Is it worth taking vitamin supplements when first diagnosed with coeliac disease?

I already take a liquid iron supplement, as I have been anaemic for a number of years, but am uncertain whether it would benefit me to take anything else.

On the one hand, my system is almost certainly nutritionally depleted, as I have only recently been diagnosed and adopted a totally gluten-free diet - on the other, if my digestive system is still delicate and in recovery, would my body be able to absorb vitamin or mineral supplements?

Any advice would be most welcome...

11 Replies

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  • Your username suggests that you are vegan, and I wonder about your levels of B12.

    chriskresser.com/what-every...

    I was very low in B12 when tested and that was about nine months after going GF. Although technically just inside the NHS normal range, I had started to get neurological symptoms - electric shooting pains from my wrists to my hands, and a kind of mental fog/distress - which both went away when I started taking sublingual B12 tablets, and have never come back.

    I think B12, like iron, is one of the early casualties of a digestive system that's not working properly.

  • Hi Coeliac vegan, our bodies need folic acid to absorb iron properly, which's why it's often given to pregnant women. Please see:

    netdoctor.co.uk/diet-and-nu...

    It also gets complicated because zinc is also an important mineral but taking a zinc and or manganese supplement can restrict iron absorption.

    So stating the obvious the easiest and most efficient way for our bodies to absorb vitamins is to eat fresh foods that are high in natural nutrients, as many supplements are not easily absorbed by our bodies. like calcium which is only chalk and not readily absorbed by our bodies so our bodies actually have to work harder to remove the bulk of it.

    I'd have a full blood test and then see a nutritionist armed with the results and then target your specific needs. And now that you've been diagnosed your villi should recover so your blood levels should recover naturally...well that's the plan LOL.

  • As a nutritionist who often sees clients with CD and digestive disorders it is worth mentioning that research has revealed a number of common deficiencies in Coeliacs especially at the time of diagnosis but equally important is that these deficiencies were often seen years after adopting a GF diet. I often run nutritional lab tests to check for sufficiency and this is something you may wish to consider. Seek support of a nutritionist or a qualified practitioner to help you.

    Due to the increased immune activation in the intestinal tract of people with coeliac disease (CD), the digestive and absorptive processes of those affected may be compromised. Various studies and review papers have demonstrated that many individuals with CD are more susceptible to insufficient levels of B vitamins (thiamin, folic acid, vitamin B12), vitamin A, zinc, iron, magnesium, vitamin D and calcium . A Swedish group followed coeliac patients for 10 years who were on a gluten-free diet and noted they continued to have vitamin deficiencies regardless of their gluten-free status.

    A recent study published in 2012 by Shepherd and Gibson found that

    “Dietary intake patterns at 12 months on a Gluten Free Diet are similar to longer-term intake. Dietary inadequacies are common and may relate to habitual poor food choices in addition to inherent deficiencies in the Gluten Free Diet. They also suggested that fortification may be necessary for this reason.

    Coeliacs are susceptible to pancreatic insufficiencies and upper intestinal damage. Studies have revealed that those with CD may have an increased risk of being lactose intolerant . As a consequence many individuals may eliminate dairy products from their diet potentially reducing intake of calcium rich sources. In addition malabsorption of nutrients including many vitamins and minerals required for healthy bone formation and bone turnover is common including calcium, zinc, magnesium, copper, manganese, B vitamins. To complicate matters those CD often have inflammation throughout the gut and other parts of the body. This is particularly relevant since increased bone turnover has been associated with inflammatory markers and chronic inflammation commonly seen in individuals with CD.

    Iron deficiency anaemia is one of the most common indicators of coeliac disease. This may also be associated with other deficiencies including B12 and folate. One study found one third of adolescent CD individuals had abnormalities in folate or iron status that call for early diagnosis and dietary treatment of the disease to prevent nutritional deficiencies.

    Other issues affecting absorption include low stomach acid, pancreatic sufficiency, bile production - these may all need support especially as the gut begins to heal. Probiotic levels can often be disrupted too.

    Remember everyone is unique - there are some great nutritional lab tests such as Spectracell which can be undertaken to pinpoint your own needs. I would also suggest taking care in the type of supplements you select if you decide to do so - look at the form they are in and whether they will be readily absorbed by the body. I prefer liquids and powders in many cases for this reason

    I have included some references for you below for further information

    Hope this is useful

    Malterre, T (2009) Digestive and Nutritional Considerations in Celiac Disease: Could Supplementation Help? Altern Med Rev 2009;14(3):247-257

    Hallert C, Grant C, Grehn S, et al. Evidence of poor vitamin status in coeliac patients on a gluten-free diet for 10 years. Aliment Pharmacol Ther 2002;16:1333-1339.

    Shepherd SJ and Gibson PR (2012) Nutritional inadequacies of the gluten-free diet in both recently-diagnosed and long-term patients with coeliac disease. J Hum Nutr Diet. 2012 Nov 30. doi: 10.1111/jhn.12018.

    Radlovic´ N, Mladenovic´ M, Lekovic´ Z, et al. Lactose intolerance in infants with gluten-sensitive enteropathy: frequency and clinical characteristics. Srp Arh Celok Lek 2009;137:33-37.

    Mundy G (2007) Osteoporosis and inflammation. Nutr Rev 2007 Dec;65(12 Pt 2):S147-51.

    Thompson et. Al. (2005) Gluten-free diet survey: are Americans with coeliac disease consuming recommended amounts of fibre, iron, calcium and grain foods? J Hum Nutr Diet. 2005 Jun;18(3):163-9.

    Haapa;ahti et. Al. (2005) Nutritional status in adolescents and young adults with screen-detected celiac disease. J Pediatr Gastroenterol Nutr. 2005 May;40(5):566-70.

  • hi and thanks for your very interesting info. My 18 year old son was diagnosed with CD 2 months ago and we are trying very hard to keep him on a GF diet but he is now down to 10 stone but 6ft 3" tall. We understand that his absorption of natural vitamins etc could take up to 12 months, if not longer.

    He is weight training twice a week with his friends and wonders if there is a GF weight gain powder that you might know of? Thanks

  • bicycle thank you for a fantastic post. I think it will be really helpful to me too.

  • Is he vegan? If so then I would look at some of the powders by Sunwarrier or Garden of life - these are good quality although they can be a little pricey. If he is not vegan he may not tolerate Whey as many with CD are sensitive to dairy although it is worth saying that good quality whey protein powders are often very low in lactose but do contain casein.

    If you do want to go for whey then something like Whey to Go by Solgar or Body Balance by Biocare are good. Pulsin do some great protein powders and protein bars - all natural ingredients without added sweeteners or sugar including Hemp protein powders. He may also benefit from an amino supplement in a capsule form as well Amino Sport by Biotics is very good.

    Another addition would be a good quality collagen powder and glutamine powders can be useful post workout too - I like the Collagen Powder by Allergy Research - great for lowering inflammation too. There are also protein powders with vitamins and minerals added including anti-inflammatory options such as Ultra Inflamax by Metagenics - a serving has around 15g protein plus many nutrients to lower inflammation.

    Hope this helps

  • Hi there, this is all very interesting so thanks for giving such a comprehensive reply to Coeliac vegan and I'm sure that many coeliac will be very interested in it.

    Now I am also very interested in what you say about the Swedish coeliac who after 10 years still had vitamin deficiencies and that some coeliac still have inflammation of the gut etc.

    So what I wonder is, has anyone suggested that these coeliac try eating a naturally gf diet and avoid codex wheat, oats and I don't know if Swedish coeliac are allowed low levels of malted breakfast cereals as part of their gf diet like we are in the UK.

    The reason I query this is that before diagnosis I ate whole foods and wholemeal bread and just after diagnosis I went to a food demo by one of the big prescription food companies and it was all much to processed for me so I didn't bother with the prescription route and just ate naturally gf foods and when I was diagnosed I was very anaemic but within 10 weeks felt fantastic and I had a follow up biopsy which showed my villi and blood levels were normal and my specialist told me I could be a blood donor again and I had achieved this without any supplements just food. But I was a single dad with a full time job and found it quite hard sometimes making all my own food from scratch so I tried prescription bread and malted breakfast cereals but could not tolerate them and to my body gluten was gluten regardless of whether it was below codex.

    I now question whether coeliac are allowed to eat too much gluten on their gf diets and I wonder if the less gluten that we ingest then the less that we can tolerate? Obviously this is just an hypothesis based on my personal experiences. And on one level I feel that I am very lucky as I had a full blood screen last year and all my vitamin and mineral levels were normal. My GP even asked me if I was a vegetarian as my cholesterol was low and by iron levels were good and he described me as incredibly healthy. I am also a blood donor and give blood 4 times a year.

    So I must be getting something right. But on another level I feel that coeliac like me are not catered for by codex and feel that I am just as wary of many so say gf foods and I have to read the ingredients before buying anything.

    And I wish that we had the same standards for gluten free that they have in Australia and NZ where they have 5 ppm and no wheat, oats barley or rye as gluten free because in Australia I can eat anything and everything clearly labelled as gf. And going back to my earlier comment on the less gluten we eat then the less that we can tolerate. In Australia the Australian coeliac society did tests on coeliac with pure oats and found that around 23% had a reaction to small amounts.

    I have to point out that I am not trying to be controversial here I am just saying how it is from my perspective as a diagnosed coeliac. Because on one level I have very good health and well being, whereas on another I feel a complete misfit as I don't feel that many foods clearly labelled as gf are suitable for my dietary needs.

    I'm sorry that this is a bit long winded and thanks again for such a comprehensive reply to the original question.

  • Thank you for responding. What research does show us that even minute amounts of gluten will damage the gut and prevent healing so prolonging malsabsorption and inflammation. Total avoidance of ALL GLUTEN is essential for life. Even small intakes can invoke further damage and inflammation – just 1mg of gluten can prevent healing of the gut

    Nut Rev, Vol.62, No.9,Sept.2004:360-363

    But the other issue may be whether you are cross reacting. There is now much evidence to suggest many gluten free grains such as quinoa, rice, buckwheat and corn etc can cross react in some people and have a similar effect to gluten in their bodies. So I often suggest people adopt more of a paleo diet. This is going back to basics with less reliance on processed GF foods. There are a range of new lab tests to check whether you are affected by other foods these are the Cyrex lab tests and I have blogged about these advancenutrition.co.uk/site...

  • Thank you again Bicycle. And if only we could test down to 1ppm or less things could look a lot rosier for us coeliac.

    Now for those of you who are still having issues with your gf diet if you are eating foods like malted breakfast cereals which's within codex of 20ppm of gluten, this is 20mg per Kilogram so with every 100g bowl you're ingesting 2mg of gluten from the malt. So if 1mg can prevent the gut from healing I'd take this as a warning from our nutritionist friend here.

  • Thank you very much, everybody. This has turned into a far more comprehensive and far-ranging discussion than I'd expected, and I am extremely grateful for all the information and advice. I can now go to my doctor's appointment this morning feeling well-informed and fully prepared!

  • Hello again,

    As a postscript to the above, I just wanted to say that, following my appointment yesterday, my doctor has ordered blood tests to check my vitamin and mineral levels, and has also referred me for another bone density scan.

    Will let everyone know how it goes...

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