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New Diagnostic Screening Tool (homekit)

jeanbean

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jeanbean Newbie
jeanbean
Posted

I just happened to come across this website where for $50 you order your own test. Sounds like it might be something new for those who are thinking about getting tested. If this has already been posted, then I apologize (i did a search but nothing came up.)

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gfmolly Contributor
gfmolly
Posted

Has anyone done this test?

nora-n Rookie
nora-n
Posted

we have had this ttg-IgA home test for a few years here in Scandinavia and the UK and possibly other places.

The website says the Canadian version will soon have, but it is not clear, a test for IgA deficiency included (which is much better. Here all labs automatically run the total IgA at the same time, this is why tests at the doctor's office are better than this home test)

I believe labs in canada or the U.S. do not automatically run the total IgA, but here they always do.

so the test kit with the total IGA test included might be better in that case.

One needs to know that celiac is still possible if this test is negative, as a lot of celiacs never test positive on a blood test. There has been a lot of discussion here on the forums (not on this here forum) about the test kit or the web site not stressing that enough.

Ours is about 37 dollars.

nora

norway

ShayFL Enthusiast
ShayFL
Posted

I did one like it about a year ago. There are other manufacturers of this test. Mine cam up NEG. But a following blood draw shows me at the very bottom of the IgA range. I just dont make much of that antibody. I tested POS 6 months ago using IgG and POS with Enterolab.

dally099 Contributor
dally099
Posted

i have ordered a couple of kits, one for myself and one for 3 of my kids as the fourth was allready tested and is negatvie, this unfortunately means for me im back to a glutenous diet, ugh! :( i have never managed to test positive as i was gluten free for months when the doc finally tested me. i would like some kind of formal diagnosis though for my taxes. im am going to timmies for a donut, though, but ugh the itchies and D have allready come back, had the rash on my back allready to, oh well only for a couple of weeks than back to rice for me! ill give my thoughts on the test when i get them, im pleased that they dont cost a fortune!

nora-n Rookie
nora-n
Posted

If you itch and have a rash from gluten, you may have DH, Dermatitis Herpatiformis.

Ifyou get a biopsy done properly, you can get a diagnosis, and that means you are celiac.

Many DH patienst do not have the villi damage, or the genes, but they still are diagnosed officially as celiacs and must avoid gluten totally.

The biopsy must be done on a spot where you never have had the rash, as the IgA ther wise is used up. Also, it must be done during an outbreak.

In DH, there is a different antibody invovled, it is Ttg3 as opposed to ttg2 in celiac.

ttg6 is involvede in glutan ataxia, by the way.

I have not heard of rutine tests for ttg3 or ttg6.

noa

dally099 Contributor
dally099
Posted

yup i have deffenitely figured i have dh as well as gut symptoms, not feeling great today allready, pretty neusous in the morning and my guts arent to happy with this,but i would like to be properly diagnosed, we have other programs up here that you qualify for if you have the diagnosis. still gonna eat some donuts though!

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nora-n Rookie
nora-n
Posted

It might be much easier and quicker to get a DH diagnosis, maybe.

If one gets a DH diagnosis, one is automatically considered celiac, and put on a gluten-free diet.

Here they get the same benefits as celiacs with a positive gut biopsy.

Some DH patients never get the typical gut damage to get jsut a celliac diagnosis, that is why they accept the DH diagnosis alone. But they always send DH patients for a gut biopsy but they keep their diagnosis in spite of negative gut biopsies.

nora

dally099 Contributor
dally099
Posted

one kid down and 2 more to go, my 2 girls so far are negative, just the boy and the baby to test!

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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
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      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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