When Does It End

[gramma bea]

It seems I start a new food intolerance on a daily basis. Thats a exaggeration, but I get so frustrated sometimes. I was diagnosed with celiac disease 9/15/06 by blood test. I was on a strict gluten-free diet for a year, with very little improvement. Not much help from primary Dr at all. Decided to have stool test done by Enterolab. I found I didn't actually have the celiac gene, but had double genes for gluten sensitivity. After a year of no gluten, my Fecal Fat score was still 1226 units, normal being 300-. I was devasatated, as I was very dilligent on watching out for gluten in my diet, no restaurant eating, threw out all pans, spoons, spatula's, etc. No gluten in the house, fresh foods diet as basic. My anti-casein was also high 145 units, so I immediately cut out all dairy products. No butter, milk, yogurt, casein, etc, etc. Very limiting diet, to say the least. I switched to soy milk. A few weeks on that, and I started back with the unbalanced walking, bloating, etc, etc. Switched to almond milk, same scenario in a few weeks. At present time, my body won't tolerate gluten, dairy, bluberries, beans, tree nuts, soy, eggs, and God knows what else. I think now, rice is begining to bother me also. I'm begining to see the signs. Whats left?

Has anyone else had this problem, and where does it end? I know gluten is off limits for the rest of my life, no problem, I was handling that just fine, but the rest of this crap, is the pits. Enterolab told me that possibly the dairy products was also damaging my small intestine. I have been off from all dairy since 9/30/07, with very little improvement. I follow the diets very carefully, and never cheat. I am really discouraged at this point. I do believe that I had this for 13 years before diagnose. Maybe i'm a slow healer, or something. Does anyone else relate to these problems? If its " leaky gut ", as I suspician from reading the net, how do you recover? Thanks for any help.

[nmw]

I'm going through a very similar scenario, so I feel for you. Over a year gluten free then intols to corn, dairy, soy crop up. I had IgG testing for many foods and was found reactive to wheat, oats, casein, rice and yeast. My endoscopy showed minor damage - probably from casein. I've been free of all of these foods since 8/1/07, using probiotics and digestive enzymes (papin, bromelein) to heal my gut. I also rotate my foods so I don't develop new reactions. I severely restrict nightshades and eat almost no grains of any kind because they make me feel crappy. I tried dairy recently and that didn't go well. I'm going to be patient and wait several more months before testing anything else. I figure if I have to cut them all out forever, so be it. I wish I had more positive news, but I'm still learning to cope with so many limitations. I am hopeful for the future, though.

[gramma bea]

I'm going through a very similar scenario, so I feel for you. Over a year gluten free then intols to corn, dairy, soy crop up. I had IgG testing for many foods and was found reactive to wheat, oats, casein, rice and yeast. My endoscopy showed minor damage - probably from casein. I've been free of all of these foods since 8/1/07, using probiotics and digestive enzymes (papin, bromelein) to heal my gut. I also rotate my foods so I don't develop new reactions. I severely restrict nightshades and eat almost no grains of any kind because they make me feel crappy. I tried dairy recently and that didn't go well. I'm going to be patient and wait several more months before testing anything else. I figure if I have to cut them all out forever, so be it. I wish I had more positive news, but I'm still learning to cope with so many limitations. I am hopeful for the future, though.

Thank you for the response. I'm usually not a whiner, but yesterday just seemed to be overwhelming. I also have strong reactions to the night shades. two tiny new potatoes, makes my joints ache for days. I have completely gave them up also. The Dr's around here seem to be uneducated about celiac or food intolerances. I was sent for skin pricks, which showed absolutely no reactions at all, to anything, even when I knew dairy was a real problem for me. Now I understand that it is a gut thing, not skin allergies. So far, haven't found anyone that even knows what IgG testing is. Grains also seem to be bothering me, and I use rice milk for my gluten-free cereal in the mornings. I keep expecting to have to give that up anyday now. Makes breakfast very difficult, as I react to eggs also, Relying on fruit, for right now. I also do the papain, bromelin, in hopes of healing faster. I guess its just a " one day at a time ", thing. Sorry for the rant yesterday, I feel more confident today. Your response was a boost, and I wish you good luck and wellness.

[spunky]

I've been wondering the same thing! I was feeling really great at about 7 months gluten free, finally...then, seven months after that, the soy started...I had already been dairy free before that time.

THen other things started, one by one... now I'm at almost 2 years gluten free, and it seems my body is in some turbulent sensitivity to everything stage that's about to drive me nuts.

I don't know what to eat anymore!!! I've heard that sometimes this happens, and that it can be a temporary thing...so I'm hopeful that one of these days everything will settle down and I'll have the confidence to know I can eat some reliable variety of foods without difficulties...like you, gramma bea, I was okay with no gluten forever, but I don't feel that way about all the other stuff.

I'm thinking maybe quitting gluten at my age, 54, might make things a little bit wackier than if I'd stopped it at a younger age.

I'm just hopeful one of these days things will settle down and get better. It's been a real roller coaster for me.

[gramma bea]

I've been wondering the same thing! I was feeling really great at about 7 months gluten free, finally...then, seven months after that, the soy started...I had already been dairy free before that time.

THen other things started, one by one... now I'm at almost 2 years gluten free, and it seems my body is in some turbulent sensitivity to everything stage that's about to drive me nuts.

I don't know what to eat anymore!!! I've heard that sometimes this happens, and that it can be a temporary thing...so I'm hopeful that one of these days everything will settle down and I'll have the confidence to know I can eat some reliable variety of foods without difficulties...like you, gramma bea, I was okay with no gluten forever, but I don't feel that way about all the other stuff.

I'm thinking maybe quitting gluten at my age, 54, might make things a little bit wackier than if I'd stopped it at a younger age.

I'm just hopeful one of these days things will settle down and get better. It's been a real roller coaster for me.

I definately hear you Spunky. Its to the point, that I am afraid to put food in my mouth anymore, for fear of the reactions. I was hoping someone would answer, and say they had done the same thing, and was now back to just gluten intolerant. That would have given me some hope to hang on to. This seems to be a rather lonely ailment, as its hard for anyone not living it, to fully understand the limitations. I have a loving understanding family, but only my 25 year old grandson, that has the gluten intolerance also(thanks to inheriting from me ) fully understands. I just have to say thank God that he was caught young, and not at 70 years old like I am. So far, as long as he sticks to the diet, he has no other food problems or symptoms.

I'm leaning on that temporary thing also. I sure would hate to live the rest of my days with such food limitations. My body also seems to be in this big food struggle. Maybe we are nearing the end of the worst, and are starting to heal. Lets hope thats true, and it will give us something to hang onto.

[nmw]

It's nice to share the angst. It sure isn't easy eating so carefully, but I don't see that I have a choice. I never imagined that I would devote so much time, mental and physical energy (not to mention $) to managing my food and nutrition. Then again, I never knew how sick I could get from my food.

[gramma bea]

It's nice to share the angst. It sure isn't easy eating so carefully, but I don't see that I have a choice. I never imagined that I would devote so much time, mental and physical energy (not to mention $) to managing my food and nutrition. Then again, I never knew how sick I could get from my food.

Very well spoken. Its amazing to me, something that I have done for nearly 70 years(eating & cooking) without a whole lot of thought, has now consumed my whole thought process and life. "Grab a quick bite", is no longer in my vocabulary. As I see it, our choice is, to be dilligent as possible about our food, or suffer the consequences. I choose to be careful, very careful. I keep waiting to see the light at the end of the tunnel.

[Juliebove]

Unfortunately if you have food allergies, new ones can crop up any any time. This is why it's important to eat as varied a diet as possible. Not always possible to do that, I know. I have assorted medical problems which means some foods are off limits to me and I tend to eat the same things day after day. Luckily for me, gluten isn't a problem. It is for daughter though so I don't bring many gluten containing foods into the house. I mostly eat a gluten free diet with the occasional piece of bread or crackers. I have diabetes so I can't eat too many carbs.