Help with results please

[lownook]

Hi I wonder if anyone can help? I have just received these Blood Test results from my GP. My rheumatologist asked my doctor to do the Coeliac panel tests. The doctor's receptionist states that the nurse has checked and it is negative.

I have continued to have multiple symptoms over the years, which initially, was diagnosed as IBS.

As per my rheumatologists advice, I have been eating Gluten for the last 8 weeks, prior to testing and my symptoms have become extremely bad. The Endomysial antibody IgA level states "not Tested" and there is no number or references for the Tissue Transglutaminase IgA level test result. I am so confused.. I want to just stop eating gluten but if I do and they say they need to test again because the 1st tests were not done, I will have to go through another 8 weeks of eating it again.

I do not see my rheumatologist again until January 2024 so any help would be much appreciated.

[Researchfan]

Hi lownook.

Sorry to hear. It’s difficult when you don’t get a clear result re coeliac disease. The best next step would be to try and discuss the result with your GP. It’s a long time to wait for your rheumatologist appointment. And as they did the test you need to know the way forward as you want to go gluten free, if you feel benefit from it. Have you been referred to a dietitian previously?

The blood test result is accurate that as far as your GP will be concerned is negative. The endomysial test is only done if the ttg test first is positive (or raised antibodies). As it was normal the lab would not do that test unfortunately. Though very rare it is possible to have positive endomysial test (which is more specific to coeliac disease, but a more labour intensive test for the lab); and negative anti-ttg test. I emphasise very very rare but not impossible. I only say this because while your anti-ttg test was negative and it’s unlikely coeliac, there’s always the possibility unless it’s completely ruled out by intestinal biopsy (have to be eating gluten containing diet before); or the genetic test that can all but rule it out. If you have the associated genes coeliac is possible and given your symptoms likely.

From personal experience, after years of elimination diets and two gluten challenges, negative coeliac disease screens but horrendous IBS and symptoms of coeliac, the genetic test done by my gastroenterologist ruled coeliac out for me. I’m allergic to wheat. Same symptoms and malnutrition.

Anyway, basically follow your gut on this, no pun intended.

Also it’s possible in early stages (or where there is not enough damage to the gut) to get a negative anti-ttg result. The ttg test being positive correlates with the extent of gut damage in the medical literature.

At the end of the day. If you’re told unlikely coeliac and no more testing. The outcome of a gluten free diet is the same.

Hope that’s helpful, sorry for a long reply!

[lownook in reply to Researchfan]

Hi Reasearchfan

Thanku for your reply, I just wish they had given me my level and the normal range, for coeliac, like blood test results usually do.

If it was zero then it is clearly not Coeliac, but if it is within range but high, then I know that if I continue to eat Gluten and I am tested again and it goes over range, I know that further damage is increasing the antibodies. I have never done a strict gluten free diet because it is hard, I cheat, I did not realise it caused a multitude of other symptoms, many that I have, that come and go.

I was diagnosed with IBS nearly 30 years ago and have never seen a dietician. I must admit it is so difficult trying to work out what causes my symptoms. I do not know if this is relevant, but my Total serum IgG level was below the normal range and my Total serum IgA is low but withing range? This is going to be discussed in January with my rheumatologist.

It is interesting that wheat gives the same symptoms because I ate some gluten free crackers and within ½ an hour my stomach had ballooned, along with gas and pain. I looked at the ingredients and it stated 95% oats. I do not know if they were the cause or the gluten containing food that I had eaten earlier in the day… Porridge does the same..

I will try and get an appointment with my GP and see what he says. Hearing you experience as really helped.

Thanks again x

[Researchfan in reply to lownook]

Glad to reply. I can sympathises what it’s like when you have symptoms and just want to be well. It’s taken me years to figure out what foods agree with me. I’m passionate about nutrition and science.

Totally understand you wanting your actual numbers! It’s frustrating not knowing that. Most labs NHS report the number and the normal range, but it can be reported negative or positive too.

Can help you out with this, usually (UK NHS). The normal range is 0 - 6.9 U/ml .

My numbers first time tested after being very low gluten diet for years, 1.5 U/ml. I had reintroduced sourdough wheat bread while following a ‘low fodmap diet’ for IBS under the dietitians advice. Guts Symptoms went horrendous/worse. Was advised to do a gluten challenge in order to test for coeliac again - 6 weeks gluten containing diet at more that one meal a day.

At this point I was struggling to gain weight (underweight), low iron, low folate, low vitamin D. All pointing to coeliac disease. Struggling to tolerate dairy too. The test was normal negative, 3 U/ml . So gone up. The gastro said I could continue with the gluten and retest again because of how ill. Then do an intestinal biopsy. I said I couldn’t. I felt like I had flu and running to the loo x times day wasn’t an exaggeration. They did the genetic test fortunately. You don’t have to be eating gluten for this. It took 12 weeks and the result was negative. Likely allergic to grains. So glad a clear answer re coeliac disease. However was advised to stick to same strict gf diet if helped.

Before this I was struggling to gain weight eating gluten free as alot of foods seemingly would bloat me/constipation/diarrhoea (but nowhere near like eating regular wheat). It wasn’t until this past 12 months of absolute strict wheat/gluten free diet following the gluten challenge and wheat allergy dx, that I figured out gf oats caused bloating and stomachache too! I’m mildly allergic to other foods too turns out, soya and rice that are in a lot of gf foods!

I’m currently on a two week elimination of dairy diet then will reintro. This is because I’ve never really got rid of the bloating although I’m hundred times better than was since correcting folate and iron deficiency.

Anyway hope this is helpful.

I suppose I’m saying try not to dwell on the numbers of the coeliac test because they can be raised normal and not have coeliac. Other autoimmune conditions can slightly raise them too transiently especially rheumatoid arthritis, IBD Crohns and colitis, type 1 diabetes. I also thought why is the number not zero. While the antiTTG test is the best test currently and suggestive of coeliac it’s less specific if that makes sense. It relates to the enzyme in the lining of mucous membranes. So the gut mainly but others too. I hypothesise other antigens not just gliadin from gluten effect this antibodies. The fact that it can be temporarily raised in other conditions suggests that. I’ve yet to find the research relating to other antigens/allergens. Though there is research and case reports that casein from milk will also affect this antibody in certain people.

(There are at home finger prick tests you can do to test for igA IgG antiTTG now. I’ve done that and had a positive result! Even though not coeliac. Hence my hypothesis re milk protein currently.)

Glad you can discuss your igG and igA antibodies with your rheumatologist. The GP will be limited on their advice likely and refer you to the specialist. Or they may suggest continuing the gluten containing diet to retest and refer you to dietitian while doing it. That’s your choice at the end of the day. You can say it makes too ill. And You never know the rheumatologist may be able to do the genetic test in January. (But I know it’s not mainstream for the NHS it depends on the specialist). But I totally understand if you suspect coeliac and want to persevere for a clear answer one way or the other!

x