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Celia's Mum

Member Since 04 Mar 2013
Offline Last Active Mar 08 2013 03:01 AM
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Posts I've Made

In Topic: Home Test Kit - Positive Result...at Last!

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! :)


In Topic: Newly Diagnosed - Could Use Some Advice!

05 March 2013 - 01:28 AM

Thanks, txgal748. I asked her about haemorrhoids and she wasn't really sure if she had or not. Could be internal, I guess. Re the private appt, it's not so much that there isn't availability - for instance, I could get myself a private appt tomorrow most likely. The problem is the private hospitals in our area don't seem to take kids under 16. They simply don't employ paediatric gastros. I have possibly found a bigger children's hosp that has a private dept - it's further away but that's fine.Fingers crossed they come good. The NHS appt a few weeks away is in a great teaching hospital near us and I'm in no doubt would offer a great service. It's the frustration everyone suffers here in the UK - we all have to join the queue, although I do believe the NHS, on the whole, is a remarkable thing and I wouldn't want to be without it! Interesting that you didn't have to have an endo - so it can happen! Daughter and I a bit nervous about that. If anyone else has celiac in the family, it's likely to be me (have all the symptoms and so far DXed with IBS). I'm getting re-tested asap - first test was when I was gluten free. My brother has Crohn's, my dad IBS forever (I think undiagnosed celiac) and my grandmother suffered with so many celiac symptoms all her life, it makes me want to weep she went undiagnosed - or at least never even tested as far as I know. Anyway, I hope you're doing well and things are getting better for you.

 

Thanks nvsmom - this board is certainly a great resource! Oddly, she said the water didn't go red - which may be some comfort and point more to undigested food?? I never saw it. I told her not to flush next time so I can check it! She's quite anxious about things anyway so I'm wondering if it's a case of her 'seeing the worst' when it was just food. I'll be taking it seriously though, and following up. I just hope I can get her an appt sooner rather than later. Thanks for the kind wishes :-)


In Topic: Newly Diagnosed - Could Use Some Advice!

04 March 2013 - 09:23 AM

I'm a bit confused.

 

You must be eating gluten for testing.  The testing picks up on the damage being done to the body while eating gluten.

 

Frequent constipation can cause small rips that bleed during large, hard movements.  Since the description is of fresh, bright red colored blood; it is most likely from injury from large bowel movement.  Still get medical attention, but don't worry that it is worst case scenario.

Hi mommida,

 

Sorry - maybe didn't explain well! Yes, she's been eating gluten - I think enough to make it show in the blood test, which it seems to have done. At home she'll have gluten free stuff occasionally as it suits her better, but has school dinners - always quite 'gluteny' and other slip-ups. And for instance, last week I couldn't get gluten-free lasagne sheets, so just made regular. It's just when she has a gluten free sandwich for eg, the pain isn't there like it is immediately with a regular sandwich. It's just been guesswork until now, so I'd buy gluten-free stuff here and there so she's not in pain ALL the time.

 

That's what I'm hoping re the constipation. It's very worrying hearing your child report that. Thanks for the reassurance and you reply.