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

Still Waiting For 2nd Blood Test Results...fingers Crossed


vampella

Recommended Posts

vampella Contributor

What I wanted to know is more information of testing and the inaccuracy in children.

My ped keeps saying here in manitoba we use the TTG and it's the most sensitive test going. I called him on it once and thats what he said. I know this is untrue but would like more info so I can throw it at him when Emmah goes back for her weekly height and weight in a week.

I haven't even told him that she is gluten-free, I am waiting until her appointment and if she's gained weight I will be like and that gain/staying the same is all because she is gluten free.

I would like to do entrolab testing they got back to me yesterday about cost and shipping to canada. it 369+ 20.00 for shipping outside of the us and then i have to ship it back which she said would be very pricy. I do have to e-mail her back because I am sure she quoted me in US funds but either way I can't afford that right now. I'll tell the GI when I see him that she is gluten-free and she is NOT doing a biopsy at this time if ever.

Any help with the test amo would be greatly appreciated.

Thanks again

Char


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



Celiac.com Sponsor (A8-M):



AmandaD Community Regular

Hi...I would agree with your doc that the TTG is the most sensitive test going.

My number was only VERY slightly elevated - I mean like by one point - and very few gluten-like systems. My doc saw it, decided to pursue a biopsy and sure enough the biopsy showed the very beginning of Celiac Sprue. She could have totally written it off, but she explained that the TTG is super-good now. They're refining it.

It's called the TTG Iga-antibody test.

I think you should trust your doctor, don't go spending money yet on Enterolab.

AK

HOWEVER, if you've got your child on a gluten-free diet - that test is absolutely not going to come up positive and it's going to skew the results. You have to be careful just putting your child on the diet before really getting an accurate diagnosis - you'll read that same comment in any trustworthy literature on Celiac. I have three kids and I'm pretty knowledgeable about the whole diagnostic process...I have it and my doc at the hospital said there's a good chance one of them could develop it, so we've worked out a plan where we TTG test them every 3 years. This is the recommendation from the Univ of Chicago Celiac Center as well...

vampella Contributor
Hi...I would agree with your doc that the TTG is the most sensitive test going.

My number was only VERY slightly elevated - I mean like by one point - and very few gluten-like systems. My doc saw it, decided to pursue a biopsy and sure enough the biopsy showed the very beginning of Celiac Sprue. She could have totally written it off, but she explained that the TTG is super-good now. They're refining it.

It's called the TTG Iga-antibody test.

I think you should trust your doctor, don't go spending money yet on Enterolab.

AK

HOWEVER, if you've got your child on a gluten-free diet - that test is absolutely not going to come up positive and it's going to skew the results. You have to be careful just putting your child on the diet before really getting an accurate diagnosis - you'll read that same comment in any trustworthy literature on Celiac. I have three kids and I'm pretty knowledgeable about the whole diagnostic process...I have it and my doc at the hospital said there's a good chance one of them could develop it, so we've worked out a plan where we TTG test them every 3 years. This is the recommendation from the Univ of Chicago Celiac Center as well...

I have to say this,your expeience is rare in my experiences.

Even my grandmother who had sever damage from celiac disease was tested NEG 6 times and a biopsy was incon. The only way they found out she was celiac was to break on of her blisters and test the fluid. However that is done. my brother and 2 of his children have celiac disease. first tests neg. I know many children that have tested neg in the past and had celiac, I am not saying it's not accurate in adults but in children the evidence seems to be weighing the unaccurate way.

Trust me I am not going into this knowing nothing, but I will NOt sit buy while my child dies.

Emmah lost over 4 lbs in less than 2 months, she hasn't grown since she was 18 months old and has had D since I can remember going on average of 4 times a day . she will be 4 very soon and is 25 lbs. there are many other symptoms but I think I've explained myself enough.

I decided to do the gluten challenge AFTER her blood was drawn for her second testing. I am awaiting the results now.

I will also say her first test was done before the weight loss and worsining of symptoms and her doctor said her body may not have been ready for it yet.

I was also told by many that if she does great on the diet there is no need to put her back on gluten to have a biopsy done to confirm what I already know. I understand that you have celiac but it seems to be a different playing feild in children, a test that is sensitive for you may not be as sensitive in children.

I am not putting my money on entrolabs yet but one day in the future I may. BUT the only *true* test for celiac disease is the diet ..then, I will have my results in a few months. I would rather spend a million dollars on food for my daughter than see her sick for one more second. I know you understand that.

I got a ton of help and advice from celiac canada, I didn't just jump in.

I love my kids and will do anything to keep them alive and well.

I also want to add that gluten-free will not screw with any other test the GI might want to do so I am doing NO HARM at all. Emmah and i are seeing a dietician(sp? lol) tomorrow to make sure we are doing everything correct.

Char

chrissy Collaborator

i totally agree with amanda! our ped gi seems to be very knowledgeable and up-to-date on his celiac info and he has tested my entire family (even the adults) using the TTg test and a total serum IgA. if a person is IgA deficient, a normal celiac test will not work. enterolab does NOT test for IgA deficientcy. if you have already put your daughter gluten free, testing will not work. it almost sounds like you don't like your doctor. am i reading this wrong? maybe you would be happier with a different doctor?

how old is your daughter? age does make a differenc in the accuracy of the tests.

i haven't seen your other posts-----could you fill me in a little on what your daughter's ymptoms are?

i must have posted the same time as you!!LOL!! you just answered my questions. our ped gi told me that the tests start to be accurate around age 3. sounds like you knew what you were doing by waiting for after the blood draw to start gluten free.

we know that one of our children has the celiac gene, but no disease at this time. he is IgA deficient and has to have specialized testing done. he will be tested on a yearly basis.

our family is involved in a celiac study at this time, so we will know who is genetically susceptible. ( and it saves me alot of money!)

vampella Contributor

So I called the peds office again today to see if the test results were back and the young girl said she found emmah's file on his desk.

she said he could be writing a letter to the specilist again or the results could be back, he will call me in the next few days if the results are in...I AM GOING CRAZY...give me the results already. NOW I wish I wouldn't have called...eeerrr.

chrissy Collaborator

i hate waiting, too!!!

CantEvenEatRice Enthusiast

I originally had bloodwork done on my 20 month old son, but the lab lost most of it. They ran the gliadin antibodies and they were negative. I decided to go with Enterolab and he was positive for both gluten and dairy intolerance. We just had an allergy panel done today and the doctor ordered the transglutamise (spelling?) tests as well. However, my son has been off of gluten for 3 weeks so I know they will not be accurate. At this point, I do not want to put him back on gluten to re-run the tests when I am not sure if we would get a false negative anyhow. My husband and I think it is best if he remains gluten and dairy free. I think positive dietary response is one of the best ways to tell if gluten is the problem. I figure that when my son is older he can have the choice to challenge the gluten if he wants. I went undiagnosed for 25 years and have a lot of damage as a result. I think every family has to decide what is best for them. But you do not need to have an official diagnosis to go gluten free.


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



Celiac.com Sponsor (A8-M):



AmandaD Community Regular
I have to say this,your expeience is rare in my experiences.

Even my grandmother who had sever damage from celiac disease was tested NEG 6 times and a biopsy was incon. The only way they found out she was celiac was to break on of her blisters and test the fluid. However that is done. my brother and 2 of his children have celiac disease. first tests neg. I know many children that have tested neg in the past and had celiac, I am not saying it's not accurate in adults but in children the evidence seems to be weighing the unaccurate way.

Trust me I am not going into this knowing nothing, but I will NOt sit buy while my child dies.

Emmah lost over 4 lbs in less than 2 months, she hasn't grown since she was 18 months old and has had D since I can remember going on average of 4 times a day . she will be 4 very soon and is 25 lbs. there are many other symptoms but I think I've explained myself enough.

I decided to do the gluten challenge AFTER her blood was drawn for her second testing. I am awaiting the results now.

I will also say her first test was done before the weight loss and worsining of symptoms and her doctor said her body may not have been ready for it yet.

I was also told by many that if she does great on the diet there is no need to put her back on gluten to have a biopsy done to confirm what I already know. I understand that you have celiac but it seems to be a different playing feild in children, a test that is sensitive for you may not be as sensitive in children.

I am not putting my money on entrolabs yet but one day in the future I may. BUT the only *true* test for celiac disease is the diet ..then, I will have my results in a few months. I would rather spend a million dollars on food for my daughter than see her sick for one more second. I know you understand that.

I got a ton of help and advice from celiac canada, I didn't just jump in.

I love my kids and will do anything to keep them alive and well.

I also want to add that gluten-free will not screw with any other test the GI might want to do so I am doing NO HARM at all. Emmah and i are seeing a dietician(sp? lol) tomorrow to make sure we are doing everything correct.

Char

Char -

I am certainly not at all suggesting you would harm your child; I do want you to know I understand what it means to be in the throes of worry. It's frustrating and it can be unrelenting, especially when it comes to your children.

However, you meantion that "gluten-free will not screw with any other test the GI might want to do" - that statement is incorrect if you are talking about the TTG test. If your child has been gluten free for a week or two there's a significant chance it will return negative. That's acc. to Celiac literature.

I think you are very smart for pursuing the Celiac avenue with your child, particularly since you said there's a genetic familial link...but I do think you also need to listen carefully to what your doctor says. Not all docs are bad. There are a lot out there that are good and I would really talk with them about your decision to create a gluten-free diet for your child immediately - the doc may have some important advice on that.

AK

vampella Contributor

No,no. Emmah has already had the blood work done. Guess I didn't touch on that point earlier, sorry.

Right now we are just waiting to see what the results are when they come back from the lab. We didn't go gluten free until a week after her blood was drawn for testing.

Char -

I am certainly not at all suggesting you would harm your child; I do want you to know I understand what it means to be in the throes of worry. It's frustrating and it can be unrelenting, especially when it comes to your children.

However, you meantion that "gluten-free will not screw with any other test the GI might want to do" - that statement is incorrect if you are talking about the TTG test. If your child has been gluten free for a week or two there's a significant chance it will return negative. That's acc. to Celiac literature.

I think you are very smart for pursuing the Celiac avenue with your child, particularly since you said there's a genetic familial link...but I do think you also need to listen carefully to what your doctor says. Not all docs are bad. There are a lot out there that are good and I would really talk with them about your decision to create a gluten-free diet for your child immediately - the doc may have some important advice on that.

AK

AmandaD Community Regular
No,no. Emmah has already had the blood work done. Guess I didn't touch on that point earlier, sorry.

Right now we are just waiting to see what the results are when they come back from the lab. We didn't go gluten free until a week after her blood was drawn for testing.

Got it, now that makes sense...

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,765
    • Most Online (within 30 mins)
      7,748

    LisaMarie39475
    Newest Member
    LisaMarie39475
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • lizzie42
      I'm looking for bars or non perishable snacks for my 2 kids. They are 5 and 3. The 3 year old seems sensitive to oats also. We do a lot of long hikes and bike rides. They eat mostly fresh foods but for these rides and hikes we need easy and non perishable. Also that taste good! We do a lot of larabars and freeze dried apples but those are getting old. Any ideas? 
    • knitty kitty
      Oh, @MagsM, Sorry you had that happen with Niacin.  500mg is the maximum amount of Niacin one should take.  Niacin works hand in hand with Thiamine, so a big influx like that can imbalance thiamine if not supplemented at the same time.  All the B vitamins work together in concert.  Niacin in doses at 500 mg or above have been used by doctors to lower triglycerides levels and raise HDL, the good cholesterol.  Pharmaceuticals to do the same thing are more expensive and thus more profitable for physicians. Has your doctor tested you for H. Pylori?  An infection by H. Pylori can be tested for by your doctor.  H. Pylori can cause low tTg IgA results, too.   I would hold off on the microbiome test for now.  Your microbiome is going to change when you go gluten free.  Your microbiome will change when you start taking Thiamine.  Thiamine supplementation influences which microbes grow in the intestines, encouraging beneficial bacteria and getting rid of the bad ones.  Thiamine in the form Benfothiamine promotes intestinal healing, too.  Adopting the Autoimmune Protocol Diet (by Dr. Sarah Ballantyne, a Celiac herself) after diagnosis will also change your microbiome.  This is the best diet to heal and recover, IMO.   If you're going to have more testing done for vitamin deficiencies, don't take vitamin supplements beforehand, otherwise the tests will measure the vitamin supplements in your bloodstream and give false results.  Same thing will happen if you take B vitamin shots.  The supplements you mentioned (Arterosil HP and Vascanox HP) are herbal support and do not contain all eight B vitamins.  There's no harm in taking them, but I prefer a B Complex that contains all the B vitamins in activated forms like Life Extension's Bioactive Complete B Complex.  All the B vitamins work together in concert.  Magnesium is important to supplement as thiamine and magnesium make life sustaining enzymes together.  Do not buy supplements containing Thiamine Mononitrate because it is not biologically active.  It is very hard for the body to utilize.  Most of it (70%) passes out unused.    Yes, my Meniere's disease has not returned.  I was deficient in Vitamin D.  I took high doses of Vitamin D 3 to correct the deficiency quickly.  I also took TTFD (tetrahydrofurfuryl disulfide) which is a form of thiamine different from Benfotiamine.  TTFD can cross the blood brain barrier without a carrier, so it can get into the brain very easily.  TTFD helps the Vagus nerve function.  The Vagus nerve regulates the ears and balance, and also the digestive system.  I like Allithiamine by Ecological Formulas.  I also like Thiamax by Objective Nutrients.  You should have improvements within a hour with TTFD.  TTFD is much stronger, so lower doses will give amazing benefits (50-200 mg).   I hope this helps give you some direction to take on your journey!
    • MagsM
      Thank you so much for this in depth analysis. I am currently taking Vit D3/K2 5000IU daily.i started taking a flushing Niacin but foolishly took a 500mg tab and nearly passed out! I have just ordered a gut microbiome genome test and it will be interesting to see what my current balance of microbes are. After I finish diagnosis I will definitely go gluten free. Diagnosis will inform exactly how strict I’ll need to be regarding cross contamination etc. my focus will be on healing the gut. I have also been focusing on the oral microbiome - cutting out FL and using more natural products as well as daily oil pulling. I read from some of your other forum entries about Benfothiamine and I’ll definitely order that. I’ll make sure my doc orders more detailed vitamin and mineral panel plus total IGA as well as the DGP-IGA and DGP-IGG tests. We will see if I can get the endoscopic biopsy done. Do you think I should request Vitamin B shots to get me started?  My daily vitamin protocol will likely be VitD/K2 5000IU, Benfothiamin 300x2, Niacin (flushing) 50mg working up to 300mg. I also take a EPA/DHA as well as some vascular support (Arterosil HP and Vascanox HP) as well as Magnesium at night. Which B complex brand do you like? I will see what the gut microbiome test comes back with. I’m sure they will try to sell me pre/probiotics and maybe some digestive enzymes. What are you thought on those? I’m curious if you managed to go into full remission from your Ménière’s disease? Thank you so much for your thoughtful insight. I know that building back up my gut health and immune health will help in so many ways as well as protecting me from many other major diseases as I go into my 60s and beyond. 
    • Scott Adams
      You are right! The logo the have on their packages got me confused--it looks like they are less than 20ppm, not certified GF. Thanks for catching that! My brain also zeroed in on this "less than 10ppm" but I should have seen the rest...
    • Wheatwacked
      Zinc glyconate lozenges (Cold Eeze) helps fight off viral respiratory infections by coating the mucous membrane cells to protect them from virus.  Zinc is an antiviral essential mineral. Choline deficieicy can be the cause of Non Alcoholic Fatty Liver Disease.  It is estimated by some experts that less than 10% eat the minimum RDA of around 450 mg.  It has also been connected to gallbladder disease.  Brain fog and high homosystein blood level is an independant indicator of cardiovascular disease. Eggs and red meat are the primary sources.  Three eggs or 10 cups of cooked brocolli a day.  Low vitamin D is a common denominator of autoimmune disease.  Is it a contributing factor or a result? I think that low vitamin D is maybe the main contributing factor.  Low vitamin D allows the immune system to run amuck. I would like to point out the many diagnosed with Celiac Disease went through several misdiagnoses, like gall bladder disease, and were repeatedly tested negative and then one day tested positive. Regardless of your diagnosis, you should avoid gluten, you mention it in your first post : "When I eat gluten I get a lot of mucus with my stool and most of the times it’s quite thin. As soon as I take gluten away from my diet my stool becomes normal". It can take six months to several years to heal completely.  How long I believe is directly related to how quickly you identify deficiencies and correct. Essential to my recovery:  Thiamine, 10,000 IU vitamin D3 a day, maintaining 25(OH)D at 80 ng/dl (200 nmole/L), 600 mcg Liquid Iodine, Phosphatidyl Choline.  And of course: Gluten Free.
×
×
  • Create New...