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Blood Tests
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33 posts in this topic

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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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

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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

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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

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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

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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

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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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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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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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