Can Someone Help? Anti-gliadin Iga Positive

[bytey]

Hi,

I am beginning to despair and I am hoping someone out there can help or shed some light..

I had blood tests done last week and after the receptionist told me I had the 'all clear' I persevered and saw a different doctor in my practice to discuss the results. Turns out actually that I have an Anti-gliadin IGA positive reading of 27. I had exluded wheat and gluten before the test for 7 days. The doctor was not familiar with what to do with regards to a positive reading and will discuss with some gastro-enterologists who happen to be visiting the practice on friday. I mentioned I suspected an intolerance and she suggested gradual reintroduction of these foods and possibly probiotics but will write to me.

I would really like to know if an intolerance could possibly result in a positive reading for this test? And that I am not coeliac... I am really confused. I am considering having an ELISA food intolerance test..

Here is what I have pieced together. I changed my diet completely last year in October after losing 3 stone in weight on a VLCD. I was eating a low-gi, healthy balanced diet and feeling brilliant. Come february this year I seem to become a bit manic about muesli. I could not stop myself eating muesli and soya milk. Sometimes consuming upwards of 500g in one sitting and just bloating out and flatulance. Horrific! A couple of weeks of this and I felt tired, i seemed to have a cold I could not shift (snotty nose) and physio thought I was overtrained. Skin angry again and stopped exercising.

One night I consumed 4 bowls of muesli and soya milk and the next day I was so bloated and flatulant my jeans bruised my hips. I could not bend over comfortably to tie my shoe laces. The next day I was due to fly to Scotland and I just 'blew up'. On the loo from 2am to 4pm every 20 mins.. took myself to A&E after I made it to Scotland as I was sick on the plane too. Stool sample done and sent on my way. Returned and went to GP who was dismissive of a food intolerance and ordered tests - one of which was a coeliac screen. The problem is I keep having little bouts of eating muesli and soya milk and just blowing up again. I have never had IBS symptoms before february this year. I am so uncomfortable and gassy. I dread reintroducing as it seems to trigger me bingeing on it. I notice that the week i did not have it that my night sweats stopped too..i had previously thought this was down to a too high tog duvet. sigh!

I am now in a quandry as to what to do.. I will wait for the doctor to write to me. I feel so upset tonight about the possibility of being coeliac as I have changed my diet to be healthy and I love it. Now adjusting it again is hard to face. I seemed to be fine when I was eating a daily 40g of muesli with 40ml soya milk from September through to end January. The problems seem to have been triggered when I overate it. Is it possible that I could be intolerant to something in the muesli or milk and this would produce a positive Anti-gliadin IGA reading? Or is it pretty sure that I am coeliac. I am toying with the idea of paying up for an Elisa test to check all cereals and soya bean but I gather gluten is excluded. I just wish I could pinpoint it and say it is this one thing eg. oats or milk and then exclude it rather than have to drastically alter my diet..

Can you help or offer advice.. I just feel so lost..

Thank you

Bytey

[mftnchn]

Sorry for all the pain and confusion.

First of all, going gluten free is most likely to cause negative tests. So that yours were still positive after a week of gluten-free seems significant to me.

The mechanism of celiac in the body is totally different from an allergy. Thus an allergy doesn't lead to a positive celiac blood test, at least from what I understand.

If you have a knowledgeable doctor, the next step will be a biopsy. If you continue to eat gluten-free the chances of a positive biopsy really drop. You need to be eating significant amounts of gluten for the testing, equivalent of 3-4 slices of bread for several months. Even then you can get a negative test because the damage in the intestine can be sporatic and missed during the biopsy. For biopsy the more samples they take the better.

You certainly do sound like you could be celiac. Also a number of us are also soy sensitive. Soy and milk proteins are structurally quite similar to gluten which means that some of us seem to have trouble with all of them.

If you are celiac, you may be able to tolerate oats IF they are wheat free. This is the big issue, as they are often grown together.

Hope this helps.

[mftnchn]

Oh one more thing...I have forgotten which test is which, but one of these isn't that specific for celiac. It is the Ttg that is. You might do a search on this forum for the test you had....it might turn out that the one you have that is positive is the more general test.

[bytey]

Thank you so so much for the reply! It really helped to clarify my thinking. I am going to hold off on any intolerance test on top of the coeliac screen for now.

The test results I have show

anti-tissue transglutaminase level <3 (negative result)

anti-gliadin IGA level 27 (positive)

anti-gliadin igc level <3 (negative)

Goodness knows what it all means..

Having been on meal replacement and gluten free for 3 days now I am going to work back in my foods and up my calorie count. I suppose the sensible thing while I wait for the doctor would be to add gluten back in to my diet. Hopefully in small amounts and resisting any muesli binges. I just dread the awful stomach reaction and I suspect it will be even worse now after exclusion. That was my experience after eating again at the weekend after a week of exclusion last week.

I guess I sit tight now and wait for the doctor to contact me..sigh!

[bytey]

Thank you again mftnchn for your advice. I have done a lot of reading and I think I know what has happened and I am pretty sure I am coeliac.

I lost a lot of weight last year on a VLCD and felt fabulous doing it. I started going to the gym when I reintroduced all my foods and was eating gluten happily so showing no symptoms here and it was not the diet.

What i think was my trigger is that I left my job in November and started exercising 6 out of 7 days a week. Some days I would swim, spin and pump. I let myself as I knew I was going back to work and would not be able to do as much in the new year. In february I was tired, I went to the physio who confirmed I was overtrained and picked up on my muscle tiredness and various other little bits. I developed a cold sore, tired, lethargic and had to stop exercising eventually. I also had a cold sore and constantly runny nose. I also started to overeat muesli and if I am honest I could eat up to 1kg with soya milk in one sitting. It made me feel ill but I could not help myself. I now think that the overtraining, overeating gluten and some stress towards changing my lifestyle triggered the disease.

Before I had the incident where I 'blew up' on my way to Scotland and ended up in A&E I had placed myself back on complete meal replacement for a week (sans gluten) so it makes sense then that when I broke the fast with muesli I reacted badly. And again before my blood test I relaced for 5 days to get my swelling down and again introducing gluten this weekend caused another extreme reaction.

I have spoken to the doctor and am eating gluten every day although it makes me so swollen and ill. I am eating my toast right now as I see a client in an hour and i know I will vomit within an hour so I am timing it. The doctor will be calling on Monday and I hope she will be refering me for an endoscopy. I will hopefully show positive then as I am continuing to eat gluten. I just wish it could all hurry up.

This forum has been great as reading through now it all makes sense. I know self-diagnosis is frowned upon by doctors but I am sure now I am coeliac. Interstingly I have replaced soya milk for almond milk and my reaction seems to be lessened.

Oh joy! I suspect I will be spending a lot of time in your company in the near future.

Bytey x

[cruelshoes]

You may not be a celia in the strictest sende of the word, but definitely can have a problem with gluten. Here are some links that may be of interest to you.

Open Original Shared Link

What are the different antibody tests available? Can there be errors in testing?

The blood tests can be divided into 2 different types of antibodies: those which are

[bytey]

Thank you so much for distinguishing it for me and the explanation. I am waiting with bloated belly for the doctor to call me this morning! I am going to have to own up to being gluten free for 5 days before my blood test too. I just did not realise at the time I was gluten free and the consequences.

[bytey]

Arrrgghhh! I just do not know what to do so I am screaming here..sorry!

The doctor called today and said she and the gastro's visiting have decided I am not coeliac and am suffering from IBS. She is writing me another prescription and i should make another appointment and just keep eating gluten in moderate amounts although it seems to be irritating my gut. I just wanted to cry and she knew it by the end of the call.

I just do not know what to do. I am sooo swollen I cannot even describe what I look like except to say 9 months pregnant. And permenantly now!

So, I have made another appointment (with the horrible doc as the only one available tomorrow) and I am going to make sure I eat before I go there so she can see the true extent of my swelling. On both occassions she has seen me I have been without gluten and on meal replacement so the swelling was not so bad but it is unbearable now. I cannot bend over, I am breathless and exhausted by it all. She just has to help me but i suspect not. I am just so fed up. I think I have decided that if I do not like her response and she does not help me in some way above IBS I am going to work (conveniently at the hospital) and then at the end of the day will take myself to A&E. I have just started a new job and I cannot keep taking time off to go to the doctor to be sent away again and left to swell and be so ill.

[bytey]

Phew! Today I just wanted to cry tears of relief..

I waddled myself into the surgery this morning and after lots of tapping and poking my doctor announced she was pretty sure I am coeliac. Duh! Thank goodness I persevered and demanded another appointment after being sent away being told I had IBS twice. I made sure that before I went I had bread and muesli and swelled up so she could see the full effect. Previously I had been gluten free and the swelling was nothing like now but they did not seem to believe me. I am just so relieved that she changed her mind. She explained the test was ambiguous and that she felt sure that I was coeliac given what has happened. Yesterday they were sure I was not coeliac..and told me so over the phone. Anyway she gave me two choices - treatment or diagnosis. Treatment - just go gluten free and be done with it. I said after how I have been I was happy to have a biopsy and to please refer me which she has done. I want something that confirms it for me and those around me so I do not just seem like some fussy eater. And also I may get some help with my diet etc

The only thing that threw me was she told me I could now go gluten free. I queried this saying was it not sensible to keep on gluten until the biopsy. She says no as they would set me a gluten challenge. I have taken gluten out twice before and I know how extreme the reaction was when i reintroduced it so this scares me. Mind you I am so swollen and uncomfortable now that it is tempting. I called Coeliac UK to ask their opinion and they said if I thought I would be seen within a couple of weeks then to stay on the gluten. Only problem is I do not know when I will be seen. My head is telling me to stay on the gluten rather than come off and have go back on for 2-4weeks when I get my referral. I know I will nearly keel over with my extreme reactions....

[bytey]

I am still not sure what to do..go gluten free and wait for the gastro and gluten challenge.. or keep on the gluten and stay ill. I have no idea when i will be seen.

I have just found this and it is swaying me towards staying on the gluten no matter how nasty

Open Original Shared Link

"In those who do require a gluten challenge the question remains how much gluten should be consumed, in what form and for how long?

The Primary Care Society of Gastroenterology (PCSG) suggests that in adult patients with an uncertain diagnosis an endomysial antibody test should be repeated after 6 weeks on a diet which includes four slices of bread daily. A positive result should be followed by a biopsy. Similarly the British Society of Gastroenterology (BSG) recommends an intake of 10g of gluten (i.e. equivalent to four slices of bread) per day for a minimum of 2 weeks. In children they suggest that the challenge lasts for 6 weeks. They also suggest that the date of he biopsy should be brought forward if the patient experiences severe symptoms and reiterate that ‘development of symptoms on gluten challenge without vidence of an abnormal small intestinal biopsy is insufficient to make the diagnosis’."

[bytey]

Well i went gluten free from the 18th March - my last post. With some success.. and quite a few accidental episodes along the way. But life has been better.. I just want a diagnosis although I know I may not get it but I shall cross that bridge when I get there Tomorrow I am seeing the gastro and he should put me on the gluten challenge according to the doctor. I am dreading the next few weeks but i am going to have to do it if there is to be a chance of being diagnosed. I have made a list of my symptoms and the things I want to raise with him so I do not go gaga when I am in there. lol

In case anyone is interested here are my symptoms:

Bloating, swelling, gurgling gas stomach, sore muscles (particularly stomach) after bloating episode, spots, rash, mouth blister/ulcer (one occurance), cold sore (one occurance), some upset stomach/diorrhea, some vomiting, rising vomit in throat at night (after evening glutening on every occassion), gas - both ends, severe night sweats (after evening glutening on every occassion), extremely tired and lethargic (no energy to complete the most mundane tasks - a bit like being very hungover and lazy), bad mood, ratty and feeling low (very low), breathless and tired after minimum exertion. My mother replied.. is that all? Hmmppff

My gastro questions:

Can my challenge consist of 40g muesli or gluten flake (rye or barley) breakfast, small roll, pitta or wrap at lunch and 40g gluten pasta or couscous at dinner. Is this enough? I like to pace my carbs throughout the day to burn off and 4 slices of bread is not appealing however it would mean I get glutened once a day rather than continuously throughout..

If I do the challenge, given that I may only have triggered in february and had a month at attempting to be gluten free, what are my chances of a positive biopsy?

Can gastro refer me for HLA typing? Or is this only an option with negative biopsy? Or not an option at all in which case I will investigate doing this privately.

Can I request that after the challenge or towards the end my coeliac blood screen is redone? I was gluten free without thinking previously.

Can the gastro refer me to a dietician now? Would dietician be able to perform allergy testing on me?

Can the gastro recommend a good coeliac friendly GP?

You can tell the gastro is going to love me! I know I will probably come across as a self-diagnosing maniac so I will try and ask in the best way. but I have learnt that if I do not investigate and question myself then I seem to get nowhere. If I had listened to the GP's on the 3 occassions I would think I had IBS and keeled over by now probably.

I hope everyone out there is ok and if you think of anything else I should ask or have any opinions on the above let me know! I am waiting for diagnosis before I join Coeliac UK and so I am feeling a little lost and unsure at the moment without a firm diagnosis under my belt so to speak.