0
Purplemummy

Assuming Possible Misdiagnosis

Rate this topic

Recommended Posts

Hello from the UK .

In 2007 my youngest son was diagnosed with coeliac disease this was via a yearly blood test ( both he and his older brother have type one Diabetes ) . So as coeliac disease is linked it is checked along with thyroid function etc every year . In more recent years children now diagnosed with pernicious Anaemia & Addisons disease ...... I expect additional autoimmune conditions to crop up soon .

My son did not have a biopsy was just re tested for Coeliac Disease - positive again. He grew 4 cm in 3 months once diet started .

I took myself to GP and requested Coeliac testing as well for myself .... I have Vitiligo & lichen sclerous ( both Auto immune conditions ) .

I was told results were clear .

However I recently requested copies of the Coeliac test from 2007 when I collected some other recent tests results .

This is what is written which seems very unsatisfactory & from a lay mans point of view looks like test is incomplete .

====================================

" Ser tiss transglutaminase lev" , 1 U /ml ( 0 - 15)

A negative tissue transglutiminase screening test does not exclude coeliac disease in IgA deficient patients . Serum IgA levels ( Clinical chemistry ) should be measured to detect IgA deficiency .

" Anti - gliadin IgA " Test no longer available

" Anti- gliadin IgG level " Test no longer available .

======================================

So it looks like only one test was carried out , in which case I am really angry ....... This Gp surgery have made numerous errors over the years & I barely go to see them anyway & reduce prescriptions all the time .... they seem to think Diabetes goes away ......

==============================================

Please could you tell me exactly which tests should have been carried out ?

===============================================

I am unsure what to do at this point because I have been on a gluten free diet since my son was diagnosed to give moral support to him .

Some gluten will have slipped into my diet here & there as I have been slightly less vigilant for myself over the last year . But only in terms of restaurant food trace amounts ( soya sauce etc) or toasting gluten free bread in normal toaster . ( I am however super strict for my son though ) . I would never eat bread , cakes , pasta etc . So I am sure if I was tested now all tests would come back negative .

I am presently impressively anaemic , plus low ferritin , Vitamin D barely registing , Low B12 ( awaiting Active B12 results ) .

I am a single parent to my boys with their complex & increasing health needs ..... So my stress levels are extreme .... any vitamins go in & straight out just to keep me standing up .

Share this post


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


Hi from back across the pond !

I looked at the NHS website, and that wasn't very helpful, it just said "blood test" for "antibodies." :blink:

Try here, the Coeliac.org.uk site

http://www.coeliac.org.uk/coeliac-disease/how-to-get-diagnosed

The most accurate blood tests for coeliac disease are:

Tissue transglutaminase antibody (shortened to 'tTGA')

Endomysial antibody (shortened to 'EMA')

The test used depends on the laboratory performing the test - they may measure one of the antibodies, or sometimes both.

IgA deficiency

Some people with coeliac disease do not make the usual coeliac disease antibodies. This is called IgA deficiency and so your GP will need to test you differently for the condition. If you have ongoing symptoms that suggest coeliac disease but you have had a negative blood test, then ask your GP to test you for IgA deficiency.

You're sort of in a pickle, they didn't try to test you very thoroughly, and you're almost off of gluten for a long time, which would skew the test results now, even if you did get a do- over.

Share this post


Link to post
Share on other sites

Personally, I think the time for testing or retesting has passed since you've been gluten free for so long. Your doctors should focus on how to address your nutritional deficiencies. If your ferritin levels do NOT increase with oral supplementation, you should request intravenous infusions for a while. As you know, you can buy sublingual B12 without the need for injections. As for Vitamin D, I know that here in the States we're able to purchase Country Life Vitamin D3, which also includes the correct ratio of Vitamin A (which is necessary when taking Vitamin D) as well as medium-chain triglycerides, which are necessary for absorption by people with celiac. I realize that sunlight can be scarce there, but perhaps you can buy a specialized lamp to deliver the proper sunlight to increase your Vitamin D, as well.

Your doctors sound like bumbling idiots (sorry to say that), so you may have to take on your own treatment plan.

Share this post


Link to post
Share on other sites

Hi

I am in the UK too and just got my results, one test only and not even a range, just 'negative'.

My doctor tested after a week on gluten, so not much chance of decent diagnosis.

Stinks doesn't it? Sorry you have been through this to. Reading around here I have decided to be my own best advocate.

Next battle, getting my kids tested...

Good luck

Share this post


Link to post
Share on other sites

Hello from the UK .

In 2007 my youngest son was diagnosed with coeliac disease this was via a yearly blood test ( both he and his older brother have type one Diabetes ) . So as coeliac disease is linked it is checked along with thyroid function etc every year . In more recent years children now diagnosed with pernicious Anaemia & Addisons disease ...... I expect additional autoimmune conditions to crop up soon .

My son did not have a biopsy was just re tested for Coeliac Disease - positive again. He grew 4 cm in 3 months once diet started .

I took myself to GP and requested Coeliac testing as well for myself .... I have Vitiligo & lichen sclerous ( both Auto immune conditions ) .

I was told results were clear .

However I recently requested copies of the Coeliac test from 2007 when I collected some other recent tests results .

This is what is written which seems very unsatisfactory & from a lay mans point of view looks like test is incomplete .

====================================

" Ser tiss transglutaminase lev" , 1 U /ml ( 0 - 15)

A negative tissue transglutiminase screening test does not exclude coeliac disease in IgA deficient patients . Serum IgA levels ( Clinical chemistry ) should be measured to detect IgA deficiency .

" Anti - gliadin IgA " Test no longer available

" Anti- gliadin IgG level " Test no longer available .

======================================

So it looks like only one test was carried out , in which case I am really angry ....... This Gp surgery have made numerous errors over the years & I barely go to see them anyway & reduce prescriptions all the time .... they seem to think Diabetes goes away ......

==============================================

Please could you tell me exactly which tests should have been carried out ?

===============================================

I am unsure what to do at this point because I have been on a gluten free diet since my son was diagnosed to give moral support to him .

Some gluten will have slipped into my diet here & there as I have been slightly less vigilant for myself over the last year . But only in terms of restaurant food trace amounts ( soya sauce etc) or toasting gluten free bread in normal toaster . ( I am however super strict for my son though ) . I would never eat bread , cakes , pasta etc . So I am sure if I was tested now all tests would come back negative .

I am presently impressively anaemic , plus low ferritin , Vitamin D barely registing , Low B12 ( awaiting Active B12 results ) .

I am a single parent to my boys with their complex & increasing health needs ..... So my stress levels are extreme .... any vitamins go in & straight out just to keep me standing up .

True, no celiac testing will be accurate, but you could try to get a total IgA run.

Share this post


Link to post
Share on other sites
Ads by Google:


It is very difficult to remain unsure, but it seems to me that your best action right now would be to remove any remaining gluten - be as strict with your body as you are with your son - to monitor for improvement. Keep supplementing the nutrients you are deficient in - it can take a very long time to improve - especially if you have trace amounts of gluten frequently enough.

If you choose to get more testing done, make sure they run the full celiac panel:

Total Serum IgA

Tissue Transglutaminase IgA and IgG

Gliadin IgA and IgG

Endomysial Antibody IgA

Deamidated Gliadin Peptide IgA and IgG

Even if you are not IgA deficient, the IgG tests are important. I am not IgA deficient yet my IgG numbers were much higher than my IgA.

The Deamidated Gliadin Peptide tests are especially important in follow up blood tests as they can indicate gluten remains in the diet - even when tTGs are negative.

Good Luck!

Share this post


Link to post
Share on other sites

Dear Everyone ,

Thank you for your helpful comments.

I how need some advice re my Son L ( see below ) younger son already has coeliac disease plus Type 1 Diabetes Pernicious anaemia , low - iron , vitamin D , iron , ferritin , folic acid .

So Son L - I wonder if he has sub clinical coeliac disease . He eats full gluten containing diet ...... & would go completely crazy if he is diagnosed , so it is important for the tests to be as correct as possible .

First Son - Child L ( male 16yrs ) Type 1 Diabetes , Addisons Disease , Pernicious anaemia , low - iron , vitamin D , iron , ferritin , folic acid .

Latest result October 2012

Tissue Transglutaminase 0.7 ( range 0 -6.99 )

Interpretation Negative .

Please could you explain what the above result means ...... does the result have to go over 6.99 to be coeliac ? I don't quite understand how it works .

I also found this snippet of information on University of Chicago Celiac Disease Center

Which I wondered whether applied to me & my boys ?

"Does this apply to you?

It is important to note that some people with Type 1 Diabetes,

Hashimoto’s thyroiditis and autoimmune liver conditions can have

a falsely positive tissue transglutaminase test. For this reason, it is

important that tTG test results in people with these conditions be

checked with the EMA test. The physician may nevertheless want to

obtain an intestinal biopsy if clinically indicated, even if EMA are

negative.

One More Thing…

People with IgA deficiency require a different version of the antibody

tests listed above. The tTG and EMA tests have IgG versions and

these tests will then be accurate for someone with IgA deficiency.

+++++++++++++++

IgA deficiency is diagnosed when someone has a total serum IgA test and

the results are very close to zero.

+++++++++++++++++++++++++++++

This is not a test for celiac disease,

but a means to make a more accurate diagnosis."

So would that mean my son ? & possibly me on my test from ( 2007 )

I have have been doing soo much medical research this last 6 months re Addisons Disease & Pernicious Anaemia & Vitamin D blah blah blah I have slightly lost the plot on some avenues .... Coeliac being one of them

Note for people based in the UK Deamidated Gliadin Peptide IgA and IgG is being considered by Great Ormond Street Childrens Hospital But is not currently available .

Regards

Share this post


Link to post
Share on other sites

Your son's tTG is indeed negative, but does not mean he does not have Celiac Disease. With symptoms and a diagnosed sibling it remains a strong possibility that he does have celiac disease.

Yes, you both need to have the additional Total Serum IgA blood test to determine if you are deficient. If deficient none of the IgA based antibody tests will be accurate. IgG based tests become essential.

I'm not clear what tests you can get where you are, but the entire list I included in the previous post is the goal for each of you.

The UoC quote with regard to diabetes is speaking to false positive, not false negative tests. Your son's may be false negative.

  • Upvote 1

Share this post


Link to post
Share on other sites

Thank you .

I have requested copies of all tests & results re coeliac for Son L . They do yearly tests as part of Diabetes profile but I certainly don't think they include all the ones you mentioned .

We are back in hospital on Tuesday for 36 hours re Addisons disease So I can beg & stamp my foot for any not done .Well basically ask for complete list that you mentioned .

What are your thoughts on HLA DQ2 / DQ8 genotype ? I have found that I could get that done privately but it is nearly £ 200 .

Although I am pretty anxious about a positive result ...

Regards

Share this post


Link to post
Share on other sites

Not sure if your son getting gene testing is the best idea - not all people with Celiac Disease have either DQ2 or DQ8 - should he test negative to those he may use that as evidence that he does not have Celiac. I am not saying he does, but as you mention you will be convincing him of the need to remove gluten if he tests positive. On the flip side if it is positive it will add weight to the diagnosis, but it alone does not indicate Celiac Disease - only that he may develop it.

I'd push for all the essential tests of the full celiac panel, updated nutrient testing if needed and ask for gene testing at the same time should you choose to have it done. His symptoms certainly indicate it is possible. It is recommended that the full celiac panel be run for any first degree relative of someone diagnosed with Celiac Disease every 3-5 years (more frequently should symptoms arise)...since your younger son has been dx'd it should be sufficient reason for you, his father along with any siblings to be tested.

Share this post


Link to post
Share on other sites


Ads by Google:


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   16 Members, 1 Anonymous, 516 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Roxanne Bracknell
    Celiac.com 06/22/2018 - The rise of food allergies means that many people are avoiding gluten in recent times. In fact, the number of Americans who have stopped eating gluten has tripled in eight years between 2009 and 2017.
    Whatever your rationale for avoiding gluten, whether its celiac disease, a sensitivity to the protein, or any other reason, it can be really hard to find suitable places to eat out. When you’re on holiday in a new and unknown environment, this can be near impossible. As awareness of celiac disease grows around the world, however, more and more cities are opening their doors to gluten-free lifestyles, none more so than the 10 locations on the list below.
    Perhaps unsurprisingly, the U.S is a hotbed of gluten-free options, with four cities making the top 10, as well as the Hawaiian island of Maui. Chicago, in particular, is a real haven of gluten-free fare, with 240 coeliac-safe eateries throughout this huge city. The super hip city of Portland also ranks highly on this list, with the capital of counterculture rich in gluten-free cuisine, with San Francisco and Denver also included. Outside of the states, several prominent European capitals also rank very highly on the list, including Prague, the picturesque and historic capital of the Czech Republic, which boasts the best-reviewed restaurants on this list.
    The Irish capital of Dublin, meanwhile, has the most gluten-free establishments, with a huge 330 to choose from, while Amsterdam and Barcelona also feature prominently thanks to their variety of top-notch gluten-free fodder.
    Finally, a special mention must go to Auckland, the sole representative of Australasia in this list, with the largest city in New Zealand rounding out the top 10 thanks to its 180 coeliacsafe eateries.
    The full top ten gluten-free cities are shown in the graphic below:

     

    Jefferson Adams
    Celiac.com 06/21/2018 - Would you buy a house advertised as ‘gluten-free’? Yes, there really is such a house for sale. 
    It seems a Phoenix realtor Mike D’Elena is hoping that his trendy claim will catch the eye of a buyer hungry to avoid gluten, or, at least one with a sense of humor. D’Elena said he crafted the ads as a way to “be funny and to draw attention.” The idea, D’Elena said, is to “make it memorable.” 
    Though D’Elena’s marketing seeks to capitalizes on the gluten-free trend, he knows Celiac disease is a serious health issue for some people. “[W]e’re not here to offend anybody….this is just something we're just trying to do to draw attention and do what's best for our clients," he said. 
    Still, the signs seem to be working. D'elena had fielded six offers within a few days of listing the west Phoenix home.
    "Buying can sometimes be the most stressful thing you do in your entire life so why not have some fun with it," he said. 
    What do you think? Clever? Funny?
    Read more at Arizonafamily.com.

    Advertising Banner-Ads
    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au

    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com