Hi, I have tried all sorts of different restrictive diets over the past year to see if it makes a difference in my flares. Gluten free, elimination diets, low histamine diet, low carb, low sugar, no dairy, etc. Every time I go on these diets there seems to be no difference in my condition, my flare ups don’t seem to improve at all. But once I decide to go off these diets my face seems to react poorly and flare up, it doesn’t make sense to me. Has anyone else experienced this?
I am on a corn free and gluten free diet. I might also be celiac, some doctors said yes, some said no. For a while I was totally grain free. That means no gliten, corn, rice, or soy. Then I found out rice didn’t make me sicker at all (I have multiple health problems and think the EM is the kingpin). Then I tried corn and wished I were dead for 3 days because my stomach felt like I had l drunk draino or something. Just awful. I can tolerate a small amount of soy. I haven’t tried gluten yet because the corn was so awful. One doctor thought I probably have celiac’s with cross reactivity. Which means your body acts like you ate gluten even when you are eating corn, etc.
Through all this, I have not noticed it affecting my EM directly. Although sometimes eating melons make areas a little worse that usually aren’t involved (hands, face). But just sometimes.
And I have heard that eating carbs makes some people’s EM flare up. I don’t think it does mine, although I watch my carbs anyway for other reasons.
@Cindy2 I can’t eat Tuna or any fatty fish - trying to avoid many vascular food as it brings on a flare.
I did try a gluten free diet and had a lot of stomach upset. Better to gradually transition to new diet rather than going cold turkey. also I believe it could take several effects to feel a difference.
I’ve found anything with a high amount of capsaicin is problematic. Capsaicin is the compound in chili peppers that give them their “heat.” Capsaicin is known to dilate blood vessels.
Conversely, despite being considered a spicy food, I can eat wasabi without issue. This is likely due to the fact the “hotness” in wasabi comes not from capsaicin, but allyl isothiocyanate.
I think any vascular food can be problematic - I can’t even use salt & pepper…One of my huge triggers is Tuna!
I have found all spices, some cheeses, salt, red meat, chocolate, all nightshades, vinegar. I have tried many diets and give them at least 4-6 months as one should. I am currently doing Paleo and gluten free if I cheat which I found even cheating isn’t worth it anymore. I can suggest making a food log in a notebook daily and rating your flares. I read that a food can react to you within 2 hours after you eat it and then it can reoccur at the 4th hour as well all over again which can make it tricky to see if it’s food.
Thank you @rayofhope
Now I am trying a low oxalate diet, my urologist put me on it. I wish I had done it gradually, but the doctor didn’t tell me that.
Apparently, if you do this suddenly, then the body decides it is a great time to get rid of the oxalate it has been putting into your cells as a way of dealing with high oxalate levels. And so then you get a whole lot of oxalate (the stuff that left your cells) now running around in your bloodstream. And you get sick. This process starts a few days or a week after starting the low oxalate diet.
As for me, after a week of great overall health improvement, my EM went totally nuts for a week and a half. That inner heat, fever-like stuff that my whole body deals with occasionally stepped up to high gear. And nothing helped. Tons of stomach pains, nausea, weakness, and overall misery too. And my feet were constantly on fire - and cold didn’t even help.
So I found a low oxalate support group and they explained the chemistry and what was going on, and what vitamins help. I took the vitamins that night and by the next morning had an 80% improvement in symptoms and heat. My stomach is gradually getting better, but the heat was back to my normal. My feet are back to normal also, which is not great but at least better than the previous week.
Because having a lot of oxalate in my blood stream (presumably) made my EM flare so terribly, I have a bit of hope that this low oxalate diet might help my EM once I have stabilized.
I will let you know. If any of you happened to decide to try it, go very slow when reducing oxalate in your diet so this process can be gradual and comfortable.
Update: it is now really, really helping my EM. I can walk again. And stand. For minutes and minutes, like a real person. And wear shoes for more than a few minutes. And go out in the sun and stand in the sunlight. My feet burns a little still, like 1st degree. Thats like only 10 or 20% of the previous pain level. Once before I had real burns on my hand, second and third degree, it was really awful looking. But the whole time, all I could think about was my feet.
If this continues, I might be able to work. Get a job. Have a life.
And I still cry each day that the fire stays away. But before, I never had good days any longer, let alone good weeks. And now I have and it is pretty obviously this diet. That is the only change other than time, and after 10 endless years and only progression of the disease, it seems clear as to the cause of the improvement.
Along those lines, right now, I am having a few days of what the low oxalate people call “dumping” and so I ate some higher oxalate foods to try and get back to a more gradual state of elimination, and now suddenly my feet are burning again.
Scientifically, if you withdraw a treatment and symptoms of the disease resume, this is significant and is evidence that the treatment is effective in the individual.
Presumeably, it will fade again when the oxalate levels out again. I really think the burning will go away again.
If it does, that will be even more evidence that it is the treatment, in this case, the diet, working.
And everything else is still getting better too. The doctors are astounded at the improvements. And so am I. Even though I really thought the entire thing would be yet another dud. I was like… “not ANOTHER stupid diet that won’t even help.” I’ve done them all: gluten free, grain free, paleo, rotation, etc.
I am so glad to have been wrong. And now I just want everyone else on here to get better. Put out all the fires. I don’t know if the low oxalate diet will help anyone else, but I myself would sure give it a try. Just remember to do it EXTREMELY gradually so you don’t end up really, really sick. My nephrologist had to send me straight to the ER because I was so sick.
But now I am almost one of those people who aren’t on fire all the time and I haven’t quite adjusted yet but I have enough evidence now to share it in more detail.
If you want more info or food charts, message me. And good luck everyone. Keep looking and trying even the stupid sounding things.
Sound very encouraging. I would love food charts. Thanks Joan
I am happy to share. If you look online, there is a lot of variation and rumor. Finally, I found some good charts, moved them into MS Excel, and then I took the data and put it into dense charts that are far easier to use once printed. So I have 4 pages instead of around 70 pages. And the excel one is easily searched. Also, my sources are attached at the bottom.
Do you have MS excel and MS word? If not, I can easily turn it into .pdf or .jpg
I would like to give you the source and my version.
Some very helpful reading about how to do the diet…
But first, remember, start VERY GRADUALLY. like cut down one high oxalate food per week or even every other week. Or, if you eat that food a lot, cut it down by half every other week. Because if you start dumping, you will be miserable before you get better. It took me about 4 months before my EM got so much better.
Also, vitamins help the process: vitamin B, magnesium, calcium. You take them when you eat and it helps bind to the bad stuff and take it out of your body. Also, The vitamin B helps your body deal with the stress. Oxidative stress or something like that. When I started dumping, the vitamins made me feel like myself again within 12 hours.
Anyways, some of the most helpful reading and sources:
Good introduction to the diet. Practical suggestions, And links to good charts:
Yahoo Support Group - Try Low Oxalates (a.k.a TLO) This group is the one that I found the info about the calcium, magnesium, and vitamin B that helped me so much through the transition when I got so sick from doing it too fast. Everyone is crazy about this yahoo group. Two websites.
User friendly article and overview of dumping and symptoms and why you feel bad sometimes even when eating this diet. Blog has recipes too:
Great article about how oxalate interacts in a vicious cycle with chronic conditions, aggravating many problems not caused by oxalate.
Items that are not on other charts, Cooking items and oils and flours, about being gluten free and low oxalate, flours vs starches, chocolate, cocoa butter, cinnamon:
Good charts with ranges (different varieties and grow conditions make more or less oxalate in different sweet potatoes, etc.)
Too scholarly for some, an article about the chemistry and many disease interactions. Suggested supplements. Yeast and fungal infections produce a whole lot of oxalate. Probiotics. However, might be selling supplements and could be less objective, but interesting biochemical info and the supplements mostly mirror what I have read elsewhere:
The above article’s supplement suggestions begin near the bottom, in the paragraph that starts like this:
"The most effective way to get rid of oxalates is the use of calcium citrate. This supplement exerts a double potency action in eliminating oxalate. The calcium part of calcium citrate binds to the oxalate and causes it to precipitate out in the stool so it will not be absorbed. But part of the oxalate escapes. The citrate is a second line of defense, which competes directly with the oxalate for absorption…
Many other supplements are then discussed. Mostly Interesting stuff.
Many labs run organic acid tests, or OAT tests, but this one also tests oxalate. However, if you are withholding oxalate in your cells instead of eliminating them in your urine, this test can be misleading because you would look ok when really you do have a problem. But it is info that some people use when deciding whether or not to try the diet.
Let me know what file formats work for you, and I will upload them or email them.
I would also love to get the food charts- PDF would be great. Thank you.
How is the low oxalate diet going? Has your progress been maintained? Did doctors provide any insight into why the diet would benefit your symptoms? What was your urologist’s reasoning for trying it? Is it treating any other underlying condition you have?
I’m sure users would love to hear more from you! Starting your own thread on this topic would be a great idea.