New to GA - Any Success with Diet Changes?

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Hello,

I was just diagnosed (biopsy) with GA last week.  I noticed the spots on my elbows about a week ago and was lucky to get into a dermatologist right away and have a biopsy done.  Unfortunately, the dermatologist and my doctor have not given me any treatment plan, really.   I asked about going gluten free and was met with "I wouldn't bother."  

I have been gluten free in the past though, so I think I will go back to it because it makes me feel better regardless of GA.  I also sent my hair allergy test kit in today, so hopefully I get something useful from that.  Is there anything else I can do?

Also, I have had many spots pop up on my hands quite literally overnight.  They are irritated when touched or pressed, which is an issue because several are on joints and obviously I move my hands a lot.  Does anyone else deal with this?  I would say it's painful, but it's very light/not severe pain.  It's mostly just annoying.  

It seems like the spots are just randomly coming and going from several areas of my body: my elbows, hands and tops of my feet mainly.  Does this happen to anyone else?  On my elbows, one day they are bright red, the next a dull brown; one day the bumps are quite pronounced, the next not as much.  It seems like they are changing way too quickly based on other posts I've read here.  

Finally, is has anyone here seen real success with diet changes?  Anything else that has worked?  Probiotics maybe?  

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  • Posted

    Hi, my son and I both have GA. Mine is the kind that doesn't itch and looks like a ringworm where his are just like you describe. They come up on his hands and knuckles and itch whenever he is triggered by a food or something else. Mine fade completely and come back whenever I'm triggered.

    We both have also been diagnosed with mast cell disease and our GA responds to the mast cell stabilizing medications which include antihistamines (both H1 and H2). Mast cells dump tumor necrosis factor and GA is mediated by tumor necrosis factor so there is a direct link. If you have inflammatory and allergy symptoms along with your GA, you might ask your immunologist about testing for MCAD (mast cell activation) disease. Good luck!

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    • Posted

      Interesting.  I don't know anything about mast cell disease at all.  I'll have to research it a little.  Are there symptoms of mast cell disesase I would recognize?  

      I've never really had any allergies, but I do know I react pretty badly to wheat (getting a blood test for celiac tomorrow, actually).  I used to have bad digestive responses to wheat, but ever since I've been pregnant, those have been gone, oddly enough.  So, I started letting gluten/wheat back into my life and it was a daily thing for me for the past year and a half.  I do wonder if that along with stress is what triggered my GA.  

      And, while I'm thinking about stress, that's a huge issue for me lately.  I have a young daughter and in the lsat year I actually also purchased a business.  It been enormously stressful.  My business flooded a couple weeks ago which really really really stressed me out.  So, I guess I have stress in common with many other GA sufferers.  

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  • Posted

    Sorry to hear that you have GA . I have tried several things. I am on low carb, clean eating diet. But what best worked for me was methodraxate. But side effects are not great. So I went off for a little while. I live in Florida and the heat makes it worse. I can not be in the sun. Hard to do living in the sun shine state. Good like Nikki I hope diet works for you.
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    • Posted

      Thank you.  

      I don't think I'm ready to try any pharmacuticals yet, at least not until I've exhaused the diet stuff.  I tend to get every negative side effect for every drug I've tried.  I'm honestly afraid to take anything more intense than an aspirin these days.  

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    • Posted

      I don't blame you Nikki taking drugs for one thing always creates other problems. I also have autoimmune issues. Do you have any other problems? my doctor said she found for some reason they affect people with different autoimmune diseases.

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    • Posted

      I have been wondering if I have hashimotos, but nothing has ever been diagnosed.  I know my body doesn't love gluten, just because of how I feel when I avoid it (I was GF for years and it was probably the best I've felt in the past decade).  So, yes, I think there are some other autoimmune things going on, I'm just not sure what.  

      I got my blood tests done today, yay.  I also sent in my hair sample for allergy testing yesterday.  I really want to get the results.  

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  • Posted

    Hi Nikki!

    I have had GA for 3 years now.... As you can see by the discussion we are all in the same boat "nothing you can do about it" message from our doctors.

    Knowing what I know now about this disease if I were you I wouldn't mess with trying anything right away do your homework our immune systems are most likely going haywire for our own individual reasons. What works for me won't necessarily work for you. What I DO know is cortisone injections will make them disappear plaquenil will also make them disappear BUT I won't take Plaquenil again unless I have a bad flare up OR they hit my face God forbid.

    In the meantime do yourself a favor and get those circles injected with cortisone right away while they are small. They will disappear and at least you will be done with those. If you don't they will get get bigger which I learned the hard way.

    Talk to your Dermatologist and if he/she isn't helpful see another one. I saw 4 the 4th one was willing to try to help me.

    As far as food/probiotics I vote NO as those being the cause.

    Good luck!

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  • Posted

    Hi Nikki, I have had GA for 18 months now.  Mine has become generalised.  Were you not given any steroid creams for your GA.  I am trying plaquenil.  Applie Cider Viniger seems to soothe mine and help fade a bit..
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    • Posted

      Hi j0603 , do you have anything at all? Little bumps or itching? Mine is all over my body and itches like crazy. How long has yours been gone? And what are side effects??? I am really getting frustrated. The methodraxate helped but I went off and I'm thinking about going back on. Or trying something else. The itching is the worst.

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    • Posted

      Thanks and that is great news. I heard about Plaquenil from a Facebook site I am on as it has worked for a some of the people on there. I have been taking it for 10 days but have been told it can take months to take effect.   I am really hoping it will work for me. 
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  • Posted

    Unrelated to GA, but can someone tell me why my other posts keep being deleted by a moderator?  I've read the terms of service and don't see where I'm violating anything.  All I have done is share my experience and try to be involved in a couple discussions.  This is very frustrating.  

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  • Posted

    Hi Nikki,

    We have a host of inflammatory and allergic symptoms with MCAD, so unless you have a bunch of stuff going on head to toe it is probably not that. I also remember that my first GA came up when I was messing with hormone creams, estrogen in particular. I also was running a home daycare at the time and had a lot of happy stress, as you can imagine. So stress plus hormones plus faulty mast cells did it for me I think.

    Our bodies are just so complex!! I hope you find the cause of yours, mine is still rearing its head and hasn't went away completely but hasn't really spread much, thankfully.

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  • Posted

    As an update, it hasn't been long, but my GA is almost gone.  The spots on my elbows, which were the worst, are faded to brownish and are almost my normal skin color.  The bumpiness is gone.  Today I woke up and there are no bumps on my hands.  I have some small red spots on my feet, but they're no longer bumpy.

    As for treatment, I never even picked up the cream that the dermatologist prescribed.  I did go back to being gluten free 99% of the time (my daughter force fed me a couple goldfish crackers yesterday and I just can't say no when she's being so cute).  I also decided I need to stop stressing so much and just started relaxing as much as I can mentally.  I guess that's helped?  

    I am no more clear on what caused my GA now than I was before and I really don't know why it faded so quickly, but I'm happy to see it go.  

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    • Posted

      Wow really happy for you. I have not heard of anyone who had it go away so quickly. I wish you the best. If you can figure out what helped you get rid of it let us know!!!
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    • Posted

      It isn't 100% gone, but it's way different than it was and I don't have any bumps on my hands now.  The ones on my hands were not very visible, but they were really annoying because they would sort of hurt whenever I moved/bent my fingers.  This picture is my right elbow, which is where the spots showed up second.  My left elbow they are 98% gone, but I'm still wearing a bandaid from the biopsy so you can't really see anything.  I'm hoping the right elbow is totally clear soon.  

      I do really think that this is related to inflammation.  I know my body reacts badly to gluten and I was also very stressed and just not eating well in general.  Corn also causes inflammation for me (I think) and I was having a lot of corn based foods like polenta.  

      Anyway, I hope everyone else sees relief soon.  I also hope this isn't just some weird temporary fluke.  

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    • Posted

      This is what ours does! Mine did disappear completely at first, almost overnight, when I was dx'd with MCAD and put on the medicines. It is still there, but it will almost fade to completely gone and the little blistery things flatten down and "fill" back up and also change color from neutral to purple depending on if I am triggered. It happens within hours.

      My son's comes up and goes down completely gone very quickly especially whenever he eats a trigger food. Corn does it to me, but not him. We both have to avoid all dairy and soy and we both seem fine with wheat as long as it is not mixed with mated barley. Malted barley really triggers us both badly!

      Anyway, I never used the cream the dermatolotist gave me, either. I left mine to see if it reacts to my mast cell medicines/triggers and it does.

      Good luck, Nikki, I hope yours stays quiet now!!

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    • Posted

      Oh! And my entire body gets inflamed, from head to toe. Even my gums bleed and I wheeze when my GA is really active so yes, inflammation is a huge part of the puzzle. It's just so bizarre...

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    • Posted

      I really do think your gums bleeding points at inflammation as a cause.  What I guess each of us needs to figure out is what is causing the inflammation for us.  I've known for years that wheat causes inflammation for me.  

      So far, things have continued to improve over the weekend.  No new spots on my hands and the dots on my feet are fading.  My elbows have continued to improve.  I've been strict with staying gluten free.  I think corn might also be a trigger for me, but I had a few tortilla chips on Friday without incident.  

      I'm going to keep updating as things change (or don't).  I just hope this doesn't suddenly show up again in a week or something.  

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