Jump to content

Follow Us:  Twitter Facebook RSS Feed            

   arrowShare this page:

   Get email alerts  Subscribe to FREE Celiac.com email alerts

Celiac.com Sponsor:                                    


Member Since 06 Apr 2011
Offline Last Active Aug 04 2013 04:16 AM

Posts I've Made

In Topic: Dietery Advice Badly Needed! How To Live Without Grain?

01 August 2013 - 06:58 AM

Oh! gotta have another little grumble about the NHS.


To my great surprise, they were actually willing to prescribe the Vit D for me! (since i qualify for free prescriptions, this is an imprtant difference). However these turned out to have geletine capsules (not veggie!) and...wait for it...peanut oill (which I react to very horribly)


i was told that these were the only ones I could have on prescription and would have to buy my own Vit D, if not suitable *Sigh*


Shoulda guessed that in the first place.



In Topic: Dietery Advice Badly Needed! How To Live Without Grain?

01 August 2013 - 06:50 AM

Thanks for all the replies! :)


I should perhaps add  that my research into my symptoms suggests an underlying systemic disorder of some kind, plus a shedload of complications, including probably some of the things you've mentioned. I've had all kinds of tests , but nothing has ever showed besides vit D deficiency (now supplementing). I think the main problem is that the NHS isn't willing to offer the right sort of tests, which would include a gut biopsy IMO, as the food issues began with gluten (about 7 years ago)and I'm sure my symptoms suggest some pretty serious bowel damage, though i tested  negative for antibodies.


The foods that  I now avoid all cause me bring up  ridiculous amounts of wind 5-6 hours later. And I do mean ridiculous. It can hard to catch my breath inbetween burps, and it fel as if my stomach is in danger of exploding.  At the same time, I feel nauseous and suffer a range of acute neorological symptoms. Plus other symptoms, depending on the specific food. Given the wide range of foods that cause these acute reactions, its enough of a challenge to devise a healthy, affordab;e diet out of what's left. And if i ever manage that much, then it will time to consider if some of those foods might have a more subtle effect, I think. And if i might be better off cutting some of those out too.


Obviously, for a Briton on a very low income, cutting out bread and potatoes is nigh-on impossible, so i'm very glad to report that, whatever the theory says, I do tolerate potatoes ...at least a lot better than those other things.


As regard the refined sugar: yeah i know that's not a good compromise, but it is very cheap and readily available, and the only other realistic instant energy food that I've found is bananas ( i mean instant in the sense that it takes no preperation and cooking, which is often very important factor). I've ben using this since I realised  that my "seizures" (in quotes because it hasn't been confirmed if they aere actually seizures or not. they just look that way) are most often triggerered by low blood sugar, if not exercise (which would lead to low sugar, right?so that's to say the same thing, i suppose), Since I made a point of eating something every 4 hours, if only a handful of sweets, I've had much less trouble with this, and that overrides the general health considerations. If I do have one of these "seizures", then  I usually spend the next three days sleeping most of the time, and feeling pretty groggy when awake. Then  everything, diet included, goes to pot! It's a case of choosing the lesser evil, there!


By the way, I'm sure my menopause had a very big negative impact on all this. I asked my GP about HRT,but she said they don't like to prescribe it these days due to side effects ( Am I being cynical for suspecting it's more due to cost? :lol: )





My first thought on this is B12 - I'm very surprised your dietician didn't mention it.

Since it is mainly found in animal products, it is a special concern for vegetarians and if I remember correctly, Marmite was about the only rich source of B12 to be found in a vegetarian diet (other than through pills or fortified foods)......It is also one of the vits we (gastrically challenged people) tend to be low on.......Fancy trying some marmite? When I was vegetarian, I used to put it in soups, stews and gravies...


Edited to add:

have a look here:




Individuals with gastrointestinal disorders
Individuals with stomach and small intestine disorders, such as celiac disease and Crohn's disease, may be unable to absorb enough vitamin B12 from food to maintain healthy body stores [12,23]. Subtly reduced cognitive function resulting from early vitamin B12 deficiency might be the only initial symptom of these intestinal disorders, followed by megaloblastic anemia and dementia.


Strict vegetarians and vegans are at greater risk than lacto-ovo vegetarians and nonvegetarians of developing vitamin B12 deficiency because natural food sources of vitamin B12 are limited to animal foods [5]. Fortified breakfast cereals are one of the few sources of vitamin B12 from plants and can be used as a dietary source of vitamin B12 for strict vegetarians and vegans.


I've repeatedly tested as OK for B12, but then that's one of the things that's added to Soyamilk. And it's also in the probiotic supplements I'm taking.


I used to love Marmite! Yes, I put in soups and stews, just  the same ! But I have sufferered from candida overgrowth, in the past, and heard it's beast to avoid yeast products in that case? Anyway, I've cut out in the course of elimination diets of course; and never yet quite had the courage to try re-introdcing it.


Not sure how I'd eat it now. can't spread it on bread! And i just don't have the stamina, and co-ordination,  for making soups and stews anymore :( . I got tired of makinfg a huge mess of the kitchen, scalding myself and/or falling asleep before I'd finished preparing my meal! (the last being what totally discouraged me in the end). But I'm sure I'll think of something (maybe spread it on my microwave-baked parsnips?)

There's actually a lot of vegetarians or ex vegetarians on here compared to the general population, being vegetarian is great in theory so long as you can do it without processed foods and without grains.. But how are you going to do that long term in the modern world. The problem is not the meat, the problem is the grains and you can't get enough nutrition to heal while dumping the grains without it. That's my opinion ;) I have an incurable disease now and perhaps a quite short lifespan and a newborn boy to look after.. was it worth it to save 10 cows... depends on your opinion maybe. But my opinion is unless you majorly change your diet you'll continue to get sicker and then you'll get an auto immune disease or a genetic error and something much worse. Don't mean to scare you but that's the truth. I still eat practically as a vegetarian, probably more vegetables than I ever did, because I don't eat grains and in fact I'm mostly raw I just also eat meat now, quite a bit of that I eat preserved raw also.


You can get back to me once you've done your 20 years vegan and let me know how you got on :).

well, I gave up meat and eggs about 30 years ago, and dairy 7 years ago, due to intolerance. So that averages to nearly 20 years I guess :lol:

Interstingly , I gave into my cravings for eggs, when I was pregnant with my son 24 years ago, just in case my body knew what it was doing  (I fondly recall how his Dad used to drive me to a nearby farm once-a-week , to buy them. We could see the chickens happily scratching round the shed where the eggs were sold, and the ducks in the pond, so no doubt about them being proper free-range eggs :) )   I gave them  up again afterwards, but my son remains a fanatic for eggs!

My five cents...


Having the same symptoms - looong list of food intolerances and low blood sugar levels, I could deduct 2 problems:

- leaky gut

- adrenal fatigue


As for low sugar  levels - if this goes along with low pressure - this points to adrenal fatigue. Taking sugar is not a best idea! It does only temporarily help but does not cure, in addition it does feed candida that worsens both leaky gut and adrenal fatigue.

To treat adrenal fatigue those are golden supplements: Vitamin B5 (pantothenic acid) and licorice root (non DGL). Licorice is also great for leaky gut.


I used to be vegan - oops - hits bad my adrenals. I had to reintroduce fish. But only fish (no meat/dairy/eggs)

As for grains - I have no problem with buckwheat and millet - both are excellent source of well-balanced protein. Have you tried those?

Teff is another good option.

Rice is bad for me as well.


I would have to agree that potatos are bad, soy is bad and coffee is too bad :)

I used to love liquorice, but liquorice sweets always seems to have added ingredients that I can't tolerate (and/or gelatine ofc) plus they are chewy of course, as are the natural  liqorice sticks that i bought for a time. I wonder if there's a simple way tp mke natural liquorice less chewy? (lost all my teeth now)

In Topic: Dietery Advice Badly Needed! How To Live Without Grain?

30 July 2013 - 08:54 AM

#1 stop eating all oils that don't come from meat (coconut is OK but mostly from meats) totally and I mean don't even have them in the house, stop eating potato, don't eat sweet potato. Eat lots of Chicken (seems I'm doing a lot of ex vegan anti veganism today lol). Cook everything in lard or ghee or butter if you have to. Don't eat fruits (esp citrus and banana) for a while but you can after a couple months. I find kiwi fruit no problem to eat unlimited amounts. Don't eat any grains, not even rice.


That's my experience of what messes you up the worst. Chicken is easy to throw in the oven and roast, fairly cheap for the nutrients you get, you can throw some pumpkin in there too, it digests well, after a little while on chicken go for some fatty mince meat into burger or something like that (that's how I started). You can live on that plus some leafy vegies and probably do much better than you are on a restricted vegan diet. In the end us long term vegans have to come to terms with not eating animals and dying or living, I know it's very hard but you really do need to put yourself first for the sake of your family at least in the end. Don't eat boiled lollies!.. You want to be walking around with a box of cold chicken and a litre of green smoothie (or red smoothy if it's got beetroots with a full ginger in it rather than lollies. 


Basically pretend it's the year 1890 and there's no grains left in the world and you will be OK.

Heck, give up potato and fruit as well is the last thing I need to  hear :lol:

I think I'll pass on this  lot. one man's meat is another poison, as they say, so whilst I'm sure it works for you, I'm not all convinced that vegetarianism is an issue. I don't see  veggies posting here in huge numbers, as would surely be the case if a veggie diet contributed to gluten sensitivity etc.


jay  :)


Sorry to hear of your troubles.  If you can have soy milk, then I assume that you could have soybeans as well?  You can get canned ones here.  Can you get canned ones there?  Can you eat any other beans?  Peas? Can you eat seeds?  I sometimes use hemp seeds and chia seeds for protein.  They're not exactly cheap though.


As for the deficiencies, I can relate.  I take a handful of supplements every morning and night and more with dinner.  They're not cheap!

Well, I found the Boots ones to be surprisingly cheap, and they seem to contain full RDA of just about everything, as regards vits . Just a  bit concerned about amino acids.


I haven't dared try soybeans, nor Tofu (formerly a favourite) , since reacting to all the other legumes I've tried. Coffee (usually granulated)  and soy milk are the only exceptions I've found; and I have an idea that whatever -it-is I'm reacting to might have got processed out of the beans. So, supposing I ate the unprocessed beans and had a reaction? That might, conceivably sensitise me.


Highly theoretical, but given my dependency on Soymilk, not worth the risk.


My experiences with seeds have not been good :( . So before I even thought about trying to add some expensive seed to my diet, I'd want to there to be clear benefits that I couldn't get any other way.


It goes without saying that the variety of foods available these days  is too vast to experiment with everything, so there might well be things that would work for me, but i never found good enough reaason to try.  Was kinda hoping that somebody would know exactly what a meat-free , grain-free would be likely to miss, and how to compensate for that particular imbalance.


Thanks for the response :)

In Topic: Should I Bother Getting Diagnosed?

28 July 2013 - 05:24 AM

If I could re-run  my own life, I'd go a diagnosis now, whilst the symptoms are relatively mild, as they do tend to increase with increasing exposure to gluten; and you don't sound convinced enough to stick this out long-term. Also, you probably haven't even done enough research,yet to fully eliminate Gluten from your diet. It crops up in some very surprising places.


Yes, there is certainly  a danger of getting a false negative;  also, you might be gluten intolerant rather than celiac (which basically means you get the symptoms, but no detectable antibodies etc). Don't rule that out!  Still, the possible benefits of a timely diagnosis outweigh the problem of a false negative, IMO (which is only as muchof a problem as you let it be! To the medical profession, refusal to do the challenge and negative result are just about equally weighted, in my experience )


Whichever you choose, good luck!


jay :)

In Topic: I Don't Suppose I Shall Ever Get Diagnosed, Shall I?

28 July 2013 - 02:28 AM

I had no idea about the nerve tooth thing and your information is very interesting to me. I have always had good teeth but started to have pain inside my teeth. Then gum swelling and pain but no signs of periodontal disease or cavity. Dentist didn't do anything...said there was nothing to treat. After a year of this nagging nerve pain, my teeth started to decay very rapidly. I got a root canal...the pain stayed. The exact same pain in the next tooth over. The next few months that tooth went. I think it is Celiac related because all my other symptoms were happening at the same time.

All tooth pain is gone now that I am gluten free.

I have had two huge episodes of rapid tooth decay, both happened during pregnancy. I think my body was fighting to give the baby the nutrients and my teeth suffered the vitamin deficiencies C and D and Calcium? These are the things you made me recall with your post. Celiac effects everything.

I so hope you get better fast and that it really is all gluten related and not MS.

I'm glad someone gave you the gluten ataxia article. We always thought clumsiness just ran in our family! Well that's kinda true but it isn't just clumsiness...it's Celiac gluten ataxia.

No end to the evils of wheat.

excuse belated reponse! (i've been absent from this forum, past 2 yesrs)

interesting info!


I just want to clarify, I'm not worried about MS (since an MRI scan - albeit arguably- ruled that out) just saying that if gluten can cause MS (which appears to be a perfectly respectable theory) then no reason why it can't cause TG, by the same mechanism (demyelination). That would neatly explain why early-onset TG can be a sign of MS wouldn't it? I mean, i just roped MS in to support my argument . Sorry if that  muddied the waters!


jay  :)