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Home testing kit

Sally6

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Sally6 Newbie
Sally6
Posted

I had a light bulb moment a few weeks ago and wondered if I was gluten sensitive/celiac. I'm 58 and probably have suffered from this all my life!!  So decided to cut out glutten for 4 days, what a difference I felt like a new woman. 

 

But then i started googling and realised  I needed to be on gluten for 6 weeks for a reliable result. So I'm back on it and all my symptoms are back. 

 

I bought a home testing kit as I was impatient. I was celiac negative after 10 minutes but celiac positive after 30 minutes.

im still eating gluten but was interested if anyone else had experienced this. 

 

Thanks a lot 

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kareng Grand Master
kareng
Posted

I don't know if they are reliable or not.  What test did you use?

Sally6 Newbie
Sally6
Posted
  • Author

Bio card from boots. I'm from the UK.  

kareng Grand Master
kareng
Posted
6 minutes ago, Sally6 said:

Bio card from boots. I'm from the UK.  

We don't have them here, yet.  Might call the company and ask about the odd result.

cyclinglady Grand Master
cyclinglady
Posted

So, the Biocard is a start.  Now, you should get into your GP and ask for a full celiac panel if at all possible.  Bring the biocard results in to show your doctor.  Keep eating gluten until you get all testing done (more blood tests and an endoscopy to obtain biopsies of the small intestine.  

Good luck!  

GFinDC Veteran
GFinDC
Posted

Hi Sally6,

The Biocard results are good for a certain number of minutes, after which they aren't reliable, per the test kit instructions.  That doesn't mean you don't have celiac disease though.  The Biocard test only measures one antibody type.  There are several more in the complete celiac disease antibodies panel.  If you can get your physician to do the complete celiac panel, it might show IgA or IgG antibodies.  Some people don't show an antibody reaction on one type of antibody, but do on another.  So although the basic common screening test (ttg IgA) does catch most people, it doesn't catch all cases of celiac disease.

Your symptoms do sound like possible celiac disease.  Also, Hashimoto's Thyroiditis is a condition associated (higher risk of getting it) with celiac disease.

You are correct that you need to continue eating gluten until testing is completed.  But only 4 days off gluten should not be a big problem for the tests.  If you can get the testing done soon, that would be great.  Usually the process includes a blood antibodies panel followed by an endoscopy later.  The endoscopy should take 4 to 6 biopsy samples for microscopic review.  They check them for damage to the villi lining of the small intestine cause by celiac disease.

You don't need to eat a lot of gluten each day to keep the antibodies active.  The University of Chicago celiac center recommends 1/2 slice of bread daily.

Welcome to the forum Sally! :)

P.S.  There is a thread titled Newbie 101 stickied to the top of the coping with forum.  It has some good information for beginners.

Sally6 Newbie
Sally6
Posted
  • Author

Thanks everyone. That's really helpful. My GP is good but wants to wait for the full 6 weeks before he does a blood test. I've got another 5 weeks which feels like a long time at the moment. I can't wait to be gluten free again as I have never felt so well!!

 

will sort out the newbie bit now ?

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GFinDC Veteran
GFinDC
Posted
7 hours ago, Sally6 said:

Thanks everyone. That's really helpful. My GP is good but wants to wait for the full 6 weeks before he does a blood test. I've got another 5 weeks which feels like a long time at the moment. I can't wait to be gluten free again as I have never felt so well!!

will sort out the newbie bit now ?

Good going Sally!  Shoot, I think it took me about 6 months to sort out the gluten-free diet as a newbie.  That's a bummer they won't do the blood test now.  Did the doctor have any comment on the Biocard test?  I am guessing they would want to see the Biocard test done in their office before they would accept it.  I think the Biocard tests are really useful for individuals trying to sort out if there is a problem themselves, before going to a doctor.

Well, now you've got a chance to use up all those remaining bits of gluten in the cupboard.  You could stop eating dairy now, if it is bothering you.   Quite a few celiacs have problems with dairy before going gluten-free.  Going dairy-free won't affect the celiac testing.  But it might relieve some of the symptoms you are having.

 

Sally6 Newbie
Sally6
Posted
  • Author

From the above advice I have decided to bring forward my blood test at the docs.  It is now scheduled for next Friday. So hopefully my 4 days gluten free a couple of weeks ago, out of 58 years I should get a reliable result. 

Just want a bit of advice prior to the blood test as I don't want to miss the opportunity of them testing for the minimum. I've been under a neuro surgeon this year for tingling legs. He has decided it is fairly  innocutious and labelled it as peripheral neuropathy . He did a blood test for an autoimmune problem and it came back ok. Will it be the same as a celiac blood test?? Any ideas welcome. 

 

Thankyou. 

GFinDC Veteran
GFinDC
Posted

Hi Sally,

I don't know what test he did, but it is likely an ANA spot test.  The ANA test can show some autoimmune problems, but it won't diagnose celiac disease.  Celiac disease is diagnosed by anti-gliaden antibodies (AGA) in the bloodstream, and a positive endoscopy showing immune damage to the gut lining.  So, the ANA isn't a bad test to do, it just isn't specific to celiac disease.

Here's a link with the tests for celiac disease:

Open Original Shared Link

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      Is this celiac?

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      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
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      By Trish G · Posted

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    • trents
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      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
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      ttg iga high (646 mg/dl) other results are normal

      By trents · Posted

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