Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Sharing - What Supplements/vitamins Work For You?

T.H.

By T.H.
in Super Sensitive People

Recommended Posts

T.H. Community Regular
T.H.
Posted

I think one of the really challenging things to find, as a super-sensitive, is supplements that don't make you sick. Probiotics, vitamins and minerals, digestive enzymes - all the things that can be really helpful, but we have to find safe sources.

So, what brands of supplements/probiotics/other 'gut/body helpers' do you take that don't make you react?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


dilettantesteph Collaborator
dilettantesteph
Posted

I use homemade yogurt. I found a whole milk source with nothing added. In addition the cows are pasture fed and not supplemented with gluten grains or oats. I use their yogurt for first culture, but make my own from my own four more times. How much more can that be stretched? The sources I read said three, but I've taken it to four so far. Maybe I'll try 5.

Tigercat17 Enthusiast
Tigercat17
Posted

I think one of the really challenging things to find, as a super-sensitive, is supplements that don't make you sick. Probiotics, vitamins and minerals, digestive enzymes - all the things that can be really helpful, but we have to find safe sources.

So, what brands of supplements/probiotics/other 'gut/body helpers' do you take that don't make you react?

Hi Shauna,

This is a really good question. I wish I had some answers for you. So far I have reacted to many muti vitamins. I think I tried about seven different companies and I still haven't found one that I can take. After the last time I'm really afraid to take any and I've completely given up on them.

Back in Jan of this year I was so sick from vitamins and it took me four months to realize it. The doctor thought I had lymphoma and I had to go through a laparoscopy surgery to remove enlarged lymph nodes in my stomach. And all because of "gluten free" vitamins... <_< Even the doctors didn't think it was because of the celiac disease. All the path reports came back negative for cancer , but a reactive lymph node was the diagnosis. Which means it could be from an autoimmune disease. Duh -celiac disease! It wasn't until two weeks after the surgery I started to make the connection to the vitamins. And I had to go through even more testing for other autoimmune disease -everything came back negative, Thank God! I stopped taking the vitamins and wouldn't you know all my symptoms went away and I starting feeling really great again. I even thought about suing the company, but the lawyers thought in the long run it wouldn't be worth it. So I actually had to have surgery because of vitamins. :angry:

Right now I take:

Slow Fe iron -red pills

Nature Made Calcium with vitamins D (but not everyday)

I haven't tried anything new since last May so I thought I'd try another multi vitamin two weeks ago. I tried the Nature Made multi vitamin (gluten free) and the next day I felt I got glutened pretty bad so I had to stop them right away. I always have reactions the next day after I get glutened and I made sure I didn't try anything else so I know it was the vitamins.

After two years, I've just come to the conclusion that I'm just too sensitive to take any muti vitamins and I just try to eat really healthy. I'm thinking that there are just too many ingredients in the multivitamins that it makes it hard for them to be uncontaminated by gluten.

If there are any muti vitamins that the super senistive people take without any problems I'd love to know, too.

Thanks Shauna for posting this. You must have been reading my mind... :)

dilettantesteph Collaborator
dilettantesteph
Posted

I had the same problems with vitamins. There are so many vitamins and supplements recommended here, it makes me nervous, but I haven't tried all of them to know that I react, but just about everything I tried, I did react to. They aren't well regulated and I think that it is difficult to get things really gluten-free when there a lot of ingredients, especially processed ones, as stated above.

I do manage two:

Thyadine iodine supplement and Life Extension Vitamin D3 2,000 I.U. liquid emulsion. I diluted it with my safe olive oil.

I found that I reacted to the Nature Made Vitamin D. I am sensitive to crazy low levels of cc.

I have tried to get vitamins as concentrated as possible with as few ingredients as possible. The few ingredients limit the chances of cc. The concentrated form means that we take less so that the cc is less likely to bother us.

It is crazy when you feel better when you stop taking your vitamins. Vitamins are supposed to make you feel better, right?

  • 4 weeks later...
RollingAlong Explorer
RollingAlong
Posted

My spouse felt loads better when he stopped the vitamins. I bought them carefully, they were high quality and free of gluten, casein and soy.

T.H. Community Regular
T.H.
Posted
  • Author

Jeeesh, that's so awful, for vitamins to cause this much trouble! I haven't been able to find any multi-vitamins or calcium supplements that don't make me sick, either, although some I had an allergic reaction to early on, so I never got to try it when I was having my super-sensitive reactions. I have one iodine source, but I just don't know if I trust it - not for gluten reasons, but for whether or not it's actually iodine that I can absorb. The company seems a bit odd, to be honest. If I find out it's good, I'll put the name out here!

One thing I've been investigating - although it's not perfect by a long shot - is herbs. A number of herbs seem to be fairly high in certain vitamins, so I've been trying to grow as many herbs as my backyard can support. Finding accurate information on estimated herbal vitamin levels has been difficult, though. The most detailed information on this I've found here: Open Original Shared Link

The site lists some of the nutritional information from the USDA, some cooking uses, other information. Although I'm still researching which vitamins can survive heat and which can't, that sort of thing.

I started this a little bit ago, and then as usually happens, the rest of life barged in and it's kind of fallen by the wayside, even though I really need to keep it going!

I have no idea how much this has helped or not, but I have found it interesting that eating plainly as I do now, with salt and my own herbs for the only alternate flavor, I'll find myself craving one or two of the herbs for a few days in a row, then a totally different set for the following days. Not even necessarily herbs that I like the flavor of, even, but I crave them just the same. Makes me wonder if those herbs are high in vitamins that I'm need at that point, you know?

Considering that this has been my only vitamin source (aside from the iodine I try) for over a year now, and my vitamin levels checked out well at the last doctor check, I figure at least they aren't hurting! :)

dilettantesteph Collaborator
dilettantesteph
Posted

I had always been iron deficient and took iron supplements. After going gluten free my iron levels were high so I stopped the supplements.

I think that avoiding gluten may be more important than taking supplements when it comes to getting our vitamin levels where they should be.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


RollingAlong Explorer
RollingAlong
Posted

We've been trying to eat oysters and liver regularly

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    2. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    3. knitty kitty
      - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
    4. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
    5. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748
    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.