Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Follow-Up Care With Celiac?

kb27

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      21

      Headaches / Migraines and Hypoglycaemia

      @Sarah Grace, Thank you for the update! It's so good to hear from you! I'm glad Thiamine, B Complex and magnesium have helped you. Yes, it's important to take all three together. I had to quit eating cheese and nuts a long time ago because they triggered migraines in me, too. They are high in tyrosine, an amino acid, found also in fermented...
    2. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Related issues

      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted...
    3. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      21

      Headaches / Migraines and Hypoglycaemia

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan...
    4. Scott Adams
      - Scott Adams replied to jessicafreya's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Tamale ingredients

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    5. Wheatwacked
      - Wheatwacked replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      GI DX celiac despite neg serology and no biopsy

      Just a gluten free diet is not enough. Now you have to identify and replenish your malnutrition. Celiac disease is co-morbid with malabsorption syndrome. Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely. It takes...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,146
    • Most Online (within 30 mins)
      7,748
    rmr714
    Newest Member
    rmr714
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      @Sarah Grace,  Thank you for the update!  It's so good to hear from you!  I'm glad Thiamine, B Complex and magnesium have helped you.  Yes, it's important to take all three together.    I had to quit eating cheese and nuts a long time ago because they triggered migraines in me, too.  They are high in tyrosine, an amino acid, found also in fermented foods like sauerkraut and red wine.   I found taking Tryptophan very helpful with migraines.  Tryptophan is a precursor of serotonin and people with migraines are often low in serotonin.  (Don't take tryptophan if you're taking an SSRI.)     This recent study shows tryptophan really helps. The association between dietary tryptophan intake and migraine https://pubmed.ncbi.nlm.nih.gov/31254181/   For immediate respite from a migraine, try smiling REALLY BIG, mouth closed, tongue pressed against roof of mouth, and crinkle up your eyes like you just heard or saw the funniest thing...  This causes an endorphin release in the brain.  Usually it's the funny event, then the endorphin release and then the smile.  Smiling first makes the endorphin center think it missed something and it catches up quickly by releasing endorphins after the big crinkle eyed smile.  Must make crinkly eyes with smile or it won't work.  If you do this too frequently within a short time frame (several hours), you can deplete your endorphins, but you'll make more in a couple of hours, so no worries. Get your thyroid checked, too.  Migraines are also seen in low thyroid function (Hashimoto's or hypothyroidism).  Celiac and thyroid problems go hand in hand.   Vitamin D helps, too.  Low Vitamin D is found in migraine.   I'm so glad you're doing better.  
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      Its been a complete nightmare dealing with all these health issues one thing after another and being told many different things.I am looking for a new primary care physician considering when I told my past doctor of 25 years I was diagnosed before any foods eliminated from my diet and now this year at age 54 no longer able to push considering Im always exhausted, leg pain , stomach,skin and eye issues,high blood pressure to name a few all worsen because I was a  school bus driver and few years until my immune system went to hell and was fired because of it.Im still struggling now, Im sibo positive and been told im not celiac and that I am.I have a hernia and dealing with menopause. Its exhausting and is causing depression because of non medical help. Today I saw another gastrointestinalist and he said everything im feeling doesn't add up to celiac disease since my ITg levels are normal so celiac disease is under control and it's something else. I for got I had Barrett's esophagus diagnosed in 2007 because recent doctors down played it just like my celiac disease. Im currently looking for a pcp in my area because it is affecting me personally and professionally. Im told since celiac looks under control it's IBS and I need to see a therapist to control it. Gastrointestinalist around here think only food consumption and if ITG looks normal its bit celiac disease it's something else. Is this right? This is what im being told. I want medical help but told its IBS.Im feel lost by " medical team "
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      My migraines generally have their onset during the early morning hours as well. Presently, I am under siege with them, having headaches all but two days so far this month. I have looked at all the things reported to be common triggers (foods, sleep patterns, weather patterns, stress, etc.). Every time I think I start to see a pattern it proves not to pan out in the long run. I'm not sure it's any one thing but may, instead, be a combination of things that coalesce at certain times. It's very frustrating. The medication (sumatriptan or "Imatrix") is effective and is the only thing that will quell the pain. NSAIDs, Tylenol, even hydrocodone doesn't touch it. But they only give you 9 does of sumatriptan a month. And it doesn't help that medical science doesn't really know what causes migraines. They know some things about it but the root cause is still a mystery.
    • Scott Adams
      Tamale ingredients

      By Scott Adams · Posted

      These are labeled gluten-free: https://www.amazon.com/Corn-Husks-Tamales-Authentic-Flavorful/dp/B01MDSHUTM/
    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.