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Newbie In Scotland With Questions

7 posts in this topic

Hi there. Like many others I've found this place trying to find an answer for my health issues; unlike most on here I'm from the UK (Scotland) so have to do battle with the NHS now!

I've just moved up here from England, so new doctor; when I first started to feel like this I asked him to test for hyperthyroidism as I had it a couple of years ago. That test came up negative, to my surprise, and now I think my doc thinks I'm a bit of a hypochondriac! He was stumped too, though, and said he'd refer me to a 'physician'. Apparently he meant an endocrinologist, which was logical, I guess!

Then I started the 'fast' diet – where you eat barely anything for 2 days out of 7 (yes I'd been putting on weight... and yes – it's brilliant!) I couldn't believe how much better I felt during and after those days, and suddenly realised that I could feel the onset of symptoms after eating gluten again! I did a bit of research and landed here. As you know, we have the wonderful NHS here which is brilliant, but a little cumbersome and archaic at times! So I had the discussion with my doc yesterday, who agreed to send me for a blood test; should get the results in 'a week to ten days'; then, if it's positive, I'm to go for the endoscopy – waiting time could be 3 months :(

I challenged him on if he'd send me for an endoscopy if the blood test was negative, pointing out it's possible to have a negative. He sort of did agree that he would... But when I was challenging how long it would take before we had a 'definitive' diagnosis from an endoscopy he was basically saying 'tough, that's the deal'. He was, at least, accepting that, as I'd had complete loss of my symptoms on 4 occasions when I went gluten free, it would appear it would be positive. However, reading further on this site it would suggest that, if my bloods are positive, an endoscopy could then appear negative – still equating to a 'nil' diagnosis!

So, my questions are: do the NHS blood tests do the comprehensive screening as suggested on here, or should I push for that (can I?)

If I get a positive blood test 'can' the doctor go with that, and my experience, to diagnose me, and not bother with the endo?

I'm feeling a bit mercenary, but tbh if the NHS didn't provide special food on prescription I wouldn't bother with all this! Are there other good reasons for getting a proper diagnosis? When I asked the doc about this, he just fudged, saying that the gastro people 'like to keep an eye on you' if you're diagnosed. He didn't even mention the prescriptions! He also didn't mention that I must keep eating gluten; of course he was aware that I'd been doing my research, but was probably more p'd off that I'm diagnosing myself!

One more – on those 4 fast days I didn't eat any gluten; I've been careful now to include at least a piece of bread every day. Do you think this should be enough?

Sorry, this looks a bit long! But thank you for sticking with it, you're all wonderful people and it's a wonderful place to come for newbies...




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Hi dbygones

Welcome to the site, glad you found us.

I will have a go at some of your questions.

I am in the UK too, and went through the NHS diagnosis system. I would say that you need to know your stuf when you talk to doctors, as the knowledge of celiac an non celiac gluten intolerance is mixed. We have had great reports of NHS doctors (including in Scotland) and a few not so good. My GP, for instance tested after only 1 week on gluten, when the recommendation is minimum 6. However, my GI was more clued up. While I only had minimum tests, not enough samples in my biopsy and was unlikely to get positive on those tests, he did take ne seriously, do a genetic test, which was also negative, and so diagnosed me ncgi. He advised gluten-free for life.

He was clear that I would not get prescriptions. Very occasionally I think people have got it on blood or biopsy, if there is a very strong history, and clear reaction to gluten challenge on/ or gluten-free diet. These are rare, enlightened individuals as far as I can see.

I think it is useful to have a formal diagnosis, but once you have done your best to get one, I would seriously consider going fully gluten-free for a few months to see how it goes. Quite a few of us find a fairly clean, simple diet works well, with lots of fresh foods, rather than swapping gluten-free for regular products. They are fine for some people, but do tend to be higher in fats or sugars, and not fortified. Many have then as treats.

Looks like you are on the right lines, keep asking questions :)


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Thanks Mindwarp, that's really helpful! I'll try to ask around about different docs who might not bother with a biopsy. My diet is already quite basic coz I'm (almost) vegan - but it would really help to be able to get 'pure' oats and flours, and cereal. (I still lapse on dairy occasionally and I'm only just learning to cook with egg replacer and tofu...)


I've now found another question - maybe I should start another topic? I'll try it here and see.


My oh is really good about all this, supportive etc, but has questioned my theory about not being able to eat 'normal' oats. He thinks I'm probably not bad enough for such a small amount as cross-contamination to cause an issue.


So: why does a tiny amount like in contaminated oats cause such a reaction? especially if your gut has been healing over time... I personally do know I react to them, now, because I felt it come on the other day after eating porridge. Is it more to do with the anitbodies you've got in the blood than it actually causing a physical problem in your gut?




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I think it is that oats can be cross contaminated, being grown, harvested with other crops, or processed on the same machinery. Also, some folks have a reaction to the proteins in oats, which are similar to those in wheat, rye and barley, and have a similar reaction to being 'glutened'.

The general advice around here is to use gluten-free oats, and to consider avoiding for at least 6 months, while your guts are healing. Reintroduce gently, say 1/3 of a cup.

So I am afraid your concerns are very valid. Have you read the newbie101 thread, which covers the basics of cross contamination? there is a lot to learn, but it does become normal pretty quickly.

I learned the hard waythat ncgi folks often have to be just as careful about these things as those with celiac.

There are several supermarket free from ranges that have gluten-free oats, as well as oatcakes etc.

I took the 3 months waiting for my biopsy to read and get ready, and sort out kitchen equipment etc



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Hi Dbygones,


Welcome to the forum! :)


It is better not to eat oats for the first 6 months to a year.  Even if they are certified gluten-free oats.  There is a small percentage of celiacs who react to oats just like they do to wheat, rye, and barley.  If you are in that small percentage you won't heal on the gluten-free diet if you are eating oats.  Which is not good fun at all.


The celiac reaction is an auto-immune process.  As you can imagine your immune system is pretty  about aggressive about attacking germs and other pesky critters like that.  In the case of celiac it considers gluten a germ or invader.  The immune system antibodies attack and hit the gut and possibly other body areas as well when you ingest gluten.  It doesn't take very much gluten to set off that reaction.  A single small crumb is plenty to cause a reaction.  The immune system doesn't stop attacking right away when the gluten is gone from your body.  It can still be attacking your gut for a couple weeks.  So, yes, small amounts of gluten and cross contamination do matter.


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Thanks, both; I thought it might be something like that. yes there is a lot isn't there! I have been doing a lot of reading - this site is gold dust.


It's stupid; if the NHS says that coeliacs can have gluten-free on prescription then surely anyone who can't tolerate gluten should get the same treatment - I don't know but can imagine that a gluten intolerance could lead one day to full-blown coeliac?


I guess I'll just sit tight and use the time like you say, to prepare - and 'enjoy' the stuff I won't be able to eat! although enjoy is difficult, when you know you're going to feel so rough because of it...


Off now to eat some of the lovely malt bread my oh makes... he's promised to try it with gluten-free flour after!


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    • I understand. Poor thing, made doubly rough because 13 is a really hard age even in the best of times. OK, at 13 she should show the damage in the biopsies. I didn't know if she was 2 or 3 yrs. old & in those cases sometimes they just plain haven't lived long enough to be damaged where the biopsies pick it up - it can be so patchy then.  Gosh, I'm really feeling for her & you both and I so want to say take her off gluten the moment the endoscopy is over but I'm afraid to say that b/c I've seen some pretty weird things go on that you would never expect. Docs can be so uninformed! Please let us know how things turn out & send your daughter some hugs from me and tell her I believe her. Please let her know that most of us had been told by doctors they think it's all in our heads, didn't believe us, blew us off so we know exactly how she feels. Remind her her pedi believes her & he's been more helpful than the GI has.  Press the GI for 6-8 biopsies but a bare minimum of 6.  {{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}
    • I have seen articles linking celiac to Barretts and esophagitis.  I've actually been subtly hinting to my boyfriend to get tested for celiac as well because he has some strange Autoimmune arthritis as well as Barrett's  and some white spots on brain MRI Not MS). One of the articles I read on Celiac and Barrett's actually suggested that most of the patient did not have actual acid reflux symptoms. Not sure if you ever did antibody testing for celiac, but sounds like you certainly want to avoid gluten. 
    • Ahh good point! She is 13 and has been miserable for over two years. It started with chronic hives. We have been to a dermatologist, and a allergist and they brushed it off to her seasonal allergies and now she has joint pain,bloating,constipation,fatigue,headaches just all around miserable. I just want answers quick. she is getting depressed and says she hates her life cause she doesn't think anyone believes her. It's heart breaking . I hope we get answer soon. Thanks for the advice I will keep her on gluten. She is just miserable and I figured the sooner she is off gluten the sooner she will feel better. 
    • Welllllllll, in this particular case it would be best to keep her on gluten until the results come back. The reason I say this is b/c this GI seems whacky. There's a chance you may need to go to a different GI & have the endoscopy redone. I was going to say get a new GI but since the endoscopy is on Monday then I would go forth with it rather than waiting the time it would take to get a new GI & schedule an endoscopy. This GI seems set that it's not celiac & when they get that in their brain it's usually pretty darn hard for them to admit they were wrong. My concern is that she won't take enough biopsies from the right places b/c she's either dumb about how many & where or letting her personal (already formed) opinion influence what she will do. The problem is that you can't be there in the OR with them standing on the GI's shoulders making her do the right thing. Not knowing your daughters age, the other concern is that there may not be "enough" damage just yet, it may be patchy, etc..... that with the mindset this doc has, she will poo poo the dx.  Let me say that it would be a travesty & wholly awful IF you had to put your daughter through another endoscopy but we know how very important it is for her to have an official, dyed in the wool dx. So I'm just trying to think down the line & prevent problems before they come up. I mean, this doc may not even take any biopsies. That sounds insane I realize, but really, it happens more often than you would think. I can't tell you the number of times we've had people come on here after having an endoscopy for celiac where the doc didn't take any biopsies b/c the doc is so stupid as to think they can see the damage & doesn't realize there MUST be biopsies! If you take her off gluten & heaven forbid, you have to end up putting her back on it to get further testing then chances are she's going to get much, much sicker when she's put back on gluten. That most often happens with us and I'm talking about radically sick. See, I'm basing all my thinking on the fact that despite ALL the positive celiac blood work, this dimwit doc doesn't think it's celiac & instead it's all related to the constipation. That is just so far out there, it's NUTS! She's flying in the face of hard evidence! Every test you listed was positive. I can't even begin to understand how this GI comes to her insane conclusion. THAT'S why I am so concerned. 
    • Thanks for your reply. That's what my husband and I thought too. She has a ton of symptoms that's fit celiac. Also I was going to start her gluten free diet after her biopsy on Monday cause the dr said the results take two weeks. Is there a reason I should keep her eating gluten until we get the results? Thanks for your help.
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