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

Anybody Take Accutane?


collins146

Recommended Posts

collins146 Apprentice

Accutane is known to cause a myriad of side effects and autoimmune disorders are included. I took accutane and I think its related to my issues with gluten...

anybody else here take accutane?


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



Celiac.com Sponsor (A8-M):



belaugh86 Newbie
Accutane is known to cause a myriad of side effects and autoimmune disorders are included. I took accutane and I think its related to my issues with gluten...

anybody else here take accutane?

I took accutane and never had digestive problems until AFTER I took the drug. I took the generic version Isotretinoin. I had horrible reactions to it - thoughts of suicide, cutting myself (COMPLETELY out of the ordinary for me), anxiety, and physically I developed anal fissures, rectal bleeding, constipation, hard stools, hair thinning by at least 50% of my normal hair, and all of these problems except for the psychological ones are still present. I am currently in the process of setting up a colonoscopy to make sure I don't have polyps (which can also be developed from Accutane) and which are a precursor to some types of cancer, because I still have rectal bleeding from the internal and extremely painful fissures.

I think Accutane is absolutely horrific and should be taken off the market. I was warned about the psychological side effects and I only took the drug for 3 months from August to October of last year, but the side effects are still bothering me. I never had trouble digesting milk or wheat before I took this drug. My (very strong) opinion would be please do not take it, it's not worth the effects it has on your liver, kidneys, stomach, and intestines. But everyone reacts differently.

maggiemay832 Newbie
I took accutane and never had digestive problems until AFTER I took the drug. I took the generic version Isotretinoin. I had horrible reactions to it - thoughts of suicide, cutting myself (COMPLETELY out of the ordinary for me), anxiety, and physically I developed anal fissures, rectal bleeding, constipation, hard stools, hair thinning by at least 50% of my normal hair, and all of these problems except for the psychological ones are still present. I am currently in the process of setting up a colonoscopy to make sure I don't have polyps (which can also be developed from Accutane) and which are a precursor to some types of cancer, because I still have rectal bleeding from the internal and extremely painful fissures.

I think Accutane is absolutely horrific and should be taken off the market. I was warned about the psychological side effects and I only took the drug for 3 months from August to October of last year, but the side effects are still bothering me. I never had trouble digesting milk or wheat before I took this drug. My (very strong) opinion would be please do not take it, it's not worth the effects it has on your liver, kidneys, stomach, and intestines. But everyone reacts differently.

Oh my GOD! I had never had any of the problems with gluten or dairy UNTIL Accutane! I have been telling everyone that I just know the strain it put on my body is what brought on the Celiacs.. I even stopped taking Accutane before I was even close to being "done" with the recommended doseage!

KristaleeJane Contributor

I took accutane twice, once before I developed celiac, and then after too. I am not sure if I believe that there is a link between the two. It is a possiblity though, my sister also took it and we are the only people in our family that has celiac disease which is a little strange. It did clear up acne though but can you imagine if it was the cause. Scary....

gf-soph Apprentice

I took it (known as roaccutance here in Aus) years ago, i also didn't last the full course as I rapidly slid into depression (resolved very quickly once off the pills thankfully). My GI problems didn't start until a couple of years later, but it is such a nasty drug it wouldn't surprise me if there was a link. It didn't even fully fix my skin as I wasn't prepared to try it again!

Sophie

  • 3 weeks later...
twe0708 Community Regular

I was diagnosed with Celiac Disease and my daughter's dermatologist wants to put her on Accutane. After reading about all the side affects and blood work that needs to be done to monitor her, I am wondering if it's even worth it. Does anyone know of any other type of medicine that would help with acne that isn't so hard on the body? The last thing she needs is Celiac Disease. She already had a thyroid problem.

Gemini Experienced
I was diagnosed with Celiac Disease and my daughter's dermatologist wants to put her on Accutane. After reading about all the side affects and blood work that needs to be done to monitor her, I am wondering if it's even worth it. Does anyone know of any other type of medicine that would help with acne that isn't so hard on the body? The last thing she needs is Celiac Disease. She already had a thyroid problem.

Doctors ought to be shot for offering Accutane....it's a drug with side effects so severe, it should not be on the market. It can also cause birth defects and this has been reported from MEN who have taken it and then conceived children later on. It doesn't necessarily have to be the woman who has taken it.

Your post set off warning bells and I'll tell you why. I had skin problems all my life and they cleared up, all on their own, after about 2 months gluten-free. Yes, it was the wheat that was causing my acne. Your daughter has a thyroid problem and has acne bad enough that they have suggested Accutane? I think your daughter may have Celiac also. I know this is not what you wanted to hear but if it improves her problems, then it's worth a diagnosis. If you have celiac disease then the odds of your daughter having it, with the symptoms you have listed, is pretty high. If her testing has been negative, a dietary trial might be worth trying.

Acne is caused by an internal problem and is not the result of teenage hormones. However, to help with it externally, try the ProActive Solution line. It's well known, can be bought in malls or on-line and really does help, short term. I learned a long time ago that going to a dermatologist is the worst thing you can do for acne treatment. They refuse to believe that food is an issue and always want to prescribe stuff that will mess you up, long term.

I wish you luck with this!


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



Celiac.com Sponsor (A8-M):



collins146 Apprentice

twe0708 it definately is not worth it. If you need further convincing or your daughter does there are plenty of sources out there. It seems easy to ignore these things because you want to believe that it is harmless and that it will work. Do not ignore the warnings. I foolishly took it in 2005 when there was plenty of negative publicity and evidence about how dangerous it was. Some people(I know a few personally) have taken it and have little or no long term side effects while others can suffer from horrendous sides. It is a gamble and definately not worth it.

I've heard birth control helps females with acne. Laser treatment might be worth looking into. Some dermatological creams worked well for me, specifically tazorac. It is important to see the situation for what it is, Accutane is very dangerous and can have long term side effects and the issue that its treating is something that is will go away down the road(and even if it doesn't one can argue that self esteem is more important than appearance in any given situation). To my knowledge these side effects can be debilitating and life shortening/threatening. I know teenagers don't want to hear this, especially if their friends have taken accutane and it has completely done away with their acne, but it's obvious where the priorities should be.

Something else, don't start the program to see what happens. Thats the attitude I had about it and it's not going to be very effective for catching side effects. The depression can come on very slowly and you almost don't even know you are caught up in it while you are on the drug. Other people who have known the patient for a long time will know something is wrong, however it can be hard to judge personally because of how these psychological symptoms start and grow. Another thing that could happen is your child might be so pleased with how well the drug is treating their acne that they won't be completely honest with you, their doctor, or themselves about side effects. I'm 21 and took this when I was 17 and am finally getting some relief thanks to the gluten-free diet, however I still have unresolved issues.

maybe try acne.org for other ideas

  • 11 months later...
sfkate Newbie

Accutane is known to cause a myriad of side effects and autoimmune disorders are included. I took accutane and I think its related to my issues with gluten...

anybody else here take accutane?

Yes. I took Accutane. I now have Celiac Disease.:(

  • 3 weeks later...
wheatlessmeatless Newbie

I was on Accutane on and off between my junior and senior year of high school. I didn't have any symptoms of gluten intolerance until I started taking it. The symptoms I had are not ones I remember being explained to me by my dermatologist (digestive type problems).

I had no idea what was going on with my body until earlier this year when I discovered I had a gluten intolerance.

I do not know if it is the Accutane that caused my gluten intolerance. However if I knew then what I knew now (that acne wasn't just bad luck, and I could have fixed it by eating a better diet) I would not have taken it. Honestly I was just so excited at the prospect of my acne disappearing and being a normal high schooler. It is not something that should be given to a short sighted 16 year old girl, regardless.

MelindaLee Contributor

Doctors ought to be shot for offering Accutane....it's a drug with side effects so severe, it should not be on the market. It can also cause birth defects and this has been reported from MEN who have taken it and then conceived children later on. It doesn't necessarily have to be the woman who has taken it.

Your post set off warning bells and I'll tell you why. I had skin problems all my life and they cleared up, all on their own, after about 2 months gluten-free. Yes, it was the wheat that was causing my acne. Your daughter has a thyroid problem and has acne bad enough that they have suggested Accutane? I think your daughter may have Celiac also. I know this is not what you wanted to hear but if it improves her problems, then it's worth a diagnosis. If you have celiac disease then the odds of your daughter having it, with the symptoms you have listed, is pretty high. If her testing has been negative, a dietary trial might be worth trying.

Acne is caused by an internal problem and is not the result of teenage hormones. However, to help with it externally, try the ProActive Solution line. It's well known, can be bought in malls or on-line and really does help, short term. I learned a long time ago that going to a dermatologist is the worst thing you can do for acne treatment. They refuse to believe that food is an issue and always want to prescribe stuff that will mess you up, long term.

I wish you luck with this!

My DS took Accutane, but had better acne relief from going gluten-free! He hasn't been tested, but we think it's likely he is celiac as well. He went gluten-free before my dx, and doesn't think it's worth having to go back on gluten.

  • 5 months later...
Tyson Holly MD Newbie

There is new research out of University of Chicago on 2/10/11 linking celiac and accutane. They were able to induce full blown disease in mice but only if they were ready susceptible. This happened to me, but I see it as a blessing. It forced my diagnosis. or else I could be like my dad, who's had miserable gi issues his whole life. Still mad at Roche (drug company) bc there's no way they didnt see this in clinical trials. Class action suits are starting. Google it.

eatmeat4good Enthusiast

I took Accutane twice. 10 years apart. Maximum dose for the full course of treatment.

I don't blame Accutane for my Celiac/Gluten Intolerance.

I blame Gluten for my acne.

What if severe acne is caused by gluten? Then it would mostly be people who are Celiac/Gluten intolerant reaching for the Accutane.

Then later the other symptoms of Celiac/Gluten Intolerance show up.

And maybe they would have appeared anyway as part of the progression of continuing to eat gluten, but now it seems that Accutane caused it.

Just another way to think about it. I think gluten intolerance was my first problem. Accutane didn't cure the acne, but neither did it cause my Gluten Intolerance/Celiac.

Gluten did.

  • 1 month later...
eazyeazy Rookie

I blame Accutane for most of my digestive problems right now and further skin problems too. Judging from the time perspective it was the most stupid thing I have done in my life.

  • 1 month later...
utdan Apprentice

I don't believe the acne medication Accutane has been properly addressed here. Or, in other words, its pain has been sufficiently revealed.

I believe Accutane,for myself, came out to be MISERY IN A PILL. I took the max that a person can take at the age of 14 (at the time in 1989 that was 3 consecutive courses of accutane at 5 months per course of treatment). I had severe severe acne. To be accurate I have to preface this post that I long had nervousness before taking the medication. I've also taken another highly destructive medication after the accutane called Paxil (took that for 10 years). So I can't say exactly for sure where these problems are coming from. Maybe both medications have added together their effects on me.

Concerning the Accutane, after finishing all three 5 month courses I developed more symptoms in the years and decades afterwards including: dizziness, depression, insomnia, emotional instability, lethargy, drowsiness and weakness hair loss at age 15 and major male hair thinning/baldness at age 20. As I got older the worse the symptoms got. In my late 20s to now (35 yrs old)the weakness and lethargy and dizziness really has gotten bad. I've been eating gluten free since 2005 but the problems have gotten worse and worse.

In case anybody is weighing prospects for taking this medication Let me just say don't even think of giving any human being this medication for any reason whatsoever. Decades of misery may result.

  • 1 year later...
Gluten Free Girls Apprentice

I know this is an older discussion, but I have been researching acne treatments for my 13 year old daughter who has Celiac Disease.  Does anyone have information concerning what a proper protocol treatment would include for a teen with Celiac?  I took accutane in my early 20's and was diagnosed with Celiac and now have two daughters with Celiac but my daughters acne is present despite being strictly gluten free for almost two years.  I would greatly appreciate anyone's advice. 

kareng Grand Master

I know this is an older discussion, but I have been researching acne treatments for my 13 year old daughter who has Celiac Disease. Does anyone have information concerning what a proper protocol treatment would include for a teen with Celiac? I took accutane in my early 20's and was diagnosed with Celiac and now have two daughters with Celiac but my daughters acne is present despite being strictly gluten free for almost two years. I would greatly appreciate anyone's advice.

You might want to email Dr G at the university of Chicago Celiac Center. My teen doesn't have Celiac so the advice he gave me may be slightly different.

Open Original Shared Link

  • 2 months later...
SudiWig Newbie

Do as much research as possible.  I took Accutane in my 20's, that was over 30 years ago. Two years ago I was diagnosed with gluten intolerance, my doctor said I have celiac disease though I have not been tested for the gene. I am also dairy intolerant and allergic to soy. Now I just discovered there is a connection between Accutane use and IBS.  I would think twice before putting my daughter on this dangerous drug (for many reasons). I definitely would not put her on it if she has Celiac Disease. Research this, there are many stories online about horrible damage to bowels due to this drug. If you haven't already done so, try removing dairy from your daughter's diet, my skin improved greatly without ANY dairy, this includes yogurt and butter.  Good luck to you and your daughters.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,836
    • Most Online (within 30 mins)
      7,748

    RyanOB
    Newest Member
    RyanOB
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @Manaan2,  I'm so happy to hear you're going to try thiamine and magnesium!  Do let us know the results!   You may want to add a B 50 Complex with two meals of the day to help boost absorption.  Thiamine interacts with each of the other B vitamins which are all water soluble.   When supplementing magnesium, make sure to get sufficient calcium.  Calcium and magnesium need to be kept in balance.  If you choose a calcium supplement, take two hours apart from magnesium as they compete for absorption.  Take Calcium with Vitamin D.  Vitamin D helps calm the immune system.   For pain, I use a combination of thiamine, B12 Cobalamine, and Pyridoxine B6.  These three vitamins together have analgesic effects.  My preferred brand is "GSG 12X Takeda ALINAMIN EX Plus Vitamin B1 B6 B12 Health Supplementary from Japan 120 Tablets".  Alinamin is another form of thiamine.  It really is excellent at relieving my back pain from crushed vertebrae without side effects and no grogginess.   Look into the low histamine version of the Autoimmune Protocol Duet (Dr. Sarah Ballentyne, a Celiac herself, developed it.)  It really helps heal the intestines, too.  It's like a vacation for the digestive system.  Add foods back gradually over several weeks after feeling better.   I'm so happy to have pointed the way on your journey!  Let us know how the journey progresses! P. S. Add a Potassium supplement, too.  Potassium is another electrolyte, like magnessium, that we need.
    • Manaan2
      @knitty kitty I can't thank you enough!  My husband and I already started looking into those supplements.  We definitely plan to give it a try.  We've been against the Miralax since it was originally advised by PCP, but because of the level of pain she experienced on a daily basis, we decided to try it.  We've made many attempts to gradually decrease but due to her pain and related symptoms, we've kept her on it while trying all sorts of other dietary adjustments pre and post diagnosis specific to food; so far none of those efforts have made a significant difference.  I will definitely share how she's doing along the way!
    • BIg Nodge
      Hi, I have recently embarked on the gluten-free journey. I have what to me seems like a somewhat confusing set of test results and symptoms. I have been impressed by the accumulated knowledge and thoughtfulness as I browse this forum, so I figured I'd make a post to see if anyone can offer any insight. I know there are many posts like this from new users, so I have tried to do my baseline research first and not ask super obvious questions.  I'm 43, overall very healthy. No history of gluten sensitivity or really any of the classic GI symptoms. About three years ago I started to experience intermittent bouts of fatigue, chills/cold intolerance, and shortness of breath/air hunger (sometimes feels like a hollowness in my chest, hard to describe). The symptoms over time have become fairly significant, though not debilitating, I am able to exercise regularly and am fairly physically active, continue to perform well at work. But for example I have gone from someone who consistently ran hot, was always cranking the a/c, to someone who wears a down vest inside at work in winter and get chills if the a/c even blows on me in summer. I get tired and lose energy even when getting decent amounts of sleep, and have to have my wife take over on long drives that I could previously handle with no problems. More generally when I am experiencing these symptoms they seem to crowd out space in my mind for focusing on my family, my hobbies/activities etc, I sort of withdraw into myself.   I happened to be experiencing these symptoms during an annual physical with my PCP a few years ago, he observed post nasal drip and suggested it was allergies and that I treat it with claritin. At first it seemed to respond to claritin (though not zyrtex), but over time I became unsatisfied with that answer. There didn't seem to be any seasonal rhyme or reason to my symptoms, and I felt like I was on an endless loop of taking claritin, then stopping, not being sure if it was even making a difference. I did eventually get allergy tests and found modest allergies to dust and pollen, which didn't feel like a smoking gun.  I then started seeing a natural medicine doctor who was much more willing to explore my symptoms via testing. The first thing that came back abnormal was elevated thyroid peroxidase antibodies/TPOs, 137 IU/mL vs a reference range of <9. At the same time my thyroid panel showed normal thyroid hormone levels. So it appears my immune system is attacking my thyroid even though it is working fine. I got a thyroid ultrasound at the time, it was clear, but with some abnormalities such that they suggested I get is scanned again in a year. These are certainly risk factors for a thyroid autoimmune disease, though my thyroid seems to be working fine for now.  From here my doctor considered celiac due to the murky thyroid/celiac links, so we did a panel. Results were as follows: TT IGA <1 U/ml, TT IGG <1 U/ml, deamidated gliadin IGA 24.6 U/ml, deamidated gliadin IGG <1 U/ml, IGAs 170 mg/dL. Readings greater than 15 considered high by my lab for the first four, my IGAs are within reference range. So basically just the deamidated IGA popped, but my IGAs are normal. I also notice on the tests that my thyroglobulin was high, 86.7 ng/ml vs a range of 2.8 - 40.9.  My doctor suggested that it certainly wasn't conclusive for celiac, but it was possible, and likely that I have some sort of gluten sensitivity. She suggested going gluten free and seeing how I felt as opposed to doing a biopsy. The best theory I can come up with is perhaps I am a silent celiac or just have a gluten sensitivity that doesn't produce immediate GI symptoms, but is still doing damage and over time has caused leaky gut. So now gluten is getting into my blood, and my immune system is attacking it but also mistakingly attacking my thyroid.  So that's what I did, went gluten free in October. It's been about four months, and I am really not feeling any difference. I still get the same symptoms that come and go. My bowel movements may be a bit more regular, but it was never a major issue before so I would consider that a minor improvement. I know that it can take a while to see improvements, and I am going to remain gluten-free and see how I feel. But I am definitely questioning whether I really understand what is going on, and am open to any thoughts or suggestions from the forum. Sometimes I wish I just went ahead with the biopsy before going gluten-free. While I would certainly be down to start drinking IPAs again ahead of a biopsy, you know, for science, I feel like at this point I would be throwing away four months of work and am better off staying the course and seeing what happens. But I'm really not sure.  I know there is a lot of thyroid knowledge on these boards, along with the celiac expertise, so I'm curious if this resonates with anyone's experience. And I'm interested in what sort of timelines people have experienced in terms of feeling improvements for some of these non-GI symptoms like chills, SOB, brain fog etc. Thanks in advance. 
    • cameo674
      Does it taste like black licorice?  It said it was chewable.  I do not like that flavor.     Since the burn at the back of my throat is there everyday, I usually only take something when it is unbearable and keeping me from ADL especially sleep.  
    • Scott Adams
      Your concerns about Nando's cross-contamination practices are valid and important for the celiac community. It's disappointing that Nando's does not have stricter protocols for children's portions, especially given the risk of cross-contact with gluten-containing items like garlic bread. Cooking gluten-free items on shared surfaces, even if cleaned, is not safe for individuals with celiac disease, as even trace amounts of gluten can cause harm. While the adult butterfly chicken may be a safer option, the inconsistency in practices for children's meals is concerning. It's frustrating that Nando's headquarters did not take responsibility, but sharing your experience raises awareness and may encourage them to improve their protocols. Consider reaching out to celiac advocacy organizations to amplify your concerns and push for better standards. Always double-check with staff and emphasize the importance of avoiding cross-contamination when dining out.
×
×
  • Create New...