Getting Very Discouraged!

[susiequsie]

I determined about a year or so ago that I was having food sensitivity issues after having researched and read a lot. I had had a colon resection 2 years ago and then, after about a year, began having horrible gas and some bouts of diarrhea. I narrowed it down to gluten and began the process of eliminating it over a couple of months. Did very well for a number of months.

Then, in the past 3 months, I've determined that milk was again causing my symptoms and have eliminated dairy from my diet. Did pretty well for a while. Now, I am suspecting nuts and have begun eliminating them, too.

Now, that I've gone to soy products, (cheeses, milk, etc.) I've begun to wonder about that too. I'm still experiencing the gas and diarrhea episodes--no pain, no blood.

I cook pretty much everything from whole foods, do not eat out, and do not eat any processed foods. I try to be very mindful of cc since my husband and mother are here too. My husband is a huge eater and I can't use all the gluten-free substitutions for all of us, since they are so expensive. Mother is 89 and uses lots of butter, gravies, creamy stuff so that the food is easier to swallow.

I've been tested recently for gluten and it was negative. I know also that the blood test is highly unreliable and inaccurate. I don't feel that I need an 'official diagnosis, - my response tells me all I really need to know. I've also checked all my meds for gluten and they are fine. I thought I had this thing licked pretty much--when will I find it all?

[mushroom]

I determined about a year or so ago that I was having food sensitivity issues after having researched and read a lot. I had had a colon resection 2 years ago and then, after about a year, began having horrible gas and some bouts of diarrhea. I narrowed it down to gluten and began the process of eliminating it over a couple of months. Did very well for a number of months.

Then, in the past 3 months, I've determined that milk was again causing my symptoms and have eliminated dairy from my diet. Did pretty well for a while. Now, I am suspecting nuts and have begun eliminating them, too.

Now, that I've gone to soy products, (cheeses, milk, etc.) I've begun to wonder about that too. I'm still experiencing the gas and diarrhea episodes--no pain, no blood.

I cook pretty much everything from whole foods, do not eat out, and do not eat any processed foods. I try to be very mindful of cc since my husband and mother are here too. My husband is a huge eater and I can't use all the gluten-free substitutions for all of us, since they are so expensive. Mother is 89 and uses lots of butter, gravies, creamy stuff so that the food is easier to swallow.

I've been tested recently for gluten and it was negative. I know also that the blood test is highly unreliable and inaccurate. I don't feel that I need an 'official diagnosis, - my response tells me all I really need to know. I've also checked all my meds for gluten and they are fine. I thought I had this thing licked pretty much--when will I find it all?

As a long-term member and gluten-free eater, you would of course have expected the celiac test to be negative. If you are absolutely sure there is no cc going on (and I just discovered it can be tricky; had a gluten eater guest in the house over Easter and she ate four slices of gluten bread she brought with her--my Dh and I ended up with diarrhea for a couple of days, something I have not had in at least 8 months), then I make the following suggestion, again from personal experience.

When we give up gluten, we start eating more of something else instead, we give that up and our consumption of something else increases, give that up and ditto. I think the key to the whole thing is to avoid eating too much of any one thing, i.e., eat as varied a diet as possible. For fruit, e.g., don't just eat apples and bananas, but intersperse with berries, Kiwi, grapes, anything you can tolerate. Same with alternative grains if you eat them. Same with even veggies, especially nightshades. Vary the nuts you eat every day. You get the idea.

As for the milk, are you sure it is dairy totally or just lactose that bothers you? If you can tolerate casein, it is my personal belief that you are a lot better of with dairy than soy (well, yes, I have a *thing* about soy I must admit), suffered horribly from it after going gluten free).

Anyway, just "food" for thought. I have no idea if any of this applies to you. These intolerances are so frustrating to track down. By the way, have you ever had an endoscopy to rule out something else?

Good luck on finding the culprit(s).

[susiequsie]

As a long-term member and gluten-free eater, you would of course have expected the celiac test to be negative. If you are absolutely sure there is no cc going on (and I just discovered it can be tricky; had a gluten eater guest in the house over Easter and she ate four slices of gluten bread she brought with her--my Dh and I ended up with diarrhea for a couple of days, something I have not had in at least 8 months), then I make the following suggestion, again from personal experience.

When we give up gluten, we start eating more of something else instead, we give that up and our consumption of something else increases, give that up and ditto. I think the key to the whole thing is to avoid eating too much of any one thing, i.e., eat as varied a diet as possible. For fruit, e.g., don't just eat apples and bananas, but intersperse with berries, Kiwi, grapes, anything you can tolerate. Same with alternative grains if you eat them. Same with even veggies, especially nightshades. Vary the nuts you eat every day. You get the idea.

As for the milk, are you sure it is dairy totally or just lactose that bothers you? If you can tolerate casein, it is my personal belief that you are a lot better of with dairy than soy (well, yes, I have a *thing* about soy I must admit), suffered horribly from it after going gluten free).

Anyway, just "food" for thought. I have no idea if any of this applies to you. These intolerances are so frustrating to track down. By the way, have you ever had an endoscopy to rule out something else?

Good luck on finding the culprit(s).

Thanks, Mushroom, for your thoughts. Well, I THINK I'm pretty aware of cc, but perhaps after your experience, I'm not as much as I might think. I have my own toaster and try to watch pans and utensils.

I liked your idea of varying the foods within the food groups. I only use one bread (I make the Bob's Mills gluten-free Hearty Whole Grain bread) and tend to eat a lot of it since it appears to be safe for me and it's easy to grab when I don't have anything else fixed. I did make a loaf of Gluten Pantry's white bread last week and ended up with diarrhea--has milk in it, I discovered. I don't know whether it is casein or lactose that bothers me, but I avoid it all.

No, I haven't had an endoscopy recently. What might that show up if it's not intolerances? I know I responded well to the gluten-free diet for at least 6 months before other things began surfacing.

[mushroom]

My question was if you had ever had an endoscopy, not have you had a recent one. If you previously responded well to the diet, and had an endoscopy at the time of diagnosis, it would seem to indicate that it is something you are currently ingesting IMHO.

[chatycady]

Have your read much about celiac disease and leaky gut? Could you have a leaky gut?

Your diet may truly be gluten free, but other foods are not being properly digested and undigested food and toxins leak into the blood stream causing all sorts of problems and symptoms.

Just a thought.

[Takala]

Agree with ditching the soy substitutes and trying to go to lactose free dairy like hard aged cheeses and gluten-free safe yogurt.

For the nuts, try ditching cashews. I thought I had a peanut problem for years, no, I just had a peanut butter additive problem and can now eat at least one brand of peanut butter marked "gluten free" on the label. Ingredients: peanuts, salt. That's it. Almonds are a staple for me.

I am not as sensitive as some and even I am surprised at how prevalent cross contamination is, either in some food that is "supposed" to be safe, or by accident, such as from cosmetics, clueless restaurants, spouses (and my spouse is very conscientious ) or pets.

[susiequsie]

Have your read much about celiac disease and leaky gut? Could you have a leaky gut?

Your diet may truly be gluten free, but other foods are not being properly digested and undigested food and toxins leak into the blood stream causing all sorts of problems and symptoms.

Just a thought.

Thanks for your thought. No, I have not read about leaky gut....guess I'll have to take a look at it. I've heard the name, but did not know much about it.

Appreciate your help.

[susiequsie]

Agree with ditching the soy substitutes and trying to go to lactose free dairy like hard aged cheeses and gluten-free safe yogurt.

For the nuts, try ditching cashews. I thought I had a peanut problem for years, no, I just had a peanut butter additive problem and can now eat at least one brand of peanut butter marked "gluten free" on the label. Ingredients: peanuts, salt. That's it. Almonds are a staple for me.

I am not as sensitive as some and even I am surprised at how prevalent cross contamination is, either in some food that is "supposed" to be safe, or by accident, such as from cosmetics, clueless restaurants, spouses (and my spouse is very conscientious ) or pets.

I want to be really sure about the yogurt before I ditch it. I am very sure of gluten and milk/dairy. I've bought soy cheeses, cream cheese , yogurt, and milk & need to try it again so I can be sure.

As for the nuts, I noticed that cashews, in particular, were causing me problems and also wondered about almonds, too. My peanut butter is Smucker's Natural with only peanuts and salt as ingredients.

I guess you can never be too careful with cc. I can see where I should improve. Thanks for all of your ideas and help.

[LandonL]

Thanks for your thought. No, I have not read about leaky gut....guess I'll have to take a look at it. I've heard the name, but did not know much about it.

Appreciate your help.

how do you find out if you have leaky gut, and what do you do about it if you do?