• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Home Test Kit - Positive Result...at Last!
0

8 posts in this topic

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 :-)

 

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

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! :)

0

Share this post


Link to post
Share on other sites

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!

1

Share this post


Link to post
Share on other sites

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.co.uk/health/article-495062/Do-DIY-health-tests-work-We-ask-experts-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! :)

1

Share this post


Link to post
Share on other sites
Ads by Google:


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.

1

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,800
    • Total Posts
      932,543
  • Member Statistics

    • Total Members
      64,291
    • Most Online
      3,093

    Newest Member
    1Newtothis
    Joined
  • Popular Now

  • Topics

  • Posts

    • Feeneyja and Captain NCGS, and Ironictruth It could be SIBO or it could be NCGS as Captain NCGS pointed out. see this research that matches your 84% of SIBO patients. https://www.celiac.com/articles/24058/1/Large-Number-of-Irritable-Bowel-Syndrome-Patients-Sensitive-to-Gluten/Page1.html Below I summarize their findings I quote “nearly 84% of the gluten- free placebo group showed a significant improvement in symptoms compared to just under 26% for the gluten consuming group.  This study confirms that a large number of patients diagnosed with irritable bowel syndrome are sensitive to gluten.  The team (of doctors) suggest that the term of IBS might be misleading (you think) and may change or delay an “effective and well-targeted treatment strategy in gluten sensitive patients”. “ This is in IBS patients already who fulfilled Rome III (lesion) criteria.  They should at least be considered Non-Celiac Gluten Sensitivity (NCGS) but that would be to admit NCGS is a real condition. If you are having NCGS symptom’s (Marsh Lesion) aka Rome III lesions then why is the diagnosis not NCGS instead of IBS?  The problem is most NCGS (apparently 84%) is misdiagnosed as IBS in a large number of cases or possibly SIBO in your case Feeneyja. Even when 84 % of those with IBS show sensitivity to gluten the diagnosis of Non-Celiac Gluten Sensitivity is not confirmed by a simple gluten antibody test and people  consider Non-Celiac Gluten Sensitive (NCGS at least in the medical community apparently) a myth rather they diagnosis someone’s digestive problems with IBS of an unknown cause instead of admitting gluten is the trigger thus allowing them to avoid what is considered a mythical diagnosis to some in the medical community. By all means if  you have been given an IBS or SIBO diagnosis insist at the least on a gluten antibody test and you may save yourself many years’ of suffering before the doctor’s figure out that Gluten is the trigger then you have hope for recovery if you get the right disease. And I don't mean NCGS. Because even this too is confusing low stomach acid I believe with IBS, NCGS and even SIBO. See my posterboy blog post about why  I think this is. JMG aka Captain NCGS I referenced the Columbia University Medical Center (CUMC)  research on NCGS that I think proves your point and mine. here is the care2 article that I think summarizes it well. http://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html NCGS is on the "Celiac Spectrum". quoting dr. hyman from the huffpost 5+ years ago and still people seem them as different diseases (or at least deny the existence of the one over the other) http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html "When you get these tests, there are a few things to keep in mind. In light of the new research on the dangers of gluten sensitivity without full blown celiac disease, I consider any elevation of antibodies significant and worthy of a trial of gluten elimination. Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be “false positives.” That means the test looks positive but really isn’t significant. We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease. If your antibodies are elevated, you should go off gluten and test to see if it is leading to your health problems." and the columbia research bears this out. ironictruth you want to catch it at the NCGS stage before it becomes full blown (villi burned to the ground) Celiac disease. You are right to run from the burning house (antibodies) causing you a weak but "positive" diagnosis. This concept of the biopsy "proven" diagnosis is archaic at best and barbaric at worse in this age of serology proven diagnosis of NCGS before the villi burns to the ground so to speak. see this online article by dr. rodney ford that discusses why this is today. http://drrodneyford.com/extra/documents/236-no-gold-standard.html and he too (though in minority) is forward enough thinking to diagnose his patients with serology alone. Why would we use a standard 60+ years old when modern medicine can diagnose the disease much better and much, much sooner than what till there is stage 3 marsh lesions. The dgp test you had can diagnose it the intraepithelial lymphocytes (IEL)  stage. That is good news.  The villi are already smoking (using my analogy) of a burning house from antibodies attacking the body. Problem is and I mean this as a complement to SIBO girl and Captain NCGS (I was this in an article about the ZIKA outbreak patients talking how much more they (those affected by the disease) knew than their doctor's who where treating them at the time) we (us) have become doctor's without diplomas'. One of us each has become an expert at recognizing SIBO, NCGS and Pellagra. The question is which one is right??? Maybe we are all right by degrees. I believe NCGS can be confused for SIBO. But I also believe and the research confirms it in my mind that low stomach acid mimics many of the symptom's of both SIBO and NCGS. So that tells me there is still a disease not yet correctly identified. To me the disease that answer's the most questions in my mind is Pellagra. Ironictruth, Freneyja, JMG taking a b-complex can disprove or prove this theory. here is the full paper by Prousky. http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml decide for yourself but people routinely get better in 3 months time of taking  niacinamide 2 to 3 times daily or a b-complex and niacinamide 3/day for 3 months. The dosage does not matter.  It is the frequency. And a month will be enough to see improvement (100 count bottle).  I used to recommend to my friends a 100 count bottle because it was the most common way to find either Niacin/Niacinamide or a b-complex but when I found out your body could store 3 months worth in the liver and my experience with b-2 (riboflavin) and angular cheilitis (look it up on google images if you don't know what it is) for years probably 5+ I could not get rid of it for nothing. And I took b-2 (for a 100 count round) once before but learned b-vitamins needed to be taken frequently for best effect. So I bought a 300 count bottle (3 months worth) and took them (b-2/riboflavin) 2 to 3 day and the angular cheiliitis (leaking lips, cracked fissures at the side of the mouth) and it was nice and crusty went away and they have never come back since. but this was after I took the B-3 Niacinamide for a couple months firsts then I was able to absorb the b-2 (riboflavin) now and I put this condition in remission (i did not say cure) because if I get low again it might come back but remission. The same thing happened to my GI problems associated with NCGS (serology positive celiac diagnosis) without a biopsy proven (thank God) diagnosis. And that is my story. I would suggest jmg, feeneyja and you too too ironictruth buy a b-complex and see if a couple three months regimen might help put your GI symptom's in remission. we already know from research 5+ years ago that b-vitamins help celiac's with their well being. https://www.celiac.com/articles/21783/1/B-Vitamins-Beneficial-for-Celiacs-on-Gluten-Free-Diet/Page1.html quoting "For 6 months, patients received daily doses of either a placebo, or of B vitamins in the amount of 0.8 mg folic acid, 0.5 mg cyanocobalamin and 3 mg pyridoxine." They summarize quoting "These improvements, the normalization of tHcy levels, together with the substantial increase in well-being, led the research team to conclude that people living gluten-free with long-term celiac disease do indeed benefit from daily supplemental doses of vitamin B, and that doctors should consider advising the use of B vitamins supplements for these patients." So I am just saying what the doctor's recommend when recommending Niacinamide for your GI problems that Pellagra could be mimicking (masking the true cause) hence the 58% of celiac also have pellagra (that a majority) of Celiac's also are known to have. I am not a doctor.  But You can be a professor though with a masters so while I do preach Pellagra as a co-morbid condition of NCGS/Celiac disease it is only because the doctor's with diploma's research bears this out. So I try and make more people aware of this fact. (no I do not have  a master's either though a friend once said who has a masters said my research would qualify me if I had taken the courses) (And yes I know B-3 was not studied in this paper) but maybe now is the time to point out it should bee! Or SIBO girl, and Captain NCGS you can try it (B-3) for yourselves and see if it helps you the way it did the Pellagra kid/posterboy. If you want to study this topic more I summarized many of thoughts in this posterboy post https://www.celiac.com/gluten-free/blogs/entry/2103-why-and-how-pellagra-is-often-confused-with-celiac-disease-andor-other-gidigestive-problems-the-science-of-pellagra-a-hidden-epidemic-in-the-21st-century-presentingrevealing-as-ncgs-andor-possbily-celiac-disease/ I wrote a blog post that also said "I had Celiac disease but developed Pellagra" but I really think it is the other way around. (it is linked in the above post) if you want to read it there so I won't post it again. I was a pellagrain who was diagnosed first as a celiac.  The same way a SIBO might first be diagnoses as a IBS or NCGS patient.  Or the way a NCGS is first diagnosed as a IBS patient 84% of the time. Remission is possible I believe if and when you find the right/correct disease. And any of these GI conditions can be confused for the other and SIBO girl and Captain NCGS makes good points. But it seems to me Pellagra can be confused for not only the SIBO, NCGS, but if the research is right 58% (the majority) of Celiac's and it is easily reversible in 3 months time. You will not know if you are not willing to try it. **** this is not medical advice just deep research and my own experience with taking Niacinamide. But I will say  I am not the only one who has been helped on this board taking Vitamin B-3. I want you Iroinctruth, Feeneyja, Jmg to be the next ones. I know this post is way too long as usual but I had a lot of ground to cover. quoting a friend 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God,
    • After my crash and burn gluten challenge of 2016, I wander off yet again Into the land of eastern and alternative medicine to heal. While I am grateful to many (not all) western medicine  Dr s of the past , for the past 2 decades the ones who give me relief for my lifetime ails are the alternative/eastern practitioners. I'm not starting a debate as both branches have their strengths, often the shame is they are seperated in healthcare, for likely humanity and public health imo would be best served by their encouraged collaboration/mutual recognition,but alas not my problem to solve. Much bigger then me and quite frankly, I'm too busy healing to tackle that mountain. Regardless, I now have "shoes that fit my carpet bag " of decades of multiple misdiagnosis /undiagnosis collection. They can be combined and labeled celiac and fibromyalgia. I was shocked at first at the news, I consider those really serious. Is AWOL really that ill? I've read up more  on both disciplines descriptons etc for these conditions, I'm in shock for the "shoes" fit perfectly . I know based on western test results I'm far from textbook/ gold standard celiac (but I failed to get past day 6 of my gluten challenge -likely speaks for itself) and fibromyalgia is quite demeaned/dismissed from my past knowledge amongst the western medicine world and greater society. (Friends /family in western medical fields) Is this still the case? My lifetime gi issues, the 30 plus years multiple chemical sensitivities ( go back to childhood-I keep very close to the vest), 20 plus years symptoms of muscle issues / myalgia, now have the names of celiac & fibromyalgia. Mixture of feelings of relief to be recognized, but also knowing my named illnesses are likely not recognized or are minimised by my western medicine trained family and friends and greater society. Can anyone offer some encouragement to help me cope at this time of healing? My accupuncture visits have been truly helpful, but my last visit is giving me a lot to process chemically, biologically, and spiritually. It's like someone unleashed the flood gates of all the symptoms of both illnesses at once in a combined package for me to experience in a one transparent package.  Very enlightening and to be blunt I feel like crap. So it's time to accept the package names and all, the curtain was lifted and the waxing and waning symptoms of fibromyalgia we're released. Please share any positive support or stories you have on coping with celiac recovery, celiac/fibromyalgia, and  healing by accupuncture. It will be much appreciated. As it is abundantly clear AWOL is here to stay on the celiac.com forums. Thanks  
    • https://www.celiac.com/gluten-free/topic/116482-supplement-and-foods-you-take/ ^ I did this a while back where some of us have posted what we take and eat to get our nutrients. Mines changed a bit since then since I can not eat any grains, sugars or fruits.
    • I take 2 Slice of Life gummy multivitamins and drink 2 Ensure high protein per day. Both are gluten free.
  • Upcoming Events