Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

6-Month Follow Up Test Results
0

4 posts in this topic

We just received the 6-month follow-up bloodwork results for my 8.5 year old son and I must say I am so relieved because they are normal. He was diagnosed via bloodwork and intestinal biopsy in August 2012, and at the time his TTG IGA was 66 (ref range <=19), his TTG IGG was 14 (which was a high normal, ref range <=19), and his total IGA was 143 (ref range 29-162). Recent bloodwork revealed that his TTG IGA is now 5, his TTG IGG is also 5 and his total IGA is 142. This is such a relief to my husband and I because his only truly noticeable symptom has been lack of growth and although we are extremely diligent about cross-contamination and following the gluten-free framework we had no way of knowing if what we were doing was working!

While we received the bloodwork results, we have his actual follow-up appointment with the GI next Wednesday so I have a million questions that haven't been answered. Can I assume that since his results are normal that his intestines are healed? Does he need a follow up biopsy to confirm? Does anyone know if the bloodwork results are cumulative over a specific time period or are they more indicative of recent changes?

He has yet to show significant growth, but he was also diagnosed with growth hormone deficiency in November and started growth hormone therapy about three weeks ago. I am hoping that we will see a significant growth spurt now that it appears we are on track with the gluten-free diet. Also, my husband and I virtually banned most processed items that we knew did not have gluten ingredients but were processed on shared equipment, would it be safe to try to incorporate some of these items into his diet to gauge his reaction? There are a few things that he really misses, such as a basil pesto tilapia that we found at Costco that didn't have gluten ingredients but was processed on lines with breaded fish. We have a shared household and while he has his own separate toaster, colander, and utensils, and all of our dinners are completely gluten free can I assume that he is not super sensitive to gluten (or should I make no assumptions)?

Any other specific items I should be sure to ask his GI doctor at his appointment?

I should also mention that his iron and calcium were checked in August and they were both normal and the doctor ordered a check of his Vitamin D when the current celiac panel was ordered and it was also normal although a low normal. It was 24 (ref range 20-100). He currently takes two gummy vites a day and two omega 3 fish oil gummies a day as well.

Thanks so much for your knowledge and support, while I do not post often, I do read many of the posts in this forum and the wealth of information available has made this journey more tolerable! :D

0

Share this post


Link to post
Share on other sites


Ads by Google:

I believe the normal blood tests mean that no autoimmune reaction is happening . . . not necessarily that everything has healed. My son took a full year to have normal blood results. The doctor was not overly concerned - she said it is different for everyone. We just went in for our 2 year check-up and his numbers are still good. She did run tests for vitamin deficiencies and thyroid problems but there was no mention of repeating the biopsy. I imagine if he is still not growing they might want to check again? My guy shot up 3 inches in the first month of being gluten free.

Strangely, my son was still having symptoms even though we were super careful. (no eating out, no processed food, etc.) Over a year we were still trying to figure out what we were doing wrong. He still felt sick, had joint pain, no energy. When his 1 year blood tests came back normal, we started looking elsewhere. Turns out the poor kid had Lyme Disease! Now that it has been treated, we are wondering if we need to be as careful as we have been. The doctor said, be a careful as you NEED to be . . . it is easy for us to experiment because he gets a stomach ache fairly quickly after being exposed. Not sure how you would tell if your child does not have many symptoms.

Cara

0

Share this post


Link to post
Share on other sites

Wonderful news about the test results. My daughter grew around 4 inches on her first year of growth hormone injections and this was prior to going gluten free.

Kristy

0

Share this post


Link to post
Share on other sites

My daughter had her 6 month follow up a few days ago! Her ttg went from 78 to 10 (<20 is negative), she tested negative on endomysial antibody (she was 4 times positive 6 months ago), her vitamin D was low 6 months ago at 27 and is now 52! She has gained 6 lbs total, but only about an inch (her growth was not affected though before). Joint pain gone.

I would raise the amount of viamin D you are giving- 24 is low! Ideal is 50-60. I give my 8.5 year old 2000 units a day and her levels are now beautiful.

Glad to hear great news!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,592
    • Total Posts
      918,285
  • Topics

  • Posts

    • celiac disease is psychosomatic
      I called this doctor's office again to inquire if my medical records have been corrected. When I called to amend my records because there was inaccurate information, the staff member told me that I need to write my complaint in email to doctor. So, that's  what I did. The doctor wrote things I said that I didn't say, which changed the meaning of what I said so I wanted to correct that. I talked to a different staff member today who irritated me in the past by saying things she was going to do which she never did. Her tone of voice is condescending and argumentative like she refuses to help you or that's probably what makes me feel irate. Today she said the doctor wasn't going to commit fraud by writing something I told her to write. I don't feel irate when I talk to the other staff member who answers the phone. Anyway, this staff member said she printed my email for the doctor to read, and she'll reply when she wants to reply (never). I said that it's not the doctor's choice to choose whether or not to correct inaccurate information in medical records. I said I think by law, it must be done so if the doctor continues to ignore my request to correct inaccurate information, then I should probably file a medical complaint somewhere. Finally, the doctor called me back. She asked what was inaccurate when I said I wanted to correct the incorrect information. Then, I asked if she read my email. She said she did not have time to read patient STORIES. I said a good doctor would make the time to read a request to correct inaccurate information in a patient's medical record. Then, she said I'm sick to keep writing letters to her. I said I only wrote one email to her and it was because a staff member said that is how to amend the inaccurate information. She added that if I really had physical symptoms, I would not have been able to get a college degree or write letters to her. Although I explained to her during my consult that I took online classes and did homework in bed with lots of breaks, she thinks I must be pretending to have symptoms. I also explained during my consult that half of my dizziness and migraines are gone since being on a gluten-free diet. Yes, this makes sense why her office makes me feel so irate! I ended the call by asking if she was going to correct the inaccurate in my medical records. She kept rambling on how only sick people keep writing letters to doctor. Again, I told her I only wrtote one email to her and that's because her staff member told me to correct inaccurate information in record. The staff member recommended this instead of filling out a record amendment form, which I don't think they have. She said file a complaint like it was a joke. Since my neurologist referred me to her when I inquired about help for my memory problems, I'm afraid she will tell him negative things about me. Her office is just across the hall from his. Doctors are more likely to take the word of another doctor over a patient. In contrast to this doctor, my neurologist is a real competent doctor. Do you ever think that sometimes doctors are crazy, but they get away with making others think it's the patient who is crazy because they are more powerful? This doctor is a neuropsychiatrist. I will never see a neuropsychiatrist again due to this bad experience.  My appointment with the neurologist is in another week. I don't know if I should briefly mention my bad experience with this doctor so he won't believe her if she tells him that I am faking my symptoms. It would be like I was faking my whole life if I was faking my symptoms. Maybe I could say something like the brain testing wasn't very helpful with that doctor since she assumed my symptoms were all in my head  because I graduate from high school and obtained a college degree in the past. I also told her during my consult that I received average grades in high school because I often went straight to bed after school not having chance to do homework. This feels like abuse or abuse of power from the doctor. I wish I recorded the phone conversation with this doctor calling me names.
    • Nature's Bounty Protein & Vitamin Shake Mix
      Hello to all -this is my first entry! I am checking with everyone to see if they have been having a reaction to the Nature's Bounty Protein & Vitamin (chocolate) shake mix after drinking it.  When you read the label on the container, it states that it has Oat Fiber in it -but then reading online through their website it shows the ingredients contain "wheat products".  I don't have severe Celiacs but now that I have been gluten-free for 7 years, I notice when things aren't right.  I started (my wife starting giving to me) the Nature's Bounty mix around 4 months ago -but have only recently (within the last month) been experiencing stomach pains after drinking (pretty much immediately -before I am even done with it). Does anyone else have this issue?  Does anyone know specifically if it is NOT gluten-free?  It does not state so on the container or on their website. Thank you for any input you can provide. Pete
    • Gluten-Free Safety Starts Here
      How many of us have suffered from cross contamination? Most celiacs have felt the side effects of getting gluten in their food. If it is not your own kitchen, utensils, pots or pans it can be a bit nerve racking. It is not only extremely unpleasant, but unhealthy to our intestines as well. It can cause damage that can be very detrimental in the long run. View the full article
    • Help!! Testing 3 1/2 year old
      Your son is very young and it is extremely difficult most times to diagnose a young child.  Many do not develop enough damage to trip a blood test for conclusive results until more time has gone by and more damage occurs....which you want to try and avoid.  I would definitely get a second opinion and maybe even schedule an endo.
      If those come back inconclusive, then I would do a strict dietary trial to see if his symptoms get better or go away.  Include the gene testing also for purposes of ruling the genetics for it out. What caught my attention were his symptoms.  Those are very specific to Celiac, or can be.  Mouth sores, abdominal complaints and skin rashes.  I had canker sores as a kid and stomach issues but no one was looking for Celiac back then and there were no blood tests. So....I ended up going to the age of 46 before I was diagnosed with Celiac, not to mention the 3 other AI diseases I acquired along the way. That should not happen to anyone. If his symptoms go away or improve greatly, then document this and take it back to a doctor for his record. The diet is not hard to do but it is not convenient. I would say a dietary trial as a last resort is important because undiagnosed Celiac can really take it's toll on people and diagnosing or ruling it out in kids can be especially challenging.
    • Refractory Celiac Patient Successfully Treated With Mesenchymal Stem Cell Infusions
      For the first time, doctors have successfully treated refractory celiac disease using stem cell infusions. View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,690
    • Most Online
      1,763

    Newest Member
    jilord
    Joined