Increasing sensitivity - where does it end?

[freelancer]

This was rather prompted by the maltodextrin discussion...

I've been properly gluten free for about 11 months. I'm not a diagnosed coeliac, but think it's likely I am one, and try to be strict about avoiding foods that contain gluten.

Since I went gluten free I've felt better and better, but recently I keep mildly glutening myself, mainly because I'm finding that I can no longer tolerate foods that were fine six months ago - and maltodextrin is coming up again and again in these.

I understand that my increasing reactivity is a sign that my gut is healing, but does this mean I'm likely to carry on being supersensitive for life or does it calm down after a bit?

[meanioni]

Depends upon whether you have gluten intolerance, allergy or coeliac disease.

As a general rule of thumb, allergies and coeliac disease will get worse over time with exposure (an allergy will generally be indicated by swollen/tingling tongue/mouth/lips or difficulty in breathing following consumption). You should se a doctor if you have an allergy like this or coeliac disease as these both have longer term implications.

An intolerance will give a range of symptoms but typically will not get worse over time, indeed on a free-from diet, some intolerances may lessen or disappear (unless there is an influx of the trigger food in which case they will return).

Maltodextrin is well known for causing problems in some gluten sensitive people, watch out in this case also for Dextrose, codex wheat starch and glucose syrup which may also give a reaction.

[freelancer in reply to meanioni]

Thanks very much - that's good to know.

I'm pretty sure I'm not allergic as nothing showed up on an allergy skin-prick test and I don't get that kind of instant reaction.

I tested negative for coeliac disease 16 months ago but I'd only been eating gluten for two weeks before the test and had previously been mainly off it for some months, so I've never been entirely sure.

I'd been diagnosed with pernicious anaemia before that and assumed all my fatigue/brain fog symptoms were down to this but they started clearing up when I first stopped eating wheat. I had no stomach symptoms before going gluten free but have started having them since.

At the moment it definitely seems as if it's getting worse - my most recent issue was with some vitamins I bought earlier this year and in the spring I was happily taking them with no problems. I'm trying to eat as unprocessed as possible now so it's clear what's causing what, but it feels as if the goalposts are moving!.

[Lynxcat in reply to freelancer]

My coeliac disease began with me thinking I was intolerant or even allergic to wheat. The symptoms I now get if I eat things like maltodextrin are totally different to how it all started. It might be an idea to ask if you can be re-tested over the course of time. Ask also if they could test for wheat intolerance - I had this with a simple blood test. It is good to try and pin down anything and everything that cause persistent problems with health. The following websites may also prove interesting to you as there are now growing beliefs by many physicians that there is yet another disease that mimics coeliac disease in every way and leaves people unable to consume foods containing gluten:

Coeliac Disease Vs Gluten Sensitiviey

celiacdisease.about.com/od/...

Gluten Reactions and what may be causing them:

glutenfreenetwork.com/faqs/...

youtube.com/watch?v=DKwKQ7W...(Not working as expected?)

[freelancer in reply to Lynxcat]

Thanks for the info, I'm interested in the wheat intolerance test. I didn't know it existed. The maltodextrin reactions for me are mainly tiredness, tingling, breathlessness - like a less intense gluten reaction without the stomach stuff.

I agree about the trying to pin it down - I feel like I'm doing a Columbo-style detective operation at the moment to try and get tothe bottom of everything!

[earthwitch]

B12 deficiency is very common with malabsorption problems such as undiagnosed coeliac disease. Pernicious anaemia is a particular type of B12 deficiency (that requires microscope examination of blood cells to diagnose), and I think rather a lot of people get the pernicious anaemia label when its actually not that, but malabsorption. If you have pernicious anaemia you will need probably monthly B12 injections for life, whereas if its from malabsorption, then your B12 levels will recover quite quickly once your gut heals.

I think once you have got established on a GF diet, then if you are sensitive, you do start reacting to smaller amounts once its mostly out of your system. That may be why you are noticing things now. Its incredibly difficult to identify and remove all "hidden gluten" if you don't have access to really good advice on where it can be found. Coeliac society membership is very useful here, with their welcome advice packs as well as commercial food lists. You may need to check everything far more carefully - including those vitamins and supplements (which can have gluten in them), and also be on the watch for maltodextrins which cause problems with most coeliacs. Also if you are in a house with people eating gluten, it can be incredibly easy to get cross contamination from their food - even a few toast crumbs in the butter can do it.

Surprisingly, a lot of folk don't actually complain of stomach symptoms prior to diagnosis, but things like brain fog and fatigue (from malabsorption), so you aren't alone there.

[freelancer in reply to earthwitch]

I'm very interested that you think it could be straightforward malabsorption as I was wondering along the same lines. I've always rather doubted whether I had PA - I've got no family history etc. But I had the Schilling test.

I have 12-weekly injections (they're not keen on monthly ones these days!) and before I went gluten free was on a cycle of going to my GP saying I felt exhausted, her giving me a blood test and saying I was fine, then going home still exhausted. I pretty much counted the days until my injections came round. My B12 levels were OK but lowish, but I still felt terrible.

Then I went gluten free and had much more energy and these days don't much notice my injections - once recently I even forgot to go. I can't believe it's not connected.

I'm getting quite good at the hidden gluten thing - I live on my own so that helps - but it took ages. I've found a lot on the web but not from Coeliac UK as I thought I couldn't join as I'm not diagnosed, though I see you can subscribe so I'll do that.

[Hidden]

Hi I have been gluten free about 6 months, i do not have coeliac, i am gluten sensitive. At first i felt brilliant, then after the first couple of weeks felt worse, i mean ALOT! worse the diarreah was constant the headaches were a nightmare, then i really started to write down everything i ate and was really careful about cross contamination, and slowly i started to feel better, i had a few other issues and as some of you might know on here i am currently doing a 2 month dairy Free trial to adddress these issues. I have to say i did feel abit "what will i eat now" and panicked that i was getting worse, but i have to say 2 weeks in and im feeling......good! im not sure if any of us ever get to the point where we feel "well" or "normal" but i feel ok!.

Just to add , as earthwitch stated, i have Pernicious Aneamia and will be on B12 Jabs for the rest of my life.

Are you both having any help from a doctor/dietician? are you getting any support at all?

Paula x

[freelancer in reply to Hidden]

I dread having any kind of problem with dairy - I rely on cheese these days!

The first time I went gluten free I felt better then lousy (nauseous and peculiar) and a doctor suggested I took probiotics, which worked really well.

I haven't really got any GP support - she was fairly sceptical when I mentioned wheat and initially suggested I start eating it again, and I didn't push it further. I ended up taking a test privately and it was negative. I wondered about going to a dietitian privately but haven't yet. I now feel I need to get the whole thing sorted, even if it means changing GP.

[CarolRR]

Hi - I think that quite a few of us became very ill shortly after going gluten-free. Consuming gluten seems to mask other food allergies/intolerances so once the gluten has been removed, the other allergies/intolerances come to the surface. I returned to my doctor a couple of weeks after going gluten-free as, like you, I felt much, much worse. Tests indicated that I had a severe allergy to dairy casein, soy and eggs. I presently deal with a sugar problem and fat malabsorption. I can honestly say that I feel 'good' on most days, now that I know what to eat. For me, a Paleo type of diet keeps everything functioning normally.

I hope this helps. Good luck in your search for wellness - don't give up.

Cheers.

Carol

[earthwitch in reply to CarolRR]

Yes, I'm definitely one who became more ill after going GF - at least initially. I was fine the first couple of weeks when I was eating naturally gluten free, but as soon as I introduced GF flour and bread and stuff it was hopeless and I was right back to square one. Took me a while, but I finally realised that I just couldn't tolerate corn products at all, and at the time all the GF stuff I was getting was loaded with corn.

[Hidden in reply to CarolRR]

Hi CarolRR can i ask what tests do they do to test for dairy? i would like to have a test that comes back with a definative answer Yes your intolerant/allergic to (whatever) so i know for sure?

thanks

Paula x

[virgolizzy in reply to Hidden]

Hi

Have a look at purehealthclinic.co.uk

You can access lots of tests from here & there is so much advice on this & related websites. If you are unsure about which tests to go for - send an e mail to Micki Rose on the contact page, as she will guide you. She is a naturopathic nutritionalist & her website had been invaluable to me in investigating my issues & I thank her, not my GP for helping me narrow down my problem to Coeliacs disease, which has now been formally diagnosed - after years of problems!

[CarolRR]

Hi Paula,

I live in Canada and through my doctor (a specialist in environmental medicine) had all of my testing done through "EnteroLab" in the US. The results were definitive and thanks to them, I finally got my life back after being ill for over a decade. If you can access this Lab, I highly recommend them. If you're interested, their website is: 'enterolab.com'.

I hope this will help you.

Best of luck.

Carol

[Hidden]

Thank you Carol, i will check that out.

xx

[Eccentrica]

Hi,

I have not been formally diagnosed with CD, but I have intra epithelial lymphocytic changes upon biopsy. My Gastro said that can only happen with CD but didn't want me to go gluten free because my bloods were negative.

Anyhow, I discussed it with my GP and we both agreed that I might as well go Gluten free, so I have now been that way since April.

I also have Pernicious Anaemia for which I have 6 weekly injections (Schilling test positive so not malabsorbtion), and Auto immune Hypothyroidism. Vit D, Iron and Folic Acid all supplemented.

Freelancer....how "lowish" were your B12 results? You could still be feeling bad because you are not supplemented enough?? I have gone from 12 weekly, to 8 and now to 6 weekly injections. Feeling a lot better at this frequency.

E,x

[freelancer in reply to Eccentrica]

Hi I was about 140 in August 2008. Two years on from that I was 480ish then six months later had a test which I haven't got the records for but was maybe a bit higher. This February I was 900 after five months properly gluten free and frankly I'd expect it to be off the scale now, but won't have another test until the spring unless there's a problem. I've been on 12-weekly jabs all the way through.

Generally I'm feeling fine now (which I certainly wasn't until the last six months). It's just the intensity and sensitivity of my gluten reactions when I do get them that is worse.

Until six months ago I thought this was all about infrequency of B12 jabs. As my doctor's never been all that flexible on this, I started thinking maybe I'd have to go private or self inject. I went to the PA Society's conference this year to find out more about it all - then I stopped feeling as if I needed it at all. Which has rather confused me, as everything points towards malabsorption but I thought the Schilling test was infallible.

It's really great that you've been able to adjust the frequency of your jabs to suit you - it makes all the difference. That's what they should do and frequently don't!

[CATRYNA49]

Maltodextrin is made up from either corn or wheat and generally GMO. I cannot tolerate it because of having the Celiac associated skin disorder Dermatitis Herpetiformis os DH. The last time I was given Maltodextrin, I broke out on the right side of my face, neck and inside my right ear with DH itchy blisters.