5 replies to this topic

[CoeliacinSydney]

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!

[eatmeat4good]

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.

[CoeliacinSydney]

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.

[eatmeat4good]

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.

[kareng]

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.

[MJS]

  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.