I'm sorry that this is an old thread but didn't want to start a new one...Organic Valley's cottage cheese contains gluten according to their website and so does their grated parmesan cheese of which I've bought 3 containers and used, aaargh! I don't know what I was thinking, I know to check every brand and every thing. I just thought it was the lactose thing. Just a reminder to all to be careful out there, it's like being in a land mine field.
I don't know why you haven't gotten a response before now, but I would like to make a small comment. Let me preface by saying that I am on this forum because mainly I am a celiac but don't have DH but psoriasis, just trying to find something to help that, my son though has skin issues like exzema but they are very strange and he has had skin issues all his life so this got my attention. When he was a baby he had that same rash although in baby books it was listed as a reaction to harsh soaps and just dry skin. Are we all sure of this? I don't know but I don't have any pictures of him to remember exactly what it looked like. I was diagnosed late late late and then my son went gluten free one year later at age 12 even though his blood work was technically negative. I put him on the diet because the numbers were not in my mind 100 percent negative. Well to make a long story short the transformation was almost a miracle. I did not know what my son could be. He was no longer irritable, he was becoming smarter, he had always had a speech impediment and that went away( took a while) and he got so much more energy. And he did not have vomiting spells which were so infrequent the pediatrician said he must be getting viruses. The rash on the older child looks to me like hives from a food allergy which as you know we are more prone to get. But I wanted to comment on the extended abdomen which is classic celiac symptoms in a child. His stomach should not protrude like that. I will sadly report that my son's excema hasn't cleared completely but he eats things that I don't, like Cheetos and other chips with MSG and things I wish he would not eat, not gluten because strangely when he went gluten free his reaction now to gluten is diarhea. Hope this helps and LOL not a short comment.
One more thing, I reread the original post and Castor you said that you are losing friends because of the way you talk about lyme and your problems and really not making sense. That sounds so much like me 3 years ago. There is so many similarities it's scary but anyway, I can't stress enough that you need to try eating gluten-free, my mind cleared up, it took a while but as my son said, "mom, it's like I was in a fog". He tested positive for lyme too by the way, but he's doing find now. He also had the problem with a temper, he never had any friends because he would just lose it so often, now he is so easygoing. Take care.
Hi Castor, checking back here on you, really concerned about you, I think that I have it correct that you did test negative for celiac? Well, from everything you have written eating gluten free is still a healthy choice because you sound like you may be allergic to a lot of things and it may be celiac anyway even though you tested negative, you could be iga negative (I think that is what it is called) but anyway it could be a false negative. You have to give the diet a pretty long time before you notice the changes, you are wanting to detox and if you have any gut permeability at all you won't be able to successfully do that. I went to a holistic doctor at first for my arthritis and she diagnosed me with lyme (through Boren) and started me on antibiotics, well I got worse over time, it wasn't until I was diagnosed a celiac and then ate gluten free that I got better, and then I took some more antibiotics and got better. I have heard from other lymies that they became celiacs or were celiacs before the lyme, it's kind of the chicken and the egg, what came first we don't know. Are you eating gluten-free now or just trying to eat healthier, also are you underweight or overweight? I was an overweight celiac, the doctors never considered that I was a celiac because I looked so healthy, ha ha, but I have lost a lot of weight and feel better now. Even as sick as I was my celiac panel came out low positive numbers, so I think that a new test or criteria needs to be developed to catch those before the damage is done.
Interesting, these are the kinds of stories that I search for, because they are my same experience. When I lived in Venezuela I always felt good, coming home to stay during the summer I would gain weight and was so lazy, I thought it was the junk food my grandmother would feed me. I moved back to the states and my weight continued to balloon and my health deteriorated, all the while I blamed myself and my lifestyle, after I got arthritis I had a "gauge" to tell me which foods would make me sick but I thought it was preservatives and soy. On a trip to Cancun, I got better, and had more energy, but the trip was only a week. I thought that maybe they had better vitamins in their fruit. I ate bread the whole time. Then I progressively got worse until a doctor finally diagnosed me with celiac disease. On a trip to Guatemala, a maid accidently put wheat flour in the chicken and rice but I didn't even get sick even though I ate a lot. I came home from there and took 2 bites of some steak at the church until I realized OMG it had gluten in it. I was sick all night and had to go for more antibiotics for my arthritis, it's almost 7 months later and I am just finally getting better. I'm telling you folks, there's something here, but how are we going to prove this. My heart hurts for the Americans that their health is in jeopardy. Does anyone know of a reason the wheat is different here? Is it the Genetically modified wheat that is the problem? But don't they grow that also in Central and South America?
You might be able to get a mix from Venezuela called P.A.N. I am in Texas and they sell it here, and I have tried it and had no problem with it. With this corn meal all you add is the salt and the water. Sorry I can't tell you how much of each, maybe 1 tsp. of salt to 2 1/2 cups of mix? But on the water it's a "touch and feel" thing. To make something that would be ok for sandwiches, shape them about an inch thick, arepas don't shrink much. You will probably want to bake them, I usually rub olive oil or corn oil all over them first. Or you can fry them which is a little trickier. Hmmm, I wonder if using chicken stock would be tastier. I think I will try that.
I know what you are going through....sort of...we are not in bankruptcy yet...but considering how the economy is going we may all end up like this. Well on a more positive note, I will tell you what helped me the most. Well if you can find a doctor willing to try you on doxycycline then go for it. I was on doxycycline for 6 months went into remission with my arthritis, muscle spasms, etc...people get different symptoms from lyme. But then I became allergic to all of the antibiotics INCLUDING all the antiinflamatories, gesh, well then I was forced to find a 'natural' remedy. I started with cats claw, kudzu, and turmeric tinctures, but you can find the pills at a health store, but I will cut to the chase, the thing that has helped me the most is hemp seed oil. I take it 2 times a day because I only eat 2 times a day. Oh, and the most important thing, you can't eat sugar, extremely low on carbs if at all, and I don't eat anything that is not a whole product, no preservatives (allergic) and well there's only about 20 things on my shopping list usually. I can't even eat milk products, so pretty much not much. LOL But hopefully you can find the hemp oil somewhere, I get mine at the Drug Emporium but they have all but shut down across the country. The oil was 10 dollars and it lasts me about a month. Not bad considering everything I have tried so far. Look on youtube there is a video about it, it's not the one that has THC in it, it won't make you high, but because of the genetic code or something if you have a drug test I think it shows up, you may want to think of that. It's like poppy seeds show up like cocaine, but anyway, the video on youtube is a lecture from a doctor and she outlines how beneficial hemp seed oil is compared to flax or fish, one thing that convinced me to try it was hemp has antiinflammatory properties and antifungal properties. Try to cheer up though, easier said than done, been there where you are, fought and fought for a diagnosis, never succeeded because I am in Texas where supposedly there is no lyme. Ha! Well you may never get a diagnosis and if you do, it will be very expensive. The natural cures are better anyway, if you can get a healthy body it can fight off the lyme. Remember they are researching the fact that there are a lot of park rangers who have lyme but never get sick from it, like being a carrier or something. So just concentrate on getting healthy, warning, may take a while but you will get there. Take care, keep posting, and God bless you.
Someone somewhere needs to get the word out that once you test positive for celiac disease it is "almost" too late to avoid getting other autoimmune diseases. For me, age 8, thyroid disease, 21, was carpal tunnel, psoriasis at 28, then finally arthritis at 42, but not before years of aches and pains. I am sure that I am not atypical of most who did not get diagnosed until a lot of damage. What I am also saying is if you have one autoimmune disease then I think the core problem is eating the gluten, I think it is fundamental to all autoimmune diseases. I think that testing for inflammation in the body would be very useful in preventing diseases. The gluten producing grains of today have been genetically modified, they are not natural, heck, even our corn's been modified, in my opinion you put something in your body that is not natural and voila it thinks there is a foreign invader, hence the inflammation, hence the diseases. Our food is the enemy, but with the large corporations running the show, I don't think there is a dang thing we can do about it. Oh and for those who have celiac and arthritis (even rheumatoid) there is hope, I went into remission after eating for 2 years gluten free and avoiding all of the foods that I had become allergic to, but got gluttened by mistake and went back into it, so must wait another 2 years I guess to go back into remission. Hopefully....
All of the suggestions have been great so far, you have to keep trying because there are always more than one reason for the joint pains. My joint pain was tremendously helped when I had to quit taking ibuprofen as I had become allergic. I thought my life was over, but after 2 days the pain just lifted. I was great until I accidently got some gluten at a church dinner, and now I am hurting again. I think that when you get glutened you just have to heal again. Watch what you eat; get plenty of omega 3; take probiotics; and eat things that you cook yourself, you should get better. Oh another thing, I have pain when I eat dairy, unfortunately. Hope this helps.