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Biopsy Vs. Blood Test

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I posted somewhere else, but thought maybe I should start a new topic.

I have a 13 month old that is failure to thrive, diarrhea that is now pretty much all the time, sore bottom, not eating well now either. He also has the probable diagnosis of Neurofibromatosis1, which is a genetic disease. SOme blood test they did on him for celiac disease came back negative. I believe it was for wheat. Then his IGg level was elevated. THe GI doctor wants to do a biopsy on him for celiac disease and whatever else I suppose. I really hate to put him through the test. Isn't there another test that is easier on him or can't I just take gluten out of his diet and if he has a positive response then we would know that it was the gluten. He has alot of symptoms of celiac. He has been so bad the past few weeks, that I don't think he can wait for six weeks for the biopsy and keep eating gluten.

We are also vegetarian, so I feel completely overwhelmed with what to feed him. He is also not tolerating dairy AT All! I guess maybe he would be able to tolerate that after a few months of a gluten-free diet.

Anybody out there with a similar experience? What is Enterolab?

THanks for answering my questions.

MOnica

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Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


I do not know about testing and children but I wanted to tell you that it is fully possible to lead a healthy glutenfree life and be veggie or vegan.

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you sound like your going through the same problems i did with my son, he is now 10 but for the first 5 years of his life he was so ill under developed for his age anemic and not thriving very well, he had so many urine infections and used to get sore and so i took him to our g.p who couldn't help he was in and out of hospital (3 different ones) and none of them helped me it even got to the stage that he would stop breathing because his body was exhausted. Then i moved counties to bedfordshire and booked in with a different g.p it was him who suggested celiac disease with my son and to put him on a gluten free diet straight away with out any tests just for a few weeks to see if it made any difference it did his world turned around and after 1 blood test after going back on a normal diet for 3 weeks the hospital suggested him to go back on gluten-free diet and we've done that ever since. the thing is with gluten intolerance it may not show in a blood test at all and that maybe further intrusive testing may need to be done. insist that this be done, it's not pleasent seeing your child go through these tests but its better than seeing them waste away and being in so much discomfort. Only you and your family know your child docs are just the science behind everything so make sure you insist that they help in any way they can and don't take no for a answer it does'nt exsist in the matter of your childs health good luck and i hope they help you and your family. p.s alot of glutfin products are also dairy free and they have a wide range and you can order over the internet hope this helps.

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So was your son tested with a biopsy? I am putting him on a gluten free diet. It has only been two days so far. He has eaten better today though and only went to the bathroom twice, which is good for him. I was just looking up all the ingredients to avoid. Quite overwhelming, but definitely SO worth it to have him not be so miserable all the time. It has gotten bad the last month. He has a biopsy scheduled, but we are out of town for six weeks. If he is doing better on this diet then whether to do the test or not?

Does anyone know how long it takes for the diarrhea to disappear? I know everyone has different symptoms, but if anyone's child sounds like mine does now, how long did it take?

Thanks for all your replies. I am obsessed with finding out what is bothering him. We had an awesome day today though, so I am at least encouraged.

Monica

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Hi,

Sorry to hear about your son, I do hope he starts to feel better.

Our Daughter is 20 months old and was very ill up until last month, when I read an article in the paper about a man with celiac disease. All the symptoms they listed my little girl had. I thought it odd since my doctor had made excuse for her swollen belly saying some kids just have it, and her very low weight (12 pounds at over a year old!) and very short stature, by saying since I am so small she just takes after me.

I then did research on this and decided to just see if her constant diarrhea and vomiting would go away if I took her off gluten. She had a full turn around before the week was up and was actually for once not sick and she was happy, not a whining, grumpy little girl any more. My doctor then finally realized after I took him all the symptoms written on a card that she had and that they all correlated with celiac disease, and when I took her off she didn't have them any more. She had her first ever non diarrhea BM in her whole life. He told me to put her back on for testing to make sure. I was fine with it (although I was getting used to not cleaning up her huge messes with the watery BM's and the vomit every day) We took the kids out for pizza and she ate a ton like she normally would, when I went to get her the next morning out of her crib she was laying there with her eyes all glazed over wheezing ever so slightly. I told her to stand up so I could get her out, (she normally is standing and waiting already) she just cried out. I picked up her limp body which was covered in vomit and diarrhea. I couldn

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