Supplements for those Diagnosed with Celiac Disease

[peg]

Thank you, Scott!  This is just what I needed. 

Appreciate your site very much and all of your time and energy that goes into it!

Kind Regards,

Peg

[xxnonamexx]

consumerlabs does a great job looking into brands to see if you get the actually amount the supplements claim.

[ehb]

Hi Scott, 

I am wondering how you came to this extensive list of vitamins? I just took a blood test and was low on a few items, so I am thinking about taking a multi vitamin, but I would prefer to have a doctor or professional guide me on which ones to take to help with the deficiencies. There is so much conflicting information, I don't know where to begin. Thank you!

[Scott Adams]

I am just sharing my personal supplementation which has been developed over many years now. It's not a perfect fit for everyone, but some lingering issues I had, especially with gluten ataxia, did not go away until I went on this regimen.

Good luck with finding experts to help you with this, it is possible, but my doctors were more or less totally useless when it came to having discussions with them about nutrient deficiencies that may have contributed to my gluten ataxia--my doctor literally just "measured" it by poking my feet in various places and saying: "Yep, look like ataxia issues....see you next year." They never even mentioned that it could be related to nutrient deficiencies. In any case, don't forget to be your own health advocate, because most of this stuff isn't rocket science, and the studies are out there which show that most celiacs have various nutrient deficiencies. 

[ehb]

13 minutes ago, Scott Adams said:

I am just sharing my personal supplementation which has been developed over many years now. It's not a perfect fit for everyone, but some lingering issues I had, especially with gluten ataxia, did not go away until I went on this regimen.

Good luck with finding experts to help you with this, it is possible, but my doctors were more or less totally useless when it came to having discussions with them about nutrient deficiencies that may have contributed to my gluten ataxia--my doctor literally just "measured" it by poking my feet in various places and saying: "Yep, look like ataxia issues....see you next year." They never even mentioned that it could be related to nutrient deficiencies. In any case, don't forget to be your own health advocate, because most of this stuff isn't rocket science, and the studies are out there which show that most celiacs have various nutrient deficiencies. 

I am wondering how you developed this supplementation regimen? Was it just through trial and error? Did you base this trial and error on blood tests or symptom improvement? It cost me $300 for the blood tests, so I would prefer not to do those regularly

[Scott Adams]

Mostly trial and error and noticing the effects of the supplements over time. It's important to look at the bottom of my original post in this thread to see nutrients that can be toxic in higher does, especially over long periods of time.

[xxnonamexx]

Try a multivitamin maybe it will cover what you are deficient in.

[trents]

Multivitamins are generally not potent enough to effective address significant deficiencies.

[Scott Adams]

That is true, but they are not a bad place to start. I recommend ones One A Day without iron, unless you need iron. You can definitely add other supplements over time if needed, but it's a good starting point that can address a variety of nutrient deficiencies. 

[knitty kitty]

It's not rocket science, like @Scott Adams says!  

My best advice is not to take Thiamine Mononitrate because the body doesn't absorb it well (only 30% is absorbed, less than that can be utilized).  Thiamine Mononitrate is used in many multivitamin supplements because it's cheap and shelf stable, meaning it won't break down in storage on a store shelf, or when exposed to heat or light.  This stability makes it fairly useless to the body, but lines the pockets of the manufacturer.  

Use other forms if Thiamine Vitamin B1 like Thiamine Hydrochloride, or Benfotiamine, or TTFD (tetrahydrofurfuryl disulfide).  Benfotiamine has been scientifically shown to promote intestinal healing.  TTFD is great for neurological symptoms.  Thiamine has no toxicity limit.  It's okay to take these forms of thiamine along with the B Complex which already contains thiamine.  

I prefer taking a B Complex and a multiple mineral supplements to taking a multivitamin.  I prefer taking a B Complex twice a day because taking it twice gives my digestive system better opportunities to absorb those essential vitamins.  The B vitamins are chemical compounds that the body cannot make itself and must get from the diet and supplements.  I like the activated forms of B vitamins because this helps with the MTHFR mutation that frequently occurs with Celiac Disease.  

The B vitamins are water soluble so any excess is easily excreted.  Niacin B3 and Pyridoxine B6 does have upper limits.  Niacin over 500 mg a day has been used in medicine to lower bad cholesterol under doctor's guidance for decades.  Pyridoxine B6 above 500 mg a day can cause toxicity symptoms in some people with a rare genetic variation.  

Edited June 13, 2025 by knitty kitty
Typo correction

[xxnonamexx]

I know I haven't been tested for Celiac yet. But If I took a blood test would they be able to say what I am deficient in as far as vitamins and minerals so I can see what supplements to take or is it not that easy to figure out what is needed to balance out vitamins/minerals. 

[knitty kitty]

 Blood tests are affected by what you've had to eat in the previous day or two and any vitamin supplements you've taken in the past month or two.   If you have been taking vitamins before the time of the blood test, the vitamins supplements could mask a deficiency.  So get the tests before supplementing, or allow eight to twelve weeks for the supplements to wear off.   

The thing with blood tests is that they measure what is in the blood, not what is stored inside organs and tissues where vitamins are actually utilized, and may miss subclinical deficiencies.  In times of shortages, the brain can order cells to release their stored vitamins into the blood stream in order to keep important organs like the brain and heart functioning.  

Overall, getting blood tests for deficiencies is a good idea if it's available to you.  Ask for an Erythrocyte Transketolace test for Thiamine deficiency.  If you're deficient in any of the B vitamins, take a B Complex with all the B's in it.  The eight B vitamins work with one another like an orchestra.  Supplementing just one can throw the others off.  

Edited June 14, 2025 by knitty kitty
Typo correction

[xxnonamexx]

I haven't taken blood test for deficiencies yet since self diagnosed but I started a Multi vitamin from reading consumerlabs Nature Made Multivitamin For Her 50+ with No Iron, Womens Multivitamin for Daily Nutritional Support, Multivitamin is actually good for men compared to the mens version since im 47 I figured this should be ok. I also just started taking Kirkland Signature Super B-Complex with Electrolytes which consumerlabs which is an independent lab that tests what is actually in it states this is a good balanced B complex vitamin where its not too much of any vitamin for you to take.  I was thinking of taking the Gluten test after the summer  ut I think if I reintroduce gluten for this test I will be so sick and make things worse. I heard there is a blood test coming in a year that they add gluten to the blood to test which would be nice but prob in a year or 2. 

[lmemsm]

I'm concerned about calcium.  I don't think I'm getting enough especially since I ended up having to get off dairy when I went gluten free.  However, if you have too much calcium, it can deposit in the wrong places and you can get thinks like bone spurs.  I'd like find a decent supplement for that.  Was thinking of looking into the algae based calcium supplements since they're more natural than some of the others available, but seem rather expensive.  When possible, I try supplement with food sources.  One or two Brazil nuts usually have the full RDA for selenium.  One Barbados cherry has the daily RDA for vitamin C.  I also use seaweed to help supplement iodine since I don't use iodized salt.

[Scott Adams]

Since you moved away from dairy, it's definitely a challenge to get enough calcium, and your point about its proper absorption is crucial—it's not just about intake, but also making sure it goes to the right places. Since you prefer food-based sources when possible, you could first focus on incorporating more non-dairy, calcium-rich foods like fortified plant milks or juices, canned sardines or salmon with bones, tofu made with calcium sulfate, dark leafy greens like kale and collard greens, and almonds. If you still feel you need a supplement, your research on algae-based calcium is spot-on; it's often praised for its bioavailability and balance with other trace minerals, which may help with proper absorption. While the cost is higher, you might find it's worth it as a targeted solution, potentially taken every other day or a few times a week alongside your dietary efforts, rather than a full daily dose. It's great that you're already so mindful of your nutrient sources with the Brazil nuts and seaweed—this holistic approach is the best way to build a solid nutritional foundation.

[knitty kitty]

I tried algae based calcium supplements, but because I have Dermatitis Herpetiformis I broke out with dermatitis herpetiformis blisters.  Do be careful.  Iodine, whether in iodized salt or seaweed or some types of fish, can stimulate dermatitis herpetiformis.

I stick to cruciferous veggies (broccoli, kale and other green leafy veggies), but I avoid spinach.  Many people have problems with oxalate formation (kidney stones) with spinach and calcium supplements.  

Do remember to take Vitamin D and Vitamin C with Calcium.  Talk to your doctor and dietitian about supplementing with Vitamin A and Vitamin K, and Boron and Magnesium as these vitamins and trace minerals are important to bone formation as well.

[lmemsm]

6 minutes ago, knitty kitty said:

I tried algae based calcium supplements, but because I have Dermatitis Herpetiformis I broke out with dermatitis herpetiformis blisters.  Do be careful.  Iodine, whether in iodized salt or seaweed or some types of fish, can stimulate dermatitis herpetiformis.

Thank you for mentioning that.  My main reaction to gluten seems to be related to the skin and breaking out.  So, I'll definitely take that under consideration when trying to figure out how to better supplement calcium.  I'm trying to use lower oxalate and lower histamine greens like broccoli, baby bok choi, collards and Lacinto kale.  Recently, I've been getting migraine reactions to spinach, possibly from the histamine.  I do use Malabar spinach (not related to spinach) but only a leaf or two in foods and I don't think it has a high calcium content.  I should check into longevity spinach and Moringa again.  Some gardeners in our area grow them.

[Scatterbrain]

Anyone experimented with Taurine supplementation either via electrolyte powders or otherwise?

Thanks

[lmemsm]

14 hours ago, Scatterbrain said:

Anyone experimented with Taurine supplementation either via electrolyte powders or otherwise?

Thanks

I've used magnesium taurinate and magnesium taurate vitamins.  Didn't notice much of a difference when I used them.

[knitty kitty]

@Scatterbrain,

Thiamine Vitamin B1 and amino acid Taurine work together. 

Our bodies can make Taurine from meats consumed. 

Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.  

Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine.

Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.  

You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  

[asaT]

On 3/12/2024 at 5:01 PM, Neelhtak said:

Was just recently diagnosed (confirmed w/ endoscopy by gastro) with celiac disease. Simply told to eat gluten-free. I followed up with my primary care physician and asked for some blood work to be run and my ferritin (iron reserves) was 10 L with a reference range of 16-154 ng/mL.  My PCP said to take a pre-natal gummy and then I called my gastro and he said to take an over the counter iron pill.  Being newly diagnosed Celiac Disease I have absorption issues in my small intestine, so will this iron even get into my system?  From what I've read online, if you have celiac disease you'd require an iron infusion.  Seems to make sense to me. Any input would be greatly appreciated.        

I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  

[trents]

You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.

[asaT]

i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. 

I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones. 

anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer.....

one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!

 

 

[asaT]

On 9/23/2025 at 1:34 PM, lmemsm said:

Thank you for mentioning that.  My main reaction to gluten seems to be related to the skin and breaking out.  So, I'll definitely tyke that under consideration when trying to figure out how to better supplement calcium.  I'm trying to use lower oxalate and lower histamine greens like broccoli, baby bok choi, collards and Lacinto kale.  Recently, I've been getting migraine reactions to spinach, possibly from the histamine.  I do use Malabar spinach (not related to spinach) but only a leaf or two in foods and I don't think it has a high calcium content.  I should check into longevity spinach and Moringa again.  Some gardeners in our area grow them.

plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.

 

[knitty kitty]

Hello, @asaT,

I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.  

Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.  

When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.  

One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.  

Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well. 

 I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA. 

I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.  

Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.