• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • Scott Adams

      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
Celia's Mum

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

Rate this topic

Recommended Posts

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 :-)

 

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.

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! :)

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!

  • Upvote 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! :)

  • Upvote 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.

  • Upvote 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.

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.

  • Upvote 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

  • Who's Online   12 Members, 1 Anonymous, 413 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Jefferson Adams
    Celiac.com 05/22/2018 - Proteins are the building blocks of life. If scientists can figure out how to create and grow new proteins, they can create new treatments and cures to a multitude of medical, biological and even environmental conditions.
    For a couple of decades now, scientists have been searching for a biological Rosetta stone that would allow them to engineer proteins with precision, but the problem has remained dauntingly complex.  Researchers had a pretty good understanding of the very simple way that the linear chemical code carried by strands of DNA translates into strings of amino acids in proteins. 
    But, one of the main problems in protein engineering has to do with the way proteins fold into their various three-dimensional structures. Until recently, no one has been able to decipher the rules that will predict how proteins fold into those three-dimensional structures.  So even if researchers were somehow able to design a protein with the right shape for a given job, they wouldn’t know how to go about making it from protein’s building blocks, the amino acids.
    But now, scientists like William DeGrado, a chemist at the University of California, San Francisco, and David Baker, director for the Institute for Protein Design at the University of Washington, say that designing proteins will become at least as important as manipulating DNA has been in the past couple of decades.
    After making slow, but incremental progress over the years, scientists have improved their ability to decipher the complex language of protein shapes. Among other things, they’ve gained a better understanding of how then the laws of physics cause the proteins to snap into folded origami-like structures based on the ways amino acids are attracted or repelled by others many places down the chain.
    It is this new ability to decipher the complex language of protein shapes that has fueled their progress. UCSF’s DeGrado is using these new breakthroughs to search for new medicines that will be more stable, both on the shelf and in the body. He is also looking for new ways to treat Alzheimer’s disease and similar neurological conditions, which result when brain proteins fold incorrectly and create toxic deposits.
    Meanwhile, Baker’s is working on a single vaccine that would protect against all strains of the influenza virus, along with a method for breaking down the gluten proteins in wheat, which could help to generate new treatments for people with celiac disease. 
    With new computing power, look for progress on the understanding, design, and construction of brain proteins. As understanding, design and construction improve, look for brain proteins to play a major role in disease research and treatment. This is all great news for people looking to improve our understanding and treatment of celiac disease.
    Source:
    Bloomberg.com

    Jefferson Adams
    Celiac.com 05/21/2018 - Just a year ago, Starbucks debuted their Canadian bacon, egg and cheddar cheese gluten-free sandwich. During that year, the company basked in praise from customers with celiac disease and gluten-sensitivity for their commitment to delivering a safe gluten-free alternative to it’s standard breakfast offerings.
    But that commitment came to an ignoble end recently as Starbucks admitted that their gluten-free sandwich was plagued by  “low sales,” and was simply not sustainable from a company perspective. The sandwich may not have sold well, but it was much-loved by those who came to rely on it.
    With the end of that sandwich came the complaints. Customers on social media were anything but quiet, as seen in numerous posts, tweets and comments pointing out the callous and tone-deaf nature of the announcement which took place in the middle of national Celiac Disease Awareness Month. More than a few posts threatened to dump Starbucks altogether.
    A few of the choice tweets include the following:  
    “If I’m going to get coffee and can’t eat anything might as well be DD. #celiac so your eggbites won’t work for me,” tweeted @NotPerryMason. “They’re discontinuing my @Starbucks gluten-free sandwich which is super sad, but will save me money because I won’t have a reason to go to Starbucks and drop $50 a week,” tweeted @nwillard229. Starbucks is not giving up on gluten-free entirely, though. The company will still offer several items for customers who prefer gluten-free foods, including Sous Vide Egg Bites, a Marshmallow Dream Bar and Siggi’s yogurt.
    Stay tuned to learn more about Starbucks gluten-free foods going forward.

    Jefferson Adams
    Celiac.com 05/19/2018 - Looking for a nutritious, delicious meal that is both satisfying and gluten-free? This tasty quinoa salad is just the thing for you. Easy to make and easy to transport to work. This salad of quinoa and vegetables gets a rich depth from chicken broth, and a delicious tang from red wine vinegar. Just pop it in a container, seal and take it to work or school. Make the quinoa a day or two ahead as needed. Add or subtract veggies as you like.
    Ingredients:
    1 cup red quinoa, rinsed well ½ cup water ½ cup chicken broth 2 radishes, thinly sliced 1 small bunch fresh pea sprouts 1 small Persian cucumber, diced 1 small avocado, ripe, sliced into chunks Cherry or grape tomatoes Fresh sunflower seeds 2 tablespoons red wine vinegar  Kosher salt, freshly ground pepper Directions:
    Simmer quinoa in water and chicken broth until tender.
    Dish into bowls.
    Top with veggies, salt and pepper, and sunflower seeds. 
    Splash with red wine vinegar and enjoy!

    Jefferson Adams
    Celiac.com 05/18/2018 - Across the country, colleges and universities are rethinking the way they provide food services for students with food allergies and food intolerance. In some cases, that means major renovations. In other cases, it means creating completely new dining and food halls. To document both their commitment and execution of gluten-free and allergen-free dining, these new food halls are frequently turning to auditing and accreditation firms, such as Kitchens with Confidence.
    The latest major player to make the leap to allergen-free dining is Syracuse University. The university’s Food Services recently earned an official gluten-free certification from Kitchens with Confidence for four of the University’s dining centers, with the fifth soon to follow.
    To earn the gluten-free certification from Kitchens with Confidence, food services must pass a 41 point audit process that includes 200 control check points. The food service must also agree to get any new food item approved in advance, and to submit to monthly testing of prep surfaces, to furnish quarterly reports, and to provide information on any staffing changes, recalls or incident reports. Kitchens with Confidence representatives also conduct annual inspections of each dining center.
    Syracuse students and guests eating at Ernie Davis, Shaw, Graham and Sadler dining centers can now choose safe, reliable gluten-free food from a certified gluten-free food center. The fifth dining center, Brockway, is currently undergoing renovations scheduled for completion by fall, when Brockway will also receive its certification.
    Syracuse Food Services has offered a gluten-free foods in its dining centers for years. According to Jamie Cyr, director of Auxiliary Services, the university believes that the independent Gluten-Free Certification from Kitchens with Confidence will help ease the anxiety for parents and students.”
    Syracuse is understandably proud of their accomplishment. According to Mark Tewksbury, director of residence dining operations, “campus dining centers serve 11,000 meals per day and our food is made fresh daily. Making sure that it is nutritious, delicious and safe for all students is a top priority.”
    Look for more colleges and universities to follow in the footsteps of Syracuse and others that have made safe, reliable food available for their students with food allergies or sensitivities.
    Read more.

    Zyana Morris
    Celiac.com 05/17/2018 - Celiac disease is not one of the most deadly diseases out there, but it can put you through a lot of misery. Also known as coeliac, celiac disease is an inherited immune disorder. What happens is that your body’s immune system overreacts to gluten and damages the small intestine. People who suffer from the disease cannot digest gluten, a protein found in grain such as rye, barley, and wheat. 
    While it may not sound like a severe complication at first, coeliac can be unpleasant to deal with. What’s worse is it would lower your body’s capacity to absorb minerals and vitamins. Naturally, the condition would cause nutritional deficiencies. The key problem that diagnosing celiac is difficult and takes take longer than usual. Surprisingly, the condition has over 200 identified symptoms.
    More than three million people suffer from the coeliac disease in the United States alone. Even though diagnosis is complicated, there are symptoms that can help you identify the condition during the early stages to minimize the damage. 
    Here is how you can recognize the main symptoms of celiac disease:
    Diarrhea
    In various studies conducted over years, the most prominent symptom of celiac disease is chronic diarrhea.
    People suffering from the condition would experience loose watery stools that can last for up to four weeks after they stop taking gluten. Diarrhea can also be a symptom of food poisoning and other conditions, which is why it makes it difficult to diagnose coeliac. In certain cases, celiac disease can take up to four years to establish a sound diagnosis.
    Vomiting
    Another prominent symptom is vomiting.  
    When accompanied by diarrhea, vomiting can be a painful experience that would leave you exhausted. It also results in malnutrition and the patient experiences weight loss (not in a good way though). If you experience uncontrolled vomiting, report the matter to a physician to manage the condition.
    Bloating
    Since coeliac disease damages the small intestine, bloating is another common system. This is due to inflammation of the digestive tract. In a study with more than a 1,000 participants, almost 73% of the people reported bloating after ingesting gluten. 
    Bloating can be managed by eliminating gluten from the diet which is why a gluten-free diet is necessary for people suffering from celiac disease.
    Fatigue
    Constant feeling of tiredness and low energy levels is another common symptom associated with celiac disease. If you experience a lack of energy after in taking gluten, then you need to consult a physician to diagnose the condition. Now fatigue can also result from inefficient thyroid function, infections, and depression (a symptom of the coeliac disease). However, almost 51% of celiac patients suffer from fatigue in a study.
    Itchy Rash
    Now the chances of getting a rash after eating gluten are slim, but the symptom has been associated with celiac disease in the past. The condition can cause dermatitis herpetiformis, which causes a blistering skin rash that occurs around the buttocks, knees, and elbows. 
    A study found out that almost 17% of patients suffering from celiac disease might develop dermatitis herpetiformis due to lack of right treatment. Make sure you schedule an online appointment with your dermatologist or visit the nearest healthcare facility to prevent worsening of symptoms.
    Even with such common symptoms, diagnosing the condition is imperative for a quick recovery and to mitigate the long-term risks associated with celiac disease. 
    Sources:
    ncbi.nlm.nih.gov  Celiac.com ncbi.nlm.nih.gov  mendfamily.com