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

By Stormy
in Related Issues & Disorders

Recommended Posts

Stormy Rookie
Stormy
Posted

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
ravenwoodglass
Posted

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
Stormy
Posted
  • Author

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
ravenwoodglass
Posted

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
Stormy
Posted
  • Author

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
Skylark
Posted

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
sariesue
Posted

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
Stormy
Posted
  • Author

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
Skylark
Posted

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
Mango04
Posted

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
ravenwoodglass
Posted

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
Stormy
Posted
  • Author

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

Skylark Collaborator
Skylark
Posted

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

sariesue Explorer
sariesue
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,768
    • Most Online (within 30 mins)
      7,748
    deniserdh
    Newest Member
    deniserdh
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Refractory or super sensitive?

      By knitty kitty · Posted

      @Levi, How are you doing?  Sorry I missed your posts.   How's your thyroid?  Did your Vitamin D stabilize?  Do you have long hauler syndrome after Covid? Consider switching to Vitamin D 3, the natural form of Vitamin D.  Vitamin D 2 is the synthetic form of Vitamin D which the body can have difficulty changing to an active form.  Also, Thiamine is needed to active Vitamin D.   Hypothyroidism can be caused by Thiamine deficiency.  The thyroid is an organ that uses lots of thiamine.  sometimes thyroid deficiency can also cause hyperthyroidism, or swings between both hyper- and hypo-thyroidism. We need more Thiamine when we're sick with an infection (like Covid) or injured.  We need more Thiamine when we're physically active.  We need more Thiamine when we're emotionally stressed or worried.  Our brain uses the more Thiamine just thinking than our muscles do while running a marathon.  Thiamine is extremely important in fighting infections.  Covid patients and long haulers have found taking Thiamine has improved their survival rate and long term symptoms.   Consider taking a Thiamine supplement like Benfotiamine which has been scientifically shown to promote intestinal healing.  Damaged villi need thiamine to grow back.   Be sure to take a magnesium supplement, too.  Thiamine and magnesium make life sustaining enzymes together.  You also need magnesium to keep calcium in the bones.  The thyroid regulates calcium.  A wonky thyroid can lead to reduced bone density.   Remember the B vitamins all work together in concert so adding a B Complex to Benfotiamine and magnesium supplements and Vitamin C would be great in improving absorption of nutrients while we're dealing with celiac disease. Namaste
    • lizzie42
      Gluten free and oat free bars not sugary?

      By lizzie42 · Posted

      I'm looking for bars or non perishable snacks for my 2 kids. They are 5 and 3. The 3 year old seems sensitive to oats also. We do a lot of long hikes and bike rides. They eat mostly fresh foods but for these rides and hikes we need easy and non perishable. Also that taste good! We do a lot of larabars and freeze dried apples but those are getting old. Any ideas? 
    • knitty kitty
      Inflammation and Menier’s disease link?

      By knitty kitty · Posted

      Oh, @MagsM, Sorry you had that happen with Niacin.  500mg is the maximum amount of Niacin one should take.  Niacin works hand in hand with Thiamine, so a big influx like that can imbalance thiamine if not supplemented at the same time.  All the B vitamins work together in concert.  Niacin in doses at 500 mg or above have been used by doctors to lower triglycerides levels and raise HDL, the good cholesterol.  Pharmaceuticals to do the same thing are more expensive and thus more profitable for physicians. Has your doctor tested you for H. Pylori?  An infection by H. Pylori can be tested for by your doctor.  H. Pylori can cause low tTg IgA results, too.   I would hold off on the microbiome test for now.  Your microbiome is going to change when you go gluten free.  Your microbiome will change when you start taking Thiamine.  Thiamine supplementation influences which microbes grow in the intestines, encouraging beneficial bacteria and getting rid of the bad ones.  Thiamine in the form Benfothiamine promotes intestinal healing, too.  Adopting the Autoimmune Protocol Diet (by Dr. Sarah Ballantyne, a Celiac herself) after diagnosis will also change your microbiome.  This is the best diet to heal and recover, IMO.   If you're going to have more testing done for vitamin deficiencies, don't take vitamin supplements beforehand, otherwise the tests will measure the vitamin supplements in your bloodstream and give false results.  Same thing will happen if you take B vitamin shots.  The supplements you mentioned (Arterosil HP and Vascanox HP) are herbal support and do not contain all eight B vitamins.  There's no harm in taking them, but I prefer a B Complex that contains all the B vitamins in activated forms like Life Extension's Bioactive Complete B Complex.  All the B vitamins work together in concert.  Magnesium is important to supplement as thiamine and magnesium make life sustaining enzymes together.  Do not buy supplements containing Thiamine Mononitrate because it is not biologically active.  It is very hard for the body to utilize.  Most of it (70%) passes out unused.    Yes, my Meniere's disease has not returned.  I was deficient in Vitamin D.  I took high doses of Vitamin D 3 to correct the deficiency quickly.  I also took TTFD (tetrahydrofurfuryl disulfide) which is a form of thiamine different from Benfotiamine.  TTFD can cross the blood brain barrier without a carrier, so it can get into the brain very easily.  TTFD helps the Vagus nerve function.  The Vagus nerve regulates the ears and balance, and also the digestive system.  I like Allithiamine by Ecological Formulas.  I also like Thiamax by Objective Nutrients.  You should have improvements within a hour with TTFD.  TTFD is much stronger, so lower doses will give amazing benefits (50-200 mg).   I hope this helps give you some direction to take on your journey!
    • MagsM
      Inflammation and Menier’s disease link?

      By MagsM · Posted

      Thank you so much for this in depth analysis. I am currently taking Vit D3/K2 5000IU daily.i started taking a flushing Niacin but foolishly took a 500mg tab and nearly passed out! I have just ordered a gut microbiome genome test and it will be interesting to see what my current balance of microbes are. After I finish diagnosis I will definitely go gluten free. Diagnosis will inform exactly how strict I’ll need to be regarding cross contamination etc. my focus will be on healing the gut. I have also been focusing on the oral microbiome - cutting out FL and using more natural products as well as daily oil pulling. I read from some of your other forum entries about Benfothiamine and I’ll definitely order that. I’ll make sure my doc orders more detailed vitamin and mineral panel plus total IGA as well as the DGP-IGA and DGP-IGG tests. We will see if I can get the endoscopic biopsy done. Do you think I should request Vitamin B shots to get me started?  My daily vitamin protocol will likely be VitD/K2 5000IU, Benfothiamin 300x2, Niacin (flushing) 50mg working up to 300mg. I also take a EPA/DHA as well as some vascular support (Arterosil HP and Vascanox HP) as well as Magnesium at night. Which B complex brand do you like? I will see what the gut microbiome test comes back with. I’m sure they will try to sell me pre/probiotics and maybe some digestive enzymes. What are you thought on those? I’m curious if you managed to go into full remission from your Ménière’s disease? Thank you so much for your thoughtful insight. I know that building back up my gut health and immune health will help in so many ways as well as protecting me from many other major diseases as I go into my 60s and beyond. 
    • Scott Adams
      Any bad experience with King Arthur Gluten-free bread flour

      By Scott Adams · Posted

      You are right! The logo the have on their packages got me confused--it looks like they are less than 20ppm, not certified GF. Thanks for catching that! My brain also zeroed in on this "less than 10ppm" but I should have seen the rest...
×
×
  • Create New...