Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Taking Accutane With Existing Coeliac?
0

6 posts in this topic

Hi everyone

My teenage son who was diagnosed with Coeliac around 3-4 years ago, is now suffering acne and we are seeing a dermatologist next month to discuss Accutane, as he has tried other antiobiotics etc and they don't work. I know there are links to Accutane triggering Coeliac,but I am wondering if anyone has completed Accutane who has been previously diagnosed with Coeliac and already on a gluten free diet? My other teenager also has acne and is not Coeliac.

Thanks!

0

Share this post


Link to post
Share on other sites


Ads by Google:

I took Accutane the year it came out for cystic acne.

I still needed antibiotics.

Ten years later I had to repeat the full course of Accutane.

Still the cystic acne returned.

Antibiotics never worked on my acne either.

Being gluten free did.

I am not one who thinks the Accutane caused my Celiac.

I think Celiac and gluten caused my "acne".

Later developed Dermatitis Herpetiformis, the skin form of Celiac.

But I suspect the cystic acne that Accutane was prescribed for was my skin reaction to gluten all along.

I'm 48. I don't know if I answered any of your questions, but I wanted to share my experience since I had quite a lot of Accutane.

0

Share this post


Link to post
Share on other sites

Thanks for the reply. Had you been diagnosed before going on Accutane and if so, did the drug affect your Celiac symptoms at all? I am trying to find out whether the drug could make him potentially sick, since he is already celiac. The acne is genetic, and since he has been gluten free for so long I know it isn't caused by gluten.

It's funny, because my husband was one of the first to try Accutane and he is 44. The dermatologist has said we are her first "second generation" Accutane users which made her feel very old, lol. He had such adverse reactions to it, because it wasn't monitored with blood tests or used in low dosages. It cured his acne, but caused all sorts of side effects. He never got Celiac though, that has come from my side of the family. It's such a random illness.

0

Share this post


Link to post
Share on other sites

No I didn't know about Celiac until I was 47 so I was not diagnosed at the time I took the Accutane.

I hope you find someone who can help.

One thing to try is giving up dairy and all grains not just wheat.

Some people have had great success curing their acne problems this way.

When I was on Atkins diet years ago my acne miraculously went away.

I'm only suggesting this if you decide to try something natural before you try Accutane.

I think the drug was a wonderful thing for me and it has helped an awful lot of people.

Best of luck to your son.

Incidentally, the B vitamins help the body to metabolize better and when I started supplements I noticed the oiliness in my face greatly improved...almost to the point of normal oil production.

0

Share this post


Link to post
Share on other sites

She and I have been pming about the stuff our boys are using but I think I should put this here, incase anyone else wants to see it.

Our derm said she would not give Accutane to anyone with celiac or celiac in the family. She has had a bad experience with it with some patients. She said the small amount of studies are inconclusive but look like something is going on there.

There are many different gels and antibiotics to try first. We found that the Epiduo gel was too harsh and made his face redder and irritated. Made it look like it was worse but was actually getting better. We switched to Duac & Differin for the skin treatment with the antibiotic and it seems to be coming along.

0

Share this post


Link to post
Share on other sites




There are many different gels and antibiotics to try first. We found that the Epiduo gel was too harsh and made his face redder and irritated. Made it look like it was worse but was actually getting better. We switched to Duac & Differin for the skin treatment with the antibiotic and it seems to be coming along.

I tried multiple antibiotics and in the time that it took me to give them a chance to work, my acne went from terrible to just plain disgusting, and I still have scars all over my face and shoulders to show for it.

I'm curious what your dermatologist cited as reasons for not prescribing it to celiacs?

I was dx with celiac when I was 15, started Accutane right before I turned 18. I'm now almost 21. Just wanted to give you a time frame reference.

Accutane is not a joke. The side effects are real, especially the joint pain. I used to wake up in the middle of the night feeling like my shoulders and hips were on fire. That being said, although the experience was rough, I would not even hesitate in the slightest to do it if I could do it over again. My dermatologist has literally put of thousands of people on Accutane, with 0 extreme complications. The change in your son's life will be well worth the ordeal. People just don't treat you well when you have severe nodular acne.

To give you the other side, I have become more sensitive to certain foods since coming off Accutane. But I don't know if this is causation or correlation. About 4 months after I finished Accutane (and they say it stays in your system and continues working for months after you stop the actual pills), I started having weird stomach issues. I did a colonoscopy/endoscopy and they found one abnormal biopsy consistent with Crohn's Disease. They later retracted the diagnosis and said it was an immune response to an infection that had been cleared.

So basically, I think Accutane was one of the best decisions I ever made. My mother believes it gave me Crohn's and arthritis (I had hip surgery last year, but I think that was because I had a longstanding running injury from cross country). But the fact that people aren't afraid to look at me anymore, the fact that no one turns away in disgust when they see mountains of hardened pus spewing all over my face under 2 inches of makeup, is worth it to me. Combine that with the fact that it has been proven that people discriminate against prospective job candidates with bad skin during interviews, and it is a risk worth taking in my opinion.

Hope this helps you somewhat. Feel free to ask me more if you want to hear more from a teenager's perspective.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,697
    • Total Posts
      921,781
  • Topics

  • Posts

    • It only takes a minute to make a difference. Celiac disease has been overshadowed by the gluten-free diet fad. Getting diagnosed and staying healthy is no piece of cake – those of us who have celiac disease struggle to stay healthy. We need better. We need to be understood. We need a cure. View the full article
    • If you are one of the approximately 2-3 million Americans with celiac disease, ZyGluten™ may be taken before you eat out at a restaurant or a friend\'s house, as it may help break down any gluten cross-contamination that you might encounter. View the full article
    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,702
    • Most Online
      3,093

    Newest Member
    Gigi Fagon
    Joined