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Home Test Kit - Positive Result...at Last!


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#1 Celia's Mum

 
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Posted 07 March 2013 - 05:18 AM

Having posted about my teen daughter's diagnosis of Celiac a couple of days ago in the 'post diagnosis' section, I just had to share something here about myself. I've had such ridiculously 'classic' Celiac symptoms for as long as I can remember plus a few other odd things to boot (I'm 46 F)! Well, given my daughter's diagnosis last week, I bought myself a test kit (a very reputable one) from Boots. I just did it and it showed a positive result - quite a faint second red line, but nonetheless, it was a red line. The instructions show it may come as a strong line or a paler one.

 

Well, it's a shock but not a shock! I'm just so relieved to know all these things weren't in my head like my GP would have me think. I was tested a year or two ago by the GP and it was negative. But I'd been off gluten a few months and they didn't think to tell me you need to eat it! (I'd naturally swerved away from it as figured it was bad for me) So GP has now issued another hospital blood test form and I'm going to stuff my face with bread for the next three or four days (I've been glutening for a good few weeks now, but I just want to make sure in case the pale line meant a weak positive) and hopefully I'll get a positive and can move forward. I can't wait to make this house a totally gluten-free zone!

 

In case anyone's interested, my main sypmtoms are: severe bloating and wind (8 months pregnant-type bloating most of the time. I'm slim but have a huge stomach!), right side pain (had liver/gall bladder scans - clear) cramping in stomach and beneath lower middle rib area, nausea, palpitations, stress fracture, melasma, lactose intolerance, dizziness and 'spaced out/about to faint' feeling coming in waves, severe long term 'C', dotted with bouts of 'D' (rare these days), headaches, wake up in night with numb arms and hands, TMJ problems (dentist made me a splint which helps), severe anxiety and, in the past, depression, extreme rash on arms and legs (in remission presently but you wouldn't believe some of the pics I have! It flares up in milder form from time to time), muscle twitching, long-term low grade anaemia (on iron presently from doc - who STILL didn't add all this up!), adenomyosis and very bad periods (also no doubt contributing to anaemia), seriously bad and increasing brain fog and terrible memory (never used to have).

 

That's it really. Just wanted to share! I so hope the official results come good as, while I don't want this, I DO want a reason to why.

 

Thanks for reading :-)

 


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#2 guest134

 
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Posted 07 March 2013 - 07:40 AM

Although it seems extremely likely that you have the disease due to your symptoms and your daughter having it (was she biopsy confirmed?) I still have to inform you that all of these take home gluten tests are next to useless. There is a reason these tests are sold directly to the public and not adopted by the medical community - they are garbage. Of course these sketchy institutions always have these "clinical studies" that conveniently are never peer reviewed or published for anyone's viewings, it is just a marketing ploy to make money, just like any other business.

Here are the blood tests you need, demand for all of them since your doctor seems like he likes to cut corners and be lazy:
Total Serum IgA
Deamidated Gliadin IgA
Deamidated Gliadin IgG
Tissue Transglutiminase IgA (With the IgG version if you are total serum IgA deficient)
Endomysial Ab

If you have Celiac there is a 98-99 percent chance you will score positive on at least one of these tests as long as you have been eating gluten daily for around 3 weeks or more and have IgA sufficiency. If you somehow get negative on all of them which is highly unlikely I would recommend going for a biopsy as you seem to be in a higher risk group and there have been members on this board that have been that 1-2 percent to score false negative for no known reason. If both blood tests and biopsy are negative despite adequate amounts of gluten and biopsy samples being taken you should consider non-Celiac gluten intolerance in which the only real test for that is a strict gluten free trial.


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#3 Celia's Mum

 
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Posted 08 March 2013 - 03:01 AM

Although it seems extremely likely that you have the disease due to your symptoms and your daughter having it (was she biopsy confirmed?) I still have to inform you that all of these take home gluten tests are next to useless. There is a reason these tests are sold directly to the public and not adopted by the medical community - they are garbage. Of course these sketchy institutions always have these "clinical studies" that conveniently are never peer reviewed or published for anyone's viewings, it is just a marketing ploy to make money, just like any other business.

Here are the blood tests you need, demand for all of them since your doctor seems like he likes to cut corners and be lazy:
Total Serum IgA
Deamidated Gliadin IgA
Deamidated Gliadin IgG
Tissue Transglutiminase IgA (With the IgG version if you are total serum IgA deficient)
Endomysial Ab

If you have Celiac there is a 98-99 percent chance you will score positive on at least one of these tests as long as you have been eating gluten daily for around 3 weeks or more and have IgA sufficiency. If you somehow get negative on all of them which is highly unlikely I would recommend going for a biopsy as you seem to be in a higher risk group and there have been members on this board that have been that 1-2 percent to score false negative for no known reason. If both blood tests and biopsy are negative despite adequate amounts of gluten and biopsy samples being taken you should consider non-Celiac gluten intolerance in which the only real test for that is a strict gluten free trial.

 

Hello toworryornottoworry - thanks so much for your reply. I have to disagree with your view that the tests are 'next to useless' and 'garbage', although I do certainly believe that they should never replace a proper doctor-ordered blood test. Even if a home test kit shows negative, people with symptoms should still seek medical help, even if it doesn't turn out to be celiac on a medical test. I also believe that in many cases, for many reasons, home tests will provide an inaccurate result. In many other cases, however, they will produce an accurate result but, of course, this should totally be backed up by medical investigation. In my case, at least, the positive result on the Biocard has given me good reason to follow this up with my GP, which may not have happened without the test kit. If only a handful of people gain a medical diagnosis one way or the other with the test kit as a starting point then that justifies their existence. Whether one chooses to pay the £20 for the kit is purely a personal decision. It's a bit on the pricey side, but in my opinion worth it.

 

My GP has now agreed to blood test me (like he did my daughter when she came out with a strong positive TTG last week) and I didn't have to 'demand' it either. I'm not sure where you are, but in the UK it seems that the TTG and IGA testing is the standard initial test along with total serum IGA to test for deficiencies. If the serum levels are normal and the TTG is positive  then it's onto the gastro constultant for endos etc. If not, the GP will then run the endomysial test if celiac is strongly suspected. But I am neither a doctor nor a path lab chemist/expert so I can't comment on whether this is correct or not. Seeing as the NHS use the TTG test widely as a first indicator, I will assume, for now, they know what they're doing and that it is in line with whatever UK guideline have been recommended. Guess it's different in different countries.

 

Thanks for all the other info regards biopsies etc. Yes, I feel I may well be headed that route, as is my daughter who has an appointment first with the gastro specialist in a month's time. He may or may not decide to go the endo route with her. I've learnt that sometimes they don't with kids - just depends on each individual case. Meantime, I've been glutening myself for the last few weeks and have 'upped' my intake to the point of feeling permanently sick and in pain! So we'll see...

 

Thanks and best wishes! :)


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#4 GottaSki

 
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Posted 08 March 2013 - 07:19 AM

I disagree with calling the home tests garbage. It is limiting in that it only measures tTG-IgA, but until very recently this was the only test folks were given to screen for Celiac Disease and still remains the only test many primary doctors order.

With the positive tTG along with the long list of symptoms and a child diagnosed - I would say you are very likely celiac. It is wise to stay on gluten until you have the full antibody panel run - I forget if toworryornot listed nutrient testing as well - so ill add the following to your list - you can have primary run all of these to help speed the diagnostic process:

B1, B2, B6, B12, D, K, iron, Ferritin, Copper and Zinc
CBC
CMP

Good Luck to you both!
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

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#5 gatita

 
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Posted 08 March 2013 - 07:20 AM

Actually, the Biocard test appears to be as reliable as the (very) basic celiac blood test my own doctor ordered (which is to say, fairly high false negatives, but low false positives).

 

The Canadian government (Health Canada) has approved Biocard. Here's what one UK doctor has to say about it: http://www.dailymail...s-verdicts.html

 

(Wish we could get those here in the states. So many people who don't have insurance could benefit from them as a first step toward diagnosis.)

 

I do agree that a full celiac blood panel is now in order.

 

Anyway, glad you are getting some answers and that your doc will do follow-ups. Now... on to the healing part! :)


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#6 mushroom

 
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Posted 08 March 2013 - 01:03 PM

My GP has now agreed to blood test me (like he did my daughter when she came out with a strong positive TTG last week) and I didn't have to 'demand' it either. I'm not sure where you are, but in the UK it seems that the TTG and IGA testing is the standard initial test along with total serum IGA to test for deficiencies. If the serum levels are normal and the TTG is positive  then it's onto the gastro constultant for endos etc. If not, the GP will then run the endomysial test if celiac is strongly suspected. But I am neither a doctor nor a path lab chemist/expert so I can't comment on whether this is correct or not. Seeing as the NHS use the TTG test widely as a first indicator, I will assume, for now, they know what they're doing and that it is in line with whatever UK guideline have been recommended. Guess it's different in different countries.

Hello, Celias Mum.  Yes, the testing protocols are different wherever you go.  Some doctors in the US use only the total IgA and tTG for screening purposes also, which I feel is a little unfortunate, since you CAN be celiac and not test positive on the tTG.  On the panel that toworrynottoworry listed, it is necessary only to be positive on one of those celiac tests for the diagnosis to be entertained and a biopsy performed, and often that one positive is not the tTG, which is the reason the entire panel is recommended.  The DGP (deamidated gliadin peptide) is a much newer test, is very specific for celiac, and tends to pick up the disease at a much earlier stage than the tTG.  Some of our posters have been testing positive only on the DGP IgG, not IgA, and have turned out to be celiac.  The medical profession has been slow to uptake this new test and many doctors are not even familiar with it, let alone knowing its significance.

 

As you know, your daughter's disease had to be inherited, and it sounds like you are the likely candidate for this role. :)   For this reason, if you cannot get your doctor to also run the DGP, and if your tTG should turn up negative, I agree with the other posters that you should definitely try the gluten free diet anyway for a good three months, because the testing process is definitely not infallible.  Hopefully, the indications from the Biocard are heading you in the right direction. :)

 

Best wishes to both you and your daughter.


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#7 guest134

 
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Posted 08 March 2013 - 05:15 PM

I wasn't aware that it was a TTG blood test, I thought you were speaking of the fecal gliadin tests.


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#8 nvsmom

 
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Posted 10 March 2013 - 07:15 PM

Welcome to the board.  :)

 

I too used a Biocard (ttg IgA) home test and ended up with a very faint line. I kept putting off going to the doctor before this so it was a great prod in the right direction for me. I took my test in to see my doctor and he retested my ttg IgA as well as my EMA IgA which both came back very positive. I've been gluten-free ever since.  :)

 

Good luck with the rest of your testing. The others listed the other tests to look into already so I'll just add that you might want to get your thyroid checked as well; a positive ttg IgA is commonly found among hashimotos patients, which frequently occurs along with celiac disease.

 

Best wishes.


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