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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,567
    • Most Online (within 30 mins)
      7,748

    Trish-e
    Newest Member
    Trish-e
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Cat M
      Ah ok, I just saw didn’t even post the DGP IgA at all. 😫 I started with itching and hives Jan 2024, been taking a ton of meds and on Xolair and even that is not providing total relief. The other primary symptoms: intermittent but worsening abdominal pain, diarrhea and bloating. This summer I am just exhausted. I uploaded my 23andMe data to genetic lifehacks and discovered quite a few variations, including DQ2, MTHFR, VDR and I have always had very low ferritin, vitamin D and B12. I still think that mast cell disease makes the most sense, but latest labs show I am barely in range for thiamine, zinc and vitamin A, so the GI stuff feels more important to figure out than the hives right now. I did SIBO testing this morning. TTG IGA <2   0-3 is negative TTG IGG  3   0-5 is neg DGP IGA 21    20-30 is weak positive DGP IGG 4    0-19 is negative Although total IGA is not resulted, there is a footnote stating it was low and the reason they ran IGG.  
    • Scott Adams
      This is an interesting case. A positive tissue transglutaminase (tTG) antibody with a negative endomysial antibody (EMA) and normal duodenal histology can present a diagnostic challenge, especially in an asymptomatic patient. While the absence of villous atrophy and negative EMA suggest that the likelihood of active celiac disease is low at this time, such serological discordance may still warrant monitoring. Some individuals may be in the early stages of celiac disease, often referred to as potential celiac disease, particularly if they carry the HLA-DQ2 or DQ8 haplotypes. HLA typing can be quite helpful in this situation; a negative result would virtually rule out celiac disease, whereas a positive result may justify periodic follow-up to monitor for evolving disease. The risk of progression to overt celiac disease is not well defined but appears to be higher in children, those with a family history, or those with autoimmune conditions. In this case, routine follow-up including repeat serology and consideration of symptoms or new risk factors over time would be a reasonable and cautious approach. For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:      
    • Scott Adams
      Have you tried to start a gluten-free diet since your diagnosis in 2019?
    • trents
      Welcome to celiac.com, @Wamedh Taj-Aldeen! Just curious, what is your relationship to the patient? Are you the attending physician? A medical student? A consulted physician? Was a total IGA test ordered? Some physicians are under the dated and mistaken impression that such is only necessary in young children. If total IGA is low, other IGA antibody numbers will be artificially depressed. By the way, it is not unusual to have a positive TTG-IGA and a negative EMA. Are the TTG-IGA numbers borderline high or unequivocally high? There are other diseases and medical conditions that can cause elevated TTG-IGA numbers besides celiac disease but when this is the case, the numbers are usually not dramatically elevated. It can also be the case that villous damage was patchy and affected areas were missed during the biopsy. Or, onset of celiac disease was very recent and villous atrophy has not yet progressed to the point of detectability.  We also have occasional anecdotal reports in this online community of positive antibody testing with negative histology, as you report. But we also know that gluten intolerance can manifest itself apart from enteropathy. It can damage other organ systems. Many celiacs are of the "silent" type, meaning there is an absence or a relative absence of symptoms until the disease has become advanced and there is significant damage to the villous lining or other organ systems. But to answer your questions: 1. I would definitely pursue a routine follow-up and recheck of the antibodies. And, I would order a complete celiac panel including total IGA and IGG stuff in say, six months. Sooner if symptoms manifest. 2. It is impossible to say what is the risk of the future development of over celiac disease. I refer you back to my #1 above concerning rechecking.  3. I would definitely pursue HLA DQ2/DQ8 typing as it can be used as a rule out for celiac disease, though not quite with 100% dependability. I hope my thoughts prove helpful to you.
    • trents
      Welcome to the forum, @dominiqueccms! Unfortunately, your story is all too common. Some older physicians are dismissive when it comes to gluten intolerance disorders and have this attitude like, "It's the latest fad disease." My advice to you is to get another doctor who has more current knowledge in this area and will take this seriously. In the meantime, this might be helpful: In six months to a year you would do well to get your antibody numbers rechecked to see if you are succeeding in your efforts to eat gluten free. Do you have the numbers from the original testing?
×
×
  • Create New...