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Lets Talk Tests.

vampella

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vampella Contributor
vampella
Posted

Talk to me about the IGA test. I reguested this from our doctor on Emmah but not until after she was gluten-free. Does this test also have to be done when eatting gluten?

Sorry for the the questions

TIA

Char

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vampella Contributor
vampella
Posted
  • Author

If that's a really stupid question just tell me. I can take it LOL

Lisa Mentor
Lisa
Posted

Char:

The blood test are not one of my most informed areas...

But, I guess that would depend on how long Emma has been gluten free. My blood tests were negative after I was gluten free for two months. I did have a positive biopsy when i was dx'd.

If Emma is improving on the diet, you may want to consider not testing (mine cost $1,500) it is quite costly. The bottom line here is that if she is improving and continuing to thrive, your questions have been answered. But that is ALWAYS a parental choice.

Her picture is very sweet.

chrissy Collaborator
chrissy
Posted

what IgA test did you request? total Iga serum, Ttg Iga, AGA IGA?

vampella Contributor
vampella
Posted
  • Author

Chrissy, I'm not sure. I just told the Dr I want her IGA levels done because I heard something about and IGA diffeciency causing negs on the TTG.

Juliet Newbie
Juliet
Posted

I just posted this link on another topic - Open Original Shared Link . It explains pretty thoroughly what the different tests are, how they interact with each other, and how accurate they are. It also talks about how much gluten and for how long you should be eating it before taking the tests. After reading it, you may or may not want to have the tests done.

I know lots of people on this board were using Enterolab which supposedly doesn't need you to be as recently challenged with gluten and also doesn't require blood. You can read up more about them, too, at their website www.enterolab.com. I was thinking of going through them to get the gene test done on my daughter.

rez Apprentice
rez
Posted

If anything would be positive, I think it would be the tTG or the EMA. According to DR. Peter Green's book, these two are the last two to go negative. My son's tTG was still positive after being gluten free for 3 months. Our doctor, Dr. Guandalini at The University of Chicago Celiac Center, said that the tTG's half themselves every two months. So if you start at 50, at 2 months out it's 25, at 4months around 12....and so on. Do check for an IGA deficiency you need to run a total IGA, I think. I would highly recommend Dr. Green's Book. It's all based on actual proven data. You have to be careful on some of those websites. Anyone can start a blog and it's nice to make sure you're dealing with a medical professional. Not to say there isn't a lot of great info out there, but some of it is just opinion, again which is good too. Good luck!

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happygirl Collaborator
happygirl
Posted

If you are talking about being IgA deficient, the correct test is the total serum IgA. This is not affected by gluten, whereas the other IgA's are.

(I am IgA deficient)

If you are having the other tests done, there are two outcomes:

if she is positive, she definitely has it.

if she is negative, it doesn't mean she doesn't have it, given that she is gluten free.

(Rez, have to agree with you whole heartedly about Dr. Green's book!!!!!!!)

vampella Contributor
vampella
Posted
  • Author

What the name of DR. Peter Green's book, I will call chapters tomorrow and order it.

happygirl Collaborator
happygirl
Posted

See my signature for the book title.

rez Apprentice
rez
Posted

It's called Celiac Disease: A Hidden Epidemic, By Dr. Peter Green. It's hands down the BEST book on the market. It's all fact and very informative. I have read several and thought many were excellent, but as far as accurate, medical information, this is it! I love some of the others for an empathetic feel good read, but when I need the facts, this is where I dig! :)

vampella Contributor
vampella
Posted
  • Author

Thanks Rez & Happy, I ordered the book today and it's already been shipped.

rez Apprentice
rez
Posted

Good for you, let me know what you think! Have a great night!

happygirl Collaborator
happygirl
Posted

Hope you enjoy!

*just a note, this book deals almost exclusively with Celiac, not non-Celiac gluten intolerance. However, many of the chapters would still be applicable (eating gluten-free, dealing with the gluten-free lifestyle, etc).

KristenQld Newbie
KristenQld
Posted

Ladies, does this book provide information on Dermatitus Herpetiformus? If so, I will endeavour to track it down as I'm in Australia.

rez Apprentice
rez
Posted

Yes. There is a whole chapter on DH.

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  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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