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

Malabsorption - Thoughts? Experiences?


munchkinette

Recommended Posts

munchkinette Collaborator

So I just went back to the doctor because I feel like hell. I just had a really bad glutening, but I was feeling really tired and lethargic for a month before that anyway.

First, she ran some tests, including testing my vitamin D level. Does anyone else have problems with this? I looked into it, and it turns out that using any kind of laxative is bad for this. She told me I could use docusate sodium every day and that it was safe, since it isn't like exlax or fiber/gluten based. Still, is this worse than I thought? She gave me the prescription because I'm taking and eating a lot of iron, which really backs me up. I can't stop taking/eating iron, and I can't eat enough vegies to counteract the amount of iron I'm taking.

She also ran other tests like blood count and B vitamins, but these have all been normal in the last two years so I don't expect those to be different.

-------

Rant: I had to twist her arm to get tests for other fatigue issues like autoimmune problems. This woman still thinks I'm imagining things. If I'm willing to pay for it and I have a strong family history, why the heck shouldn't she test for it? I'm having trouble making it up the stairs without muscle fatigue even though I've been a runner for 10 years, and she just tells me to "try swimming because it uses different muscles," "try walking 15 minutes a day and working up," and "get back on the Prozac for energy."

What. The. @#$&. I'm not even 30. Prozac? Yeah. I made an appointment with a doctor at Stanford as soon as I finished getting my labs done, when I was still in the parking lot.


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

I have low Vit D and iron as well. Taking extra vit C (like 2000 mg a day) and taking magnesium (at least 500 mg per day) can help with the C. You should take calcium and magnesium when you take Vit D or it can actually deplete you of calcium.

You could try 1000 calcium and 500 magnesium plus Vit D (my doctor has me on 5000 IU a day till I catch up). Should retest every 3-4 weeks to make sure you dont go over.

It is safe to take 2000 mg Vit C a day and it also helps you absorb the iron.

  • 4 weeks later...
frec Contributor

I am having malabsorption problems as well. My D level is still low even though I've been on 5000 IU for a year now. (Make sure it is D3, and that you take it with some kind of fat for better absorption. I use peanut butter.) Some celiacs have bacterial overgrowth in their small intestines and that can cause continued digestive and absorption problems even on a gluten free diet. Many celacs also have thyroid problems which can cause fatigue. You also could have other food intolerances--soy or dairy are two of the main culprits. I think I've found all my food intolerances so I am trying the Candida diet for a possible overgrowth problem.

Have you tried a naturopath? They are really good on nutrition issues. Good luck with the doctor at Stanford.

PS I am REALLY tired of people telling me to swim. Want world peace? Try swimming laps...

Nancym Enthusiast

Vit. D deficiency is epidemic in this country. Good site to read up on it: Open Original Shared Link

babysteps Contributor

I just read this online at the Wall Street Journal - if I paste in a link it only works for 7 days (60 I think if you are a subscriber). So the general world is perhaps getting more aware!

HEALTH JOURNAL

By MELINDA BECK

Defending Against Disease --

With Vitamin D

New Studies Suggest

It Isn't Just Bones

That Might Benefit

July 15, 2008; Page D1

Sunlight, as a source of vitamin D, is free and abundant, at least in most of the world. Supplements are almost as cheap. Yet a growing number of experts think that many people aren't getting enough vitamin D -- particularly those who work and play indoors and slather on sunscreen. And the more experts learn about what D does, the more worrisome a deficiency seems.

It's long been known that D is crucial for strong bones. But new research suggests that it also protects against a wide variety of diseases. A study in the Archives of Internal Medicine last month found that men with low D had a higher risk for heart attacks. Other studies have linked low D with cancer of the breast, ovary, prostate, stomach, bladder, esophagus, kidney and lung. Low levels of D also have been associated with high blood pressure, stroke, diabetes, periodontal disease, rheumatoid arthritis, multiple sclerosis, macular degeneration, mental illness and chronic pain.

"It sounds crazy -- until you realize that vitamin D turns into a steroid hormone that's involved in the maintenance of over 200 human genes," says John J. Cannell, founder of the nonprofit Vitamin D Council in Atascadero, Calif.

The strongest source, by far, is ultraviolet B rays from the sun, which convert a form of cholesterol into vitamin D in the skin. A person sitting outside in a bathing suit in New York City gets more vitamin D in 20 minutes than from drinking 200 glasses of milk. But UVB rays vary greatly depending on latitude, cloud cover, time of year and time of day. Above 42 degrees north latitude (a line from the northern California border to Boston), the sun's rays don't provide sufficient D from November through February. Researchers looking at latitude and disease rates have found some intriguing patterns. Type 1 diabetes, for example, is much rarer in countries like Cuba than in either New Zealand and Sweden.

Dark-skinned and elderly people don't process vitamin D from the sun as efficiently as younger, fair-skinned people. UVB rays also don't penetrate glass or sunscreen with a factor of 8 or more.

GETTING YOUR D

Sunlight:

darlindeb25 Collaborator

As in all vitamins, there is good Vit D, and not so good. When buying Vit D, you should always get Vit D as Cholecalciferol. I just found out that my Vit D is low too. I found Spring Valley Vit D at Walmart, it was $8.97 for 200 coated 2000 IU.

Vit B12 is another vitamin that comes in different forms. The best, and easiest for your body to absorb is methylcobalamin in an sublingual form. Cynacobalamin is much harder for our bodies to process.

munchkinette Collaborator

Thanks for pasting that article, babysteps. It got me thinking about sun. I'm paranoid about because I'm so fair, and I get sunburnt so easily. (Yesterday, for example.) A lot of us are probably good about staying out of the sun, because gluten intolerance is so much more common in the countries with pale people. We are probably the ones who need it the most. Maybe I should get more sun.

---------

Follow up: The new doctor at Stanford is awesome, mainly because she is open minded, recognizes that diets and other non-drug treatments are good, and admits that she has limited expertise, meaning she is willing to refer me to as many specialists as I need. I scheduled my physical with her.


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



Celiac.com Sponsor (A8-M):



babysteps Contributor
Thanks for pasting that article, babysteps. It got me thinking about sun. I'm paranoid about because I'm so fair, and I get sunburnt so easily. (Yesterday, for example.) A lot of us are probably good about staying out of the sun, because gluten intolerance is so much more common in the countries with pale people. We are probably the ones who need it the most. Maybe I should get more sun.

---------

Follow up: The new doctor at Stanford is awesome, mainly because she is open minded, recognizes that diets and other non-drug treatments are good, and admits that she has limited expertise, meaning she is willing to refer me to as many specialists as I need. I scheduled my physical with her.

good on the doctor progress munckinette!

I am very fair, but generally don't burn super-easily (burn in water or on snow, not usually otherwise). However I used to feel the sun on my skin as an immediate low level burn even if there was no change in color. Now that I am gluten-free, I swear that I am *less* sensitive to the sun.

I have been exposing myself to a bit more - nothing crazy (and no burns yet!), most days just say 10 minutes in the morning or evening or a few minutes at mid-day - no sunblock involved. I think it is helping. We'll see for sure the next time I get my vitD checked.

I do wear 'sunblock' clothing from Open Original Shared Link - that way I don't have to find a sunblock that my skin tolerates, and when I take off my wrap or jacket I can soak in some vitD producing rays at full volume :D

  • 1 year later...
Wendy Cohan, RN Contributor
So I just went back to the doctor because I feel like hell. I just had a really bad glutening, but I was feeling really tired and lethargic for a month before that anyway.

First, she ran some tests, including testing my vitamin D level. Does anyone else have problems with this? I looked into it, and it turns out that using any kind of laxative is bad for this. She told me I could use docusate sodium every day and that it was safe, since it isn't like exlax or fiber/gluten based. Still, is this worse than I thought? She gave me the prescription because I'm taking and eating a lot of iron, which really backs me up. I can't stop taking/eating iron, and I can't eat enough vegies to counteract the amount of iron I'm taking.

She also ran other tests like blood count and B vitamins, but these have all been normal in the last two years so I don't expect those to be different.

-------

Rant: I had to twist her arm to get tests for other fatigue issues like autoimmune problems. This woman still thinks I'm imagining things. If I'm willing to pay for it and I have a strong family history, why the heck shouldn't she test for it? I'm having trouble making it up the stairs without muscle fatigue even though I've been a runner for 10 years, and she just tells me to "try swimming because it uses different muscles," "try walking 15 minutes a day and working up," and "get back on the Prozac for energy."

What. The. @#$&. I'm not even 30. Prozac? Yeah. I made an appointment with a doctor at Stanford as soon as I finished getting my labs done, when I was still in the parking lot.

Wendy Cohan, RN Contributor

Hi,

I know this post is quite old, but wanted to mention the article I wrote a few months ago for celiac.com called "For Persistent Fatigue on a Gluten Free Diet, Consider Adrenal Fatigue". Also, you should know that guar gum is a good bulk forming laxative, although it's not a bowel stimulant. There's a difference. It definitely will promote regular bowel patterns. You can use guar gum in replacement of xanthan gum in all your baked goods. Guar gum is also cheaper. I also wrote an article that talks more about this, called "Xanthan Sensitivity May be Complicating Your Recovery" last year on celiac.com. I'm not writing to promote myself, but I honestly think these two articles have important information that may aid in your recovery. I've suffered from malabsorption, adrenal fatigue, and constipation, although for some reason I'm rarely anemic.

It sounds like you're doing much better now. I hope you're able to keep up the running...

Wendy Cohan, RN

So I just went back to the doctor because I feel like hell. I just had a really bad glutening, but I was feeling really tired and lethargic for a month before that anyway.

First, she ran some tests, including testing my vitamin D level. Does anyone else have problems with this? I looked into it, and it turns out that using any kind of laxative is bad for this. She told me I could use docusate sodium every day and that it was safe, since it isn't like exlax or fiber/gluten based. Still, is this worse than I thought? She gave me the prescription because I'm taking and eating a lot of iron, which really backs me up. I can't stop taking/eating iron, and I can't eat enough vegies to counteract the amount of iron I'm taking.

She also ran other tests like blood count and B vitamins, but these have all been normal in the last two years so I don't expect those to be different.

-------

Rant: I had to twist her arm to get tests for other fatigue issues like autoimmune problems. This woman still thinks I'm imagining things. If I'm willing to pay for it and I have a strong family history, why the heck shouldn't she test for it? I'm having trouble making it up the stairs without muscle fatigue even though I've been a runner for 10 years, and she just tells me to "try swimming because it uses different muscles," "try walking 15 minutes a day and working up," and "get back on the Prozac for energy."

What. The. @#$&. I'm not even 30. Prozac? Yeah. I made an appointment with a doctor at Stanford as soon as I finished getting my labs done, when I was still in the parking lot.

trents Grand Master

"Some groups aren't waiting. The American Academy of Pediatrics says breast-fed infants should get 400 IUs of supplemental D daily. The National Osteoporosis Foundation urges adults over age 50 to get at least 800 to 1,000 IUs to prevent fractures. Look for D3, which is more potent than D2."

And since most with celiac disease are not absorbing vitamins and minerals as well as other folks these recommendations are probably not excessive.

Archived

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

  • 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 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.