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Hi everyone 

My 7 year old daughter was juat diagnosed 2 days ago by a celiac blood test (after over 2 years of constant stomach aches, constipation, unexplained anemia and headaches). Should she have a biopsy done as well? I'm on the fence as it can be a little invasive and the bloodwork already indicated that she has the disease. Her GP doesn't think it's needed. We put her on gluten free right away so she has been gluten free for 2 days now. If we decide to to the biopsy, does she need to go back on gluten or will the short time she's been off not make a difference on the biopsy? Part of me wants her to have the biopsy to see what kind of damage is already done. But I don't want to put her through that if it really isn't needed. Does it make a difference for her medically?

Thanks in advance

This is all so new and the more I read the more scary it seems.

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Hi Anne,

Welcome to the forum! :)

You are catching your daughters illness very early, and that is a great advantage.  Many people go a very long time before being diagnosed and the damage tends to build then.  But you are helping her get to a beginning recovery stage very early.  Plus children tend to heal faster than adults so that's plus too.

The usual diagnosis process includes the blood antibodies and then an endoscopy.  but some doctors may diagnose without the endoscopy given symptom improvement and antibody decline after going on the gluten-free diet.  But that way of diagnosing is unusual.

The endoscopy is not often a big issue.although she should have been eating gluten for 2 to 4 weeks before it.  Often there is a delay of several months between the blood antibodies and the endoscopy due to scheduling.  I can tell you that people seem to find it harder to stop gluten and then restart for a few weeks before the endoscopy.  It's easier symptom wise to stay on gluten until all the testing is done.

Celiac disease has  genetic component and other members of your family or your husband's family may have the genes also.  Having the genes makes it possible to develop celiac disease, but it is not definite that the person will get it.

There is lots to learn about eating gluten-free and we are glad to help answer questions.

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https://www.celiac.com/gluten-free/topic/119661-gluten-free-food-alternative-list-2017/

1 hour ago, AnneR said:

Hi everyone 

My 7 year old daughter was juat diagnosed 2 days ago by a celiac blood test (after over 2 years of constant stomach aches, constipation, unexplained anemia and headaches). Should she have a biopsy done as well? I'm on the fence as it can be a little invasive and the bloodwork already indicated that she has the disease. Her GP doesn't think it's needed. We put her on gluten free right away so she has been gluten free for 2 days now. If we decide to to the biopsy, does she need to go back on gluten or will the short time she's been off not make a difference on the biopsy? Part of me wants her to have the biopsy to see what kind of damage is already done. But I don't want to put her through that if it really isn't needed. Does it make a difference for her medically?

Thanks in advance

This is all so new and the more I read the more scary it seems.

Might check out hte Newbie 101 section for tips on cleaning out your kitchen and making it gluten free. Sort of best for the whole house to be gluten-free or she will most likely end up with slips ups constantly....it happens in a shared house, does does not help residue from gluten foods in pots, pans, glasses, and crumbs can set off weeks of heightened antibodies.  I can help point you at list of safe foods and where to get them to make shopping easier. For now you might consider the further testing unless your doctor will put it in her records as celiac now. The diagnosis will be great for school help, medical help, and for proof shall anything happen to be treated properly say in a hospital.
https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/
https://www.celiac.com/gluten-free/topic/119661-gluten-free-food-alternative-list-2017/

 

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Hi Anne,

We did the biopsy with our daughter, and although I know it's awful to put your child through these tests, it feels good to have all the necessary data about what's happening.  Although celiac is the most common cause of the elevated antibodies, it's possible it could be caused by a different autoimmune disease, and you really want to know for sure. 2 days off gluten isn't going to ruin the test, but you should consider putting some gluten back in her diet until you make a definitive decision about the biopsy, since reintroducing it later will be harder. Although we'd rather not have done it, the biopsy wasn't all that bad of an experience for us.

http://www.cureceliacdisease.org/faq/will-the-biopsy-continue-to-be-the-gold-standard-for-diagnosis/

 

Good luck.

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I have the exact same question as you, same situation with my almost 7 year old daughter. So happy to have found this forum. Post what you decide! We have our GI appointment next week and I am scared of putting her under to confirm what we already know to be true from blood tests and symptoms.

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I was in your shoes in January...after a ttg well over 100, there is little doubt of the cause! I got two opinions and both doctors emphasized the importance of the endo because high antibodies are not always due to celiacs and the only true way to know is to biopsy. I was very concerned about the procedure but she did fine and we saw pictures of her inflamed tummy ?

my other issue with it was that I had taken her off of gluten, about 8 weeks at that time. The first dr told me I’d have to put her back on for a month! She left there in tears saying she didn’t want to hurt anymore. Second dr said no problem- she said she could see what she needed to. Plus, we had had two exposures during that eight weeks with the awful reaction I described in another post. We got in for the procedure within a few days from that apppintment and everything was confirmed both visually and biopsy. I know many doctors say you have to be on gluten to get an accurate result, but our experience was that a short time gluten-free did not in any way impact the test.

good luck to you, it’s all so emotional!!

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My two year old had a ttg level of 301 when he was diagnosed. His gi dr said a positive genetic test with those high numbers was sufficient to confirm it was celiac without doing the biopsy. We went that route so that we could start him on a gluten free diet immediately. THe genetic test is expensive so I understand some people would rather do the biopsy to confirm, but I’m so happy we went without the biopsy and directly to a gluten free diet. We saw huge improvements within a week! I couldn’t imagine keeping him eating gluten and watching him suffer. I don’t say that to judge others; it’s just how I felt about our personal situation. We are now two years out from his diagnosis and his recent ttg levels were 16! Yay! I agree with the earlier statement about your whole house going gluten free. I know it can be expensive for your whole family to eat gluten free, but it has helped us so much to keep him safe without constantly worrying and second guessing if we did something wrong. Definitely look into replacing kitchen items to avoid cross contamination. We replaced all our pots, pans, baking supplies, plastic items, cutting boards, etc. We may have gone overboard but our stuff was very old and scratched, so I’m sure there was hidden gluten lurking in those items. I love not having to worry every time I feed my son or he is in the kitchen like I have to do anytime we visit friends and relatives or go out in public. Whether you do the biopsy or genetic test, knowing for sure your daughter has celiac will be great. I’m not sure where you live but public schools in Wisconsin allow you to get a 504 plan to give her special accommodations at school to keep her safe. It’s definitely a tricky transition but after a few months you will have felt like you’ve been doing it forever. I’d be happy to send you some food ideas that my four kids love. Best of luck!!

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