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Blood Tests

kalo

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gf4life Enthusiast
gf4life
Posted

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
ROYAL BLUE
Posted

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
gf4life
Posted

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
Guest NitaB
Posted

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
gf4life
Posted

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
kalo
Posted
  • Author

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
Guest NitaB
Posted

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
kalo
Posted
  • Author

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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    • knitty kitty
      High DGP-A with normal IGA

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    • captaincrab55
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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