Blindsided by positive test results

[Fairy92]

Hello, Celiac Community 

I never expected to be here right now. 

This afternoon my doctor called and told me a blood test she requested for me as part of a check up came back positive and suggestive of celiac disease 

When I look at the symptoms, it makes sense. 

My question is, what are the chances of it being a false positive? 

I have been referred for a gastroscopy to confirm the diagnosis but I'm stuck down a Google rabbit hole 

Any advice or knowledge is very much appreciated. 

Here are my results. I'm in New Zealand so they may be different measurements. 

Anti TTG IgA: 78.0CU (normal <20)

TTG IgA interpretation: weak positive 

Endomysial Ab: weak positive 

Deamidated Gliadin Peptide IgG: 27CU (normal <20)

DGP IgG interpretation: weak positive 

 

Thank you! 😊

 

[knitty kitty]

@Fairy92,

Welcome to the forum!  You're welcome to use the search function near the top of the page to search for things here on the forum.  Google rabbit holes can be very deep indeed.

These tests are specific to Celiac Disease so it looks like you're in the club!

A weak positive is a positive.  

Examining biopsies from the parts of the digestive system affected by Celiac Disease is a visual confirmation.  It will also give you a base line for checking on your healing progress.  

Do be aware you need to continue eating gluten until all testing is complete.  Not eating gluten consistently before testing can result in false negatives.

How can we help?

[trents]

What symptoms do you have and how severe are they? We hope your endoscopy/biopsy can be scheduled within a reasonable time frame so that you don't have to put off beginning the gluten free diet for a long time and can begin healing.

[Fairy92]

8 hours ago, knitty kitty said:

@Fairy92,

Welcome to the forum!  You're welcome to use the search function near the top of the page to search for things here on the forum.  Google rabbit holes can be very deep indeed.

These tests are specific to Celiac Disease so it looks like you're in the club!

A weak positive is a positive.  

Examining biopsies from the parts of the digestive system affected by Celiac Disease is a visual confirmation.  It will also give you a base line for checking on your healing progress.  

Do be aware you need to continue eating gluten until all testing is complete.  Not eating gluten consistently before testing can result in false negatives.

How can we help?

Thank you. Kitty kitty for your quick response. You never know in online forums what will happen. 

OK that is good to know. I think I was hoping they were wrong but it seems the chances of that are slim and would mean something much more serious is going on. 

I'm not sure if I'm over reacting but I feel like my life has just taken a major turn. I am genuinely devastated I can't eat the foods I used to love and take for granted. 

I will update on my results from the biopsy 💚

[Fairy92]

2 hours ago, trents said:

What symptoms do you have and how severe are they? We hope your endoscopy/biopsy can be scheduled within a reasonable time frame so that you don't have to put off beginning the gluten free diet for a long time and can begin healing.

My symptoms are swinging between diarrhoea and constipation, tummy pain, bloating and gas, excessive bruising all over my legs, fatigue, poor concentration and memory, elevated liver enzymes, joint pain and stiffness (is that one?), mouth ulcers that take a long time to go away, depression, very low energy and recently unexplained nausea

I put everything down to being a parent, starting anti depressant meds, my hip injury and taking pain meds, endometriosis and then just ignored some of the others. I would say my symtoms range from mild to moderate 

It makes sense now if I do have celiac. I had no idea it could be developed at 30. I thought it was something people are born with. My son has a lot of tummy issues but he tested negative for celiac. I wonder if I should get him re-tested? 

I know the public hospital has prioritised it as "semi-urgent" so I'm going to call the bookings line today. They don't want me continuing on a gluten diet either so want it done quickly. I'm eating my favourite foods and enjoying them while I can 😂😢

Thank you for responding! I wasn't sure if anyone on the Internet would care about a 30 year old mum of 2 young children from nz haha 😊

[trents]

Yes, celiac disease can onset at any stage of life. There is a genetic component that predisposes people to celiac disease but about 40% of the population carry one or both of the genes that (so far) have been linked to the development of celiac disease. Since only about 1% develop active celiac disease it is obvious that most with the genetic potential never develop the condition. The reason is that it takes some kind of stress event (such as a viral infection, but not limited to that) to turn the genes on, as it were.

Research tells us that there is somewhere between a 10% and 44% chance of first degree relatives of someone with celiac disease developing celiac disease themselves. To put it another way, if someone in your immediate family has active celiac disease, the first degree relatives of that person are somewhere between 10x and 44x more likely to develop celiac disease than the general population. Older studies put the figure at about 10% chance for first degree relatives while a recent large study done by the Mayo Clinic found it to be a 44% chance. All this to say that your parents and all your offspring and your siblings should get tested. The absence of symptoms does not mean that celiac disease has not begun. Many people have years of "silent" celiac disease with no or at least very minor symptoms until the damage to the small bowel villi reaches a critical point.

Concerning your son who has tummy issues but tested negative for celiac disease, do you know what tests were run on him for this? Children's immune systems are immature and if they have celiac disease they typically do not return positives on the tTG-IGA test like adults would. For children, a total serum IGA needs to be run to check for low IGA. Low total serum IGA will drive down individual IGA test values. The most valuable celiac disease antibody tests for children are the Deamidated Gliadin IgA and IgG. This might be helpful: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Your son could also have NCGS (Non Celiac Gluten Sensitivity) which some experts believe can be a precursor to celiac disease. The two conditions share many of the same symptoms. The difference is that with NCGS there is no inflammation of the small bowel villi so no antibodies are produced. There currently is no test for NCGS. celiac disease must first be ruled out. Of course, the antidote is the same for both, that is, elimination of gluten from the diet. Although NCGS does not damage the small bowel villi, it can damage other body systems over time, damage to neurological components being one of them.

The consensus of the celiac community is that most family doctors and pediatricians lack sufficient knowledge about gluten-related disorders to be reliable diagnosticians. Through experience, we have found that you need to go to appointments armed with information while being prepared to be respectfully assertive in order to get appropriate testing done.

Edited November 17, 2022 by trents

[Scott Adams]

1 hour ago, Fairy92 said:

Thank you. Kitty kitty for your quick response. You never know in online forums what will happen. 

OK that is good to know. I think I was hoping they were wrong but it seems the chances of that are slim and would mean something much more serious is going on. 

I'm not sure if I'm over reacting but I feel like my life has just taken a major turn. I am genuinely devastated I can't eat the foods I used to love and take for granted. 

I will update on my results from the biopsy 💚

If or when you end up going gluten-free, this may be helpful:

 

[knitty kitty]

2 hours ago, Fairy92 said:

My symptoms are swinging between diarrhoea and constipation, tummy pain, bloating and gas, excessive bruising all over my legs, fatigue, poor concentration and memory, elevated liver enzymes, joint pain and stiffness (is that one?), mouth ulcers that take a long time to go away, depression, very low energy and recently unexplained nausea

I put everything down to being a parent, starting anti depressant meds, my hip injury and taking pain meds, endometriosis and then just ignored some of the others. I would say my symtoms range from mild to moderate 

It makes sense now if I do have celiac. I had no idea it could be developed at 30. I thought it was something people are born with. My son has a lot of tummy issues but he tested negative for celiac. I wonder if I should get him re-tested? 

I know the public hospital has prioritised it as "semi-urgent" so I'm going to call the bookings line today. They don't want me continuing on a gluten diet either so want it done quickly. I'm eating my favourite foods and enjoying them while I can 😂😢

Thank you for responding! I wasn't sure if anyone on the Internet would care about a 30 year old mum of 2 young children from nz haha 😊

Of course, we care about you and your children!  Our Celiac tribe is everywhere, including New Zealand!  

Several of your symptoms are indicative of nutritional deficiencies.  Celiac Disease damages the small intestine where vitamins and minerals usually are absorbed.  Not being able to absorb these micronutrients affects our health.

There are eight essential B vitamins.  Deficiency symptoms of B vitamins can overlap.  The B vitamins all work together, so a B Complex containing all eight B vitamins is beneficial for healing.  

The symptoms of constipation, diarrhea, pain, gas and bloating, and elevated liver enzymes can be symptoms of Gastrointestinal beriberi, a form of thiamine insufficiency/deficiency.  Thiamine deficiency also results in fatigue, poor concentration and memory.  Depression, very low energy and unexplained nausea are also symptoms of Thiamine insufficiency/ deficiency.  

Thiamine and magnesium are required to provide energy for our bodies.  The brain uses as much Thiamine just thinking as a marathon runner's muscles would.  We need more Thiamine when we are sick or under emotional stress.  

Bruising can be caused by deficiencies in Vitamin B 12 and Vitamin C.  Mouth ulcers can be caused by B12 deficiency.  Have you been checked for anemia?  Anemia can influence Celiac blood tests to give false negatives.  

Joint pain and stiffness can be a symptom of low Vitamin D.  Vitamin D helps regulate our immune systems.  Endometriosis can be caused by deficiencies in Vitamin D and Thiamine.

Checking for nutritional deficiencies is part of proper follow up care for Celiac people.  Do discuss supplementing with vitamins and minerals with your doctor or nutritionist.  

I experienced severe vitamin and mineral deficiencies prior to my diagnosis.  The biggest help got was from research done by Drs. Lonsdale and Marrs....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

 

[Fairy92]

2 minutes ago, knitty kitty said:

Of course, we care about you and your children!  Our Celiac tribe is everywhere, including New Zealand!  

Several of your symptoms are indicative of nutritional deficiencies.  Celiac Disease damages the small intestine where vitamins and minerals usually are absorbed.  Not being able to absorb these micronutrients affects our health.

There are eight essential B vitamins.  Deficiency symptoms of B vitamins can overlap.  The B vitamins all work together, so a B Complex containing all eight B vitamins is beneficial for healing.  

The symptoms of constipation, diarrhea, pain, gas and bloating, and elevated liver enzymes can be symptoms of Gastrointestinal beriberi, a form of thiamine insufficiency/deficiency.  Thiamine deficiency also results in fatigue, poor concentration and memory.  Depression, very low energy and unexplained nausea are also symptoms of Thiamine insufficiency/ deficiency.  

Thiamine and magnesium are required to provide energy for our bodies.  The brain uses as much Thiamine just thinking as a marathon runner's muscles would.  We need more Thiamine when we are sick or under emotional stress.  

Bruising can be caused by deficiencies in Vitamin B 12 and Vitamin C.  Mouth ulcers can be caused by B12 deficiency.  Have you been checked for anemia?  Anemia can influence Celiac blood tests to give false negatives.  

Joint pain and stiffness can be a symptom of low Vitamin D.  Vitamin D helps regulate our immune systems.  Endometriosis can be caused by deficiencies in Vitamin D and Thiamine.

Checking for nutritional deficiencies is part of proper follow up care for Celiac people.  Do discuss supplementing with vitamins and minerals with your doctor or nutritionist.  

I experienced severe vitamin and mineral deficiencies prior to my diagnosis.  The biggest help got was from research done by Drs. Lonsdale and Marrs....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

 

My anaemia tests were perfect 

 

I had my second baby 18 months ago and during that pregnancy I had severe hyperemesis gravidarum. I didn't eat for a good portion of the pregnancy and was chronically dehydrated and in hospital. 

I wonder if that has contributed to coeliac presenting now? 

Those vitamin deficiencies definitely make sense 

Thank you for sharing all your knowledge! It is incredibly insightful. 

[trents]

Yes, the medical distress you experienced during pregnancy could definitely trigger active celiac disease if  the genes are present.

And knitty kitty raises an important issue connected with celiac disease, that being vitamin and mineral deficiencies. You would do well to invest in some gluten-free supplements, even now. That would not affect biopsy test results.

Edited November 17, 2022 by trents

[knitty kitty]

Yes, definitely!  

Hyperemesis gravidarum can cause Thiamine deficiency!  

Wernicke's encephalopathy in hyperemesis gravidarum: A systematic review

https://pubmed.ncbi.nlm.nih.gov/30889425/

And...

Wernicke's Encephalopathy following Hyperemesis Gravidarum

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5278861/

Thiamine deficiency during pregnancy can affect the baby, too.  Clinging baby syndrome is indicative of Thiamine deficiency.  Thiamine is essential for brain development.  You should bring this to your pediatrician's attention.  

Most doctors are not familiar with vitamin deficiency symptoms.  They are trained to prescribe pharmaceuticals that cover the REAL cause of illness.  You're not deficient in pharmaceuticals.  You're deficient in vitamins.

There's evidence that during thiamine deficiency, autoimmune disease genes get turned on.

Please take the time to read Dr. Lonsdale and Dr. Marrs'  research.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

 

I had a rough journey to my Celiac diagnosis, so if I can share what I've learned to alleviate another's struggle, my journey has been worthwhile.

 

[cnazrael89]

11 hours ago, Fairy92 said:

Thank you for responding! I wasn't sure if anyone on the Internet would care about a 30 year old mum of 2 young children from nz haha 😊

Great group of people on here, as you can tell from the awesome responses! I have posted multiple LONG posts and always get great advice, links to research and the support I was needing at the time! Don't be afraid to ask questions! I have asked a bunch on here and done a lot of reading on here by typing into the search bar at the top of the page what I was looking to find more info about and would read through the results. Take care!

[Fairy92]

3 hours ago, cnazrael89 said:

Great group of people on here, as you can tell from the awesome responses! I have posted multiple LONG posts and always get great advice, links to research and the support I was needing at the time! Don't be afraid to ask questions! I have asked a bunch on here and done a lot of reading on here by typing into the search bar at the top of the page what I was looking to find more info about and would read through the results. Take care!

Absolutely agree. I am so grateful to have found this community and to the people who take the time to give such detailed and helpful answers. 💚

[Rogol72]

You can feel quiet under the weather with a subclinical iron deficiency alone without technically being iron deficient anemic. Especially when we Coeliacs don't or can't eat the limited amount of iron fortified gluten-free foods. All my bloods have been perfect anemia wise and within the reference ranges ... the low end I might add, yet I was wasn't firing on all cylinders. So I supplemented with a low dose gluten-free iron supplement to get my numbers in the middle of the reference range and that's where they will stay ... and I feel much better!

This is an great webinar from the Canadian Coeliac Association about iron with a Hematologist, good for education purposes if nothing else. The more knowledge we have, the better equipped we are to look after ourselves.

https://www.youtube.com/watch?v=RJoQ1zEy80o

 

[Fairy92]

Hello fellow celiac family

 

I have my gastroscopy on Tuesday 20th December. I'm nervous about the procedure and what it will show. 

I still feel like this is all some big mistake haha. Maybe it's wishful thinking. 

I will come back with my results when I get them 😊

[knitty kitty]

@Fairy92,

We're right there with you!  

Everything will be fine.  

Many people go through the stages of grief around the time of their diagnosis, so what you're feeling is normal.  

{{{HUGS!}}}

[Fairy92]

Just a little update 

I finished my gastroscopy. 

I definitely don't remember it but I did keep asking for more sedation when I didn't need it! Hahah. 

 

They didn't see anything immediately obvious for celiac but they have taken biopsies to be tested. 

Is it normal to not have obvious signs on examination but then the biopsy comes back as positive? 

I have to wait 4 weeks which is frustrating. Probably longer as I will be on holiday. 

Keen to hear others experiences. 

Xx

[trents]

27 minutes ago, Fairy92 said:

They didn't see anything immediately obvious for celiac but they have taken biopsies to be tested. 

Is it normal to not have obvious signs on examination but then the biopsy comes back as positive? 

 

It is not unusual at all to not see any obvious damage during the scoping itself. This is usually the case unless the damage is advanced and severe. At any rate, you should now be able to start the gluten-free diet since you have had both kinds of testing done. Refer back to Scott Adams' post on The Gluten Free Diet 101.

Edited December 20, 2022 by trents

[Scott Adams]

Here is that article:

 

[Fairy92]

3 hours ago, trents said:

It is not unusual at all to not see any obvious damage during the scoping itself. This is usually the case unless the damage is advanced and severe. At any rate, you should now be able to start the gluten-free diet since you have had both kinds of testing done. Refer back to Scott Adams' post on The Gluten Free Diet 101.

The article was really helpful thank you. 

I have a lot of learning and transitioning to do. 

I will get to it tomorrow when my sedative has worn off haha

 

[Fairy92]

Hi Celiac community 

I finally have some results but nothing overly helpful yet. I am waiting for an appointment with my gastrointestinal doctor. 

This is what a GP said. 

"Your results were mostly normal. There was a small area of mild non-specific inflammation but it did not look like coeliac disease. Because they were not 100% normal, however, it would be worth discussing them with the gastroenterologist at your next gastroenterology appointment"

 

My bloods were:

 I'm in New Zealand so they may be different measurements. 

Anti TTG IgA: 78.0CU (normal <20)

TTG IgA interpretation: weak positive 

Endomysial Ab: weak positive 

Deamidated Gliadin Peptide IgG: 27CU (normal <20)

DGP IgG interpretation: weak  positive 

I've been gluten free for 3 weeks now and have noticed a big difference in how I feel. No more gas, much less bloating, no more nausea, even my bruising on my legs is less. 

 

However this GP seems to think its not coeliac. I don't know when I will be seeing the gastroenterologist so just interested in your opinions as you guys know a lot! 

 

I ate gluten prior to the gastroscopy of my small intenstine. 

 

Thank you! 

 

Felicity 

[trents]

12 minutes ago, Fairy92 said:

I ate gluten prior to the gastroscopy of my small intenstine.

Felicity 

How long were you eating gluten before the gastroscopy? Being gluten free for a period of time and then eating one gluten meal immediately before the procedure will not give valid results for the biopsy. You would have needed to be eating regular amounts of gluten for at least 6-8 weeks beforehand.

And with three different positives from your blood antibody testing, there is not much doubt that you have celaic disease.

Edited January 11, 2023 by trents

[Fairy92]

Just now, trents said:

How long were you eating gluten before the gastroscopy? Being gluten free for a period of time and then eating one gluten meal immediately before the procedure will not give valid results for the biopsy. You would have needed to be eating regular amounts of gluten for at least 6-8 weeks beforehand.

Yes I was eating gluten for years prior. I didn't stop until after the endoscopy.

[trents]

I added to my last post while you were typing. Please go back and read it.

[Fairy92]

39 minutes ago, trents said:

I added to my last post while you were typing. Please go back and read it.

My apologies I see it there 

 

Yes it is very confusing. I will continue with gluten free as it is helping me. Thank you for your reply 

😊