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Newbie In Scotland With Questions


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#1 dbygones

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Posted 08 May 2013 - 01:36 AM

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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#2 Celiac Mindwarp

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Posted 08 May 2013 - 02:28 AM

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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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#3 dbygones

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Posted 08 May 2013 - 04:38 AM

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?

 

Thanks!


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#4 Celiac Mindwarp

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Posted 08 May 2013 - 06:57 AM

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

Mw
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#5 GFinDC

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Posted 08 May 2013 - 04:55 PM

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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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#6 Deaminated Marcus

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Posted 08 May 2013 - 05:38 PM

The doctors seem to think that if we have a negative Celiac blood test then we can't have villi blunting but this web page says otherwise:

 

 

http://www.curecelia...-celiac-disease


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#7 dbygones

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Posted 09 May 2013 - 02:21 AM

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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