Russ H

Pellagra is symptomatic B3 deficiency, which may include inflamed skin. Dermatitis herpetiformis is a cutaneous manifestation of coeliac disease where auto-antibodies are deposited in the skin and cause inflammation. They are separate conditions, although undiagnosed coeliac disease could lead to pellagra. Skin samples for DH show characteristic deposits of auto-antibodies, which do not occur with pellagra.

8 minutes ago, TYH said:

okay thanks so much!

Good luck. It can be a real pain but is worth the effort.

15 minutes ago, TYH said:

It was from their personal experience. So are you saying that there is no way to experiment with small traces of gluten in the diet?

No, you can't do this. It has been tested extensively with lots of research. Coeliac disease is not an allergic type reaction where you can increase tolerance by gradually increasing exposure. The immune reaction in coeliac disease is more akin to fighting off a virus - every time the body is exposed to gluten, it boosts antibodies and T-cells and these are what causes the symptoms and damage. Once you boost them, it takes months to come down. It is essential to keep gluten exposure to very levels to avoid an immune response. Less than 10 milligrams per day is generally considered a safe level for most people. The lower the better. There may well be treatments for coeliac disease in the future but at the moment, complete abstinence from gluten is the only treatment.

1 hour ago, Shan_ said:

Thank you! That makes sense she would need to continue eating gluten until she has a definite answer. I’ll definitely get more testing done and ask for the total serum IgA. Thanks for your help!

As it is a low positive, certainly worth getting total IgA tested. They should also be able to test for deamidated gliadin peptide antibodies, which has various acronyms including DAGL, DMG and DGP.

I wouldn't call it very odd as there is so much variation between people.  See what happens with your IgA test and endoscopy

A paper quoted in this review states:

Quote

Notably, as shown in Fig. 1 of the study by Hoerter et al., the serum concentration of DGP antibodies cannot discriminate between DGP-positive celiac disease patients and cases regarded as “false positives.” Therefore, patients with discrepant results (tTG negative and DGP positive, or vice versa) should undergo duodenal biopsy.

The celiac disease That Pays Dividends: More Than 15 Years of Deamidated Gliadin Peptide Antibodies

So, it is certainly possible to have -ve tTG IgA with +ve DGP IgA and have coeliac disease.

2 minutes ago, Scrapmanson said:

Why perplexing? What r your thoughts on this? I have no idea, unless there's something else that can show slightly high dgp? 

Coeliac disease has a complicated and not completely understood immune process. On top of that, individuals respond very differently.

One of the proteins within gluten called gliadin is resistant to digestive enzymes and is not completely broken down to short peptide chains for absorption. The remaining large fragments are quite immunogenic. If it gets into the wall of the gut, one of the known fragments binds to an enzyme called tissue transglutaminase (tTG). As well as binding to the gliadin fragment, tTG removes an amide group creating a positively charged complex that is highly immunoreactive.  Immune cells chomp this complex up and present the components to other immune cells, leading to an immune response both to gluten and tTG. It is a complicated process but it bypasses the mechanisms to avoid self tolerance i.e. responding to tTG.

When the complex is chomped up for immune response, one of the things that is recognised is deamidated gliadin. Your results show a low positive to this but not to tTG. Low positive tTG can be caused by various conditions such as liver inflammation and Crohn's disease.

A low positive DGP alone is curious.

31 minutes ago, Scrapmanson said:

Yes it's also <15

That is curious. In children, DGP can show before tTG antibodies. You are an adult and have been symptomatic for 7 years and yet have a borderline positive DGP but no tTG.

If you are IgA deficient, you are not showing up on IgG so that would be perplexing.

Interesting.

20 minutes ago, BeckyH25 said:

So basically I have to have the biopsy if that’s what’s suggested by the consultant on Saturday 😞. I’ve heard it’s not very nice in the UK

BeckyH25,

That is entirely your choice. I don't think the UK is particularly bad for endoscopy procedures. My mother had one with sedation and couldn't remember it afterwards. In my experience, worrying about a procedure is far worse than the procedure itself. The NHS has been cut to the bone - consultants do not offer procedures that are not medically justified.

Russ

8 hours ago, trents said:

Russ314, you said: "Some people e.g. with IBS report that avoiding gluten makes their symptoms improve. This could be something to try once the possibility of coeliac disease has been eliminated, and possibly doesn't need to be as strict a diet."

But what if BeckyH25 has NCGS? Are you saying she doesn't nee to be as strict in avoiding gluten?

I am not suggesting that for NCGS. If someone does not have blunting of the villi and does not have antibodies indicative of coeliac, is it worth eliminating gluten to a level below that which avoids symptoms? Take IBS - in some cases it seems to be antagonised by gluten even if gluten is not the direct cause of the condition. If avoiding major sources of gluten such as bread and pasta is sufficient, is it worth trying to get down to 10 mg per day, which is quite onerous?

51 minutes ago, Scrapmanson said:

Hey guys new here, I've flet horrible and can't seem to get any answers, just trying to see if this is possible celiac or something else. So this long road started about 7yrs ago my daughter got real sick and I started having burning stomach and lost some weight and such, so started going to Dr, for blood work and I got fobed off. Well since then I've had more issues and I'm still only diagnosed with gastritis and ibs. About 3 yrs agoI had CT scan all Clear, colonoscopy all clear, endoscopy with biospy showed mild chronic gastritis, blood work always good except slightly high mpv 11.7 with 11.6 as the standard. My symptoms include burning stomach, abdomen pain, back pain, bloating, tons of gas, white tongue, large sticky stool, floating stool, constipation, loose stool, I'm sure a few things I'm missing. Anyways had a celiac blood test done recently, and I'm scheduled for another endoscopy in 2 weeks. Here's my test results. I did go in today and ask for a total iga serum test, waiting on results. Thanks! 

Ttg iga neg .5<15

Ttg igg neg .8<15

Diam igg neg .4<15

Diam iga pos 22.5

I take it the later 2 tests are for deamidated gliadin peptide antibodies? If so, do you have the standard range for the positive one?

17 minutes ago, BeckyH25 said:

Thanks for your reply Russ.

I’m pretty fit and healthy so I can’t see it being anything else. I don’t suffer with pain only bloating and an uncomfortable feeling plus, I get heart palpitations when I eat heavy meals like a sandwich with fries (it’s like I’m anxious). My grandma also has Coeliac disease.

Could it be I just need to try stay away from gluten? 

 

Coeliac disease varies greatly in symptoms and severity between people. In fact most people do not realise that they have it. It is always worth treating with a gluten-free diet as symptoms can flare up at any time, and silent disease can still cause gut damage, food malabsorption, anaemia, osteoporosis and raised cancer risk among other things. I never had any gastrointestinal pain as such even though I was quite ill for many years.

If you do have coeliac disease you need to follow a strict gluten-free diet for life. This is actually quite onerous and restrictive with regard to eating out and sharing a kitchen with other people as you need to keep your daily gluten consumption to less than 10 milligrams. Just a few breadcrumbs can make you ill and boost your auto-antibodies.

For this reason, I would like to be sure that I had coeliac disease or non-coeliac gluten sensitivity before I embarked on such a diet.

It is also worth having a formal diagnosis so that you can be followed up medically, and also in case you need medical care in future e.g. in hospital.

Some people e.g. with IBS report that avoiding gluten makes their symptoms improve. This could be something to try once the possibility of coeliac disease has been eliminated, and possibly doesn't need to be as strict a diet.

People having endoscopy are offered sedation, which makes it a lot less stressful.

2 minutes ago, BeckyH25 said:

 

Hi Trents,

Are you a medical profession?

I can’t stop thinking about my results it’s driving me crazy!

In your opinion as I tested positive 29.1 for my TTG-IGA 

however, I tested negative for my IGA endomysial AB results what does that mean to you?

I really don’t want to have a biopsy done. 
 

Do my results sound high to you? Or could it be I maybe don’t have coeliac disease?

Thank you for your help so far. I’m finding it difficult to understand and waiting until Saturday is really doing my head in.

Both tests you had done measure the amount of IgA anti-tTG2 antibodies you have in your blood. The tests use different processes: the standard IgA tTg test is more sensitive than the IgA EMA test. The reason that you tested positive only on the IgA tTG test could be because your levels are only moderately positive.

There are other conditions that can cause raised levels of IgA anti-tTG2 antibodies in your blood stream such as Crohn's Disease, liver inflammation and Type 1 diabetes. High levels of IgA anti-tTG2 are very likely to be due to coeliac disease but borderline levels could be due to coeliac or another condition.

The key finding is that the concordance rate for non-identical twins is about 10% as against 75% for identical twins. Given the environmental commonality both prepartum and postpartum birth in both cases, this suggests that it is largely heritable.

There is another more recent twin study from Sweden below. They estimate a concordance rate of 50% for identical twins with a heritability of 75% and 25% environmental.

Heritability of non-HLA genetics in coeliac disease: a population-based study in 107 000 twins

1 hour ago, MrsTurner said:

Thank you so much for your reply. I wasn't aware of the low total IgA- you would think they would test that as standard wouldn't you if it made a difference. I will have a look at the home test kits in the meantime.

The NICE guidelines suggest testing for total IgA as well as IgA tTG. Might be worth referring this your GP to this if it hasn't been done.

https://www.nice.org.uk/guidance/ng20/chapter/Recommendations#serological-testing-for-coeliac-disease

Other tests that might be worth considering for home testing include IgA anti-DGP, IgG anti-DGP, and IgG tTG. It is also possible to have a genetic test to see whether you are susceptible to coeliac disease by seeing what type of HLA gene you have. Almost everybody with coeliac disease has either HLA-DQ2, HLA-DQ8, or HLA-DQ2.2, and anyone not having one of those halotypes is unlikely to have coeliac disease.

Home tests are fairly accurate although not as accurate as an accredited laboratory. I found several UK suppliers - I have not used them, have no connection and am not recommending them, I am just giving this as an example of what is available.

Combined IgA and IgG anti-tTG:

https://www.personaldiagnostics.co.uk/coeliacscreen.html

Combined IgA and IgG anti-DGP:

https://homehealth-uk.com/all-products/prima-home-coeliac-celiac-disease-wheat-gluten-intolerance-test/

IgG anti-tTG laboratory test:

https://www.cerascreen.co.uk/products/gluten-intolerance-test?variant=38260235591

5 hours ago, MrsTurner said:

Did you suffer from any withdrawal symptoms during the first week?

Not that I recall. I felt lousy prior to a gluten free diet and then gradually improved over 9 months. Going back on gluten for testing was very unpleasant indeed.

2 minutes ago, MrsTurner said:

Hi Russ, Thank you.  I had Tissue transglutaminase IgA level which came back as <0.5 U/mL. GP said it would have to be over 15.0 to be positive for Coeliac.  I did read that there were other tests that can be done but he said we don't do those tests routinely in the UK and the investigation would end there.

Did they also measure total IgA? A minority of people are deficient in IgA and so don't show up on the standard test. More tests are becoming available in the UK but unfortunately the NICE guidelines are very conservative regarding testing.

There a few very knowledgeable people on the forum regarding NCGS who will be of help but most of them are on US time.

It does take time for recovery to occur on a strict gluten free diet. I noticed gradual improvement after about a week.

Hello, and welcome to the forum. Many of your symptoms are common with coeliac disease. Do you know what tests you had for coeliac disease and what the figures were?

Health service labs in the UK will often run an endomysial antibody test on all positive anti-tTG2 tests. The whole thing is in a state of flux with developing knowledge and practices. The anti-tTG2 tests appear to be pretty much as reliable as endomysial tests as the technology has improved (human recombinant tTG ELISA). Since they both test for antibodies to tTG2, seems to me that they would be better testing for deamidated gliadin antibodies instead. I don't know about now, but the endomysial test used to require technicians looking through a fluorescence microscope at slides of various dilutions - so it was subjective and quite course: a low positive anti-tTG2 might not show up on endomysial antibody assay, not because they measure different things but because one is less sensitive than the other.

https://www.gloshospitals.nhs.uk/our-services/services-we-offer/pathology/tests-and-investigations/tissue-transglutaminase-ttg/

5 hours ago, knitty kitty said:

Please provide a source or reference for this statement.

Sources give varying figures. In young children, the half-life is a little less than 2 months:

https://www.tandfonline.com/doi/abs/10.3109/00365513.2015.1124449

This study on older children in India indicated a fall of about 50% in IgA anti-tTG2 after about 6 months:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6482799/

In this study, "by 4 months, 44% of patients had a ≥ 50% reduction in anti-tTG antibodies"

https://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2009.04039.x

In this medical guidance from Israel "One of the tests used most often, tissue transglutaminase (tTG), has a half-life of
six months."

https://www.bidmc.org/-/media/files/beth-israel-org/centers-and-departments/digestive-disease-center/celiac-center/2faq-diagnosing-celiac-disease-feb-2016.ashx?la=en&hash=14EEDD7CF8431C4B098941F697DCD8F6E97901B2.

This small study shows antibodies roughly halving by 6 months (combined IgA and IgG):

https://www.researchgate.net/publication/332361081_Higher_serum_IL-17A_along_with_anti-tTG_antibodies_for_prediction_of_refractory_celiac_disease

University of Chicago Celiac Disease Center says 3-4 months:

https://www.cureceliacdisease.org/faq/what-is-the-half-life-of-antibodies-in-the-blood-serum/

This review paper suggests IgA-tTG has a half life of 4 weeks:

https://journals.sagepub.com/doi/pdf/10.1258/000456306776021599

This study of IgA deficient people showed an IgG anti-tTG half life of a year or more:

https://gut.bmj.com/content/52/11/1567

This training handbook suggests an antibody half-life of 3-6 months:

http://www.gastroenterologybook.com/Small-Bowel/Coeliac-Disease/Coeliac-Management

9 minutes ago, jd222 said:

No dairy and haven't had oats in a few months (if I do they are certified gluten-free).

For meds I only take antacid, which is labelled gluten-free and doesn't have any ingredients that stand out to me (it's the Rite Aid brand).

I use colgate products (again, that are labelled gluten-free; sorry for being a broken record) for dental hygiene and I use Blstex Medicated Lip Balm. 

Says it should be <15 U/mL and I have 18.5, which doesn't read to me as a sign that I've been eating gluten for long, but I'm not sure. 

That result is borderline positive. Serum antibodies decay with a half-life of 3-4 months. From your comment suggesting sporadic gluten consumption when eating out, it is not particularly surprising.

I don't know for sure. Coeliac disease is a complicated immune disease that varies greatly between individuals. The gold standard is to ingest at least 2 slices of wheat bread daily for at least 6 weeks prior to blood testing. For endoscopy, 2 weeks is considered sufficient in some quarters. Antibodies are generated in the intestinal wall during the immune response and escape into the blood, so the blood serum response is delayed compared with the intestinal response. The antibody levels vary greatly between people: some people have more IgA class, some have more IgG class, some have more anti-gliadin, some have more anti-tTG. Once you stop eating gluten, serum antibodies decay with a half-life of 3-4 months. Obviously, I cannot recommend what course of action for you to take. However, I would recommend a member of my family or close friend in such a case to resume eating gluten and get tested ASAP, then go strictly gluten free. A telephone consultation should be enough to get a blood test booked with the magic words of chronic IBS and gastrointestinal symptoms.

Just now, Shem said:

Okay thanks for this, curiously I had bloods done recently for something else and my vit d was deficient and I had elevated thyroid peroxidase antibodies. Was told it was nothing to worry about 🤔 A bit of a jigsaw puzzle but will definitely get to the bottom of it. Thanks for your advice! 

Yes, that is another couple of pieces in the jigsaw. Vitamin D deficient, autoimmune thyroid antibodies - they are associated with coeliac disease. Of course, it may not be coeliac disease. I would urge any of my family or friends with what you have described to get down to the quack and get tested. In the worse case, it would eliminate a possible cause.

Just now, Shem said:

Believe it or not only a few days. The dizziness that I have had on standing up for the last 8 months has disappeared, I have gone down a size in clothes just from bloating/water retention and my wedding rings which I have not been able to get on my fingers for 2yrs now fit perfectly. 

I think it could be worth your getting tested. There are medical advantages to having a formal diagnosis. It is a blood test rather than a medical intervention, and it would be beneficial to know whether you do indeed have coeliac disease. Your GP would refer you for testing if you ask for it. The half life of coeliac antibodies is 3-4 months, so if you get tested soon even on a gluten free diet it would probably show whether you have the disease. Best would be for you to resume eating gluten, get a referral for a blood test that could be in a few days and then go back to a strict gluten free diet.

Just now, Shem said:

Thanks for this! 

I am reluctant to approach the GP as you can imagine having had a 'serious heart condition' for close to 30yrs the GP is fearful to do anything without cardiology's permission. Well that is my experience anyway, additionally I have had a defibrillator fitted after the CA and I am reluctant to add gluten back into my diet which may cause an arrythmia that stopped my heart in the first place. My defib is set to shock me if that were to be the case. Hopefully the cardiologist takes me seriously enough to check if it improves my heart function in the first place. Ironically there has been no change to my heart function since 2011 - wouldn't it be great if the inflammation went away. ❤

How long have you been gluten free? Have you noticed any change in your other symptoms while excluding gluten?

Thanks for the heads up. What did you use for the gluten-free flour out of interest?

35 minutes ago, jd222 said:

Hi all,

I have been on a gluten free diet since July 2017 after I was diagnosed with it. I revamped my kitchenware, I'm strict with my diet, double check ingredients, etc. I have had a handful of hiccups (from eating out mostly) and I'm pretty sensitive to contamination. My new gastro wants me to test every year (IgA anti-tissue transglutaminase test) and it came back positive for celiac even though I'm still on my diet. Is it possible to get a positive result while gluten-free?

I haven't had any symptoms that I can think of. Usually I get fatigued, headaches, and some gastro problems but I haven't had any problems (other than from a lack of fiber honestly). The only thing I can think of that would contain gluten is the Coca Cola I drink (which I'm certain should be fine) and some edibles I have had (which are labelled gluten-free, although not certified). Has this happened to anyone else? I've sent a message to my gastro to follow up and I'm not concerned I have RCD, but I do want to ease my mind a bit. 

Can you post your test results and lab standard ranges if you have them?