Possible Celiac

[dalek100]

Hi, 

I am new to this forum and hope you don't mind me posting on here. For a lengthy period of time, I have experienced ongoing problems with my bowels. Back in 2009, I was experiencing IBS style symptoms and they detected that I was deficient in Vitamin B12 and have been on injections ever since. I have also been told previously that I was Vitamin D deficient as well. At the moment, I am underweight and weigh around 8 stone 6 lbs and I am around 5 ft 10 inches and went to the GP, who decided to refer me to the Gastroentrologist. They requested a colonoscopy and some blood tests to be carried out. During the colonoscopy, the specialist mentioned that some anti-bodies were found in my blood and said about celiac and asked whether I had an endoscopy before this, and said not. They also said there was an issue with my Vitamin D levels as well. As I have been suffering with IBS symptoms and have been told repeatedly over the years that this is all it is, I was wondering whether this seems likely to be celiac? Is it possible to have had it for this length of time but only just show in the blood tests? My bowels recently have gone to forming very hard stools and constipation as well and didn't think I could have celiac, as I was tested a while back and the tests were negative. They have never found anti-bodies for it before. I wondered if anyone had any advice or guidance at all?

Thank you and hope everyone on this forum is well. 

[psawyer]

The damage caused by celiac disease would not show up in a colonoscopy, because the damage is not in the colon.  If they did not also biopsy the small intestine (endoscopy), then they would not detect damage at all.

[dalek100]

Thank you for your help with this. Is there anything else that could cause anti-bodies to show in that way? Is it possible for it to mainfest now, when previously and for years, no anti-bodies have been found? Its taking a bit of time for me to accept it after being told its just IBS. 

[ravenwoodglass]

If you have positive antibodies you very likely have celiac. This is especially the case since you also have low B12. Have they checked your other vitamin and mineral levels? It might be something to ask for them to do if they haven't already.  It is good the doctor did the colonoscopy and has ruled out stuff like chrons. Did they set you up with an appointment for a endoscopy? In some cases if antibody levels are very high they might diagnose without one but that is the exception not the rule. Do make sure to keep eating gluten until you know that all celiac related testing is done.

Celiac can develop at any age. Many of us are told we have IBS, sometimes for years, before we finally get a diagnosis. It can also take some time for antibodies to reach detectable levels. In addition some doctors don't run a full panel and folks can be missed if they only show up positive on a test that wasn't done.

The diet can be a bit to get used to at first but there are lots of folks here that can help you out. Be sure to read the Newbie 101 thread at the top of the coping section. It has a lot of ggod information.

[dalek100]

Thank you for your help. It was during the colonoscopy that they mentioned that one of my anti-body tests had come back as having high levels. It has shocked me to be honest as I just naturally thought it was just IBS getting worse. I have had Vitamin B12 deficiency for a very lengthy time now. I think I started having problems with it during 2008 and then they stopped my injections and re-started them back around 2012.  

They haven't mentioned about an endoscopy but have got to go back and see the consultant. What is worrying me though, is whether they could have mixed me up with another person? 

They checked my Vitamin D levels and apparently they aren't normal, so I am not sure what is going on. 

I also wondered if having Celiac can cause a change in bowel habit as at the moment I am experiencing the opposite of diarrhoea and have suffered badly from constipation. Even the consultant mentioned that the colonoscopy bowel prep hadn't worked very well, when doing the procedure. 

Thank you again for everything. If this is the answer, I will be so relieved. 

[cyclinglady]

When I prepped for my colonoscopy, things did not go well.  I never knew I was constipated.  I went everyday.  I did not realize that my transit time had been slowed by intestinal damage.  My GI noted that next time (10 years), I would have to do a double prep!  I will starve!  ?

I had both and endoscopy and a colonoscopy done at the same time.  I requested a colonoscopy (yep, over 50) and my GI ran a celiac panel because I had been anemic all my life (or as long as I had been tested).  When positive, he ordered both scopes.  

BTW, I only tested to the DGP IgA celiac antibodies test.  Odd.  Thankful, my GI ordered the entire panel or my celiac disease diagnosis would never have been made.  Biopsies revealed a Marsh Stage IIIB (small intestine).  Luckily, my colon was perfect!  

[dalek100]

Hi

I have asked for a copy of my results and apparently the following is included:

tTg-IGA is 23 and the ranges are 0-15. It says "indicates celiac disease or liver disease" 

I was wondering if this sounds like celiac as apparently the EMA anti-body is negative?

I am sorry to keep bothering people on here. I feel like a massive pain.

[cyclinglady]

33 minutes ago, dalek100 said:

Hi

I have asked for a copy of my results and apparently the following is included:

tTg-IGA is 23 and the ranges are 0-15. It says "indicates celiac disease or liver disease" 

I was wondering if this sounds like celiac as apparently the EMA anti-body is negative?

I am sorry to keep bothering people on here. I feel like a massive pain.

It only takes one positive for a GI to proceed and order an endoscopy to confirm a celiac disease diagnosis.  I tested positive only to the DGP, yet I had significant intestinal damage.  Even in follow-up testing, I still just get a positive on the DGP (when I get accidentallly exposed to gluten).  Now, my GI only orders the DGP and saves me/insurance money.  

The TTG is the most common celiac disease test given.  It is cheaper than the full panel and catches a majority of celiacs.  It can be raised due to other autoimmune issues, but with your symptoms (slow transit/constipation/IBS/B-12 deficiency), you have a very STRONG chance of celiac disease. 

Some folks can not afford the endoscopy and some don't get one for many reasons, but it experts still consider it the gold standard.  I  am very glad that I had mine.  I needed a firm diagnosis in order for me to adhere to the gluten-free diet.  It made it easier for me to get support from medical and family too. 

No bother.  We are here to help each other!  

By the way, IBS really stands for "I be stumped!", in my opinion!  

[dalek100]

Thank you ever so much for all of the help and support with this so far. To be honest, I am still in a bit of shock because this is the closest I have ever come to being diagnosed beyond IBS and never expected Celiac to be what it ended up being. 

I was wondering whether it is just a false positive test as I am worried that it won't be the same if they check it again? Also, my GP checked my results and apparently I was tested for Celiac in 2015 and all tests were negative but in August 2016 the same anti-body test measured 4 and now it is 23. 

Something didn't seem right when I had the bowel prep as it didn't seem to want to kick in like it used to but just put that down to me. 

I also wondered if it could be liver disease like the result stated as I am worried either way but I don't drink alcohol or anything, so can't see how this has happened. 

Thank you again for everything.

[ravenwoodglass]

Chances are your doctor ran blood tests for your liver function. That is usually done pretty routinely. It is not uncommon for someone to be negative and then later to have a positive test.  Celiac can develop at any time in a persons life.  A fa;se negative is much, much more common than a false positive when it comes to celiac testing. If you are going to have an endoscopy be sure to remain on gluten until that is done.

[dalek100]

Thank you ever so much for your help with this. I was also wondering as I am worried about my levels changing until I go and see my GI in 6 weeks time, I wondered how much gluten will I need to keep eating? I usually have white bread on a morning with nutella and then at lunch have sandwiches with meat etc. I was wondering whether I need to just stick to what I am eating already or change it?

This is closest I have come to a diagnosis of my bowel problems so don't want to lose finally getting an answer to the problems.

Thank you to everyone on this forum. It is a fantastic place of support. 

[ironictruth]

2 hours ago, dalek100 said:

Thank you ever so much for your help with this. I was also wondering as I am worried about my levels changing until I go and see my GI in 6 weeks time, I wondered how much gluten will I need to keep eating? I usually have white bread on a morning with nutella and then at lunch have sandwiches with meat etc. I was wondering whether I need to just stick to what I am eating already or change it?

This is closest I have come to a diagnosis of my bowel problems so don't want to lose finally getting an answer to the problems.

Thank you to everyone on this forum. It is a fantastic place of support. 

Did you go gluten free? If not, then you should be fine with your current diet. 

However, while you wait for an endoscopy feel free to eat your favorite pasta, donuts, cakes, breads, because you may not see them again.  

[dalek100]

Hi, 

Thank you. I haven't gone gluten free and still am eating my current diet. I am just worried in case there isn't enough gluten in take going on - I have two slices of bread on a morning usually. Sometimes I don't have chance to have anything at lunch due to how busy my job is at the moment and thought that my cause problems with my levels. It is the closest I have got to a diagnosis and my bowel habits have changed drastically and desperately want to get back to some normality. 

Thank you so much to everyone on this forum. 

[cyclinglady]

39 minutes ago, dalek100 said:

Hi, 

Thank you. I haven't gone gluten free and still am eating my current diet. I am just worried in case there isn't enough gluten in take going on - I have two slices of bread on a morning usually. Sometimes I don't have chance to have anything at lunch due to how busy my job is at the moment and thought that my cause problems with my levels. It is the closest I have got to a diagnosis and my bowel habits have changed drastically and desperately want to get back to some normality. 

Thank you so much to everyone on this forum. 

A slice of bread or two a day is plenty for testing.  You are not doing a challenge, but here is the data to back up my claim:

Open Original Shared Link

 

[dalek100]

Thank you again for all your help. I was also wondering whether the UK version of the Milky Way Chocolate Bar contains gluten as I have those as well during the day as snacks and made me think whether this is a problem as well.

I just would like to finally get back to some normality. Without this forum, I wouldn't know what to do.

[GFinDC]

4 hours ago, dalek100 said:

Thank you again for all your help. I was also wondering whether the UK version of the Milky Way Chocolate Bar contains gluten as I have those as well during the day as snacks and made me think whether this is a problem as well.

I just would like to finally get back to some normality. Without this forum, I wouldn't know what to do.

Hmm, Dr Who sometimes didn't know what to do, but he  always figured it out in the end!

Here's some nutrition info from the Mars UK site.   Looks like they put barley in the Milky Way.

Open Original Shared Link

Ingredients

sugar, glucose syrup, skimmed milk powder, cocoa butter, sunflower oil, cocoa mass, milk fat, lactose, whey powder (from milk), barley malt extract, salt, emulsifier (soya lecithin), palm fat, egg white powder, hydrolysed milk protein, natural vanilla extract.
Contains lactose, milk, barley, soya, egg May Contain peanut, hazelnut.

[cyclinglady]

1 hour ago, GFinDC said:

Hmm, Dr Who sometimes didn't know what to do, but he  always figured it out in the end!

Here some nutrition info from the Mars UK site.   Looks like they put barley in the Milky Way.

Open Original Shared Link

Ingredients

sugar, glucose syrup, skimmed milk powder, cocoa butter, sunflower oil, cocoa mass, milk fat, lactose, whey powder (from milk), barley malt extract, salt, emulsifier (soya lecithin), palm fat, egg white powder, hydrolysed milk protein, natural vanilla extract.
Contains lactose, milk, barley, soya, egg May Contain peanut, hazelnut.

Yikes!  Barley.  This is not gluten free.  

[dalek100]

Thank you both for all your help with this. 

Oh my word. I didn't realise Barley was in Milky Ways. I have loads of those (not many but as snacks) when can't have proper lunch. 

Do you have any advice on how to approach this blood test result with the specialist? I am due to see him in Easter holiday and just want to try and get back to normality, although I know this is easier to say than do. Will it be likely he will diagnose Celiac or just by-pass it? 

[GFinDC]

2 hours ago, dalek100 said:

Thank you both for all your help with this. 

Oh my word. I didn't realise Barley was in Milky Ways. I have loads of those (not many but as snacks) when can't have proper lunch. 

Do you have any advice on how to approach this blood test result with the specialist? I am due to see him in Easter holiday and just want to try and get back to normality, although I know this is easier to say than do. Will it be likely he will diagnose Celiac or just by-pass it? 

Hi Dalek,

The next usual test after positive antibodies is an endoscopy.  I imagine the doctor will set up an endoscopy next, unless they decide to do the full celiac disease antibodies panel first.  The full antibodies panel includes DGP IgA and DGP IgG tests plus anti-endomesial antibodies (EMA).  The full panel isn't strictly necessary, but it is a good idea to do it.

If you are diagnosed with celiac disease, you will learn to check ingredients on everything you eat.  That's a good reason to choose foods with few ingredients, as it goes faster!

[Jmg]

10 hours ago, dalek100 said:

Oh my word. I didn't realise Barley was in Milky Ways. I have loads of those (not many but as snacks) when can't have proper lunch. 

You would be amazed at how many different things contain gluten! Although don't worry, there are plenty of UK sweets and chocolates you can still have should you go gluten free

For now, enjoy milky way, mars or anything else you like. Hell, go and 'exterminate' the dessert tray at your local bakery!  It's important to stay on gluten until the doctor has confirmed that there will be no more tests. 

After that, even if you test negative for celiac please do consider giving the gluten free diet a try as it could still help alleviate your symptoms. Some don't test negative for celiac but are still affected by gluten. 

Best of luck 

[dalek100]

Hi, 

Thank you for your help and support. I really can't thank people enough for this. 

I hope you don't mind me asking this again but as my TTG-IGA anti-bodies came back as positive but they said that EMA wasn't present, but the lab report says "results indicate celiac disease or liver disease" wondered whether having negative EMA is a common finding? I am a bit worried that I am going without answers as I haven't felt right for a while but just thought it was normal for me. 

Thank you for everything. This forum is a wonderful place. 

I also wanted to apologise for asking so many questions. 

[Jmg]

Please don't apologise, one of the nice things about this community is how many people are happy to share their experiences. Everyone here will have been in the same situation as you and remembers how stressful the search for answers and relief from symptoms can be. So ask away! You are much better asking here than on some of the blogs and sites which are pushing various commercial interests in my opinion at least. I've found this site unparalleled in the support and quality of info provided by the community. 

in regard to your test results, it's something that your gi specialist is best place to advise on. There are so many variables in how different people testOut of interest I googled positive ttg negative Emma and found this study

Open Original Shared Link

which suggests that a larger proportion of patients with these markers went on to test negative for celiac than the control group. But really those numbers don't help you in determining your own situation so my advice would be not to worry about them now (easy for me to say I know) and simply relax, enjoy eating any food you feel like and wait for the further test/endoscopy to establish your own circumstances.  Until you go through that all is speculation and that can be stressful in itself. 

That said, if you do find you have celiac, or after eliminating that but reacting positively to the gluten free diet, none celiac gluten sensitivity like myself, then its perversely a positive thing in my opinion. You will have a way to control your symptoms that is unavailable to those suffering other auto immune conditions and the prognosis for those properly observing the gluten free diet is excellent. 

Sure it's not good for your Milky Way habit, but I wouldn't swap the way I feel without gluten for any gluten filled treats, and I always have flakes, crunchies twirls etc to turn to if I crave a gluten-free treat. 

 

 

[dalek100]

Hi, 

Thank you to everyone for continuing to help me. I cannot thank the people on this forum enough. 

Through the post today, I received my report from my colonoscopy. It says "There was a lot of solid faeces in left colon despite taking full prep. Note elevated tTg - Celiac Disease."

I was wondering does this mean that they have diagnosed it as Celiac? Is it normal for the bowel preparation to not work as well? 

Thank you for everyone's help on this forum. 

[Jmg]

The follow up report to the colonoscopy can't diagnose, that would come from the dr/consultant. They're just flagging the high ttg and possible celiac to you and your Drs. Good practice all round

 

[dalek100]

Thank you for your help. I was wondering if my TTG was 4 in August 2016 but is now 23 in March, whether this shows that something is going on? I am very worried about it all and feel like I have no answers. 

Thank you for all your help.