This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Ok....here I sit with ten minutes to spare, so I decide to check in on my old friends here....o.m.g. this thread....Frenchmen's balls...Pleeting windows of opportunity...Dingo ...Mtndoggie...Patti...and even Judy..I am pshocked, yes pshocked and full of apallousness at the way you all have become so ....so......sigh...words fail me.
Dingo--your behavior reminds me of something...words to a song...I think by Johnny Rivers.....
Patti--flying by the seat of your pants, girlfriend...
Mtndoggie..omg...you Helles Belle wild thang...
and most of all ...Judy..omg...... and I thought you were an angel...Unbend that halo girlfriend!!!!
LOL LOL LOL
Just a drive by .... LOVE YOUSE GUYS!!!!!!!!!!!!!!!!!!!!!
GLULESS/AKA POSTER FORMERLY KNOWN AS ROBBIN
gluten-free since 2005 member since 2005
Low Oxalate 2007
formerly a complete mess..now a smaller mess, lol
I think the urine test is one of those that you save for a week in a jug, remember how fun the last one was for you? LOL.
I am one who is eagerly awaiting FDA approval for the o. formigenes. The longer I am on the LOD, the clearer it becomes to me that this is a very serious issue for me. If I even have a teeny bit of bell pepper, sweet pepper, or potatoes, the pain in my joints lets me know that I can't tolerate it even with the calcium citrate. The dumping episodes are becoming more of a pattern. One thing that I notice is that increased activity, with a lot of muscle use, seems to cause a sort of release in that muscle group sooner. For example, one day last week, I was using my hands a lot scraping a table I am refinishing, and that night I had extreme pain in that hand just like before with fibro, but the next morning, it was gone completely! It is almost like the activity, coupled with the LOD and the calcium citrate, is making it all looser and working its way out of the muscles and myofascia.
Regarding metals-if metals are the main problem, and you don't have a huge buildup of oxalates in your tissues and are not having chronic D from high oxalate foods, then that should be the focus of your treatments, but if you are like me and have FM and a severe intolerance of oxalate containing foods, then metals aren't your main issue--getting rid of the crystals that are filling your life with constant pain is the main issue. It becomes especially important to deal with oxalates first when you start to have liver, kidney, bladder, eye, or reproductive damage.
One real fear is more autoimmune diseases cropping up, which is what I am dealing with in the eyes-chronic uveitis, or sometimes called iritis.
I think we have just scratched the surface of the links with autoimmune disease and oxalates.
In a recent issue of National Geographic (this summer, I believe-will check if anyone is interested) the topic of metals, toxins, and the effects on our bodies was the focus --most Americans have metals of some kind in their tissues. It seems to me that the condition of your immune system and intestines would have a huge bearing on how they affect us individually. Getting the oxalates under control has made a huge difference not only in the way I look and feel, but also in my thinking and handling stress, so I am hoping to keep this momentum and continue to strengthen my immune system enough to then deal with whatever else is floating around in my body. The main thing is that brain fogginess is gone and that says a lot about what affect the oxalates are having--if you have this symptom, and you can suddenly think clearer and focus, then oxalates should be your main concern, Imho. Anything that attacks my nervous system in such a profound way can't be ignored. People joke about FM and celiac brain fog, but I sincerely believe it is something that potentially can lead to permanent damage of our nervous systems.
Keep strong friends and keep LO--we will get our o.formigenes back one day soon and when we do, I will be eating mashed potatoes with gravy every day, lol.
Judy-I still am convinced the urination is part of the oxalate problem. When I have the dumping episodes, I have to urinate constantly. I drink the same -at least 8 glasses of water-but go so much more frequently. I do notice a cyclic pattern to the dumping too, Patti.
catesfolly--Omg, I know EXACTLY what you mean about developing a tolerance to pain and illness-the euphoria you mentioned--that is a biggie for me too!! It is a strange feeling. Almost like not having a foothold in new territory. It is almost scary for me how weird it is to wake up and have a clear mind and not be in horrible pain.
Patti-I think we are all flying by the seat of our pants, lol. It sure helps to have company in the air though.
One thing I noticed is that it took about two months for me to have a consistently normal bowel routine. A bad thing that happened to me was a horrible pain in the gallbladder/liver area with yellow D for quite a few weeks. This went on for awhile off and on, until one night I had a severe spasm in my right side under the rib area and then tremendous relief. I am thinking I passed a gallstone--I am convinced as well, that this was an oxalate dump, however it was scary -BUT-- I have a huge fear/dislike for doctors and hospitals, so I stubbornly didn't go to the emergency room. I don't recommend this, lol. If I wouldn't have passed it, I would have gone since the pain was so severe. Thank God it stopped and the D is gone now. No more pain in that area either!
I really would like to keep my gallbladder, lol.
I cannot stress enough how important it is to drink plenty of water--filtered or spring water-not fluoridated. If I slack off on this, I get burning urination right away. If you have oxalate problems, you are at risk for kidney stones too, so keep the water going!!
Gotta go back to the grocery store--take care--love you all--Robbin
Yes!! I forgot to mention the skin thing! I had horrible hard calluses on my heels that are now softer and my skin is so much better and softer too! Another thing that I didn't mention on here is that my sense of touch in my fingertips is so much more sensitive too! Interesting.
Rachel, I am so impressed by how far you have come. How much of the lingering illnesses do you think is healing and how much do you think is something maybe still to be discovered? Do you take marine algae for the metals? I forget if you mentioned what you take for the chelating of them. If you don't see significant change, perhaps ask your doctor about the Ip6 w/inositol. The sinus/lymph node head symptoms are something I am wondering about since I have had chronic sinusitis, allergies and many infections since childhood too. Does your doctor think this is all from aspergillus? The yeast type "bugs" attach to oxalates, and that would explain why they stay in our bodies for long peroids of time. Perhaps this will be the key to finally getting rid of them.
A side note- storms make me feel so much worse and I am thinking that when nitrogen is released into the atmosphere from lightning and weather changes, that it causes the "nasty bugs" in our bodies to feed on it and reproduce faster. This is just one of my theories, though, so don't bank on it, lol.
Shin pain--Yikes, that is a bad one I experienced too, as well as most other body parts pain. It is different than the fibro pain which tends to be all over with one or two places like an elbow or toe hurting worse. The "dumping" pain tends to be very concentrated on one area with extreme pain for a couple of days and then suddenly gone and a relief of trigger/tender points afterwards. Strong smelling, almost chemical-like urine tends to go along with this. I get a burst of energy afterwards, but I just noticed this pattern lately.
The list of antibiotics that killed o. formigenes stuns me. My sons were both on most of those for ear infections, strep throat, bronchiitis, etc. at one time or another. My oldest had so many ear infections, he was on antibiotics almost continuously for the first five years of his life! The horrible thing is that he also was a soy milk baby. I really am convinced that this is why he has type I diabetes. My youngest has multiple allergies--the allergist had never seen so many allergies in one patient! He was breast fed too! I thought I was being a good mom and doing what was best for my kids, but I was killing them. It makes me so angry and so scared. Hopefully, the tide will turn in medicine and they will acknowledge more of the importance of taking care of the intestines.
I am probably fighting various yeasts, metals, and lyme along with the oxalate buildup, so I am trying to find something to take that is safe and effective at taking care of most of those problems at once. Not getting any younger and I am so fed up with being sick and tired, I just want to scream!
In regard to weight-I have been overweight since the illnesses all hit me, but have been losing mostly inches with some weight loss while on the LOD. Clothes that were too tight last Fall are now too big! What I thought was hard lumpy fat has gone--I am convinced this is oxalate build up since most of my body was painful to touch. I never knew actual "fat" fat was soft!! Mine was all hard and hurt like crazy! One side of my face --the cheek-was hard and actually thicker than the other side and one day after a bad headache the day before, I noticed that I had a dimple that had disappeared return! So weird! I look more and more like my old self again and it is freaking out my hubby, lol.
The Ip6 with inositol can be found at vitamin shoppe, but also any health food store or on the internet.
Patti- have you investigated the possibility that you may be sensitive to anachronic acid as well as oxalates? Egg yolks are high in anachronic acid and a lot of people have problems with that. It is in beef as well, I think. It would be worth googling to find a list of foods and see if there is any correlation with your diet.
Please keep this thread going guys-we are finally getting somewhere! Celiac seems to be just the beginning for some of us, doesn't it?
Judy--let us know how the caltrate works out for you!! xoxox
I was just reading about biotin and wondering if I am getting enough! I am a little behind on what has been covered, but it is extremely important to get enough potassium and B vitamins while you are on the low oxalate diet.
I have been very interested in a product/supplement called Ip6 with inositol. It is derived from rice bran, but from what I have been able to dig out of what is on the net, it does not contain oxalates, but it will deplete calcium and magnesium unless you take it on an empty stomach. It also BINDS oxalates! Besides the oxalate binding, another reason I am interested in this supplement is because of its powerful immune building properties in regard to bacteria and pathogens and its chelating properties in regard to metals. I understand it is being given as an adjunct supplement to cancer patients and has been found to actually halt cancer cells from replicating. Anyone know about this or taking it?
I bought some, but haven't started it yet, but am desperate to try to get this whole process accelerated because of the problems with my eyesight. It isn't too expensive, and it is gluten free, soy free, yeast free, dairy free.
Hi Everyone! Yep, the nightshades are a problem for some in regard to other chemical properties they have, but they are high oxalates too, so if you cut them out and still have problems with other oxalate foods, then you can probably say with a degree of certainty that it is oxalates giving you the "business".
I think I may be in a "dumping mode" tonight. I had a little ankle twist over the cat the other day and the next day my back started hurting badly and I thought I was just walking a little wonky from the sore ankle, but now the foot is swollen, and the back is WORSE with burning urination now, so I think I am shedding more of the nasty things. Guzzling water and eating bananas, as usual, LOL.
As for the tea, I know some lists are a little confusing about them. The most current list (I forget which website--JUDY Help!!) that I know of says that oolong tea is ok. It is very good and tastes like regular plain tea. I made suntea with it and it was delicious. Still missing coffee so much though
If you focus on meats, white rice, white rice bread, allowed fruits and veggies and TRY TO FORGET THERE ARE OTHER FOODS OUT THERE, it is much easier than you think, lol. I am TRYING to forget chocolate ever existed......
This thread is so helpful, thank you again Patti!!!!! Welcome to wonderful San!!!!
Hi Everyone! I have to agree on the problems with the yahoo site--the most I do on that site is sort through the information and find out what I can about the whole process and hope to learn more about the availability of the o.formigenes-(Looks like it will be a long wait on that one...
RACHEL!! SO HAPPY TO "SEE" YOU!!
Catesfolly--I don't remember where I read this, or if this is accurate, BUT--check out Lexapro--I THINK it may be a high oxalate drug. Not sure about that.
One new bit of information I found is that a biotin deficiency will worsen an oxalate problem. The whole explanation about this is a complicated one, but a biotin deficiency will apparently make a person much more sensitive to oxalates. Omg, yet another thing to consider.
I did notice that I cannot tolerate any kind of tablet type vitamin. I tried caltrate tabs with vitamin D over the weekend, and got hit with D and joint pain--I felt almost myself today after getting some more of the calcium citrate with magnesium capsules, so I really think for me, the tablets are not digested well. In case this helps someone else, I am putting that out there.
I will list some of the improvements I have happen since starting this in June: (Bear in mind that I have had Fibromyalgia along with celiac for years-- Eyes wetter, D improved, joint pain improved, trigger points from Fibromyalgia improved, horrible rib pain gone, fibrocystic breast disease completely gone-the pain had gotten better from that going gluten free, but was still off and on sore and still had lumps. Heel pain that felt sharp and very painful especially in the mornings gone, hard tissue in lumps on legs gone. I had little white bumps under the skin on my face for years that are now gone. Fingernails stronger, sense of touch more sensitive--(I had very little sensation in my fingertips for a long time.) Sharp needle-like shooting pains have gone so far. Hopefully for good.
I have noticed that white powdery/grainy stuff on my skin too! The inside of my mouth actually peels some days too.
I have yet to have a good strong indication that my eyes are improving, but I am hopeful. I still have a lot of fatigue and back pain, but I really am improving in a lot of ways. The most important thing is that horrible brain fog is lifted.
I eat extremely low oxalates, mostly meats, rice, eggs, very low oxalate fruits and veggies. My "treat" is one cup of coffee in the morning. I also eat two bananas a day (yuck I hate them, lol) for the potassium and other vitamins.
I am going to look into the biotin connection more closely and if anyone knows about this, let me know. I will be the guinea pig, if not, lol.
(my journal with updates on what I am doing is August 17 in DailyStrength, btw)
Love you guys!! Robbin
This brings up a good point--how many of us women have had a hysterectomy due to endometriosis or fibroid tumors? I wonder what role oxalates play in the formation of the abnormal tissue?? The problem with the tissue cultures that are normally studied after biopsies is that a normal biopsy is not done under a polarized light (from what I understand about the process, correct me if I am wrong, any histologists or lab path. people!!) An oxalate crystal formation will not show up under normal light conditions.
I forgot to mention the role of leaky gut-which I guess you all have gathered that the lining of the intestine is thinned and permeated by the celiac or other condition and oxalates damage further and circulate throughout the body.
One thing that I also take once a week is red marine algae tabs --this is widely used in other countries to bind with toxic metals and allow them to be eliminated through urine and bowels. Once you release the oxalates that are in your tissue, the metals and bacteria that are bound to them COULD be released from their oxalate bound sites where they have been residing and causing us untold misery! (not sure if calcium citrate keeps them attached to the crystals and then they are eliminated along with the crystals or not, still looking into this aspect of it all.)
Vitamin B6 is another very important aspect of the process in binding oxalates and healing. I have been trying to avoid my multivitamins, limit unnecessary supplements as much as possible, and eat as much B vitamin rich foods as possible since my digestion is still on shaky ground and I don't want to rock the boat at this point when I am getting so much better. So far this is working for me, but others may need to take more vitamin/supplements to help with their symptoms.
I read that the bacterium that digests oxalates, o.formigenes also produces a substance/enzyme that is very important in muscle health and process and that with a depletion of the o.formigenes, the important enzyme is also depleted. This would explain the fatigue and muscle weakness that so many of us have as well.
I forgot to add this--drink lots of water if you are going low oxalate-this is very important! Eight to ten glasses a day. The excess oxalates are shed in urine, through skin, eyes, & bowels. One thing I would advise based on my own experience is to try to get as much of your nutrients from food as possible. I eat two bananas every day to keep potassium levels normal and eat low fat to keep liver and gallbladder problems at bay as well. I also take a probiotic and once a week oil of oregano and milk thistle (with a calcium citrate cap since milk thistle is high oxalate, but really beneficial for the liver functioning). All of these I take with food. I would encourage anyone trying this to eat lots of the veggies on the low oxalate list and include lots of melons like honeydew and cantaloupe for the B vitamins. Hope this helps someone else, because I feel like a living miracle myself and want to tell the world, lol.
THANK YOU JERSEYANGEL!!! This is a topic I have been researching for a few months and put myself on the low oxalate diet after doing an "experiment" with an oxalate overload and feeling like death afterwards. I have had fibromyalgia for a long, long time as well as celiac/gluten intolerance and I just wasn't getting relief with the pain and intermittent D. I joined that yahoo group, too and was the one that got the response regarding milk thistle!!!
What I have experienced is nothing short of AMAZING!! I have had shedding of oxalates consistently since starting this diet in June. Foot pain that felt like walking on glass is gone, rib pain and fibrocystic breast pain is gone, hard layers of lumpy tissue is gone, painful lumps on legs are gone and even my face looks different because the hard tissue in the cheeks has gone and I am looking like myself again!! With each "dumping" of oxalate episode, I get tremendous pain in an area and extreme exhaustion and then after a day or so, a new and wonderful relief and improvement!
I take Vitamin Shoppe brand calcium citrate with magnesium -two capsules with each meal-each capsule has 333mg calcium citrate and 189 mg. magnesium.
From what I have learned, oxalates are normally digested by a good bacterium in our intestines called oxac. formigenes, and this good bacteria can be destroyed by antibiotics, perhaps vaccines, or long term intestinal illness. Once the bacteria is gone, you cannot digest oxalates normally and they cause a condition called enteric hyperoxalosis, which is a known condition by urologists and some of the more learned gastroenterologists. The oxalates form crystals which are attracted to tissue that has been damaged by injury or illness. Organs, muscles, even bone. Bacteria, such as lyme, or candida and metals bind with the oxalates. Excess vitamin C can be converted to oxalates in the liver. Oxalate crystals are in cataracts, thyroid, kidney stones, gallstones, and also are always present along breast cancer cells. Fibrous tumors of all kinds can contain them.
The probiotic O.formigenes is the only one I couldn't find in the health food stores BECAUSE it is now patented and being produced as a PRESCRIBED drug for treatment of kidney stones. Some good probiotics can help some, but the best and only way to control excess oxalates once you lose the "good bacteria" is avoidance of the high oxalate foods.
Google ENTERIC HYPEROXALURIA and illnesses like thyroid and oxalates, or gallbladder and oxalates, or celiac and oxalates and you will be AMAZED at the studies and information. I really feel that it is what is known as FIBROMYALGIA and IBS, but that is only my UNDOCTOR opinion. My results speak for themselves to me!!!
Hi--I was where you are not too long ago and had to pull myself together and attack this whole thing like I was fighting a battle--and it is a war, I know. Start from the beginning, keep a food journal and go to basics like white rice, bananas, plain meats. As you add new foods, wait a few days, record your symptoms, and you will find what is giving you problems. Get a good probiotic that is gluten-free,sf,df and take it every day. There is HOPE--don't give up! It is worth the effort for the reward of feeling good! Check out the thread "Potatoes are the problem" too, and see if maybe there are any problems you have with the nightshades or high oxalate foods. Keep strong and take care. Robbin