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Supplements for those Diagnosed with Celiac Disease


Scott Adams

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  • 2 months later...

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cnazrael89 Enthusiast
On 8/15/2022 at 1:21 PM, Scott Adams said:

(Zenavea) Benfotiamine 300 MG (Amazon)

@Scott AdamsQuick question on this brand of Benfotiamine. I ordered this because it is Gluten free and saw that you also used this company. I received my bottle and it states it is indeed gluten free but it has other information stating that it is produced in a facility that processes wheat containing products. You haven't had any troubles? Does your bottle have the "Allergen Statement" that mentions facility/machinery that also has wheat? Is this something I need to be concerned about?

Scott Adams Grand Master

I've not had any issues with any of the supplements I've been taking. I realize that some people are concerned about such "made in a facility" allergen statements, but in general if "gluten-free" is on the label it means they test and monitor to avoid any contamination.

  • 3 months later...
CMCM Rising Star

There seem to be a couple of ways to state gluten dangers.  One is "made on shared equipment" with gluten products, and that one is a definite NO.  The "made is a facility" one is something companies do as a CYA when it's not a dedicated gluten-free production facility.  There's always risk, but I don't have issues with this one and neither does my very sensitive son.  Not yet, anyway!

  • 2 weeks later...
JoMum Newbie

Hi Adam, have you looked at K2? It should be taken with higher doses of Vitamin D3 as it helps it activate the vitamin in the body. Hope this helps. 
regards 

Jo

  • 2 months later...
Jane07 Enthusiast

Is one of day multi vitamin gluten free I wasn’t sure I need more copper in my diet one a day 50 plus is it gluten free and vegetarian ?

Scott Adams Grand Master

One A Day vitamins are gluten-free, I'm not sure about vegetarian.


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  • 2 weeks later...
Jane07 Enthusiast

Do you take anything for or Zinc or copper and iron  gluten free . B van it’s k2 it maybe in my multi vitamin I will look 

  • 4 weeks later...
momashes Newbie

I take hema-plex I found on Amazon.  It has everything your body needs to make healthy bloods cells.  My iron has been normal for two years! I have been severely anemic for 34 years!

Scott Adams Grand Master

I must avoid Iron.

  • 2 months later...
Eldene Contributor
On 8/15/2022 at 9:21 PM, Scott Adams said:

I am often asked about which supplements I take, so I'm sharing it here.

I think you'll find a big variation of what supplements different people on this forum take, but here is a breakdown of the many I take. This regimen has worked well for me, but it has take many years for me to add and remove different ones. Also, all of this list may not apply or be helpful for everyone here, but it may work for many people so I'm sharing it.

Before I list them I am also now exploring ways to cut my costs down on supplements, and have discovered that old stand byes like One A Day (with or without iron, depending on your needs), Geritol Multivitamin, or Costco's Mature Multi do contain many of these so you may want to first start with one of those, and then add supplements aren't included, or that you may need higher levels for. In general I follow the directions on the bottle, and take 1 or 2 a day depending on the recommendation. I the majority after breakfast, and if a supplement calls for 2 a day, I take the 2nd dose after dinner.

I break these down in groups, and I personally have to avoid iron, so be sure to know your iron levels as this can build up in your system and cause issues if it gets too high. Likewise, you may want to check all of your levels before starting supplementation, and vitamins D and B6 can also build up in your system and have toxic effects.

CORE SUPPLEMENTS (maybe every celiac needs)

  • (Nature Made) B-Complex (Costco)
  • Citracal Maximum Plus D3 (Costco)
  • (Nature Made) Fish Oil 1,200 MG (Costco)
  • (Nature Made) Magnesium 400 MG (Costco)
  • (Nature's Bounty) Niacin - Optional as the B-Complex includes this.  (Amazon)
  • (Kirkland) D3 (2,000 IU) - Optional as Citrical has 1,000 IU 2x Daily = 2,000 IU. I've stopped and started this one several times  and noticed that I just feel a lot better taking 4,000 IU daily (Costco)

BRAIN FOG, MEMORY ISSUES and/or ATAXIA (below helped greatly with these issues which I've had on and off since my diagnosis in 1994)

  • (Horbaach) Choline Bitartrate 100mg (Amazon)
  • (Kirkland) B12 1,000 IU - Optional as the B-Complex includes B12. Even though my blood levels of B12 are always high, I've noticed increased memory & brain fog issues whenever I've stopped this for a week or more (Costco)
  • (Zenavea) Benfotiamine 300 MG (Amazon)
  • (Finest Nutrition) DHEA 25 MG - Optional and usually for Males only, a natural testosterone booster that helped improve my concentration (Amazon)

It's a lot, and not recommended for everyone, and, as mentioned, I'm now working on a way to reduce the cost and number of pills I am taking.

As a State pensioner in SA, all I cán use is what the State Clinic provide. It is not as good, but similar to Future Life shake.

  • 2 weeks later...
Wheatwacked Veteran

Additional likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly are vitamin D, Thiamine, Choline, and Iodine.

  • 10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder), bone and dental health.  Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective
  • 500 mg Thiamine - neurologic symptoms, carbohydrate metabolism, subclinical beri-beri.
  • Choline 500 mg - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects.   Could we be overlooking a potential choline crisis in the United Kingdom?
  • Iodine – speeds up healing, muscle tone, brain fog, hair and skin, thyroid. 10 drops of Strong Iodine has 500 micrograms of elemental Iodine. Nori and Kelp. For some people with Dermetitis Herpetiformus, iodine can exasperate the rash.
  • Iodine for Hormonal Health "Your ovaries also need iodine and without enough their structure changes. Iodine-deficient women can produce ovarian cysts and are at risk of developing PCOS."
  • Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply. 
  • 500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol.  Niacin Fact Sheet for Health Professionals
  • 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle
  • 1000 mcg B12 - creates hemoglobin for oxygen transport
  • 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously, but not enough when sickness increases inflammation. reduces Reactive Oxygen Species (ROS are are free radicals.).
  • I've been using Zinc Glyconate (Cold-Eeze) since 2004 anytime I feel an itchy throat or other sign of air borne virus coming on.  I haven't had cold or flue, including Covid 19, since.
  • Naturally fermented dill pickles (not vinegar quick pickles) reestablished lactobacillus in my gut and reversed my recently acquired lactose intolerance.  100% grass fed dairy is less inflammatory. Milk is a good source of iodine.
  • Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation while increasing vitamin and mineral intake..  The target omega 6:3 ratio is less than 3:1.  The typical western diet is from 14:1 to 20:1 because of our food choices.

I get most of them from PipingRock.com.  Cheap, Non GMO and Gluten Free.

  • 2 weeks later...
Jojer Rookie

My first post here following my recent diagnosis. I only had one symptom that sent me to the doc, now I'm contemplating life without gravy (sigh).

I chased the results from my blood tests around the internet, and texted my PA to ask for a recommendation for a multi vitamin and mineral supplements. In reply, I received a pasted page from Up to Date , a physicians reference website (with lots of links I'd have to subscribe to receive).

So, now I have a list I got from there, plus the helpful suggestions from everyone above that will give me a good start. Thanks!

Scott Adams Grand Master
Jojer Rookie
33 minutes ago, Scott Adams said:

Thanx!

Scott Adams Grand Master

also, "Better Than Gravy" is excellent and we got it at Costco during the Thanksgiving time period.

Jojer Rookie
On 1/29/2024 at 1:10 PM, Scott Adams said:

also, "Better Than Gravy" is excellent and we got it at Costco during the Thanksgiving time period.

I've been doing most of the cooking around here for many years. I (used to) use a lot of packaged gravy and sauce mixes and creamy soups. There's a big chunk of my pantry gone. Was also big on Wondra quick-mixing flour for gravy.

I bought "Better Than Bullion" a few years ago and found it hard to use: Sticky and apparently a melting point above lead. Will have to shop outside my comfort zone to find this brand.

More recently I've been making big batches of vegetable soup. These started as jazzing up ramen, then leaving the noodles out. Old dog new tricks- the last batch really put a hurt on me: Who knew Soy sauce and teriyaki had wheat in them? Everyone who remembers to check the labels. 

Eldene Contributor
On 1/15/2024 at 6:04 AM, Wheatwacked said:

Additional likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly are vitamin D, Thiamine, Choline, and Iodine.

  • 10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder), bone and dental health.  Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective
  • 500 mg Thiamine - neurologic symptoms, carbohydrate metabolism, subclinical beri-beri.
  • Choline 500 mg - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects.   Could we be overlooking a potential choline crisis in the United Kingdom?
  • Iodine – speeds up healing, muscle tone, brain fog, hair and skin, thyroid. 10 drops of Strong Iodine has 500 micrograms of elemental Iodine. Nori and Kelp. For some people with Dermetitis Herpetiformus, iodine can exasperate the rash.
  • Iodine for Hormonal Health "Your ovaries also need iodine and without enough their structure changes. Iodine-deficient women can produce ovarian cysts and are at risk of developing PCOS."
  • Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply. 
  • 500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol.  Niacin Fact Sheet for Health Professionals
  • 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle
  • 1000 mcg B12 - creates hemoglobin for oxygen transport
  • 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously, but not enough when sickness increases inflammation. reduces Reactive Oxygen Species (ROS are are free radicals.).
  • I've been using Zinc Glyconate (Cold-Eeze) since 2004 anytime I feel an itchy throat or other sign of air borne virus coming on.  I haven't had cold or flue, including Covid 19, since.
  • Naturally fermented dill pickles (not vinegar quick pickles) reestablished lactobacillus in my gut and reversed my recently acquired lactose intolerance.  100% grass fed dairy is less inflammatory. Milk is a good source of iodine.
  • Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation while increasing vitamin and mineral intake..  The target omega 6:3 ratio is less than 3:1.  The typical western diet is from 14:1 to 20:1 because of our food choices.

I get most of them from PipingRock.com.  Cheap, Non GMO and Gluten Free.

Where is PipingRock.com? I am looking for a one-in-all gluten free ànd vegan food supplement in South Africa? Pensioner.....

Wheatwacked Veteran

They are in the US but ship to 160 countries including South Africa. https://pipingrock.com/ 

  • 1 month later...
Neelhtak Newbie

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.        

trents Grand Master
(edited)

Absorption for newly diagnosed celiacs is compromised but not totally absent. Iron supplements are absorbed better in an acidic environment so take vitamin c along with the iron. Try oral iron first and see if you respond. If not, then you can look at infusion. Iron assimilation can be a complex thing dependent on several factors. I would also take some high doses of sublingual B12 along with the oral iron as B12 is necessary for iron assimilation. Your docs are not going to get excited enough to order iron infusions until your levels get lower than what yours are I'm thinking.

Edited by trents
Scott Adams Grand Master

It would probably make sense to start out with your doctor's recommendation, and be sure any meds and supplements you take are gluten-free, and the get a follow up test for your iron level in a few months. Most people can still absorb iron if they take a supplement, but it is possible you could require an infusion if your levels don't increase over that time.

Maura195 Newbie

Glutathione shot/jab?

Took a long time to be diagnosed (2 years ago). I  recently had bad glutening experiences over last 2 months. Severe vitamin/mineral deficiencies. I was back to the start.

i have new functional medicine Dr.  She ran extensive blood tests thru Genova company. I was much more malnourished then I realized. I wasn’t absorbing many of my supplements.

The dr is recommending I get a glutathione shot to boost my system.  Any of you Celiacs try this shot? Did you feel it helped strengthen your system? Change your ability to heal and absorb vitamins/minerals?

any side effects?

Maura

trents Grand Master

https://health.usnews.com/wellness/food/articles/glutathione-benefits

"Taking glutathione supplements isn't an evidence-backed way to improve your health. While there's no question that glutathione produced by the body has a number of health benefits, the benefits of glutathione supplements are not established."

Wheatwacked Veteran

You should be concened about vitamin D, Choline, Iodine and B1 to start.

Choline can be metabolized into methionine, which may then be converted into glutathione through S-adenosyl-l-methionine. Choline-related compounds may also improve glutathione redox balance in children with cystic fibrosis. CDP-choline has been shown to increase glutathione levels, glutathione reductase activity, and decrease oxidized glutathione.

  • 42% of US are vitamin D deficient.
  • 90% are below the RDA for Choline.
  • U.S. dietary iodine intakes have decreased by 50% since the 1970s, and recently, mild iodine deficiency has reemerged in some population groups.
  • celiac disease, also known as gluten intolerance, can cause thiamine deficiency, also known as beriberi.

 

 

 

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    • Scott Adams
      Given your history of a high TTG (167) that decreased to 16 on a gluten-free diet, along with genetic confirmation of celiac disease, it’s likely the negative biopsy is a false negative due to not eating gluten before the endoscopy. Gluten is necessary to trigger the intestinal damage seen in celiac disease, and avoiding it can lead to healing and a normal biopsy despite ongoing immune activity (reflected in your still-elevated TTG). The inflammation observed during the endoscopy (“diffuse moderately erythematous mucosa”) could be residual damage, mild ongoing inflammation, or another condition like peptic duodenitis, but it’s consistent with celiac disease in context. Continued positive blood markers suggest ongoing gluten exposure, possibly from cross-contamination or hidden sources. Strict adherence to a gluten-free diet and follow-up testing are key to managing symptoms and reducing inflammation. Discuss these findings with your doctor to confirm the diagnosis and refine your dietary approach. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Yes, it sounds like great progress, but what was the time frame between the two endoscopies? 
    • Scott Adams
      Your symptoms—headaches, dizziness, nausea, irregular bowel movements, anemia, and menstrual changes—along with a family history of celiac disease, strongly suggest celiac disease could be the cause. The mild duodenal changes seen in your biopsy are consistent with early or mild celiac disease, though they could also be due to other factors. The improvement in bowel movements after cutting out gluten is a positive sign, but other symptoms like headaches and dizziness may take longer to resolve as your body heals. It’s important to continue a strict gluten-free diet and discuss further testing, such as celiac antibody blood tests or a follow-up biopsy, with your doctor to confirm the diagnosis. Many people experience a gradual improvement in symptoms over weeks to months, so patience and strict adherence to the diet are key. You’re not alone in this process, and support from celiac communities can be very helpful. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      For people with celiac disease and corn intolerance, most salts, including table salt with dextrose, are generally safe in small amounts, as the dextrose is typically highly processed and unlikely to contain problematic corn proteins. However, if you’re highly sensitive, you might consider switching to pure kosher or Himalayan salt, which don’t contain additives. While bringing your own salt to restaurants or avoiding seasoned foods can feel overwhelming, it’s a practical step if you’re concerned. Many people with corn intolerance tolerate trace amounts of dextrose in salt without issues, but individual sensitivity varies. If your current salt isn’t causing symptoms, it’s likely fine to continue using it, especially given your financial constraints and the challenges of managing dietary restrictions. Focus on what works for you and prioritize avoiding larger sources of corn, like cornstarch.
    • Scott Adams
      Your daughter’s ongoing stomach pains two weeks into a gluten-free diet could be due to her body still healing after months of gluten exposure, as recovery from celiac disease can take time. Her inconsistent eating habits and possible eating disorder behaviors may also delay healing. While she’s now eating gluten-free snacks, her limited intake and emotional withdrawal complicate the process. It’s positive that she’s trying, but recovery may take weeks to months. Addressing her depression and mental health is crucial, as celiac disease can impact mood, and proper nutrition may help. Patience and support are key, but if symptoms persist, consult her doctor to rule out accidental gluten exposure or other issues. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.  
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