1540 TTG Results... Help!

[Blanco]

Hi Everyone,

I'm new here. I'm 35 yr old female from the UK and have just been diagnosed with Coeliac disease. My Dr reluctantly did some blood tests (after a couple of years of being fobbed off) and I have a TTG level of 1540. She explained to be classed as Coeliac the result is 20 or more.

I have been referred to have a biopsy but not sure how long this will take (could be months before I hear anything). In the meantime as i'm sure you are aware I have been told explicitly to NOT change my diet.

I am finding this in-between period of time quite difficult as now having wheat cereal for breakfast is quite off putting! I realise you are an American website so apologies if some of my language does not translate!

I didn't visit the doctor with symptoms of gut problems but suffer from extreme fatigue, loss of concentration, headaches/migraines, never feeling like I have any energy, brain fog, feeling hot almost all of the time among other things.

I know this road is going to be long and I feel a bit overwhelmed, my family has a strong history of autoimmune disorders with Lupus, Coeliac and Sjorgens Syndrome in my father, brother and twin sister.

I was just after some advice really on what symptoms I can 'blame' on the coeliac and what I might just have to learn to live with.

I do have 'loose stools' as the doctor puts it but it's never really bothered me that much and I get a tiny bit of bloating from time to time but again it's never really bothered me to be honest. I have alway been a bit of a 'sickly' person with being sick sometimes after having a meal out. I also have a nut allergy so have always put the sickly times down to this.

Any advice you can give me would be great as I'm feeling at a bit of a loss with it all to be honest.

Thanks

[trents]

Welcome to the forum community @Blanco!

Which TTG test was that for which you report the result of 1540? There is the TTG-IGA and there is the TTG-IGG. If it was the TTG-IGA your score was 77x normal and I'm surprised the physician is asking you to go forward with a biopsy as in the UK it is common to forego the biopsy when the TTG-IGA scores are 10x normal or higher.

Edited April 10 by trents

[Blanco]

Thank you for the welcome 🙏 

It says it is TTG ABS (IGA) 1540 she did say they might not bother with a biopsy with such a high result but would leave that decision to the hospital so I have been referred and I’m awaiting an appointment. 
 

I’m really struggling with the fatigue and feeling very weak all of the time and like I could literally drop to sleep at any time! 
 

thanks ☺️ 

[trents]

I would go back to the physician and ask her if she would be willing to give you an official diagnosis based on the test results alone, explaining that you are really struggling with the symptoms while continuing to consume gluten. I'm guessing if you push her a little like that she would. If she is willing to do that then I would cancel the hospital biopsy procedure appointment and begin the gluten free diet. I understand there are certain financial perks in the UK to having an official celiac diagnosis.

[Blanco]

I’m not sure about there being any financial perks, think you have to be on deaths door here to get anything like that! I find it hard working 5 days a week and they are forcing us all back to the office full time which I am going to find almost impossible at the moment. 
 

As she is just a GP (General practitioner) she won’t be able to confirm the diagnosis herself as far as I understand it.

I suppose it’s just a waiting game now  

 

Thank you for your help  

[trents]

By financial perks I mean there is a stipend of some kind for buying gluten free food products and free follow up care.

[Scott Adams]

In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease.

According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy:

• Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults
• TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases
• No More Biopsies to Diagnose Celiac Disease in Children!

There are other things that may cause elevated tTg-IgA levels, but in general a reaction to gluten is the culprit:

 

 

[trents]

3 hours ago, Blanco said:

I’m not sure about there being any financial perks, think you have to be on deaths door here to get anything like that! I find it hard working 5 days a week and they are forcing us all back to the office full time which I am going to find almost impossible at the moment. 
 

As she is just a GP (General practitioner) she won’t be able to confirm the diagnosis herself as far as I understand it.

I suppose it’s just a waiting game now  

 

Thank you for your help  

But I'm not sure that makes sense. For it to work that way you would have to have the blood antibody tests done by a GI doc who then could declare you to have celiac disease based on the fact that your scores are 10x or greater than normal. But, in the UK can you even start with a GI doc appointment without a referral? We have numbers of reports from forum participants from the UK who were not required to undergo a biopsy because their blood antibody scores were so high.

[cristiana]

Good afternoon @Blanco!

It's always good to see a British coeliac on the forum.  Coeliac UK, the British coeliac charity,  is a fabulous organisation (worth joining it just for the gluten-free food guide app, by the way) but the one thing it doesn't have is a forum, so we do get quite a few British people posting here.

One of the things that stood out to me from your original post was your mention of the 'in-between' period.  It will feel strange eating wheat etc when you know that with those TTG numbers it is pretty much 100 percent certain you have coeliac disease.  But what I would recommend in your shoes is to make the most of this 'last chance saloon' to eat all the things that you will miss when you give up gluten for good. When it was my turn I can't remember eating a lot of bread, but I do remember eating loads of chocolate Penguin biscuits!  I'm so glad I did as no gluten-free equivalent has yet been put on the market and I do miss them!

The other thing I noticed in your post is the list of symptoms and your wondering what you can blame on coeliac disease, and what might be caused by something else.

The fatigue, the loss of concentration, headaches/migraines, lack of energy, brain fog, feeling hot most of the time.... those could all be part of the way it affects you.  However, like me, you may find that some symptoms stick around despite going gluten-free.   The only way to find out is to give up gluten once your condition has been formally diagnosed. 

(In my case I have for decades fallen asleep in front of the TV in the evening.  I just can't help it.  I thought once I was found to have coeliac disease and I had adopted a gluten-free diet that would stop happening.   It hasn't! - and I've been checked for diabetes and thyroid issues, it isn't those either.  But my painful migraines have for the most part gone now.)

Another thing which may be causing some of your symptoms is malnutrition, caused by possibly years of malabsorption.  Once you have been checked for deficiencies (the NHS frequently check for Iron, B12 and possibly Vit D deficiencies) you will know if you need to supplement, or eat more of a particular foodstuff.  Once your levels are normal you should feel a lot better.

One thing touched upon in previous posts on this thread is the NHS support for diagnosed coeliacs.  An NHS diagnosis should entitle you to a nutritionist, an annual coeliac review with a gastroenterologist which will include blood tests for compliance and also to check for any complications which sometimes arise from coeliac disease, DEXA bone scans to check for osteopenia/osteoporosis, to which coeliacs can be prone,  and also possibly a prescription for gluten-free staples such as bread and flour.

Do come back to me if I can answer any questions.

Cristiana

 

Edited April 13 by cristiana

[Rogol72]

Hi @Blanco,

I think you should contact this dietitian ...

https://www.bda.uk.com/find-a-dietitian/cristian-costas-batlle-london-united-kingdom-12490.html

Specialising in Coeliac Disease, he may be able to assist you in pushing for an official diagnosis without the need for a biopsy. He knows everything about the diagnosis process in the NHS.

He's a guest on this podcast episode

https://open.spotify.com/episode/6pDn5dZYufhiyEqyrPmSVJ

 

[cristiana]

On 4/10/2024 at 9:05 PM, trents said:

But I'm not sure that makes sense. For it to work that way you would have to have the blood antibody tests done by a GI doc who then could declare you to have celiac disease based on the fact that your scores are 10x or greater than normal. But, in the UK can you even start with a GI doc appointment without a referral? We have numbers of reports from forum participants from the UK who were not required to undergo a biopsy because their blood antibody scores were so high.

If you are prepared to self-fund, it is sometimes possible to self-refer to a private gastroenterologist in the UK.  My friend did. 

To see a gastroenterologist through the NHS, you typically need a GP referral or a referral from another consultant (for example, a gynaecologist who suspects someone has in fact a gastric problem can refer them onto gastroenterology).  Private health insurers also normally require a GP referral before authorising cover, or a referral from a consultant.

[trents]

Then maybe the OP should talk to the gastro doc at the appointment about granting a celiac disease diagnosis on the high antibody count alone so as not to have to go through the endoscopic procedure. Cristiana, if it is true that a PCP cannot officially diagnose celiac disease then it must be true that a GI doc can do this since we do know that many in the UK with 10x normal TTG-IGA levels are not required to go trough an endoscopy/biopsy to get an official diagnosis.

Edited April 14 by trents

[cristiana]

7 hours ago, trents said:

Then maybe the OP should talk to the gastro doc at the appointment about granting a celiac disease diagnosis on the high antibody count alone so as not to have to go through the endoscopic procedure. Cristiana, if it is true that a PCP cannot officially diagnose celiac disease then it must be true that a GI doc can do this since we do know that many in the UK with 10x normal TTG-IGA levels are not required to go trough an endoscopy/biopsy to get an official diagnosis.

Back in 2013,  prior to diagnosis, I had been quite unwell so my GP ran several blood tests and the tests for coeliac disease just happened to be some of them.  I have no idea what my precise numbers were, but the cut-off was 100 for the TTG test and mine was over 100.  I remember both my GP and I were delighted when I went to see her as finally we felt we'd found the explanation behind my various symptoms.   But the story did not end there - I had to be referred to a gastroenterologist for an endoscopy as then it was considered the gold standard for a formal diagnosis.  It was not until that test was done I was formally diagnosed.

You are quite correct about the endoscopy now not always now being deemed necessary but if my memory serves, this came about around the time of COVID when gastroenterology departments had huge backlogs to contend with.  It will be interesting to see how things pan out in the coming months as other Brits share their coeliac journey stories on this forum.

Edited April 14 by cristiana

[Blanco]

On 4/13/2024 at 5:50 PM, cristiana said:

Good afternoon @Blanco!

It's always good to see a British coeliac on the forum.  Coeliac UK, the British coeliac charity,  is a fabulous organisation (worth joining it just for the gluten-free food guide app, by the way) but the one thing it doesn't have is a forum, so we do get quite a few British people posting here.

One of the things that stood out to me from your original post was your mention of the 'in-between' period.  It will feel strange eating wheat etc when you know that with those TTG numbers it is pretty much 100 percent certain you have coeliac disease.  But what I would recommend in your shoes is to make the most of this 'last chance saloon' to eat all the things that you will miss when you give up gluten for good. When it was my turn I can't remember eating a lot of bread, but I do remember eating loads of chocolate Penguin biscuits!  I'm so glad I did as no gluten-free equivalent has yet been put on the market and I do miss them!

The other thing I noticed in your post is the list of symptoms and your wondering what you can blame on coeliac disease, and what might be caused by something else.

The fatigue, the loss of concentration, headaches/migraines, lack of energy, brain fog, feeling hot most of the time.... those could all be part of the way it affects you.  However, like me, you may find that some symptoms stick around despite going gluten-free.   The only way to find out is to give up gluten once your condition has been formally diagnosed. 

(In my case I have for decades fallen asleep in front of the TV in the evening.  I just can't help it.  I thought once I was found to have coeliac disease and I had adopted a gluten-free diet that would stop happening.   It hasn't! - and I've been checked for diabetes and thyroid issues, it isn't those either.  But my painful migraines have for the most part gone now.)

Another thing which may be causing some of your symptoms is malnutrition, caused by possibly years of malabsorption.  Once you have been checked for deficiencies (the NHS frequently check for Iron, B12 and possibly Vit D deficiencies) you will know if you need to supplement, or eat more of a particular foodstuff.  Once your levels are normal you should feel a lot better.

One thing touched upon in previous posts on this thread is the NHS support for diagnosed coeliacs.  An NHS diagnosis should entitle you to a nutritionist, an annual coeliac review with a gastroenterologist which will include blood tests for compliance and also to check for any complications which sometimes arise from coeliac disease, DEXA bone scans to check for osteopenia/osteoporosis, to which coeliacs can be prone,  and also possibly a prescription for gluten-free staples such as bread and flour.

Do come back to me if I can answer any questions.

Cristiana

 

Hi Christina!

Thank you so much for your in depth reply  it's nice to hear from a fellow Brit as the health care system here is a lot different to the US as you know. 

I am waiting for my referral and I'm going to see what they say at the appointment, the GP did say they might well just confirm the diagnosis without a biopsy and they may want to do other tests but i'm not 100% sure.

It's great that you have told me what I should be entitled to on the NHS once the diagnosis is confirmed so I will push to get the other tests for deficiencies and a nutritionist if they are not forthcoming. I am in Nottinghamshire, so not sure about the Coeliac care here as you know nationally with a lot of the NHS services it is more of a postcode lottery than anything else.

I am trying to make the most of this time like you said, I do love a penguin too! I have made a list on my phone of things I am going to eat for the last time.... haha a bit sad I know. Fish and chips is near the top and black forest gateaux, not had one for years but suddenly I have a craving knowing I won't be able to anymore. Sorry... I will stop talking about the food no one on this forum can eat!

I am feeling more and more fatigued since the tests results, I'm not sure if know knowing I have this diagnosis has sort of made me worse. Work have allowed me one day working from home a week so that's something I suppose, I feel shattered after two days on the trot of going in to the office. I am going to wait for the 'official' diagnosis and then ask for two days at home at least, but not sure how that will go.

Do the prescriptions for the gluten free food work out cheaper than buying it in the shops? I know prescriptions are nearly £10 a go now so wondering if it is worth it?  

Thanks again for your reply, I feel less alone in all this

 

[Blanco]

On 4/13/2024 at 8:02 PM, Rogol72 said:

Hi @Blanco,

I think you should contact this dietitian ...

https://www.bda.uk.com/find-a-dietitian/cristian-costas-batlle-london-united-kingdom-12490.html

Specialising in Coeliac Disease, he may be able to assist you in pushing for an official diagnosis without the need for a biopsy. He knows everything about the diagnosis process in the NHS.

He's a guest on this podcast episode

https://open.spotify.com/episode/6pDn5dZYufhiyEqyrPmSVJ

 

Hello @Rogol72

Thank you for the info, I don't have private health care here in the UK so unfortunately I can't see this guy without paying for it myself which I'm not in a position to do. 

[Blanco]

On 4/10/2024 at 9:00 PM, Scott Adams said:

In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease.

According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy:

• Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults
• TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases
• No More Biopsies to Diagnose Celiac Disease in Children!

There are other things that may cause elevated tTg-IgA levels, but in general a reaction to gluten is the culprit:

 

 

Hi @Scott Adams Thank you for the info it's really useful.

The doctor did say the specialist might not do the biopsy but it is the specialist I have been referred to that has to make the diagnosis as far as I am aware so I am waiting for the appointment.

Our healthcare system here in the UK is very different to America so forgive me if I don't articulate our system well. 

[cristiana]

@Blanco - you are most welcome, and I am glad to hear you have made your glutinous bucket list!  Just before my biopsy, after the shed loads of Weetabix and Penguins I had eaten, I had a terrible tight headache across my forehead, something I'd suffered from a child and had just thought was a headache at the time. Maybe my body was trying to tell me something, even back then? 

But I know what you mean about black forest gateaux - I've never really liked McDonalds, Burger King or KFC but now wish I could eat all that stuff when my family are tucking into theirs!  

On the plus side, you may have seen, in the big supermarkets, particularly Tesco's, the gluten free aisle is ever expanding.  In one of our local branches now it pretty much occupies a whole aisle.   You might have to shop around, but it is amazing what you can find.  Ginster's make their own gluten-free pasties now, for example.  I just need a senior executive from McVities to read this thread because once Penguins are gluten-free, I shall be happy!

As for prescriptions, this link should help you find out what you are entitled to - yes, NHS lottery is absolutely how it is!

I have personally never bothered with prescriptions, but some do.  I think perhaps what you could do is buy gluten-free for a month, cost it, then see if it's worth your while compared with what the NHS can offer.  With some bread loaves costing £3.50 a shot, it might be worth it?

By the way - do keep us posted if you can, we'd love to know if your gastroenterologist insists upon an endoscopy.

 

 

Edited April 17 by cristiana

[Blanco]

Hi @cristiana

I have had a letter from the hospital after 7 weeks of waiting. They have said there is such a back-log for procedures that waiting for a biopsy would significantly delay this process so they have confirmed a diagnosis of Coeliac Disease based on the very high blood test results.

They say in the letter I have been referred to a dietician, so I now await contact from them. In the meantime I have sort of enjoyed the 'last chance saloon' but symptoms seem to be worsening and I am finding it hard to enjoy the foods now. I'm not sure whether to wait for the appointment or just stop eating gluten now and start to feel better. I'm not sure how long it will take to feel better? How long would you say it should take before I feel an improvement? 

I have been back to the GP in the meantime as I am now having increasing symptoms of 'brain fog' (forgetting things, not being able to formulate thoughts properly) and significant joint pain. I know that if you have one auto-immune disorder you are more than likely going to have more than one so i'm not sure what they are looking for when they took some more blood tests so I will await the results of those also! 

Hope you have been enjoying the nicer weather we have been having here in the UK, did you see the northern lights the other week? I bloody missed them!!  

Thanks, Blanco  

[trents]

@Blanco, there is no need to wait for consultation with a dietician to begin the gluten free journey and hence allow healing to start. In addition, you would do well to invest in some gluten free high potency vitamin and mineral supplements as undoubtedly you have developed vitamin and mineral deficiencies that will otherwise take a long time to correct by gluten free eating alone. When I say "high potency" I mean more than a multivitamin. It can take over two years for the villous lining of your small bowel to heal completely after going gluten free and that is where all the nutrition from what we eat is absorbed. Also, here is a primer for beginning the gluten free journey: 

 

[cristiana]

7 hours ago, Blanco said:

Hi @cristiana

I have had a letter from the hospital after 7 weeks of waiting. They have said there is such a back-log for procedures that waiting for a biopsy would significantly delay this process so they have confirmed a diagnosis of Coeliac Disease based on the very high blood test results.

They say in the letter I have been referred to a dietician, so I now await contact from them. In the meantime I have sort of enjoyed the 'last chance saloon' but symptoms seem to be worsening and I am finding it hard to enjoy the foods now. I'm not sure whether to wait for the appointment or just stop eating gluten now and start to feel better. I'm not sure how long it will take to feel better? How long would you say it should take before I feel an improvement? 

I have been back to the GP in the meantime as I am now having increasing symptoms of 'brain fog' (forgetting things, not being able to formulate thoughts properly) and significant joint pain. I know that if you have one auto-immune disorder you are more than likely going to have more than one so i'm not sure what they are looking for when they took some more blood tests so I will await the results of those also! 

Hope you have been enjoying the nicer weather we have been having here in the UK, did you see the northern lights the other week? I bloody missed them!!  

Thanks, Blanco  

 

Hi, @Blanco

Yes, I missed the Northern Lights too.   Although my sister tells me there are some more due soon, I think this coming week.  Maybe we'll see them next time, hope so, I felt quite cross that I was asleep in front of the TV when the last lot happened!

I agree with Trents, now you have your official diagnosis you won't be expected to keep consuming gluten.  Well done for keeping things going as long as you did.   I would say join Coeliac UK if you can, at least for one year - their food and drink guide and app are fabulous. When you see your nutritionist they may well give you a lot of money off vouchers for gluten free food that you can try, it's all one big adventure!

If you need help with interpreting any more blood test results let, us know.  It could be they are just checking to see if the joint pain has another cause, but so often many different symptoms improve once you have left gluten behind - some that you have never associated with gluten.

Thanks for keeping us posted.   

Cristiana