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 Tests


come dance with me

Recommended Posts

come dance with me Enthusiast

My daughter's paediatrician said to do a blood test after a year, it's been longer than that so at an appointment with the GP this morning for something else, I asked her about it. She said it's rediculous and she will not put her through the trauma of a blood test when there is nothing to be gained by it.

What's everyone's opinion on that?


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



Celiac.com Sponsor (A8-M):



Christine0125 Contributor

My daughter's paediatrician said to do a blood test after a year, it's been longer than that so at an appointment with the GP this morning for something else, I asked her about it. She said it's rediculous and she will not put her through the trauma of a blood test when there is nothing to be gained by it.

What's everyone's opinion on that?

Was she low on any vitamins or minerals (iron, vit d, etc.)? If not, I'd probably skip it unless she's having any remaining issues on the diet.

bartfull Rising Star

I think the blood test the pediatrician suggested might be to check for antibodies to see if the diet is working. Some folks feel better but still have high antibodies and are still damaging their gut. And really, how traumatic is a simple blood test? Would your GP refuse to give her vaccinations because THEY are traumatic? I'd take her to the pediatricain for the tests, and then fire your GP!

GottaSki Mentor

I'd vote for full celiac panel plus Vitamins/Minerals Bs, D, K, Iron, Ferritin, Zinc and Copper because these are the annual tests we all get in my family as suggested by our Celiac Doc.

As Bartfull mentioned it is important to know if the antibodies have been reduced and it is also important to see if she is currently absorbing nutrients.

I'd also vote for a new doctor if they insist it is not necessary to monitor your child.

Good Luck :)

eatmeat4good Enthusiast

Just yesterday I got the results of my sons Ttg/Iga test and he was POSITIVE after 2 years of being gluten free! I fully expected the tests to come out negative since we had both been gluten free for two years and we are very strict and only eat out on birthdays at the Outback....that is twice a year. Well, imagine my surprise when the Dr. said he is still producing antibodies and you will have to be more careful! I thought we were careful to the point of paranoia.

Now we have decided to only eat Certified Gluten Free foods because those so called Gluten Free labelled foods must not really be gluten free after all. We do not eat products made on shared lines or in shared facilities, but not all products are labelled for this. I would never have known to make this change if I had not had his blood tested after 2 years. I wish I had done it a year ago. Explain the reason you need it to the Dr. or get a new Dr. who understands that you need to know if your child is producing antibodies or if you are being careful enough.

I am still in shock that after all the precautions and care we have taken with being gluten free that it still is not enough. Wow. Yes, if you can, you should get the follow up tests. Trace gluten is a big issue.

come dance with me Enthusiast

Blood tests are highly traumatic, and if it isn't necessary like vaccinations then I would opt not to have it.

We eat only certified gluten free things, and home grown fruit, veg and herbs, etc.

She was not low on anything else, despite the paed being certain a vegan child would be low on iron and B12, and the couple of times she has eaten gluten (swapped food with kids at school), she has had a very bad reaction to it that lasted days. I don't see how we could be more careful, my house is totally gluten free, as is my mum's house and my brother's house, and she never goes anywhere else.

Anyway, I rang the Coeliac Society in my state and was told by them that it really is optional, she had one after the first year but hasn't had one again since then, and only because she was an adult at the time and had eaten a lifetime of gluten whereas my daughter hasn't, and even before going gluten free, most of our dishes were veges and rice based, she wasn't ever keen on bread, and the vegan cereal she had was also certified gluten and nut free so she hadn't eaten a lot of gluten through her life. It was only when she hit school age she was having savoury muffins in her lunch box, so she didn't think it was necessary, there's nothing we can change anyway.

bartfull Rising Star

I'm sorry but I don't understand what is so traumatic about blood tests. They just draw a vial of blood, right? Or is it somehow different? The last blood test I had was a CBC and I got a good phlebotomist. I didn't even feel any pressure, let alone a sting. I would think after reading EatMeat4Good's post you would want to have her checked to make sure.

I'm not criticizing you, just don't understand.


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

I'm not criticizing you, just don't understand.

Hi Bartfull-

It depends on the child. One of my children is horribly afraid of needles and has a very difficult time with blood tests while his brother has no problem at all. It can also depend on the age of the child along with other factors I suppose.

If the OP's child has a tough time with blood tests, did not have any deficiencies and is already as gluten free as a family can possibly be, I wouldn't push for annual blood test. If the child has little problem with blood tests, it is better to have the data than not have it.

come dance with me Enthusiast

My child has Autism, and finds it traumatic. I'm sorry you don't understand, but the doctor knows her well enough to have been able to make that call. She's known the family for a lot of years.

GottaSki Mentor

My child has Autism, and finds it traumatic. I'm sorry you don't understand, but the doctor knows her well enough to have been able to make that call. She's known the family for a lot of years.

My original recommendation would have been much different had I known tests were tramatic for your child. For me, your original post sounded like it was only the doctor suggesting it ridiculous and traumatic - my apologies for misunderstanding your question - I certainly would not recommend a new doctor in this case and would carefully consider the need for annual testing with a child that finds it traumatic. Perhaps run them if there is a need for other tests at a later date.

Keep up the great work Mom :)

come dance with me Enthusiast

I didn't mention it because I wanted to know what people thought about annual testing, but I finally got onto the Coeliac Society and they said it's up to me, personal choice, if we had a mixed house it would be different, but we have a gluten free house, not a mixed house.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

    2. - Jacki Espo replied to CDFAMILY's topic in Related Issues & Disorders
      5

      Covid caused reoccurrence of DH without eating gluten

    3. - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      1

      New Celiac Mama in My 30s

    4. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,959
    • Most Online (within 30 mins)
      7,748

    jenny44
    Newest Member
    jenny44
    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

    • Scott Adams
      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
×
×
  • 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.