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

Lactose In My Depakote...


Stormy

Recommended Posts

Stormy Rookie

So I called the company that makes the Depakote I'm on, and while there's no gluten in it, there's 132.1 mg of lactose. *insert your favorite expletive here* So.. in a 500mg tablet or Depakote, does anyone know if 132.1 mg of lactose is a lot? A little? Not enough to matter or call the doc and throw the pills out the window? UGH.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

So I called the company that makes the Depakote I'm on, and while there's no gluten in it, there's 132.1 mg of lactose. *insert your favorite expletive here* So.. in a 500mg tablet or Depakote, does anyone know if 132.1 mg of lactose is a lot? A little? Not enough to matter or call the doc and throw the pills out the window? UGH.

Call your doctor and ask if it is okay to take something like lactase with it if the pill is giving you problems. You might be able to switch to the generic form, Valporic Acid, but ask the pharmacist for the name of the company that makes it and call them to be sure it is gluten and lactose free. Whatever you do DO NOT just stop taking it as it is a drug that needs to be tapered off. Hopefully your doctor is also doing regular blood draws to check your levels and for any adverse impact. That is really important if you started taking it before going gluten free because as you heal you may start to absorb more of it than prediagnosis and it can be a really toxic med with some nasty side effects.

Stormy Rookie

I know, I made that mistake last year when I didn't have the money for it- I stopped cold turkey it was... very unpleasant. The problem is, I'm already on the generic version. Supposedly most medications have a minute amount of lactose in it as a binder, and only super-sensitive people react to it. Well.. I've gone right back to having diarrhea, cramping some and having MORE mood problems than before the Depakote. I think I fall into the super-sensitive category here. Also, the manufacturer called and left a message on my phone, apparently there are other "unknown" milk proteins used in the manufacturing of the drug, and therefore there might be Casein in it, too. I don't know if I'm sensitive to Casein, but I avoid it anyway. There is some good news, at least. The extended release version doesn't have any lactose in it, so I can hopefully get switched to that this week. I'm a little tired of the backslide...

ravenwoodglass Mentor

I know, I made that mistake last year when I didn't have the money for it- I stopped cold turkey it was... very unpleasant. The problem is, I'm already on the generic version. Supposedly most medications have a minute amount of lactose in it as a binder, and only super-sensitive people react to it. Well.. I've gone right back to having diarrhea, cramping some and having MORE mood problems than before the Depakote. I think I fall into the super-sensitive category here. Also, the manufacturer called and left a message on my phone, apparently there are other "unknown" milk proteins used in the manufacturing of the drug, and therefore there might be Casein in it, too. I don't know if I'm sensitive to Casein, but I avoid it anyway. There is some good news, at least. The extended release version doesn't have any lactose in it, so I can hopefully get switched to that this week. I'm a little tired of the backslide...

Talk to your doctor as there may be other meds you can use if they are giving it to you for mood issues. I was on it for atypical seizures. You may find after you have been gluten free for a while that the med also is not needed as celiac can have effects on the brain that lead to anything from mood problems to epilepsy to MS type symptoms and those can resolve gluten free. I weaned off all meds at the end of the diagnostic process with my doctors help and never needed to add any of them back in but I was very lucky in that respect and all may not experience the same.

Stormy Rookie

I've been on every med you can come up with for the moods. This is actually the second time they're trying me on Depakote. When I came up positive(ish) for Celiac, it was one of my doctor's hopes that it would help my moods. And it has, a lot! :) I'm still not really normal though, hence the retry with Depakote... And the resulting chaos with lactose. Eeesh.. I'm hoping that maybe down the line I'll get to be in your shoes and won't be on any meds either, but right now I need something (peace of mind! lol).

Skylark Collaborator

Please read my story in my profile. Depakote is NOT the answer for celiac bipolar illness. No psych meds are. You will just keep breaking through until you fix the underlying nutritional deficiencies. You need a really good supplement designed for bipolars like Metagenics or EMPowerPlus, fish oil, and a decent amount of choline (lecithin or egg yolks).

sariesue Explorer

Have you tried newer psych meds ? Saphris, Seroquel, Abilify etc. Does the brand name Depakote have the lactose in it? It might be worth switching to brand name if it doesn't have the lactose


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



Celiac.com Sponsor (A8-M):



Stormy Rookie

I've tried all of them, sariesue. I've had multiple psych's look at me and say they don't know what to do with me! (This was before my Celiac diagnosis). Skylark, I'll check out your story tomorrow when I have time to really read it and think about it (I have to work soon). Thanks, for taking the time to post your story and realize that I'm probably in the same boat as you are! Fun times, having docs not know what's going on...

Skylark Collaborator

I've tried all of them, sariesue. I've had multiple psych's look at me and say they don't know what to do with me! (This was before my Celiac diagnosis). Skylark, I'll check out your story tomorrow when I have time to really read it and think about it (I have to work soon). Thanks, for taking the time to post your story and realize that I'm probably in the same boat as you are! Fun times, having docs not know what's going on...

Don't worry! We are fixable. I have had only one week-long manic episode since fall of 2006 and I'm pretty sure it was a Hashimoto's thyroid flare-up, because a hypothyroid depression followed it that was treatable by increasing my dose of thyroid.

Mango04 Enthusiast

I consider myself extremely sensitive to lactose and casein, but for some reason pharmaceutical-grade lactose in medication doesn't seem to affect me at all. You might be okay with it, too.

ravenwoodglass Mentor

I've tried all of them, sariesue. I've had multiple psych's look at me and say they don't know what to do with me! (This was before my Celiac diagnosis). Skylark, I'll check out your story tomorrow when I have time to really read it and think about it (I have to work soon). Thanks, for taking the time to post your story and realize that I'm probably in the same boat as you are! Fun times, having docs not know what's going on...

You may find these articles to be helpful. Hopefully you will be in the group they are referring to in the snippet that I bolded. It can take time but for quite a few of us things do get better after we have been gluten free for a while.

Open Original Shared Link

Psychiatric symptoms and coeliac disease

"Coeliac disease should be taken into consideration in patients with psychiatric disorders, particularly if they are not responsive to psychopharmacological therapy, because withdrawal of gluten from the diet usually results in disappearance of symptoms"

Administration of afobasol for correction of mental disorders in celiac disease patients

Open Original Shared Link

Stormy Rookie

Thanks, I'm looking into that now.. hoping I find something to help! :(

Skylark Collaborator

Stormy, I just answered your PM with a pretty big wall of text. Feel free to ask more questions!

sariesue Explorer

I've tried all of them, sariesue. I've had multiple psych's look at me and say they don't know what to do with me! (This was before my Celiac diagnosis). Skylark, I'll check out your story tomorrow when I have time to really read it and think about it (I have to work soon). Thanks, for taking the time to post your story and realize that I'm probably in the same boat as you are! Fun times, having docs not know what's going on...

I definitely know how that feels. I was labeled med-resistant after only a year because I went through all of the major meds. I also have a strange tolerance of medications. I either tolerate them too well and need huge amounts or I can't tolerate it at all.

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
      133,329
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • 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.