Vitamin deficiencies, which ones and how long recovery?

[Melissa93]

Hey everyone!

 

I was wondering how many of you had to deal with vitamin deficiencies when they were just diagnosed or maybe even still while on a controlled gluten free diet?

I got diagnosed with celiac disease in November and have been dealing with a large vitamin D deficiency that was found 1.5 years before that. Been taking quite a lot of vitamin D supplements ever since, as I already eat plenty of nutricious vitamin D holding foods, but still don't get my levels up easily. Got my levels checked again after eating gluten-free for about 4 months now, and they have dropped compared to last year but are still within the okay-zone (50 used to be 68 last year March, but coming down from 18).

However, I apparently am now deficient in vitamin A. Honestly have never been tested for vitamin A before, but my new GI wanted to check my vitamin levels as a newly diagnosed patient. Anyone else has had a vitamin A deficiency? I have a very healthy diet, eat a lot of plants but still eat meat (twice a week) and fish (once-twice a week), not much dairy due to lactose intolerence but still eat eggs. Basically there isn't much I can do about my diet, but I am experiencing quite some nightblindness and maybe some other symptoms too (who knows nowadays if your itchy rashy hands are from vitamin A deficiency or over-washing your hands).

 

I know vitamin deficiencies are common in celiac and wondering if anyone wants to share their experience with me, how long it took them to recover etc? And if you had a vitamin A deficiency, were there things you needed to get tested as well, like Zinc? 

[GFinDC]

I had a vitamin D deficiency for years before and after going gluten-free.  I was ok on the A though.  I suggest you check your vitamin D brand against the lab door test results.  Not all brands are what they claim.  Nutri-Gold and Naturemade are a couple good ones, but there are others too.

[Melissa93]

1 hour ago, GFinDC said:

I had a vitamin D deficiency for years before and after going gluten-free.  I was ok on the A though.  I suggest you check your vitamin D brand against the lab door test results.  Not all brands are what they claim.  Nutri-Gold and Naturemade are a couple good ones, but there are others too.

Thanks! Yes that's a fair point. I have my vitamin D 5000UI from Jarrow Formulas, which make certified gluten free supplements. As far as I can see they seem good. I have to say that I stopped taking vitamin D supplements for about three months because of possible gluten being in my previous one. It took me a while to replace it, so in that meantime it will just go down including the winter time.

 

Your vitamin D deficiency did resolve it sounds like?

[GFinDC]

9 hours ago, Melissa93 said:

Thanks! Yes that's a fair point. I have my vitamin D 5000UI from Jarrow Formulas, which make certified gluten free supplements. As far as I can see they seem good. I have to say that I stopped taking vitamin D supplements for about three months because of possible gluten being in my previous one. It took me a while to replace it, so in that meantime it will just go down including the winter time.

 

Your vitamin D deficiency did resolve it sounds like?

Yes, my D levels increased when I got a better quality supplement.  I take a D pill most every day now.  I was taking a RX D pill for months but it didn't help much.

https://labdoor.com/rankings/vitamin-d

 

Edited March 23, 2021 by GFinDC

[knitty kitty]

Prescribed Vitamin D is often synthetic Vitamin D2.  The more bioavailable form is Vitamin D3.  

Vitamin D3 can sometimes be derived from lanolin, so if you have a wool allergy, look for another kind.

Vitamin D and Vitamin A can be found in cod liver oil.  Be alert if you have a Fish allergy.

The vitamins A, D, E, and K are fat soluble vitamins.  Some Celiacs have trouble digesting fats (resulting in fatty stools), so deficiencies in the fat soluble vitamins can occur.  

 

[Melissa93]

47 minutes ago, knitty kitty said:

Prescribed Vitamin D is often synthetic Vitamin D2.  The more bioavailable form is Vitamin D3.  

Vitamin D3 can sometimes be derived from lanolin, so if you have a wool allergy, look for another kind.

Vitamin D and Vitamin A can be found in cod liver oil.  Be alert if you have a Fish allergy.

The vitamins A, D, E, and K are fat soluble vitamins.  Some Celiacs have trouble digesting fats (resulting in fatty stools), so Ddeficiencies in the fat soluble vitamins can occur.  

 

Is the trouble with soluble vitamins by pancreas that doesn't work well? I'm hoping this wouldn't be something that is indefinite. However I have had trouble with fatty stools, but lately since going gluten free not so much.

[knitty kitty]

The fat soluble vitamins are A, D, E and K.  The water soluble vitamins are the eight B vitamins and Vitamin C.  If you have frequent diarrhea or constipation, the water soluble vitamins can be lost quickly.  

Most of the B vitamins and Vitamin C are absorbed in the small intestine.  The small intestine gets damaged in Celiac Disease, so vitamins are not absorbed well.  

Supplementing with Vitamin C and a B Complex can be beneficial while healing on a gluten free diet.

The pancreas uses lots of Thiamine Vitamin B 1 to produce insulin.  I take additional thiamine (300mg a day of Benfotiamine) because I have Type Two Diabetes and up to 95% of diabetics are thiamine deficient.  Diabetics have a greater metabolic need for thiamine.  Thiamine is nontoxic and safe in higher doses.  

I like this book by a doctor with Celiac herself....

https://www.thepaleomom.com/books/the-paleo-approach/

Knowledge is power.  This book gives an easily understandable explanation of the autoimmune reaction in Celiac Disease and how changes in your diet can help calm inflammation and promote healing.   

 

[Kate333]

On 3/22/2021 at 1:46 PM, Melissa93 said:

Hey everyone!

 

I was wondering how many of you had to deal with vitamin deficiencies when they were just diagnosed or maybe even still while on a controlled gluten free diet?

I got diagnosed with celiac disease in November and have been dealing with a large vitamin D deficiency that was found 1.5 years before that. Been taking quite a lot of vitamin D supplements ever since, as I already eat plenty of nutricious vitamin D holding foods, but still don't get my levels up easily. Got my levels checked again after eating gluten-free for about 4 months now, and they have dropped compared to last year but are still within the okay-zone (50 used to be 68 last year March, but coming down from 18).

However, I apparently am now deficient in vitamin A. Honestly have never been tested for vitamin A before, but my new GI wanted to check my vitamin levels as a newly diagnosed patient. Anyone else has had a vitamin A deficiency? I have a very healthy diet, eat a lot of plants but still eat meat (twice a week) and fish (once-twice a week), not much dairy due to lactose intolerence but still eat eggs. Basically there isn't much I can do about my diet, but I am experiencing quite some nightblindness and maybe some other symptoms too (who knows nowadays if your itchy rashy hands are from vitamin A deficiency or over-washing your hands).

 

I know vitamin deficiencies are common in celiac and wondering if anyone wants to share their experience with me, how long it took them to recover etc? And if you had a vitamin A deficiency, were there things you needed to get tested as well, like Zinc? 

Hi Melissa.  Welcome.  Your comment about your hands (highlighted in bold print) caught my eye because my poor hands have begun to look like dried out, red 🦞🦞🦞 thanks to a year of my CONSTANT, OCD- and Covid paranoia-fueled handwashing!  LOL.  My dermatologist said she sees ALOT of that these days.  I suggest you follow each hand-washing session with moisturizing hand cream.  It seems to make a big difference for me.

Re: the night blindness, you don't mention your age (I thought you were born in '93 because of your name), but if you are north of age 40, I can tell you that the eyes typically change as you get older and it gets a bit harder to see things, esp. in the dark.  To allay your worries, I recommend an updated, thorough vision exam, where the doc. dilates your pupils to see inside the eyes (not just a cursory eye chart read session).

I can relate to your comment about dairy intolerance.  I'm about a year post diagnosis, and I still miss dairy SO DARN MUCH!   Bye bye ice cream....😭

 

[GFinDC]

For those avoiding dairy the possibility of calcium deficiency exists.  So it's helpful to find and take a calcium supplement.  Calcium citrate is better for absorption than calcium carbonate.  But the carbonate form is cheaper and more widely available.

https://labs.selfdecode.com/blog/calcium-deficiency/

 

 

[Melissa93]

On 3/24/2021 at 10:44 PM, Kate333 said:

Hi Melissa.  Welcome.  Your comment about your hands (highlighted in bold print) caught my eye because my poor hands have begun to look like dried out, red 🦞🦞🦞 thanks to a year of my CONSTANT, OCD- and Covid paranoia-fueled handwashing!  LOL.  My dermatologist said she sees ALOT of that these days.  I suggest you follow each hand-washing session with moisturizing hand cream.  It seems to make a big difference for me.

Re: the night blindness, you don't mention your age (I thought you were born in '93 because of your name), but if you are north of age 40, I can tell you that the eyes typically change as you get older and it gets a bit harder to see things, esp. in the dark.  To allay your worries, I recommend an updated, thorough vision exam, where the doc. dilates your pupils to see inside the eyes (not just a cursory eye chart read session).

I can relate to your comment about dairy intolerance.  I'm about a year post diagnosis, and I still miss dairy SO DARN MUCH!   Bye bye ice cream....😭

 

Haha yes you're right, I'm from '93 so I'm 28 years old. Good idea of maying doing a vision exam, I haven't had one in like 15 years probably.

 

Yes I miss dairy too sometimes. In my home country the Netherlands they sell a lot of regular dairy with the lactose taken out off it. But in the US it's all plant-based, which I love most of the time btw. I'm lucky that I can tolerate oats, I eat oatly icecream it's really good!

[M. Martha]

On 3/26/2021 at 9:37 AM, Melissa93 said:

Haha yes you're right, I'm from '93 so I'm 28 years old. Good idea of maying doing a vision exam, I haven't had one in like 15 years probably.

 

Yes I miss dairy too sometimes. In my home country the Netherlands they sell a lot of regular dairy with the lactose taken out off it. But in the US it's all plant-based, which I love most of the time btw. I'm lucky that I can tolerate oats, I eat oatly icecream it's really good!

Hi Melissa, I’ve had Vitamin D, folate and zinc deficiencies that resolved with supplementation. Have not been tested for A, but at present I’m taking a teaspoon of Garden of Life Icelandic cod liver oil and more importantly, eating liver at least once a week. My bout with COVID knocked more foods out of an already limited diet - no gluten, no dairy, no nightshades, no processed foods (including gluten free processed foods), no white sugar (I do eat maple syrup and honey). COVID revealed that I still had SIBO, did another round (my second - first in 2017) of xifaxin - applied for financial assistance from the manufacturer and was accepted so no cost. Also discovered the Carnivore diet - nose to tail - meaning the inclusion of organ meats. Follow Paul Saladino. Influenced by Terry Wahls.  Also the GAPS diet minus fermented foods because of a histamine issue. Have not eliminated vegetables totally but am down to cooked kale/chard/cilantro/dill/parsley, cooked carrots in meat broth (not bone broth), and fruit - bananas, cooked apples, and strawberries. Eat pastured eggs and a variety of meats - grass-fed beef, locally raised pork, grass fed lamb, organic chicken, wild caught salmon, liver, heart, tongue, pigs feet for the collagen. No processed vegetable oils - using beef tallow, lard I render myself, bacon fat, organic olive oil, avocado oil. Doing intermittent fasting with a 6-8 hr feeding window. A lot of other lifestyle strategies to heal the gut. It’s a process. Severe emotional trauma/abuse, gut dysbiosis initiated by c diff, c diff full blown resolved with FMT, celiac, SIBO, and COVID that hit my gut brought me here but I will say that there are certainly times when I’ve never felt better in my life and I’m 68. My weight is low - no room to lose anymore - but hopefully within the healthy realm. Metabolically healthy. No medications just some supplements - vitamin D, C, b complex, zinc as needed, selenium, lutein, MSM, Numedica colostrum, saccharomyces boulardii, primal defense ultra probiotic. Hope this helps. It’s a journey. Reduce toxins, increase nutrients, get sunshine, sleep, exercise, have fun, laugh, pray and eat some liver 😊. Be blessed, Melissa, and be well 🙏

[Wheatwacked]

I take 250mcg D3 (10.000 iu.) daily. If I reduce that amount it only takes a few weeks for me to notice the change in mood. Among the other vitamins and minerals I take 1 tablespoon of Cod Liver Oil daily (~4000 vit A RAE) The RDA is 900 RAE and upper limit 3000.

[Beverage]

I had a big D deficiency and did not get improvement until I added K2, also a little sip of apple cider vinegar before meals with protein.  K2 helps the D3 to get absorbed. D also needs acid to be absorbed, so the ACV helped.  The ACV also helped with bad acid reflux.

For me, the other one that took awhile to figure out was B1 Thiamine. I was taking a multi B, but my energy was still lagging (and I had severe asthma).  Search for KnittyKitty's posts about B1, studies about taking the oil based forms, like benfotiamine and lipothiamine, which absorb much better.  When I added the oil based forms, wowza, my asthma reduced to almost nothing and energy much improved.

 

I also take this B12 per Ennis' recommendation and I can tell a difference with my energy when I skip it:

https://www.amazon.com/gp/product/B003BHUZ68/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

 

[Collette38]

Hey, I am also vitamin A deficient.  I don’t think doctors actually check people often. Anyways I have been gluten free for 6 yrs and I’m still deficient. I only recently started actually taking a vitamin for it. So we’re gonna see next test if it goes up at all. My doctor said “just take a regular multi vitamin it will go up”, it went up 2 points. I know I’m not as deficient as I was before going gluten free. I use to definitely think lightening looked weird at sunset, I don’t have that symptom anymore. So I only can imagine how low I was before going gluten free. I am low normal in Vitamin d. I think more people would show up deficient if doctors checked them. My mom has celiac for 20 yrs her doctor has never checked vitamin a. 🤷🏻‍♀️

[trents]

With the celiac population, it is more common to be deficient in minerals such as magnesium and in the B vitamins than in A. Be careful in supplementing with vitamin A is too much of it can be toxic. It is a fat soluble vitamin whereas the B's are water soluble.

Damage to the villi of the small bowel is what causes these nutrient deficiencies as the villi compose the nutrient absorbing surface of the gut.

It can take two years or more for complete healing of the gut. A lot depends of how careful one is in avoiding gluten after diagnosis. Every "glutening" experience is a setback and delays the healing process.

Edited April 12, 2021 by trents

[knitty kitty]

@trents is correct.  

The B vitamins are water soluble and must be replenished every day because they can't be stored long.  Insufficiency of thiamine can occur in as little as nine days.  

Vitamin A is a fat soluble vitamin that can be stored in your liver.  It can take years to deplete your vitamin A stores.  

Too much vitamin A can be bad.  Explorers stranded in the Arctic, ate polar bear liver when their food supplies ran out.  They got sick and some died. Polar bear liver has extremely high amounts of Vitamin A.  

You may want to add more dietary sources of Vitamin A such as beef liver or chicken livers, oily fish like salmon, cod liver oil, and brightly coloured veggies like carrots, squash and leafy green veggies. 

Here's more information....

https://ods.od.nih.gov/factsheets/VitaminA-HealthProfessional/

[knitty kitty]

Thought this might be of interest.....

 

"Micronutrients Dietary Supplementation Advices for Celiac Patients on Long-Term Gluten-Free Diet with Good Compliance: A Review"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6681258/

 

[Collette38]

My celiac test panel are always in normal range since 6 months after diagnosis. My vitamin levels  definitely change around. My Vitamin A has been low for a while and we tried do multi vitamin and food. But I still don’t absorb it. So my doctor told me to take vit a for a bit and see. I know it’s one that can build up that’s why my doctor took so long to tell me to supplement it. I think celiac is a tricky disease . Lots of different symptoms and lots of different deficiencies. My vit e and d are ok. Just deficient in A 🤷🏻‍♀️

[knitty kitty]

@Collette38, 

I had trouble absorbing Vitamin A from oil filled capsules.  Fish allergy prevents me from taking cod liver oil which is a good source of both Vitamin A and D.  Celiacs have trouble absorbing fats.  I found capsules of the dry form of Vitamin A online and was able to absorb it better that way.

I like keeping my Vitamin D in the 70 to 80 nmols. At that level, Vitamin D acts as a hormone and can help regulate the immune system and decrease inflammation.  

[Melissa93]

6 hours ago, Collette38 said:

My celiac test panel are always in normal range since 6 months after diagnosis. My vitamin levels  definitely change around. My Vitamin A has been low for a while and we tried do multi vitamin and food. But I still don’t absorb it. So my doctor told me to take vit a for a bit and see. I know it’s one that can build up that’s why my doctor took so long to tell me to supplement it. I think celiac is a tricky disease . Lots of different symptoms and lots of different deficiencies. My vit e and d are ok. Just deficient in A 🤷🏻‍♀️

Yes same problem here. I didn’t get my vit E levels checked, but my vit D is normal-low and I’m working on getting that into the 70s region but got a road ahead of me with that. Vitamin A is deficient and it’s especially troubling with my view I feel like, and it must have been around for a while as its stored in the liver. I am taking a vitamin A supplement now, like every 3 days, and its in my multivitamin as well which I take on the days I don’t take the specific vitamin A supplement. Both don’t carry a lot of vitamin A so it feels okay doing that. Sad to hear you still have this problem after 6 years of diagnosis, I’m hoping that when my gut is more healed it will pick it up from nutrition again.. But I only got diagnosed in nov, so it makes sense it will take some time.

[Beverage]

Peter Osborne has done a few videos on vitamin A. Maybe something in there will help with getting it absorbed and alternate sources:

 

https://www.youtube.com/results?search_query=dr+peter+osborne+vitamin+a