dalek100

Hi,

I am sorry for again posting back here and for being a massive pain and nuisance to everyone. I have had a follow-up appointment and they have put me on steroids and something called Creon. I have been advised to go back on the gluten free diet as well. My small intenstines are very inflammed. 

I was wondering that after being on the digestive enzyme Creon, I have noticed that the foods feel less difficult for me to eat. I have been on them for a few days with the gluten free diet. I was wondering as I only away the upper end of six stone in weight, whether my GP will continue to allow me to have this medication as my consultant said if they work, I need to stay on them for life? I am just worried as my GP has been very difficult in the past and I don't want to go like this ever again. 

Thank you for all your help and support. I finally feel like I have got somewhere. 

I value everything that people on this forum have done for me. 

Hi, 

I am deeply sorry for being a nuisance and posting back on this forum. I posted a while back as previously I was under investigation for Celiac Disease. I had an anti-ttg anti-body test that came back positive at 23 H and following this a range of investigations have been carried out. I am still feeling at a loss with everything as I have had the following things done:

1. I had an endoscopy done but it was very quick and they did some biopsies and the report said it was 'inconclusive.'
2. I had a colonoscopy prior to this but this didn't find much apart from my colon being very blocked. 

However, some further tests were carried out recently and wondered if anyone had advice about this:

1. I have suffered from Pernicious Anameia for a long time but I have also now got folate deficiency anemia 
2. I have Vitamin D deficiency and the levels are getting lower
3. My consultant decided to do a calprotectin test and the result for this came back at 106 H. 

My consultant suggested that I tried the gluten free diet and I did for a short time from around June to August time. However, I started to react badly to Xanthan Gum in the foods and so switched back to normal gluten based foods in September on wards. I have continued to suffer and be in a lot of agony and now I am finding it difficult generally. 

My consultant requested me to have a pillcam endoscopy, which I had completed today. I have got to hand this in tomorrow.  

I am very worried because I am now only around 7 stone in weight and I am continuing to lose weight despite my intake being the same. I am also feeling weaker and weaker in myself. I was wondering whether it is possible for this still to be Celiac Disease even though the original endoscopy didn't find anything? I also wondered if I went back on the gluten food at the beginning of September, whether this would be enough time for it to show with the capsule endoscopy? 

I am dearly sorry for bothering you all on here. I haven't been well and still feel dreadful and it is getting harder and harder to do my job as well, which is what worries me the most as I have to support my family. I wondered whether Celiac Disease can cause elevated calprotectin and today when I had the pill camera and tested me, she said immediately that there was still a lot of food showing even though I had fasted way before the suggested time? 

I am thinking of trying to get another consultant as I am getting no where and now doubting myself but wasn't sure if the calprotectin result is an indicator and the folate that has suddenly come back low as well. What also worries me is having gone from gluten free to back on gluten and whether it hasn't been long enough. 

Thank you for everyone on this forum that has helped and I am sorry it has taken me this long to post but I am in a bit of a state and do not feel anything like I used to. 

Dalek. 

Hi, 

I am very sorry for being a pain by posting on here again. I was wondering if I could ask for some advice? I had my endoscopy done earlier this evening and the consultant said everything looked normal and said he has taken plenty of D2 biopsies. I was wondering does this mean that Celiac is unlikely now? I am worried in case my problems will never get resolved and the amount of weight loss. Did other people encounter this?

Thank you for all your help,

Hi,

Thank you for your help. I was just wondering if when you had your endoscopy if they detected it by the camera or was it the biopsies that shown it? Sorry to be a nuisance.

Hi,

I am very sorry to be a big nuisance on here. I am scheduled for an endoscopy on Tuesday and isn't until later in the day. I was wondering if anyone had any advice on whether I should eat a lot of gluten the night before or whether it doesn't matter? 

Thank you for everyone's help on this forum.

Thank you for all your help with this. 

I was also wondering if I could ask and hope you don't mind, will they be able to tell Celiac on the camera or will it be down to the biopsies they take? My endoscopy is on the 9th, and I am worried about not having enough gluten to show.

Hi,

I am deeply sorry for posting on here again. As I am scheduled for an Endoscopy on the 9th May, I wanted to make sure that my gluten intake is being kept the same. I was wondering if the ingredients to these products contain gluten even though dextrose is in one of them?

Open Original Shared Link

Chicken Breast Fillet (60%), Water, Wheat Flour, Breadcrumbs (Wheat Flour, Dextrose, Salt, Yeast), Rapeseed Oil, Salt, Wheat Gluten, Sugar, Yeast Extract, Garlic Powder, Onion Powder, White Pepper, Dried Sage.

Open Original Shared Link

Chicken Breast Fillet (60%), Water, Wheat Flour, Breadcrumbs (Wheat Flour, Dextrose, Salt, Yeast), Rapeseed Oil, Salt, Wheat Gluten, Sugar, Yeast Extract, Garlic Powder, Onion Powder, White Pepper, Dried Sage.

Thank you for all your help so far,

Hi, 

I am very sorry for posting back again. I have visited the consultant today and he said that the TTG is mildly elevated - does this mean it is a positive? The consultant said that as I tested negative for Celiac on three previous times, he thinks something else could be going on so came home worrying even more. The consultant has organised an endoscopy and requested it as a fast track and requested an urgent CT scan. 

I was wondering if there is anything that I can do to best prepare for the endoscopy? Does my gluten amount seem to be enough with the 2 slices of bread on a morning? Is it also possible for the TTG to have become mildly elevated because of other conditions? 

He mentioned to me that the colonoscopy didn't work really because of how it was clogged up and that the bowel prep didn't work. 

I have also noticed that I am experiencing major constipation as well - I will have diarrhoea then it will fluctuate to constipation as well and have an awful gurgling sensation as soon as I eat anything like bread. 

Thank you again for everyone on here. It is a wonderful forum. 

Thank you so much for all the help and support you have given me. I cannot thank you enough.

I am ever so sorry to post again here but wondered if I could check with you about this. When at work, I very rarely get chance to eat a lot and so have always been eating the Milky Way UK bars, which I believe contain gluten or barley. I usually have around 6 of these as they tide me over until getting home. I also have two slices of bread on a morning. I was wondering whether this would be sufficient as I am worried in case I haven't had enough gluten? 

Thank you for everything and I wanted to apologise for being a nuisance on here.

Hi, 

I am ever so sorry for posting again. Previously, I posted about having a positive anti-ttg test. I had a colonoscopy but the preparation for this didn't go very well at all. I have had a history of bowel problems that have gone on for a while and the Gastroentrologist diagnosed it as just being IBS. I was previously tested for Celiac even when I was 18 years of age and am now in my thirties and was negative until now. 

My appointment to see the Gastroentrologist is due for next week and wondered if I could ask for some guidance at all. Usually, on a morning I have bread (2 slices) with nutella on and on weekends have been having sandwiches. Over the last couple two weeks, I have been trying to eat as much as I can but have been having a gurgling sensation and severe constipation and then diarrhoea. I was wondering if what I am consuming food wise is still enough for it to be detected? This is the closest I have ever got to an answer to my bowel problems and I am significantly underweight now as I only weight around 8 stone 4 and should be around 10 or 11 stone. 

I wondered if the Gastroentrologist can diagnose it based on my symptoms and blood test now or whether I will still have to go through with an endoscopy as I was told there is a huge waiting list for this at my current hospital. 

I also have pernicious anemia that came up unexplained years back when I started having bowel problems and my Mom also has this and has also recently been diagnosed with diabetes. I am not sure if this information is relevant though but she was told that diabetes is an auto-immune disease. 

Thank you to everyone on this forum and for the support given to me already. 

Hi again,

I was also wondering whether having the bowel preparation will have lowered the TTG level at all?

Thank you for everything.

Thank you for your help. I have had a few colonoscopy procedures done before and the bowel preparation started working near enough immediately. This time it made me feel awful and took a long time to work its way through. Can Celiac cause constipation as well as the opposite as my bowel habits have changed a lot and prior to the bowel preparation some hard stools caused bleeding. I also was wondering is it still possible for the TTG-IGA to be positive but the EMA not? My appointment to see the specialist isn't until 24th April so feel like I have such a huge wait and so worried about still being none the wiser or any chance of getting back to normality again as I am underweight as well. 

Thank you for all your help and support and do hope I am not a nuisance on here. 

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.

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. 

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. 

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? 

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.

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. 

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. 

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.

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.

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. 

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. 

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.