Anyone with celiac got negative antibody tests??

[Saba82]

My doctor just emailed me that my celiac antibodies tests are normal,even though I have mild atrophy in duodenum. He said let’s wait for genes tests results. I googled as usual and there are different causes of villi atrophy which is really scary. Now I’m even more anxious because I thought the reason of iron deficiency and villi atrophy was caused by celiac. What if it’s something worse? Did anyone have celiac disease with normal antibodies tests?

[Cooper27]

I once went to a Q&A, a woman there was confused whether she had coeliac, as 2 biopsies had come back positive but 3 blood tests had been negative. The biopsy is the gold standard, so if the biopsy is positive, you have coeliac disease.

I get a skin rash every time I eat gluten, but my blood test was negative. I looked into how common IGA deficiency is (which gives a false negative). The number was something like 2%, so uncommon but not unheard of.

[Saba82 in reply to Cooper27]

But does biopsy shows celiac or just villi damage? I’m confused about that part. Cause google says that there are might be different causes of villi damage. It says if you get negative blood test for celiac it should be different reasons for villi damage

[Cooper27 in reply to Saba82]

Technically I think the biopsy just shows Villi damage, but it's most likely caused by coeliac disease, so they'd usually diagnose you with CD at that point.

This page is semi-helpful, it's what I looked up when I had my negative result, as it talks about the alternative tests:

coeliac.org.uk/information-...

[Hidden]

Blood tests always negative for me, but all the symptoms and side-effects/damage. Never had endoscopy, and too late now as decided to just declare myself gluten free. Genetic test is not a good diagnosis as nearly half population have the gene but only 2-3% develop coeliac. There is a gene test to test if you actually produce the antibody for the coeliac test, which a % don't even though they have coeliac - is that the test you are having, or just the basic gene test for coeliac? A lot fall into this 'grey' area, and unfortunately you may have to find your way on this one as GPs and Gastros not very good at sustaining interest in terms of coeliac if tests are negative. After all testing done, and if you're none the wiser, good idea to go gluten free and see how that works out for you. You can always bargain another endoscopy at a later point to see how the damage/repair is going.

[Saba82 in reply to Hidden]

My doctor emailed me today. He said genetic panel consistent celiac disease,it’s obviously mild,nothing more serious. Strict gluten free diet and repeat biopsies in 3 months. Since I have mild damaged villi and iron deficiency so it’s kind of correlated to each other and it might be that my antibody test was false negative. Due to stress I hadn’t eaten much a week before my blood test. I mean gluten stuff. I don’t know. But I always felt bad after whole wheat bread and I was wondering why. Not sure again about my diagnose,will talk to doctor next week

[Saba82]

I do live in Los Angeles ,and my doctor ordered celiac panel. He said antibodies were normal and let’s wait for genes test .

[nellie237 in reply to Saba82]

Hi Saba,

I'm so sorry that you haven't had a conclusive result, and how worrying that must be for you. I get the impression that your Doctor is still convinced that you have coeliac despite the negative blood result.

Next time you talk to the Dr ask if he tested for IGA deficiency. I don't know the complexities of it, but as Cooper27 has pointed out, people with IGA deficiency don't show coeliac antibodies in blood testing.

If your Doctor hasn't already tested you for this, you can test pretty quickly privately here with Medichecks, which may put your mind at rest. (loads of thyroid patients use Medichecks finger prick testing)

medichecks.com/products/imm...

[Saba82 in reply to nellie237]

Thank you. I emailed my doctor,he is actually very kind person,responding to my emails right away. He just said antibodies were normal. I started bombarding him with a lot of questions. I sent him the list of all the diseases that might affect villi besides the celiac and he said that those would have been checked by pathologist. So I’m assuming it means I don’t have those diseases. Since they mentioned the Marsh score it’s probably celiac. I don’t know. Anyway,he said let’s wait for genotype test and we’ll talk after…

[Saba82]

My symptoms were occult blood in stool and iron deficiency. I really don’t know what’s going on with me. I’m so scared. I was happy that they found out the reason and now it’s unclear. Still need to wait for genes test

[Narwhal10]

Hi Saba82,

Ask for a copy of the report - you can see if you had the IgA blood test (which isn’t that good) or the Ttg blood test - 95% of results are correct. Like Cooper27 said, ‘You have mild atrophy by endoscopy’ so that is the gold stand of diagnosis of coeliac disease. You can ask the gastro ‘What is my Marsh score please ?’ (A figure from 0 to 4).

Unfortunately, gastroenterologists deal with a lot of gastro issues. The gut is 25 ft long. That is pretty long. So, yours may not take a special interest in coeliac disease.

I am sorry that you are more anxious now. Iron deficiency is very common with coeliac disease as I’ve said before so is anxiety/depression. This could be for a number of reason but include we are fatigued (this is not tiredness- it’s a medical word to explain exhaustion), we feel faint because we cannot absorb food and the nutrients for our body and mind. Or bodies are struggling - it really needs lots of TLC.

Now, I hope you have heard of the happy hormone, serotonin which we make from the food we eat. A lot of serotonin is found in the gut. There’s also another chemical we have called GABA which is the calming messenger. For some people, gluten has a great impact on their ability to make GABA so, they struggle to switch off. They are tense, panic, have feelings of dread. I’m not saying this is the case with you.

I’m not a functional doctor or even a doctor but it’s worth directing your attention towards learning about coeliac disease and how you can heal your body and mind. It’s a holistic approach as the 2 work together.

beyondceliac.org/living-wit...

😊

[MorganSpice in reply to Narwhal10]

Hi, I've just joined also. Recently diagnosed and getting to grips with new lifestyle/way of life. I'm wondering why you have, in your two posts on this comment, focussed so much on emotional/brain aspect of coeliac when post is more about the actual villi damage and diagnosis. I think the poster is anxious owing to the confusion over the diagnosis/non-diagnosis, but you seem to have put the ball back into his/her court by implying there is somehow something wrong with their brain and emotions as a result of coeliac and that there is something amiss emotionally as a result of coeliac, not that the poster is anxious over diagnosis.

[Saba82 in reply to MorganSpice]

Well first I was anxious about the celiac,but after I was explained that it fixable with diet I was kind of ok. But know my antibodies are normal,so I’m worried what’s going on. I don’t know. Doctor said let’s wait for gene test result

[MorganSpice in reply to Saba82]

Ok, that sounds sensible. Hope it's productive.

[Narwhal10 in reply to MorganSpice]

Hi MorganSpice,

Welcome here. I did answer which reinforced Cooper’s post with regards to villi atrophy. Yes, being newly diagnosed can be an eye opener and having to learn a new way of life can be pretty challenging. I do apologise if I have confused or upset you in anyway that’s never my intention.

Saba posted previously and we were privy to her greatest fear which I acknowledge and my heart goes out to them. They disclosed other information and behaviour so again, I took that on board. I tried to respond kindly with all of that in mind but with 1 piece of medical literature to say look this may be the reason and trying to reassure them.

They have since posted and maybe you’ll get a better understanding when you read it.

Coeliac disease (and non gluten sensitivity, wheat intolerance) has over a hundred symptoms- it’s not just our guts that our affected. There’s something called extraintestinal symptoms (outside of the guts). It’s quite apparent with dermatitis hepaformis (you can see the skin, lots of symptoms are internal). You can’t see that someone feels faint until they actually do.

Western medicine tends to part the body up, gastroenterologist is just the guts, but as I’ve said there’s over 100 symptoms you may see a cardiologist, a dermatologist, a haematologist. Instead of looking at the body as a whole because it’s all interconnected and everything has a knock on affect. The average length to diagnosis is far too long between 5 to 10 years and there are still many undiagnosed. Prof Dave Sanders (gastro) chairman of coeliac UK wrote a book which is a great easy read if you want somewhere to start. One chapter is on neurology Professor Marios Hadjivassilio who runs the Ataxia Centre in Sheffield.

I don’t think this is the appropriate place to share my story as it’s Saba’s post.

Best wishes 😊

[Saba82 in reply to Narwhal10]

Thank you so much for all this information :). Do you know if Marsh score is specifically related to celiac disease?

[Cooper27 in reply to Saba82]

The marsh score is explained at the bottom of this page:

healthunlocked.com/api/redi...

[MorganSpice in reply to Narwhal10]

Thank you for that. That is very helpful information. I'm looking forward to using this forum more.

[Saba82]

It says Marsh 3a but I don’t know about antibody test. I got kind of calm when they said it’s celiac,because I related hand tingling and iron deficiency to that. Now I’m thinking if it’s not celiac what can cause mild villi atrophy? It’s a long list of immune deficiency diseases and very dangerous. When I sent him the list of diseases he said pathologist would have been checked those. But it also says that lymphoma and HIV can cause villi atrophy. I had c section 3 years ago. I don’t know I’m going crazy. Whole my family was screaming at me today,like stop doing that!I will wait for gene test result and then do follow up with my doctor . He was so sure that it’s celiac disease, I don’t understand negative antibodies. Maybe it’s negative for now

[Narwhal10]

Hi Saba82,

You have coeliac disease - you have a Marsh score. Lots of us aren’t told our Marsh score. Your doctor may be being thorough as you are concerned about your son. I don’t know I’m not them. But every health practitioner is responsible for their own practice.

Now this article may be long, boring and technical but it’s long established that coeliac disease (and non celiac gluten sensitivity NGCS, gluten intolerance) affects the brain. Have a look at page 4 and page 8.

ncbi.nlm.nih.gov/pmc/articl...

The most important thing is managing your anxiety. Taking your anti depressants. If you pray, meditate then great. If you know how to self soothe and ground yourself. If you don’t, learn. There’s breathing exercises, there’s a technique called the butterfly hug which you can do each time you have an intrusive thought.

Illness not only affects us but our loved ones and our relationships.

Seek a nutritionist which you mention in a previous post, so they can tell you how to heal your gut. Not only your diet but taking gut support things like collagen.

Take good care.

🐳

[Saba82 in reply to Narwhal10]

Hi Narwhal. So my doctor emailed me and said that genetic panel consistent of celiac disease. I will make an appointment and talk to him. He said strict gluten free diet and repeat biopsy in 3 months.So I have marsh score,positive genetic test and normal antibodies. Does it mean that I have celiac and antibodies was false negative?

[Narwhal10 in reply to Saba82]

Hi Saba82,

I am not a doctor, it is them you need to be listening to. Not me, I’m just a random person. It is only a doctor that can diagnose and explain properly. But, why do you think they have put you on a STRICT gluten diet ? Please ask yourself that.

To answer your question, the Marsh score is named after Professor Michael Marsh who had coeliac disease himself. So, he had a personal and professional interest. You can’t get better that that can you ? 😊

theglutensummit.com/team/mi...

As it says, his work was ground breaking in the ‘gluten’ field - nothing else.

‘The Marsh scale is unique and it was historical in coeliac disease mucosal pathology (cell and tissue) characterisation and interpretation.’ (British Society of Gastroenterology, 10 Aug 2021).

Now, when your bloods and biopsies are sent to a lab, a pathologist (specialised doctor in cells and tissue) or biomedical scientist look at a whole array of things under a microscope and lots of other tests which is way beyond me. Then they send a long report back with medical words with figures, measurements and comments. The doctors we see, don’t like to confuse us, so, they keep it simple. We haven’t spent 5 years studying and then another 8 years to become a specialist so, they say things we understand.

Cooper27 sent you a link, explaining the Marsh score, in simple terms. It also mentions the depressions in the lining of the intestines (these are called crypts) AND villus atrophy. But a Marsh score, from what I gather, (again I’m not qualified) really takes into account, cells from one part of an area of the small intestine, cells in another part of the intestine, membranes, those crypts and villus atrophy. Maybe there’s other things - I don’t know. Unfortunately, focusing on just one aspect and googling that will feed into your anxiety.

Nellie237, Cooper27 and I have all said about IGA deficiency which may explain the normal antibodies. Nellie gave you a solution, get a test whilst in London. Hopefully, once you speak to your doctor, THEY can explain, confirm things for you and answer your questions. 😊

And to see if you’ve done your homework on coeliac disease - what was Prof’s Marsh’s nickname ? 😉

[Hidden]

I was always negative on bloods but very definitely extensive villi damage on biopsy. Second biopsy showed gf had healed most of the damage. No further biopsies since and I’ve assumed all good - wondered if I should argue for another biopsy to be sure but along came COVID…Long and short of it yes you can be coeliac without the bloods showing it. Good luck x

[Hidden in reply to Hidden]

Were you automatically referred for biopsy even though you had a negative blood test, and if so was it on the basis of your symptoms (I ask as someone who has negative blood test but never got referred for biopsy)?

[Saba82 in reply to Hidden]

Thank you

[Hidden]

It was a bit of a battle to get the biopsy but in fairness I was totally rubbish about going to the docs to get it sorted. Symptomatic since my teens but affecting my life by my 40s, diagnosed early 50s. After a few negative coeliac tests my (wonderful) GP referred me to local gastro. He was great (has a coeliac daughter) and said I'm sure you're not coeliac but let's double check with biopsy before we look elsewhere. I think we were all rather surprised

Weirdly I dont think I'm IGA deficient, so no idea why my bloods were always negative. In fairness I think one of the many was "borderline" but not enough for a GP to do anything (we only spotted it look back many years later).

This explains IGA deficiency in case it's helpful: coeliac.org.uk/information-...

[Narwhal10 in reply to Hidden]

Wow Tillyxx,

That’s quite a history and thank goodness for that GP. It’s amazing when we trawl back through the years and have ‘put up with things’ so it’s the norm!!

Yes, as a teenager I showed symptoms. But in my early 20’s, gastro symptoms really kicked off. But I’m introverted by nature (had to learn social skills and assertion), to visit my male GP about ‘embarrassing incidents’ would have been absolutely mortifying. Had my own ways of dealing and hiding it. Twenty odd years later was finally checked. 😊

Hope all is well with you.