Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

What Happens At A Follow-up Visit?

Hummingbird4

By Hummingbird4
in Doctors

Recommended Posts

Hummingbird4 Explorer
Hummingbird4
Posted

I was diagnosed celiac at the end of June, at which point my GI doc referred me to a dietician and said I should come back to see him in a month. I put off my follow-up appointment until August 20th because I didn't start the gluten-free diet until a few days ago, due to a planned European vacation and no symptoms.

I did meet with a dietician last week and frankly, I seemed to know more about gluten-free eating than she did. She mostly specializes in diabetes education.

What is this follow-up GI visit for exactly? Just to see how I'm doing and if I have any questions?

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted
What is this follow-up GI visit for exactly? Just to see how I'm doing and if I have any questions?

To help pay for the GI doctor's new yacht. :blink::ph34r:

Seriously, at this point, the visit would likely be as useless as that visit to the dietician.

Have you noticed any positive changes since starting the gluten-free diet?

Hummingbird4 Explorer
Hummingbird4
Posted
  • Author

That's kind of what I was getting at. I'd rather not spend the time and a $20 copay if it's not necessary. I wasn't having symptoms, so I haven't noticed any positive dietary changes at this time. I don't know what I could possibly discuss with the doc that I can't just discuss with you wonderful people! :D And since you're living with it, you probably know more than he does! (no offense to him)

kbtoyssni Contributor
kbtoyssni
Posted

Some people like to do a followup visit to test their antibody levels. This can show how compliant you're being with the diet, especially when you don't have symptoms to "remind" you when you mess up! But I wouldn't do that for a year or so. Unless you're still having symptoms or want to ask a lot of questions, I don't see the need for a follow up.

WW340 Rookie
WW340
Posted

It really depends on the doctor. My GI did lots of blood testing right after my endoscopy. He found I had B-12 deficiency and is treating that. He also requested my bone density scan at my second visit, which showed I had severe osteoporosis.

I see him every 6 mos with routine labs to watch for various problems and deficiencies. It is also an opportunity to ask questions. Sometimes I have questions, and sometimes I don't. I keep a good relationship with my doctor so that I can call him when I have problems.

Recently I had shingles for the 2nd time in 4 mos. I called my GI about it and he spent a lot of time with me on the phone. He also called out some medicine to help me with the pain. Personally, I like having him available.

He also discussed the seriousness of the diagnosis with my husband on our second visit, so I have no problems keeping a gluten free kitchen.

jerseyangel Proficient
jerseyangel
Posted

After diagnosis, I had to go back in 2 months and again 6 months later. Both of those visits consisted of him asking me how my bowels were (his exact words) and telling me to keep doing what I was doing. :blink:

I switched GI's the next year, and at the 2 year mark, he did bloodwork to test for antibodies.

mamabear Explorer
mamabear
Posted

As WW340 said, it depends on the doctor and what you need. We celiacs are not all alike. A smart doc will check mineral and vitamin levels and replace as indicated from the beginning. And then retest for successful results. She/he will also check bone density for baseline results. Antibody levels(if your body can generate them) should be followed in ~6 months. Not just for dietary compliance , but to also assess the need to keep looking for longterm complications of celiac disease(GI lymphoma being the most elusive and worrisome).

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

Celiac.com Sponsor (A8-M):


mirabella Apprentice
mirabella
Posted

URSA MAJOR is probably correct with the yacht!!

Hummingbird4 Explorer
Hummingbird4
Posted
  • Author

I'm thinking that a followup visit in 6 months is probably a better idea. Surely my antibody levels haven't changed much in 3 weeks of being gluten free. I wasn't anemic to begin with (hemoglobin was 12), and I did not have any iron studies or chemistry panels done.

  • 2 weeks later...
Meleficent Rookie
Meleficent
Posted

I am so glad you asked this question! My GI was next to useless, like you the dietician was useless, and now I am swimming alone. I wonder if I need to have a bone density test or have my vitamin/mineral levels checked. But, I have been running into insurance issues as well, so I do not know what to do. I am almost 3 months into my diagnosis with some days better than others......

Thanks for asking and getting some thought out there for me to ponder!

Hummingbird4 Explorer
Hummingbird4
Posted
  • Author

I did end up helping my doc buy his yacht ;) . Went to the followup appointment yesterday and didn't get much out of it. Well, I did get a copy of my lab & pathology reports, so that was useful.

He encouraged me to stick with foods specifically labeled as gluten-free to avoid CC from the manufacturing process, but when I asked him how careful I need to be when eating in a glutenous environment (other people's homes, restaurants, etc.), he said I should be fine so long as I eat gluten-free. In other words, not to worry too much about stray crumbs. :unsure:

He wants me to have follow-up bloodwork in a few months, when I feel healed. Otherwise, there's no reason to go back unless things change.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,203
    • Most Online (within 30 mins)
      7,748
    Milarynn
    Newest Member
    Milarynn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • kopiq
      starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.

      By kopiq · Posted

      I also have food particles left on toiet paper when i wipe and my stool is light yellow not absorbing fats. I urinate about 15 times a day and have very sticky snot,dry throat.
    • kopiq
      starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.

      By kopiq · Posted

      Hi all, I was diagnosed by blood work about 2 months ago and have since went on a strict gluten free diet. I have an endoscopy in January and the GI dr said nothing about staying on gluten for it; hes aware i went no gluten. starting to heal symptoms include: (this is huge) sensation coming back to genitals and when having a bowl movement. everything has been numb for a long time down there including lower belly button area. good size (not abnormal) bowel movements once a day or every two days. small dot size wart just fell off my finger that was there for years. have not broke out with a cold sore this winter (every winter prior for years i would develop a cold sore on my lip) Ongoing issues I don't sweat. not from my hands, or armpits or feet. I do not get butterflys in stomach. my hands have been so dry for years ive been using a crack cream as they crack and bleed very severely in the fall and winter.  (since going gluten free ive not used crack cream but they are still very very dry and chapped/flaky, no sweat or moisture in palms of hands at all. I dont crave food. i have no cravings at all, not for pizza, ice cream , nothing. my cravings are dead. smell of foods kinda make me hungry, but my stomach blocks it. pins needles in feet get weak legs standing up from sitting and dizzy, things almost turn black. i cannot tolerate veggies or vitamins. Iam vitamin D deficient according to my Dr and Ive tried vitamin D pills. they give me a massive migraine for 8 hours and upset my stomach. the heat from the direct sun make me extremely tired to the point of wanting to pass out. again i don't sweat. broccoli gives me a migraine headache as well. mushrooms, bell peppers burn my stomach. fruits burn my stomach, fats (peanut butter, any oil or fat from meats make me sick to my stomach for a couple hours or longer. salt and pepper burns my stomach. all these issues cause pain at my belly button area and expand to the rest of my upper stomach and sides the more i ingest through out the day. I currently eat bland basmati rice, chicken, pork chops (fat trim), boiled russet potatoes no skin for three meals a day. my snacks are gluten free ground buckwheat flour pancakes. (just water, no oil , salt, dairy.) how am i to get vitamins in my system if i cannot tolerate them in my stomach? i mentioned epidermal vitamin patchs but dr said no. why cant i stand the heat from the sun ? why cant i sweat? thanks for any info.                
    • trents
      Celiac Maybe a Possibility?

      By trents · Posted

      Because you have significantly reduced your gluten intake over a considerable amount of time, it is likely that you will test negative on the antibody tests. However, if the $112 for the Quest test is not a burden, it wouldn't hurt to try. It tests for total IGA (to ascertain if you are IGA deficient) and tTG-IGA. If total IGA is deficient, it can result in false negatives in other IGA tests. The tTG-IGA is the single most popular test ordered by physicians. The Quest test is not a complete celiac panel by any means (refer to the linked article above) but it might be a good place to start. Personally, I think you know enough to conclude that you need to get serious about avoiding gluten, whether you have celiac disease or NCGS. Human nature being what it is, however, many people seem to need an official diagnosis of celiac disease in order to stay on the bandwagon. Otherwise, they seem to rationalize cheating on the gluten-free diet. And there is this misconception out there that NCGS is inconvenient and uncomfortable but not harmful so it's okay to cheat. The more we learn about gluten-related disorders the more they seem to not fit into our neat little black and white categories. By the way, celiac disease is not a food allergy. It is classified as an autoimmune disorder.
    • More2Learn
      Celiac Maybe a Possibility?

      By More2Learn · Posted

      These responses are all extremely helpful, ty.  Really good reminder about omega 6.  I also know I'm low in zinc; I took the zinc test where I drank it on a spoon and couldn't taste it.  To that end, I try to eat a lot of oysters.  I do think it would be a good idea to get the blood test.  Two questions: 1-  Is there any reason you wouldn't recommend that I just buy and take a test like this as a first step? 2- I've been somewhat gluten free since ~Jan 2023 (technically organic, gluten free, soy free, light on dairy).  I eat a lot of meat, vegetables, rice -- a common breakfast for me is three eggs and a sausage link, and I can't remember the last time I had a sandwich or bread.  However, because in my mind I didn't think I had an allergy, and I more was doing gluten free to avoid artificially iron-enriched foods, I do make exceptions.  I'll eat breaded calamari.  When my Dad visits, I split mozzarella sticks with him because he loves them so much.  I'll eat the "gluten sensitive" items at a restaurant and if they asked, "is cross contamination ok?",  I always said yes.  Based on that, since I never probably fully eliminated gluten, but it was significantly reduced... is that good enough to take the blood test?  Because the pain in my side gets SO bad (really sometimes I can't function, and I absolutely thought I was dying), I am hesitant to do the gluten challenge.  Would it make sense to take the test, and if it's negative, then consider doing the challenge and seeing if I can deal with eating the bread every day? Thanks again!
    • Yaya
      Muscle Twitching

      By Yaya · Posted

      For me, with osteoporosis, Celiac and more than 1 heart condition, the slower, safer route is preferable.  I'm on 5 meds per day.  Too much of anything can disturb absorption of this or that. Have a Happy Thanksgiving.  I'm gone for a few days.  
×
×
  • Create New...