Decreasing Nutrient Levels After Following Diet

[Thomasm5]

I was diagnosed about 2.5 years ago and have been following the diet with only getting glutened a few times. Recently I've been having fatigue and brain fog issues. My doctor did some tests and I'm low in B12, D and calcium. All the levels are lower than when I was first diagnosed. Can it take this long for your body to start absorbing certain vitamins? Anyone have any experience with decreasing nutrient levels even if your following the diet? 

[cristiana]

Hello Thomasm5 and welcome to the forum

Aside going gluten free, has your diet changed in other ways?  If you are eating more vegetables and less meat, for example, that could account for there being less vitamin B12 in your diet.

Also, prior to your diagnosis, were you consuming bread and cereals made with fortified wheat flour? In the UK, calcium, iron, niacin and thiamin are added to wheat flour by manufacturers, for example.  Not all gluten free equivalents have this.

Lastly, with regard to vitamin D, has your lifestyle changed at all?  My vitamin D levels were better at diagnosis than they are now, but I realise I spend much less time outdoors these days and I think that could have a lot to do with it.   I am now supplementing.

Cristiana

[trents]

Thomasm5, have you had a followup antibody test or endoscopy/biopsy since being diagnosed to check for compliance and healing of the villi? It's time for one.

Studies show that most people who believe they are on a gluten free diet are actually on a lower gluten diet. This is especially true for those still eating out.

Also, are you still consuming dairy or oats. For some celiacs, the protein casein in dairy can cause villi blunting as does gluten and the same is true of the oat protein avenalin.

[Thomasm5]

7 hours ago, cristiana said:

Hello Thomasm5 and welcome to the forum

Aside going gluten free, has your diet changed in other ways?  If you are eating more vegetables and less meat, for example, that could account for there being less vitamin B12 in your diet.

Also, prior to your diagnosis, were you consuming bread and cereals made with fortified wheat flour? In the UK, calcium, iron, niacin and thiamin are added to wheat flour by manufacturers, for example.  Not all gluten free equivalents have this.

Lastly, with regard to vitamin D, has your lifestyle changed at all?  My vitamin D levels were better at diagnosis than they are now, but I realise I spend much less time outdoors these days and I think that could have a lot to do with it.   I am now supplementing.

Cristiana

Hey cristiana, thanks for the comments. Before my diagnosis I did eat a lot of cereals and breads which I'm guessing is where I got a lot of my vitamins. I usually only eat small portions of meat to keep down on costs so is it possible that I haven't adjusted for the lack of eating fortified foods and have been slowly using my vitamin storage? Trying to eat and get everything you need has always been a mystery to me,   do you know of any resources to help with that?  

I think I'm in the same boat as you with the vitamin d, I'm spending a lot more time inside especially with working from home. 

[Thomasm5]

6 hours ago, trents said:

Thomasm5, have you had a followup antibody test or endoscopy/biopsy since being diagnosed to check for compliance and healing of the villi? It's time for one.

Studies show that most people who believe they are on a gluten free diet are actually on a lower gluten diet. This is especially true for those still eating out.

Also, are you still consuming dairy or oats. For some celiacs, the protein casein in dairy can cause villi blunting as does gluten and the same is true of the oat protein avenalin.

Hey treats, thanks for your comments. I haven't had a follow-up endoscopy, covid has made it hard to get in and see my GI but I have an appointment next month so I'll ask then about doing one. 

I don't eat oats but I'm going to try and cut out dairy and see if that does anything. 

[cristiana]

2 hours ago, Thomasm5 said:

Hey cristiana, thanks for the comments. Before my diagnosis I did eat a lot of cereals and breads which I'm guessing is where I got a lot of my vitamins. I usually only eat small portions of meat to keep down on costs so is it possible that I haven't adjusted for the lack of eating fortified foods and have been slowly using my vitamin storage? Trying to eat and get everything you need has always been a mystery to me,   do you know of any resources to help with that?  

I think I'm in the same boat as you with the vitamin d, I'm spending a lot more time inside especially with working from home. 

Hi Thomasm5

Definitely worth taking up Trent's advice.

However, I would say if your diet and exposure to sunlight has changed, that would probably also make a difference.   

I don't know where you are posting from but coeliacs in the UK, where I live, can see a nutritionist through the National Health Service who give free dietary advice.  I also paid to see one privately and I got an hour and a half for £60 which was well worth it.  A well-qualified nutritionist should be able to advise you on addressing deficiencies through  diet, although interestingly, even my private nutritionist, who is one of the best in her field in the UK, was of the view that coeliacs who have deficiencies should supplement when healing and not rely wholly on diet to provide everything.

That said, even though my TTG numbers are normal, and I've had two endoscopies since being on a gluten-free diet showing that my gut has healed, if I don't supplement D and B12, they drop noticeably between blood tests.   I struggle to keep the levels correct through diet and lifestyle.  My consultant gastroenterologist has put me onto a D supplement on prescription called Fultium D 800 iu and I take Solgar vitamin B12 sublinguals (sold over the counter) when my levels are low, or sometimes Berocca.  I don't know where you are posting from but you may be able to get the same products or something similar where you live.

Do speak to your gastroenterologist about supplementation.  It would be best if s/he kept an eye on your levels.   I used to supplement ferritin but then my hemoglobin went up too high which causes other issues - one can have too much of a good thing!

Cristiana

[trents]

Thomasm5, you mention you have cut down on meat consumption as an economy measure so I'm not sure you can afford supplements. Many celiacs develop B-vitamin and D deficiencies. And vitamin D is instrumental in bone health so there may be a tie in there with the calcium deficiency. If you can afford it I certainly would suggest you start taking a high potency B-complex and 5000IU of D3 supplementation. Costco's Nature Made vitamin and supplement products gluten free and excellent quality.

[Wheatwacked]

20 hours ago, Thomasm5 said:

Anyone have any experience with decreasing nutrient levels even if your following the diet? 

http://nutrientlog.doodlesnotes.net/  A log of what I ate with nutrient totals. 

My current daily supplement list:

B12, B Complex. 1000 mg B5, 840 mg Phosphotidyl Choline, 15 ml Cod Liver Oil (for vitamin A), 5 mg Lithium Orotate, 1000 mg vitamin C, 1000 mg Calcium, 10,000 IU (250 mcg) vitamin D, 2 ounces almonds (for vitamin E), 2 sheets of organic nori (5 mg) for iodine and 200 mg Selenium, 100 mg DHEA. I target 4700 mg potassium from food sources daily, 10 grams of fresh parsley (for vitamin K). Chick peas, pinto beans and small red beans for folate. I drink 100% Pasture fed grain free milk because it has a better omega 3 content and doesn't upset my stomach and is a great source of Calcium, magnesium, potassium, and phoshorus which together with vitamin K are needed for bone health.

Many non celiac disease people are sick from the same deficiencies, they just are told it is normal aging. Piping Rock is a good inexpensive source for supplements.
High Potency Vitamin D3, 10,000 IU, 250 Quick Release Softgels $12.49.
 

[celioops]

Thomas, 

I've found it to be incredibly hard to meet daily levels of certain nutrients without tracking my diet pretty carefully. If you're eating a lot of gluten replacements (corn pasta, gluten-free crackers, etc) you may not be getting a lot of bang for your buck nutritionally since they are not fortified. You're not alone. Even "regular" Americans have a lot of trouble eating sufficient amounts of micronutrients! https://lpi.oregonstate.edu/mic/micronutrient-inadequacies/overview#shortfall-micronutrients

"Top 10 foods high in [blank]" lists have helped me plan my diet a lot. Here's a link to one I've used for Vitamin D and Calcium to get you started. https://www.healthline.com/nutrition/9-foods-high-in-vitamin-d

Good luck and I hope your levels increase soon!

[Rogol72]

A bit late to this conversation! I have found this tool to be very helpful for tracking nutrient intake and seeing where the shortfalls are ... https://cronometer.com/  ... It's free.

 

[Wheatwacked]

Looks like it does what the spreadsheet I created for myself 2 years ago does.