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India

Suggested Supplements

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Hi all,

Could you helpful people advise what supplements I should be taking? I live in the UK and my help from our health service hasn't extended much beyond my diagnosis.

Blood tests in January showed I was at the low end of 'normal' for most vitamins, which the doctors say is fine. I do have a prescription for calcium/vit D, given somewhat grudgingly, and I've ordered sublingual B12 tablets even though my doctor said my result was ok (247 in January, 238 after six months gluten-free). I'm hoping they'll help with my fatigue/memory/concentration problems.

However, I keep reading about other supplements that could help my continued GI problems, which haven't improved -at all-. L-glutamine, prebiotics, probiotics... what should I be taking? At present, I'm avoiding corn, soy or dairy.

Thank you!

Allie


Self diagnosed but confirmed by biopsy

Gluten free Jan 2010

MSG free Jan 2010

Corn free Apr 2010

Soy free Jun 2010

Following a FODMAPS plan

Also have RSI, widespread myofascial pain and hypermobility problems

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Your B12 is quite low and I am glad you are supplementing it. What are you eating? You should go with as much fresh unprocessed food as you can as it will help you heal faster. Do watch out for gluten-free foods with Codex Wheat Starch, which I think is more common over there than it is here in the US.

Digestive Enzymes might help you out but do read the labels and make sure they are gluten free. It is good that you are also avoiding soy and dairy for now as avoiding dairy can be really important in the beginning and many of us do have issues with soy. After you have healed well you can add them back in one at a time and see if you tolerate them.

Do you like saurkraut? It has probiotic elements that may help if you like it.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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My daughter can't have dairy and I found that many sublingual B12 tablets are cultured on a dairy product, so make sure it is casein-free!

You could also try a B complex supplement - if your B12 is on the low side, the other B's might be too.

Not all probiotics are created equal, so do your research there. There should be over 1 billion live cells per dose. Make sure if you order them that they are rush-shipped and do not sit out in the sun, as heat will kill probiotics.


Older child dx with gluten sensitivity via high IGG gluten

Also very high IGG to milk, eggs, tomatoes, some other fruit and veg

Low vitamins and minerals (vitamin malabsorption)

Neg. celiac panel EXCEPT low total IGA

22 AGA IGA on Enterolab

Younger child with 118 AGA IGA and 26 TTG on Enterolab

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i love L-Glutamine! it really helps heal the gut.. i also LOVE Ghee! (clarified butter)- it contains Butyratic Acid or something that heals your small intestine.

and yes- your B12 is too low... take your tablets- and even look into shots- see if your doc or a clinic nearby does them. my sister in laws was at 200, and she was already weak & having tingling in her hands & feet. the shots helped her a lot.


1986- Elevated Speckled ANA/no Lupus.negative Sjorgens

2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.

no biopsy (insurance denied)

6/2010- Enterolab Gene Test:

HLA-DQB1 Allele 1 0302

HLA-DQB1 Allele 2 0302

HLADQ 3,3 (subtype 8,8)

7/2010- 100% Gluten Free

8/2010- DH

10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

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I wouldn't like to say what would be best for you as we all react so differently but I have benefited enormously from l-glutamine, probiotics, vitamin B complex, calcium/magnesium/vitamin D combo, plus a separate zinc supplement as I tested very low for zinc.

But whatever you choose to supplement with, make sure it really is free from gluten and your other allergen foods, & that it was not based on a dairy or soy culture. And buy good quality supplements. Personally, being British, I would advise you avoid the high street brands such as Holland & Barrett, Boots & Superdrug. Either find yourself a good pharmacy or order online. "Quest" have a good range of allergen free, high quality supplements, which you can get online or maybe in H&B. I use either Quest or Bluebonnet or Solgar products but I live in Dubai and so have access to some US brands that you might not be able to find in UK.

I would also recommend that you read the advice on this website and don't bother with the UK Coeliac website. I paid to register with that & am very disappointed with the info available. Also, as a previous poster mentioned, the UK/EU has less stringent labelling laws/gluten standards. For instance Coeliac UK says that malt vinegar is OK, & therefore the likes of Waitrose can claim that their pickles are safe for Coeliacs - NO, malt is not OK. Personally I go by US or Aussie standards for what is safe and what isn't.

I had to quit dairy, soy and a lot of other foods before I really progressed, and I had to change to all gluten free skin care products, and make our home totally gluten-free but I know that others manage in a shared household so you just have to work out what is right for you. And listen to your body or to info here, don't be deterred by doctors or family members who are sceptical or ignorant as so many are.

It does get easier, especially once you start to feel better or notice improvements, so hang on in there - we're all here to support you.

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Thank you all for your replies! I've been looking into your suggestions already. I already buy from Solgar to avoid soy, maize starch and other nasties I keep finding in the best-known brands. Their B12 is vegan friendly so presumably casein free.

My diet for the last few months has been fairly pure - hardly any processed food except for things like hummous and chocolate (down to a choice of two bars, for pure ingredients and no soy). My home and products are all gluten free. I'm trying really hard at the moment to identify other food intolerances.

I was also interested in DG61's comments about Coeliac UK. I am a member but I am troubled by several aspects of their work. As you said, they say that malt vinegar (and also maltodextrin) are safe for coeliacs. They also seem to be in thrall to the gluten-free food companies and promote a lot of unhealthy products - including ones made from Codex wheat starch, which I would never consider eating. They also hardly acknowledge many coeliac-related problems, including food intolerances, and instead give the impression that once you're gluten-free, everything will be fine. Bah...


Self diagnosed but confirmed by biopsy

Gluten free Jan 2010

MSG free Jan 2010

Corn free Apr 2010

Soy free Jun 2010

Following a FODMAPS plan

Also have RSI, widespread myofascial pain and hypermobility problems

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Hi DG61 - I made a general reply but realised I'd also like to ask how you figured out which foods to cut out? I don't eat corn or soy and I've also cut out dairy, but my symptoms are always present so it's hard to find other trigger foods (though millet and teff were not fun to try). I'm really struggling with an elimination diet at present but if you have any other suggestions, I'd be glad to hear them.

Thank you :)


Self diagnosed but confirmed by biopsy

Gluten free Jan 2010

MSG free Jan 2010

Corn free Apr 2010

Soy free Jun 2010

Following a FODMAPS plan

Also have RSI, widespread myofascial pain and hypermobility problems

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The Solgar sublingual B12 isn't the methyl form, which is what you need. I know, because I have an unused bottle (minus one tablet) taking up space in my medicine cabinet...


Older child dx with gluten sensitivity via high IGG gluten

Also very high IGG to milk, eggs, tomatoes, some other fruit and veg

Low vitamins and minerals (vitamin malabsorption)

Neg. celiac panel EXCEPT low total IGA

22 AGA IGA on Enterolab

Younger child with 118 AGA IGA and 26 TTG on Enterolab

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Thanks for this - I really could scream today! I looked at the methyl form that Solgar offers and it's not sublingual so I didn't bother with it, but I guess I should see what else I can find. Sigh.

I've done so much online research on coeliac disease in the last year but there's always more to learn. This condition really clashes with my RSI problems...


Self diagnosed but confirmed by biopsy

Gluten free Jan 2010

MSG free Jan 2010

Corn free Apr 2010

Soy free Jun 2010

Following a FODMAPS plan

Also have RSI, widespread myofascial pain and hypermobility problems

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Hi India, figuring out intolerances is difficult and I'm still only learning my way. But keeping a diary really helps - I write down all that I eat and drink, and all supplements or pills taken, plus all toiletries or skincare products used. That does make it easier to spot trends. And I have found that the longer I have been gluten-free the more severe my reactions to other foods have become so in some ways that is helpful. I also think I am better at "listening" to my body now and knowing what is right for me regardless of what the doctor says.

My other intolerances usually show up as skin or sinus trouble but in the past these were milder and took longer to kick in so it was easy for them to go unnoticed or be blamed on something else. It sounds as if you're doing all the right things so I think you maybe have to be patient now - give your body more time to heal and give yourself more time to get good at recognising your symptoms/responses. It has taken me a long time to progress but then, until recently, I wasn't even aware that Celiacs often have secondary food issues - and I only learnt that from this website, not from my doctor.

So go easy on yourself, keep foods simple (nothing processed, and as many single ingredient foods as possible) and hopefully you will either start to feel better or start noticing the trends. And if you're not already totally gluten-free in the kitchen see if your family members are prepared to go gluten-free with you - I was certainly still sick whilst we still had gluten foods at home. Thankfully my husband is very supportive, especially as I am not a good cook (he is a real star!) but for him the benefit is having me get well again. But I struggle to get any support from my parents as they consider gluten-free diet to be a "fad"!!!

Glad that I'm not the only one who is unhappy with Coeliac UK. I consider that my registration fee with them was a total waste of money, and I don't even bother looking at their website or information now. I only read US or Aussie websites, but I do resent the fact that my UK family & friends only get to hear the incomplete/incorrect info that is provided in UK. But like much to do with this disease I have to grit my teeth and ignore what others think, I'm learning what is right for me and I don't care what anyone says about my diet or lifestyle.

I think it scary how much rubbish is now in the food chain and in toiletry and cleaning products and I constantly email manufacturers about their ingredients and processing methods so I can only hope that some of them will start to get the message. And for now I buy as much organic or natural stuff as I can. That is expensive but I figure that my health is worth it, plus my expenditure on eating out and going on holiday has reduced to nearly nothing.

I hope you start to feel better soon, but recovery can be so slow, and with lots of ups and downs - hang on in there.

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Thanks for your reply and good wishes. Are you starting to feel better now? I wouldn't mind what I had to do without if I felt better!

I'm keeping a food diary again, but it pretty much says 'ate - bloated - tired out - still don't need the bathroom'. So apart from a few particularly unpleasant foods, it's been really hard to figure out what the problems are. I'm trying to persevere with an elimination diet as it's been nearly seven months and I'm almost none the wiser with my secondary intolerances. I am, however, shrinking in size and much less able to hold a decent conversation. I'm a pretty good cook and I've enjoyed discovering a lot of new dishes since going gluten-free but now I don't know what I can eat at all. I've been trying so hard to look after myself and it's come to nothing so far. Dammit.

Without reading all the messages on this forum and having the support of my husband (he's gone gluten-free a home for me), I think I would have lost my mind my now. Like you and I guess many others, my family don't really understand any of it. By the way... have you seen the Coeliac UK welcome video that shows a coeliac sharing a colander with her family...? I didn't bother showing that to my relatives!


Self diagnosed but confirmed by biopsy

Gluten free Jan 2010

MSG free Jan 2010

Corn free Apr 2010

Soy free Jun 2010

Following a FODMAPS plan

Also have RSI, widespread myofascial pain and hypermobility problems

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Hi India - & anyone else who is taking a long time to improve,

Please don't despair, I know it's miserable to continually feel unwell but it does just take some of us longer to recover or get our diet right, and it is really important to stay positive.

Thankfully I am now feeling good again. And amazingly, am starting to gain weight so hope that means I'm healing well, as for many years I've struggled to maintain let alone gain weight, and being so poorly over the last 2 years has left me badly underweight. But I am down to eating just a very small range of "safe" foods & attempts to add new foods or re-introduce old foods are not proving successful so I guess I still have a long way to go.

It took 6 months before I really started improving but my progress only occurred after we moved to a brand new apartment, when my husband also went gluten-free and we bought all new kitchen/dining equipment. And all our toiletries & cleaning products as well as food & drink are gluten-free. At this time I also started seriously with the supplements and for me l-glutamine has proved to be a big help, but I don't think there is any one supplement that works for everyone. I know you buy good quality supplements but do check that you take these at the best times, & in the best food/non-food combinations - I learnt more online about this than from the instructions on the bottles, as many vitamins/minerals work against each other.

I don't eat out - Dubai restaurants rarely offer a gluten-free menu & as serving staff can hardly speak English I am not happy to take the risk. And I don't eat at friend's or family's homes as I know I got sick in my own "shared" kitchen, & others just don't follow understand the complexities of gluten-free life. All my meals are home cooked using only fresh ingredients (preferably organic) & a few gluten-free products (i.e. rice cakes, Bobs Red Mill buckwheat groats, but nothing that is really "processed"). I would like to try the likes of quinoa, amaranth, teff etc but the only brands sold here are produced/packaged in "shared" facilities so I'm not risking those. All this cooking is dreadfully time consuming, as I try to eat 3 or 4 meals plus 3 or 4 snacks a day, & to cook more interesting gluten-free meals for my hubby (cannot expect him to survive on my few "safe" foods) but I am improving so it has to all be worthwhile (even if it is at the expense of my leisure time - groan!).

I know you only have the NHS for healthcare, & I also know how poor that is (had it been left to the NHS my husband would have been permanently paralysed in 2006), so suggesting you see another doctor is clearly not an option. But are there any support groups in your area, or could you see a private (& knowledgeable) nutritionalist/dietician? I do know of a good US nutritionalist who will do consultations by Skype or phone - one of my Dubai Celiac friends has used her with wonderful results. Send me a PM if you want the website details/contact info.

As for Coeliac UK I haven't seen their video but had already consigned their website to my "trash". I am appalled at their misinformation but don't know what can be done about it, & don't personally have time or strength for a crusade. I did read somewhere, but can't now remember where, that UK/EU was considering allowing a "low gluten" label for food with up to 200 parts per million gluten - how bad is that?!!!!!!

Anyway don't despair as you are doing all the right things. I hope you start to notice some improvement soon. Keep reading this website because sometimes just the smallest snippet of advice can be useful. And the support from others is always a help.

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Hi India

Am bumping this up in case you missed it.

Also I realised my mistake - UK is already allowing the 200 parts per million on products, hence codex wheat starch and malt etc being deemed OK. It is only the likes of the "free from" ranges that seem to be under 20 parts per million and even those do not provide details of what testing they carry out to ensure this. So be careful with what you purchase. Personally I would like all countries to be like Australia and only allow up to 5 parts per million in any gluten-free stuff, but with the food giants holding such power and political sway in certain countries that is very unlikely to happen.

Take care everyone.

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Hi India

Am bumping this up in case you missed it.

Also I realised my mistake - UK is already allowing the 200 parts per million on products, hence codex wheat starch and malt etc being deemed OK. It is only the likes of the "free from" ranges that seem to be under 20 parts per million and even those do not provide details of what testing they carry out to ensure this. So be careful with what you purchase. Personally I would like all countries to be like Australia and only allow up to 5 parts per million in any gluten-free stuff, but with the food giants holding such power and political sway in certain countries that is very unlikely to happen.

Take care everyone.

Hi there and thanks for this. As I understand it, the law has changed so that by 2012, only food with <20ppm can be labelled 'gluten free' and anything with 20 to 100 ppm will be labelled 'very low gluten', which will include Codex wheat starch. I'm not sure how this will affect labelling of malt vinegar and maltodextrin. Until this month, I was using a chicken stock labelled as gluten-free which contains maltodextrin and I've decided to stop using this. I've heard it affects people and I'm not sure if it's causing me trouble or not. I'd like to have the Australian system too!

http://www.coeliac.org.uk/food-industry/manufacturers-and-retailers/codex-standard-for-gluten


Self diagnosed but confirmed by biopsy

Gluten free Jan 2010

MSG free Jan 2010

Corn free Apr 2010

Soy free Jun 2010

Following a FODMAPS plan

Also have RSI, widespread myofascial pain and hypermobility problems

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that the industry is allowed to label things as gluten free even with minute amounts PISSES ME OFF- why is that ok AT ALL??????

oh & PS. India- i mentioned B12 shots- which i DO swear by- but unfortunately not every shot is the same... some are very "clean" & of course BENEFICIAL to u- i didnt think i needed to be investigative about it- but i do now- cause the last shot i got- had Aluminum in it :angry:


1986- Elevated Speckled ANA/no Lupus.negative Sjorgens

2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.

no biopsy (insurance denied)

6/2010- Enterolab Gene Test:

HLA-DQB1 Allele 1 0302

HLA-DQB1 Allele 2 0302

HLADQ 3,3 (subtype 8,8)

7/2010- 100% Gluten Free

8/2010- DH

10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

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I know, it's crazy - I'm cutting matlodextrin etc because I don't trust the advice of Coeliac UK.

My doctor says I don't need B12 shots despite a fairly low score and private healthcare is so expensive in the UK, so I'm trying supplements for now. I'll keep this in mind though, as I didn't know that - thanks :)


Self diagnosed but confirmed by biopsy

Gluten free Jan 2010

MSG free Jan 2010

Corn free Apr 2010

Soy free Jun 2010

Following a FODMAPS plan

Also have RSI, widespread myofascial pain and hypermobility problems

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