Treatment strategies...more ideas!
Posted , 77 users are following.
Hello, I'm Lisa, a happy, healthy woman in my 50's - Random purple/red rash (ankles/ legs/ wrists/elbows) appeared within past year... GA diagnosed by biopsy. Tried strong steroid topical cream w/ minimal results.
I am amazed how passive my dermatologist and physician have been! Bascially "don't know where it comes from, you have a diagnosis, nothing to be done."
Glad to have found this forum, although I am surprised that there are so few members. Still, let's get some POSITIVE energy going around this!
Disclaimer: I want to freely offer my thoughts, but if they differ from someone else's course of action, no judgement is implied at all!
I do not want to take medication, but rather, gently explore the root of the GA. It's an auto-immune response, so our bodies our telling us to change something!!
In my very limited research so far, GLUTEN has been mentioned as a potential cause....has anyone else heard that? Because I have already gathered lots of compelling info on the merits of a gluten-free diet, I am starting that approach - not an easy path, but I'm willing to try it and will keep you all posted (fyi, altho not vegetarian, I do follow a pretty healthy diet - mostly whole/ fresh/ organic foods).
In terms of treating the exisiting rash, I have just read something about ULTRAVIOLET LIGHT THERAPY- anyone else heard about this for GA? I am going to investigate that asap, and will keep this group posted.
Thanks so much for this opportunity to connect and brainstorm!
7 likes, 262 replies
patty98033 Lisa3vermont
Posted
Nice to see you here. I am 72 and in about year 4 of GA - also diagnosed by biopsy. In 2014 after trying all of the standard GA recommendations without results & reading everything I could find on GA, found that the most helpful posts were from folks posting here who had had some (or a lot of) success with theirs. The ones I found most helpful were those who mentioned that finding out about food allergies (as you mentioned with gluten) and eliminating that food (or foods) brought positive results but that it took several months to have significant results.
I tried the Whole 30 diet which eliminates several foods for 30 days and is a good place to start since you can find out about it online for free. I didn't have success with this so later tried JJVirgin's elimination diet with the same success - none. Because it didn't work for me doesn't mean that it won't work for someone else so also worth trying.
Not giving up, I decided that I needed help. After a significant amount of searching for a testing service that was reasonable since neither my dermatologist nor endocrinologist were supportive of my proposal that this might be caused by a food allergy, I found a group in England who uses a hair sample and for a little over $100 US does a DNA test on a hair sample that you mail to them. I got my results on May 1 and that day eliminated all of the foods mentioned - all of which I ate regularly and considered them to be healthful foods. Within a few weeks I noticed that I was no longer getting new outbreaks and that the existing granulomas seemed to be fading some or at least not continuing to grow.
It is now 8 months later and my hands & arms are cleared with only some residual faint color left in the skin. My feet & legs are taking longer but are definitely improved and several of the larger ones now have flesh colored interiors (instead of red/purple) and the ridges around the edges are diminishing.
It probably won't help you because each of us is different, but some of the things that were on my list were tomatoes, coriander (cilantro), bromelin (an enzyme in pineapple), cauliflower, peas, grapefruit & egg whites. None of these caused me any noticeable reaction when I ate them but as I continue to avoid them, I am definitely continuing to notice an improvement in the GA.
So that's my advice. Continue to try to track down food intolerances or allergies and eliminate the items from your diet for long enough for the absence of them in your diet to allow you to heal yourself.
Good luck with your quest.
Patty
Lisa3vermont patty98033
Posted
Very best, Lisa
PS. I like the way you phrased this..."the absence of [food allergens] in your diet to allow you to heal yourself." It may sound strange, but I believe that "allowing" is key for many of us, as it is the opposite of "resisting." In that spirit, I am adding (brief, daily) meditation to my health regime.
patty98033 Lisa3vermont
Posted
As far as taking "medicine" to get rid of this, when my current dermatologist suggested the cortisone injections, I told her that I didn't think I was suffering from a deficiency of cortisone. She actually laughed and agreed. A couple of years ago, my previous dermatologist talked me into trying the injection on one - I reluctantly agreed. What he had not told me was that this was not to be just one injection but since this was such a large one that he gave me 23 injections around the perimiter of it. It still took about 6 months for it to go away and the discoloration is still there. No more, thank you very much! I should mention that the reason that he is not still my dermatologist is that we moved, not because of the injections.
I think that meditation relieves stress and is likely to decrease your symptoms if stress is making your GA worse.
It seems reasonable to me that IF you end up taking medication for it, you are probably not dealing with the cause and I really want to control my GA by eliminating or reducing whatever it is in my environment or diet that's been causing it.
Best of luck to you!
Patty
Lisa3vermont patty98033
Posted
deb090697 patty98033
Posted
Just wanted to give an update. Gluten free and I mean 100%. Many of the worst ones are gone. I also have no stomach symptoms. Still have outbreaks so giving up diary and soy now.
Just wanted to say that everyone needs to keep in mind this is a symptom so there are many causes and not one cure. I have severe damage from Cortisone injections. I am permanently disfigured. Just from folks that I have worked with that have this problem. My suggestion is to get allergy tested first. Then start changing your eating habits. Go without Gluten, diary and soy. See if you get results. If not then maybe time to see to see if your symptom is from some other cause bacteria, diabetes, etc.
Regardless, I am putting on a swim suit and going to the beach this summer. I've had enough of hiding. Good luck all.
patty98033 Lisa3vermont
Posted
Don't know if you read that before doing the hair/DNA test for intolerances, I had already done 2 strict 30 day elimination diets (a few months apart) that eliminated dairy, soy, gluten & all other grains, sugar, artificial sweeteners, and a couple of other things that are not coming to mind right now. These were from 2 different "experts" so were somewhat different. I had zero benefits by removing all these things and zero problems returning them to my diet except for the things that my reading told me they weren't good for me anyway like sugar, soy, wheat (which I have a little of but not daily) which I just left out for general health reasons. I did go back to dairy but only full fat so less sugar & dairy protein (on my husband's Intolerance list). I was at my wits end trying to figure out what foods (if any) were contributing to my GA and this is why I searched out the DNA test. I really didn't have much confidence that it would work but thought that I'd thrown away money on other worthless things (haven't we all?) & since it was very reasonable compared to the othe tests that I looked at, I decided to give it a whirl. I don't know that I've found the whole answer but no more do people walking behind me when I'm wearing knee length pants say "Eeww, what's wrong with your legs?". Friends that saw me months ago when it was so bad are now saying, "wow, look how great your legs (or feet or whatever) look." Yea! Not totally healed but recovering.
Anyway, don't give up. I think there's an answer out there for all of us and I don't think mine is some prescription medicine that I have to take for the rest of my life.
Hang in there...
Patty
patty98033 deb090697
Posted
Patty
SallyN patty98033
Posted
Just read your posts about the intolerance testing group in the UK - I hadn't come across it before ( the one I know about is the york test) and I live here!! I am doing reasonably well on the elimination diets but feel there's more mileage to be had looking more deeply into intolerances so I will give the DNA hair test a whirl..
Many thanks for all your input.
Cheers
Sally
patty98033 SallyN
Posted
Doing this test has turned into a very interesting experience for me. Hope it works out for you if you decide to go for it.
Good luck!
Patty
SallyN patty98033
Posted
Just seen you mention meditation to Lisa. I'm starting Deepak's free 21 day meditation challenge today all about manifesting true success, well that means healthwise too! I always do it every time they offer it, about 3 or 4 times a year. Lovely meditations.
By the way, did you just go for the 105 dollar DNA test or did you go for the others as well?
Cheers
Sally
patty98033 SallyN
Posted
Don't think it was me that mentioned meditation but while I've never tried it, I know people who firmly believe in it's benefits.
I added on the deficiencies test which only adds $10 when you get it with the other one (unless they've changed it since I last looked). It was very interesting to find that several foods recommended to contain my low nutrients were in foods that I ate all the time but was intolerant of - probably don't digest it as well when you are intolerant of it. Another thing I was deficient in are probiotics so that also makes sense that I wouldn't be absorbing things if I didn't have the tools to digest them.
I had never been tested for the things that showed up on my report but my husband's report showed that he is deficient in iron and that also always shows up on his blood tests when he goes in for annual physicals - so some corroboration there.
I plan to do it again at about 1 year to see if things have changed. I know that can happen when you avoid something for a period of time. I'd sure like to be able to eat strawberries, eggs & cauliflower again.
Good luck!
Lisa3vermont patty98033
Posted
Leezydeez patty98033
Posted
How are things going with "DIET" from Intolerance Testing? I am considering this . Apparently I can do it from Australia. Lee
patty98033 Leezydeez
Posted
Things are going well. This is a much slower process than I would prefer but since before doing this, I had been diagnosed with GA for two years and none of the dermatologists suggestions, prescriptions, etc had done anything to stop or even slow down the breakouts. It started with one just below my left knee on the inside of my leg and progressed from there. During the next two years I did the Whole 30 elimination diet for 30 days with no result and several months later tried JJ Virgin's diet which is similar but not the same - also with no results. Between those two, I pretty much figured that I had eliminated the most common allergens so I needed help see if I was even on the right track - that food or other sensitivities were, if not the cause, at least contributing factors.
At this point, both of my feet and both legs from the knee down were covered. My hands & arms up to my elbows also had a number and on my upper arms, legs and torso, I had a few. Fortunately, none on my face.
Anyway, within about a month of eliminating the 9 things on my list that were actually part of my diet, I noticed that I was no longer breaking out with new ones and some of the smaller ones seemed to be fading some. Within about 3 months, the ones on my hands & arms are gone except for some discoloration where some of the worst ones were. The ones on my legs & feet were worse than any others and they are also fading. Some are a long way from gone but are definitely improved.
The ones on my feet seem to be slow responders & in thinking about it, because we live where it's usually warm, I wear sandals most of the time. On the non-food items list is Bermuda grass so I'm now thinking that when I walk across the lawn & do other yard work, I am coming in contact with it. I often stand on the lawn in order to reach weeds in the flower beds. Duh!
I have been on this plan for 10 months now and in addition to eliminating the foods on my intolerance list, I've been working on eating mostly foods from around the edges of the supermarkets - avoiding things in cans & boxes that have all kinds of additives that (IMHO) were never intended for human consumption.
I could give you a list but I don't think it would help any one else (and I have previously mentioned several of these items). My husband did the test too - or rather, I didn't give him a choice
, and the only item on both of our lists is egg whites and none of our non-food intolerance items are the same.
So, for me, getting this test was well worth it & I can't think of any other reason that my GA would have started to improve at that time after only getting worse for 2+ years.
Good luck to you on this. If you decide to go for it, let us know how it goes.
Patty
SallyN patty98033
Posted
Just ordered the test, decided to go for metals too as I had all my mercury amalgam removed about 6 years ago and I know I had a lead problem years before that from a previous test I did. This test is a fair bit cheaper for UK residents so decided to go the whole hog! I'll keep you posted once I've done it and get the results.
Cheers
Sally
JohnCharles patty98033
Posted
As I've mentioned before I did the test a month ago and have been on the paleo AIP diet for over 2 weeks also cutting out all the foods the test brought up.
Bit confused though because on the non foods it had this..
Aspergillus Niger Percentage: 99 Black mould that appears on fruit, vegetables and nuts.
Have you heard of this was it on yours?
I'm still eating fruit and vegetables so I'm hoping they don't have this on them
patty98033 SallyN
Posted
Curious to know what yours turns up if you'r willing to share.
Patty
patty98033 JohnCharles
Posted
Neither of us have this on our lists and I had not heard of it. I just did an online search for it and it appears that it can be on a lot of fruits, vegetables & grains. I suggest that you do a search yourself and see which of the fruits & veggies that you buy/eat might have this. I found articles about aspergillus at Mayo, Cleveland Clinic, CDC and lots of others. Wikipedia too but I'd put more weight on info from the others first.
We have vacationed in Mexico several times with cousins who have a timeshare there & she always buys some bleach, fills the sink with water & puts in a couple of tablespoons of bleach into the water & soaks the fruits & veggies before putting them in a refrigerator or ouit on a counter for people to munch on. I've heard that vinegar will also kill bacteria & moulds but haven't put this to a test.
kate43351 patty98033
Posted
Hi Patty,
I've been reading the thread. I'm 45 and have the perforating variety and it is creeping up from my foot to my knee in a delightful blistering tide mark of purple pustules! I'd be really interested to hear if after 3 years of avoiding certain foods yours has improved. Yours hopefully, Kate