Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jess270 replied to AnnaNZ's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      29

      Bitters for digestion?

    2. - cristiana commented on Jefferson Adams's article in Origins of Celiac Disease
      7

      Why Bananas No Longer Cure Celiac Disease

    3. - trents replied to Dawn Meyers's topic in Related Issues & Disorders
      23

      Vaccines

    4. - GeoPeanut replied to Dawn Meyers's topic in Related Issues & Disorders
      23

      Vaccines

    5. - trents replied to KRipple's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac or Addison's complications? Can someone share their experience?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,052
    • Most Online (within 30 mins)
      7,748

    Diane Dutra
    Newest Member
    Diane Dutra
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jess270
      This sounds to me like histamine intolerance. Some foods have more or less histamine. processed or aged meats, fermented food like yoghurt or kimchi and bread (yeast), spinach, eggplant and mushroom are high in histamine. Other foods like tomatoes are histamine liberators, they encourage your mast cells to release histamine, which can also trigger the reactions you describe, flu like symptoms, joint pain, urinary tract irritation, rash, stomach upset, nausea, diarrhoea & fatigue. I had liver pain like you describe, as part of the intolerance is usually a sluggish liver that makes processing all the histamine difficult. There are multiple possible root causes of histamine intolerance, usually it’s a symptom of something else. In my case, leaky gut (damaged gut wall)caused by undiagnosed celiac, but for others it’s leaky gut caused by other things like dysbiosis. Some people also experience histamine intolerance due to mould exposure or low levels of DAO (the enzyme that breaks down histamine in the gut). I’d try a low histamine diet & if that doesn’t improve symptoms fully, try low oxalate too. As others have suggested, supplements like vitamin d, b, l-glutamine to support a healthy gut & a good liver support supplement too. If you’re in a histamine flare take vitamin c to bowel tolerance & your symptoms will calm down (avoid if you find you have oxalate intolerance though). Best of luck 
    • trents
      @GeoPeanut, milk is one of the better sources of iodine. Iodine is known to exacerbate dermatitis herpetiformis. Many people find that a low iodine diet helps them avoid dermatitis herpetiformis outbreaks. So, maybe the fact that you have limited your dairy intake of late is helping with that.
    • GeoPeanut
      Hi, I'm new here. Sorry for your troubles.herenis a thought to mull over. I recently was diagnosed with celiac disease,  and hashimoto's and dermatitis herpetiformis after getting covid 19. I eat butter, and 1/2 cup of Nancy's yogurt daily. I stopped all other dairy and  dermatitis herpetiformis is gone! I also make grass fed beef bone broth to help with myopathy that has occurred. 
    • trents
      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important) the reference ranges for each test used to establish high/low/negative/positive. Different labs use different rating scales so this is why I ask for this. There aren't industry standards. Has your husband seen any improvement from eliminating gluten from his diet? If your husband had any positive results from his celiac blood antibody testing, this is likely what triggered the consult with a  GI doc for an endoscopy. During the endoscopy, the GI doc will likely biopsy the lining of the small bowel lining to check for the damage caused by celiac disease. This would be for confirmation of the results of the blood tests and is considered the gold standard of celiac disease diagnosis. But here is some difficult information I have for you. If your husband has been gluten free already for months leading up to the endoscopy/biopsy, it will likely invalidate the biopsy and result in a false negative. Starting the gluten free diet now will allow the lining of the small bowel to begin healing and if enough healing takes place before the biopsy happens, there will be no damage to see. How far out is the endoscopy scheduled for? There still may be time for your husband to go back on gluten, what we call a "gluten challenge" to ensure valid test results.
    • kate g
      Ive read articles that there is stage 2 research being conducted for drugs that will limit damage to celiacs through cross contamination- how close are they to this will there be enough funding to create a mainstream drug? 
×
×
  • Create New...