back negative in the first place! I should be glad to have had the biopsy first! I have to say, my gluten-free days, of which I'm trying to do, are the days I'm feeling good! I'm paying for my mistakes, however!

Thanks again everyone! This board has been so helpful. :)

Nita

gf4life Enthusiast

Baruim x-rays can be done to show intestinal abnormalities, but they do NOT give a good enough view of the intestines to tell if the lesions have gone. Only the endoscopy can show that. There is the new camera pill that is supposed to be good, but without the tissue samples I'm not sure if they could tell if the damage is getting better.

An MRI or a CT scan would not work for this disease.

God bless,

Mariann

kalo Rookie

I don't know what their test shows but Enterolabs says to test with them once a year to see how you are doing. Maybe somone could go into there test and how it would help. Hugs, Carol B

Guest NitaB

Mariann,

I thought correctly on those tests. Others, well meaning, always suggest something else. I will also discuss it with the Dr. on Tues. Thanks for your reply!

Carol,

I'm not going to do Enterolab at this time, beings I've done the biopsy and blood tests. I feel better with a gluten-free diet, so feel I'm on the right track.

How long do you have to wait for your results?

Nita


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kalo Rookie

Hi Nita. I just thought if you wanted to know how your intestines were healing I think they can tell you. As to my results one gal said it took a month. they have been so backlogged it may take longer. I HOPE NOT. I WANT IT NOW! :-( Hugs, Carol B

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      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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