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Follow-Up Care With Celiac?

kb27

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kb27 Apprentice
kb27
Posted

My son was recently diagnosed with celiac with positive bloodwork and biopsy. His biopsy was one month ago. We missed the call from the doctor's office with the test results and ended up hearing the biopsy results from the after-hours nurse over the weekend who basically called to say "he needs to be on a gluten-free diet. The test results were "as expected"."

We requested a follow-up appt with a nutritionist as well as info on how much damage there was, how long it takes to heal, what kind of follow-up care he needs, can we get a note from the doctor for the school nurse, etc.

In the past month I have been unable to talk with anyone who can answer our questions. The only piece of info that passed through was the request for a nutritionist whom we will see next week.

My question is... does he need follow-up care? When? He has a primary doctor, who referred him to a pediatric hematologist (he was anemic), who referred him to a pediatric GI. With whom do we need to follow-up? I assume we need to recheck his antibody levels at some point? Should I just go through his primary Dr for all of this? He will be seeing the hematologist again at some point to track his iron levels and hopefully get him off supplements - should we have her check his antibodies? I'm feeling rather scattered to the winds right now.

Maybe some time in the next month I'll manage to talk with someone at the GI's office who can answer questions, but it's looking unlikely. I did put in an official request for his medical records, so at least I'll get the test results.

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mamaupupup Contributor
mamaupupup
Posted

Hi there!

Wow this is frustrating! We are about to do our twins' endoscopies at CHLA with Dr. Pietzak (ped. GI/Celiac specialist/researcher) next week. Here's what she has outlined for us:

- Endoscopies next week

- Two weeks later an hour appointment per child to discuss management

- Multiple re-checks (I don't know what that means yet)

- Annual appointments after that

We finally have a doctor who is paying attention...after three years of trying to find the right person. (Three pediatricians and our local ped. GI were dismissive and simply not interested in the gluten-free "fad"). I as a mother feel so much better that we've found a physician who is exceptionally interested in figuring out the Celiac puzzle.

It sounds like you have a solid diagnosis. Perhaps you can now find a physician who is keenly interested in your son's case. I found Dr. Pietzak after calling Linda Steele at City of Hope in Los Angeles. They are doing a Celiac study. Their phone number is 800-844-0049. Linda is very kind and might know of someone in your area who is a great practitioner/researcher focused on Celiac.

Thinking of you!

kb27 Apprentice
kb27
Posted
  • Author

Hi there!

Wow this is frustrating! We are about to do our twins' endoscopies at CHLA with Dr. Pietzak (ped. GI/Celiac specialist/researcher) next week. Here's what she has outlined for us:

- Endoscopies next week

- Two weeks later an hour appointment per child to discuss management

- Multiple re-checks (I don't know what that means yet)

- Annual appointments after that

We finally have a doctor who is paying attention...after three years of trying to find the right person. (Three pediatricians and our local ped. GI were dismissive and simply not interested in the gluten-free "fad"). I as a mother feel so much better that we've found a physician who is exceptionally interested in figuring out the Celiac puzzle.

It sounds like you have a solid diagnosis. Perhaps you can now find a physician who is keenly interested in your son's case. I found Dr. Pietzak after calling Linda Steele at City of Hope in Los Angeles. They are doing a Celiac study. Their phone number is 800-844-0049. Linda is very kind and might know of someone in your area who is a great practitioner/researcher focused on Celiac.

Thinking of you!

Thanks for your reply and your timeline! An hour appt to discuss the next steps sounds like heaven! I actually like my son's primary care physician - he was the one who kept insisting something was wrong with his iron levels and that we did need to keep after it and figure it out. He's the one who referred us to the specialists. It's just so dang hard to get ahold of the specialists and actually get questions answered from them now that we have results. It's kind of like we should be good to go, now that we have a diagnosis.

I appreciate the contact info, too - perhaps I will give them a call also.

mamaupupup Contributor
mamaupupup
Posted

:) I'm so glad to hear your primary doctor was on this! That's great! I'd call him/her tomorrow and see if he/she has a report and can fill you in!

I will do my best to follow up with you later this week: I'm going to ask an adult friend who is Celiac and I'll also ask our cousins (parents of the two) what they've had for follow up.

If it helps, I have started a checklist for myself:

- Get diagnosis in writing

- Personally send diagnosis to all doctors, dentists, and pharmacies to have on file

- Meet with nutritionist (include kids/DH/my mom)

- Clear gluten out of house/cars/emergency kits

- Inform/educate family/close friends/babysitters/school/camp/afterschool activities

- Meet with school nurse to develop 504 plan

- Read "Our Celiac Kids" book

You are being a great Mom! Keep it up! And I hope your son is feeling better!

kb27 Apprentice
kb27
Posted
  • Author

:) I'm so glad to hear your primary doctor was on this! That's great! I'd call him/her tomorrow and see if he/she has a report and can fill you in!

I will do my best to follow up with you later this week: I'm going to ask an adult friend who is Celiac and I'll also ask our cousins (parents of the two) what they've had for follow up.

If it helps, I have started a checklist for myself:

- Get diagnosis in writing

- Personally send diagnosis to all doctors, dentists, and pharmacies to have on file

- Meet with nutritionist (include kids/DH/my mom)

- Clear gluten out of house/cars/emergency kits

- Inform/educate family/close friends/babysitters/school/camp/afterschool activities

- Meet with school nurse to develop 504 plan

- Read "Our Celiac Kids" book

You are being a great Mom! Keep it up! And I hope your son is feeling better!

I think our checklist is the same (except for the "Our Celiac Kids" book, which I hadn't heard of yet). I'm just amazed that step #1 is so hard. We have a diagnosis, with bloodwork and biopsy. It shouldn't be so hard to get it on paper.

But the house is cleaned out, the myriad of after-school and in-school programs have been informed, and we will go talk with the school nurse once I have that diagnosis on paper to put in his file.

Good luck with your kids' endoscopies next week!

mamaupupup Contributor
mamaupupup
Posted

Thank you! I'd love to know what you did to clean out the house! Beyond ridding the house of gluten-foods and playdoh, what kitchen utensiles, etc. did you replace? What did you wash?

:)

kb27 Apprentice
kb27
Posted
  • Author

Thank you! I'd love to know what you did to clean out the house! Beyond ridding the house of gluten-foods and playdoh, what kitchen utensiles, etc. did you replace? What did you wash?

:)

We cleaned the kitchen top to bottom, and scrubbed out things we've never cleaned before. So far, the only things we got rid of (other than food) were the rubbermaid containers that held my flours for the past 15 years and our wooden rolling pin. We even kept our toaster oven, although it has been cleaned out thoroughly now. Frankly, my kitchen has never been so clean!

We still have playdoh in the house - it's the one thing that has gluten that we didn't get rid of. My son is 8, so he knows how to wash his hands thoroughly, although maybe we should be more careful about scrubbing the table several times when the boys are done. It hasn't come up since we switched to gluten-free.

We have an appt with a nutritionist this Friday who has a lot of celiac experience. I've heard so many mixed reviews on what to get rid of (in terms of baking sheets, cutting boards, etc.) that I wanted to wait and talk with her first. And if we find that my son's antibody levels don't drop, then I guess we do another round of purging instead of cleaning.

Our family decided to go completely gluten-free at home, although some people keep a mixed kitchen. With little kids who generate thousands of crumbs a minute, it has helped my peace of mind to not have to be paranoid about everything.

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mamaupupup Contributor
mamaupupup
Posted

Hi KB--I found a great article in the current LIVING WITHOUT magazine (April/May 2012)!!! Page 19 has a great set of paragraphs on "What types of tests do I need once diagnosed and How often do I need follow-up tests and appointments?"

I'm hoping you can get your hands on it before seeing the nutritionist on Friday! If not, I'll try to write a synopsis for you!!!

Thanks for the help on what you did on cleaning out...we too will have a gluten-free house--two kids with celiac disease and lots of people in and out (Grandma, Aunt/Uncle, babysitters...). I want everyone to know that everything in the house is safe to give the girls!

Let me know if you find the article!

Cheers!

kb27 Apprentice
kb27
Posted
  • Author

Hi KB--I found a great article in the current LIVING WITHOUT magazine (April/May 2012)!!! Page 19 has a great set of paragraphs on "What types of tests do I need once diagnosed and How often do I need follow-up tests and appointments?"

I'm hoping you can get your hands on it before seeing the nutritionist on Friday! If not, I'll try to write a synopsis for you!!!

Thanks for the help on what you did on cleaning out...we too will have a gluten-free house--two kids with celiac disease and lots of people in and out (Grandma, Aunt/Uncle, babysitters...). I want everyone to know that everything in the house is safe to give the girls!

Let me know if you find the article!

Cheers!

Thanks for the tip. I don't think I can pick up a copy by Friday, but I can get a copy this weekend.

mamaupupup Contributor
mamaupupup
Posted

Hi there,

Here's the quick version:

After positive celiac disease diagnosis:

- Test thyroid function (tsh levels)

- Blood tests for nutritional deficiencies: B12, D, "macro" minerals including calcium, sodium, potassium and trace nutrients including iron, ferritin, zinc and copper

- Adults: do a bone density test

At one year mark and annually

- Retest celiac disease antibody levels

- Ferritin

- B12

- Thyroid

- Vit D

Good luck! Keep us posted!

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