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Will The Doctor Insist On A Biopsy?
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My husband was diagnosed with Celiacs Disease in February. My 6 year old daughter has no symptoms, however, I asked her pediatrician to test just to put my mind at ease. Unfortunately her results came back positive, they were:

Tissue Transglutamin IgA - 121 (>20 is positive)

Deam Gliadin Pep Abs - 31 (>20 is positive)

She has an appointment with the ped. GI next month. My question is - based on your experience will the doctor pressure me to do a biopsy?

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It really depends on the doctor...I was never biopsied either. Her numbers are quite high, and we know it is genetically linked so with her dad having it, I on't see a need. She has celiac. ((Hugs)) to you mom. That's great you had her checked, you have probably saved her many complications and health problems that could have arisen had she continued as an untreated celiac. Yay Mom!

Best wishes.

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...

She has an appointment with the ped. GI next month. My question is - based on your experience will the doctor pressure me to do a biopsy?

Not sure I understand the 'pressure me' part. It's a pretty easy procedure that 6 yr olds can handle just fine.

Are you thinking of a downside that I'm missing?

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Because generally they have to knock a patient out when they do that test.

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The choice to biopsy or not is really up to you. If your ped will give her the diagnosis she will need for schools to take her need to be gluten free seriously then if you are reluctant to endo her you could choose to forgo it. Talk to your ped about your concerns. If you are going to choose to do the endo do be sure to keep her on gluten until that test is done and make sure that the GI is celiac savvy and will take enough biopsies. Damage can be patchy especially in children.

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Not sure I understand the 'pressure me' part. It's a pretty easy procedure that 6 yr olds can handle just fine.

Are you thinking of a downside that I'm missing?

Sorry, I should have explained better. *I* think it is unnecessary based on the fact that her Dad has it and her blood test results. Also, she is a very high anxiety kid and will probably not handle it well.

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The choice to biopsy or not is really up to you. If your ped will give her the diagnosis she will need for schools to take her need to be gluten free seriously then if you are reluctant to endo her you could choose to forgo it. Talk to your ped about your concerns. If you are going to choose to do the endo do be sure to keep her on gluten until that test is done and make sure that the GI is celiac savvy and will take enough biopsies. Damage can be patchy especially in children.

I am very lucky in regards to her school - it is a small private school and they are familiar with the disease already based on my conversation with her teacher (there are staff members with it). They do not have a lunch program, you have to supply a lunch every day. And the tables are cleaned every day right before they eat lunch. They do not allow treats to celebrate birthdays either.

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I am very lucky in regards to her school - it is a small private school and they are familiar with the disease already based on my conversation with her teacher (there are staff members with it). They do not have a lunch program, you have to supply a lunch every day. And the tables are cleaned every day right before they eat lunch. They do not allow treats to celebrate birthdays either.

there is always college to look forward to, even a public HS, or bigger private school.

There may be issues of accomadation.

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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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