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Coeliac symptoms

Posted , 3 users are following.

kim2706
kim2706

I was diagnosed with Coeliac disease in December. My problems started with  mouth ulcers, blood test gave high TTGs, endoscopy proved (after second one) Coeliacs. I am on a gluten free diet, I have noticed I don't have bloating any more and my number 2s are completely different! In a good way!

I don't have and have never had any of the feeling ill when I had eaten Gluten, I have had a few slip ups when not thinking about things, like I made a cake for my Daughter in law last week ....(it was a gin and tonic cake!) and I completely cleaned the bowl out with a spatula, yum yum it was tasty and then I thought 'you idiot you were not supposed to do that' but I had no effects whatsoever. I know some people are just really ill at the slightest gluten....I just don't have that problem is this normal not to have any reaction yet still have coeliacs? I have to add that I am following the gluten free apart from the odd slip which are not very often ...I am still learning! 

1 like, 17 replies

17 Replies

  • aveline
    aveline kim2706

    Posted

    Well, it's good news that you're not as sensitive as others when you're "glutened". But, you know to be careful as your body is attacking itself every time that happens. 

    We're Catholic and next year my little one with CD should be making his First Communion. The Vatican is firm on only using wheat-based wafers and there are approved "low gluten" ones, but I really don't know if it will hurt him or not. My church already has them for others, and our nutritionist said to try it...but it wouldn't meet the US Standards for GF at 20ppm or less.  He could make the sacrament by taking the wine, but the blessing includes putting some of the "bread" into it, so that's hardly safe either.

    My point is that many have different reactions to small amounts and in your case you can tolerate even more. But, your body has silent reactions that can lead to large problems such as cancer, thyroid, diabetes, etc. sad  I can't see my son taking Holy Communion every week for the rest of his life, but I do want him to have it once to make the sacrament... It's a very tough call, and I understand what you mean!

    I'm intrigued by this "Gin and Tonic" cake, by the way!  Hahaha!  I won't bake with gluten any more but the fact that it exists is just excellent!

    • stephen35053
      stephen35053 aveline

      Posted

      Hi. As far as I understand it a piece of the host has to be placed in at least one chalice, but it is not a requirement that it has to be placed in every chalice. If your priest has two (or more) chalices on the altar he should be able to place a piece of the host in one of them and offer your son the other one.
  • cassie93779
    cassie93779 kim2706

    Posted

    Hi Kim, Can I ask what your original symptoms were? I have a doctors appointment at the end of May but I am sure I have Coelics or at least a gluten intolerance. 
    • kim2706
      kim2706 cassie93779

      Posted

      Hi Cassie symptoms were mouth ulcers for a year ... Constant. Had blood test high amount of TTG in blood then eventually Endoscopy to prove. But looking back now my other symptoms were bloating and loose motions which have changed completely! But I have just been on a cruise which was a bit of a food nightmare which I hate to admit and have come back with my symptoms as bad as ever with more ulcers and very bad upset tum which I put down to gluten!
    • cassie93779
      cassie93779 kim2706

      Posted

      Hi Kim, thank you for your response. That must be so frustrating for you! I am really going to struggle with adapting to a gluten free diet if i have to.

      I also suffer from mouth ulcers, bloating, chronic constipation, eczema on my feet I was told (but sounds similar to dermititus herpetiformas) gas, and excess mucus in my throat too? Always feeling the need to clear my throat of phlegm, worse especially in the mornings. This has probably been present for a couple of years since my eczema appeared. Have you heard of these being symtpoms of celiac or gluten intolerance?

      Thanks 

    • kim2706
      kim2706 cassie93779

      Posted

      Hi Cassie interesting you should say about the excess phlegm in your throat, I have that too, much worse in last couple of years always worse in the morning. Apart from the annoying mouth ulcers I thought my symptoms  were all part of getting older and were small annoyances, I have been trying to be really positive and not let this change in diet get to me, but after my weekend away it just bought home to me how problematic it can be.

      my symptoms are mild compared to some people, I almost feel like throwing my hands up and saying 'blow it I am going to carry on my life as normal' eat what I like and suffer the consequences. I have never ever been a fussy eater, will eat anything put in front of me so this is completely alien.

       

  • cassie93779
    cassie93779 kim2706

    Posted

    Perhaps this excess phlegm is a response to the gluten in yours/my body then? Especially as you say that you tend to have the odd slip up, so small amount of gluten is probably in your body a lot of the time. So annoying isnt it! So gross and not lady like at all.  rolleyes

    I know what you mean, I am concerned that If I am celiac or gluten intolerant I have been for years as I do not remember having regular bowel movements, which I just put down to 'my body's way of doing things' and constant bloating but put that down to extra belly fat and perhaps needing to lose a little weight. But I am not overweight, 5 foot 2 weighing under 8 stone. Yet these are problems I have suffered for years but thought it was normal until more recently, now i am starting to connect the dots! Scary really. 

    Another point I will ask if you dont mind, because you are celiacs, do you find that having alcohol (even gluten free alcohol) didnt settle well with you before being diagnosed? I have found in the last 2/3 years that when I have even the small amount of alcol I ever break out to a severe head ache, even whilst im still out with friends or am sick within a couple of hours, or the next day. With extreme fatigue. All i was thinking is if i have celiac then that would explain this response even after small amount of alcohol because obviously my intestine is quite damaged!

    • kim2706
      kim2706 cassie93779

      Posted

      Don't have any problem with alcohol Cassie the only thing I see that you can't drink is beer. So I haven't had a lager or a nice dark beer since diagnosis. But all spirits and wines are ok as far as I am aware... And cocktails! But I don't suffer after unless I drink to excess! 😜 I am 58 soon I wonder how long this has been going on and I am seriously thinking of coming off the diet and just avoiding the bread for bloating purposes, ( I would reconsider if I was a youngster and suffering badly) it is depressing me, I can honestly say I am usually the most upbeat person. I know all about the possible side effects you could suffer but right now I feel like I could just take my chances. I have called coeliac UK in desperation today as I felt so low, the lady was in a meeting been waiting for a call back for 2 hours. I am happy to chat anytime Cassie.
    • cassie93779
      cassie93779 kim2706

      Posted

      Oh you poor thing! Don't let it get you down. I am 26 so I do not fully appreciate how you are feeling, but am keen to get this sorted. I don't think you should give up the diet if you have celiacs because that then means you are basically damaging yourself and you shouldn't let that happen at your age. If you only had an allergy and just reacted when you had gluten I would say go ahead and quit the diet, but I don't think you should.

      I have spoken to my partner about this as obviously I am a little concerned, but he is being very good about it and is in to eating healthily and said he will go on a gluten free diet if need be with me smile the lucky thing for you and I is that there are more and more things becoming available for us to have that are gluten free making life easier for us, yes at a higher price, but they say you cant put a price on health! for example why not make gin and tonic cakes from gluten free ingredients? i'm sure it tastes just as good!

      God I feel terrible! You have just had a nice weekend away and now I feel that through expressing my own concerns I have made you panic about yours! please don't! It is a lifestyle change yes, and it is a big pain in the redface 

    • cassie93779
      cassie93779

      Posted

      and why don't you just have gluten free bread instead? 
  • stephen35053
    stephen35053 kim2706

    Posted

    Hello, Kim. I am wondering why you had to have a second OGD. I just found out that my D1 and D2 biopsies were all normal after eating a large amount of gluten for seven weeks. I was assuming that this means that I don't have coeliac disease. However, I'm now wondering whether the gastroenterologist will recommend a second round of biopsies. The difference with me is that following a gluten-free diet actually makes no difference to how I feel. I do have gastrointestinal symptoms (diarrhoea, bloating, pain), but they do not worsen when I eat gluten or improve when I do not eat gluten. Also, I do not have some other common symptoms such as tiredness and poor skin condition. I did not have the TTG test as I needed OGD and colonoscopy for other reasons and the consultant thought that the TTG test served no purpose and we could just proceed straight to the D1 and D2 biopsies, which he described as the gold standard.
    • kim2706
      kim2706 stephen35053

      Posted

      Hi Stephen the first endoscopy apparently proved I wasn't a coeliac. I had a follow up appointment with the consultant 1 year later, I had another blood test before I went, the TTGs where still high so I asked why they were still high? He said I needed another endoscopy which this time proved positive. I am just about to have another blood test 6months later, be interesting to see if TTGs have come down at all.

      My symptoms are mild but it has made a difference in 2 respects, no bloating now and my toilet habits are much better!

    • stephen35053
      stephen35053 kim2706

      Posted

      Hello. That's very interesting. Do you know how it is possible that you got a negative result from the first round of biposies and a positive from the second round?

      This is interesting for me, as I am in two minds as to whether to believe that I do or do not have coeliac disease. I have read on the internet that quite a few people say that they have had negative results from blood and/or biopsies, but believe that they must have coeliac disease because there is such a marked correlation between diet and symptoms. In my case there seems to be no correlation at all, as I feel just as unwell when following the gluten-free diet absolutely meticulously as when eating lots of gluten (if anything, worse on the gluten-free diet, which I put down to the possibility that when I have been eating gluten I have presumably been eating more of the things that would typically help digestion in people without coeliac disease, e.g. wheat bran).

      What I am wondering, though, is whether if I go back on the diet with gluten I will be given the blood test and another set of biopsies to see whether they come out positive this time. I'm also still not sure whether I should have had the TTG test. A friend who is a doctor (though not a gastroenterologist) was really puzzled about my not having the TTG test, but the consultant was of the opinion that as the biopsies are the gold standard, and as he was planning to do these anyway, there was no point in doing the blood test, which is less reliable and needs to be confirmed with the OGD/biopsies anyway.

    • stephen35053
      stephen35053

      Posted

      PS: Was there any chance that you got a false negative result because you weren't eating enough gluten in the six weeks before the biopsies were taken? I definitely had more than the recommended amount of gluten, so if I do have coeliac disease, which I probably don't, then it would be strange if I hadn't done myself any damage in the seven weeks that I was preparing for the test.
    • aveline
      aveline stephen35053

      Posted

      Hi! I replied to your post earlier, but just to add:

      The gold standard seems to be the blood test and endoscopy with biopsies. There should be biopsies taken in several locations including stomach and duodenum, and they must be reviewed under a microscope. 

      When my son was diagnosed with CD, the GI said he looked "peachy, which is what we like to see" and in the next breath told us that there are studies done on this and there's really know way to tell with the scope what's really happening - it has to be looked at by a pathologist in a lab. She wasn't putting herself or her profession down, it's just a simple (and proven) fact.  Months later, I heard from a leading doctor in NYC that it's not unusual for biopsies to be done under the gold standard in that too few are taken or results not exactly accurate. I assumed that your biopsies were accurate, but there's always a chance that they aren't and that seem to be the case with Kim.  In your case, you first had dx without biopsies and now you're about to be un-dx without bloodwork...so I think that one time you should have both. Biopsies are generally better tests than the bloodwork, though...but since you've been tested twice with different tests and diagnosed with different results, maybe you need to have the Coeliac Panel blood draw to see if there's anything showing up....and it wouldn't hurt to have genetic testing to see if you even carry the genes for CD, while you're at it.  GL!!

      Kim, I'm glad you have the right results for you, now!!

    • stephen35053
      stephen35053 aveline

      Posted

      Thanks, yes, I have had the genetic testing done and I am positive for HLA-DQ2. I am going to suggest going back on the diet with gluten to have the TTG test and maybe a second round of biopsies. I had 4xD1 and 4xD2, which in the UK at least is the recommended standard. I don't really understand why I didn't have the blood test, as it is certainly much cheaper for the NHS to do than genetic test (a friend who is an NHS doctor was surprised that they didn't baulk at the high cost of getting a genetic test done). The consultant just thought that there was no point in the blood test as he believes the biopsies supersede it. Although it seems like an unusual approach I am inclined to trust that he knows what he's doing. That said, if I'd had the blood test done I'd have more certainty about what to make of all this now.
    • aveline
      aveline stephen35053

      Posted

      I remember reading that those with the lighter symptoms have one gene versus two in many cases (not always but it seems likely that two genes equals stronger reactions). This could explain your findings, Stephen and Kim's lack of serious-feeling symptoms, too.

      It's good to have the genetic tests because it could have virtually ruled out CD if you didn't have either gene. It is odd, though, that they didn't look at the whole coeliac panel while they were at it.

       

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