Wondering What To Do

[Midoriliem]

I have not been diagnosed with celiac but instead with "gluten sensitivity" and "gluten-induced malabsorption in the small intestine"...it's a long story, but I feel that this might be relevant. I tested negative for celiac (using only the IgA and IgG tests) but I was on a gluten-free diet. I was diagnosed with carb and fat malabsorption.

Here's my problem: this August, I trialed a gluten-free diet and had great results within a week. My constant diarrhea cleared up. Then I went back on a gluten-containing diet and the problems resumed...I had a second gluten-free trial in September and the same thing happened, though it took longer.

The problem: I have not have great results like that since those trials!

I went gluten-free for good in October and the only time I consistently had no disrrhea was when I went home to the US for vacation- I live in Romania. During my vacation I ate "what I wanted" and didn't worry about the high-fat diet I have been prescribed, including lots of nuts and seeds.

So my question is this: Why can't I replicate the original results I had when I first went gluten-free? The only thing I can think of in common with my first gluten-free trial and my vacation at home is that I didn't eat nuts in either (but I did eat fish, corn, soy, eggs, milk, and at the very end some peanuts). I ate a few nuts in my second gluten-free trial, but I had digestive enzymes then. Is this just fat intolerance and if so, what do I do? I have noticed floating stool and oily bits in the toilet water.

Can nuts cause gluten-like reactions? Am I barking up the wrong tree entirely with a gluten-free diet? My digestion has been improving slowly, and I feel better overall. When I ate bread to try it out, to test my reaction, I got very sick.

I cut out all nuts yesterday and today I had worse GI symptoms than before!

I have been keeping a food diary and sometimes I have good results after eating nuts and sometimes I don't...

How long does it take to get better and why would I have gotten such clear results before and don't have them now? This is so frustrating because I saw good results before! I have had a lot of mistakes due to labelling and language problems- my native language is English, not Romanian.

Thanks for reading all of this!

[debmidge]

I have not been diagnosed with celiac but instead with "gluten sensitivity" and "gluten-induced malabsorption in the small intestine"...it's a long story, but I feel that this might be relevant. I tested negative for celiac (using only the IgA and IgG tests) but I was on a gluten-free diet. I was diagnosed with carb and fat malabsorption.

Here's my problem: this August, I trialed a gluten-free diet and had great results within a week. My constant diarrhea cleared up. Then I went back on a gluten-containing diet and the problems resumed...I had a second gluten-free trial in September and the same thing happened, though it took longer.

The problem: I have not have great results like that since those trials!

I went gluten-free for good in October and the only time I consistently had no disrrhea was when I went home to the US for vacation- I live in Romania. During my vacation I ate "what I wanted" and didn't worry about the high-fat diet I have been prescribed, including lots of nuts and seeds.

So my question is this: Why can't I replicate the original results I had when I first went gluten-free? The only thing I can think of in common with my first gluten-free trial and my vacation at home is that I didn't eat nuts in either (but I did eat fish, corn, soy, eggs, milk, and at the very end some peanuts). I ate a few nuts in my second gluten-free trial, but I had digestive enzymes then. Is this just fat intolerance and if so, what do I do? I have noticed floating stool and oily bits in the toilet water.

Can nuts cause gluten-like reactions? Am I barking up the wrong tree entirely with a gluten-free diet? My digestion has been improving slowly, and I feel better overall. When I ate bread to try it out, to test my reaction, I got very sick.

I cut out all nuts yesterday and today I had worse GI symptoms than before!

I have been keeping a food diary and sometimes I have good results after eating nuts and sometimes I don't...

How long does it take to get better and why would I have gotten such clear results before and don't have them now? This is so frustrating because I saw good results before! I have had a lot of mistakes due to labelling and language problems- my native language is English, not Romanian.

Thanks for reading all of this!

I have no real answers but one or two questions which could help in getting an "unqualified" answer..

1) How long were you ill before you were diagnosed?

2) How long after eating gluten are you having celiac symptoms?

3) How long after eating nuts are you having gastro sympoms?

My husband cannot eat nuts at all...they don't digest well. So he avoids them now.

D.

[digmom1014]

In my OPINION, I feel like my gluten sensitivity is like yo-yo dieting. Before I decided to go gluten-free competely over a year ago, I too tested myself a few times. With yo-yo dieting the weight comes off slower each time. When you backslide after a diet, you gain just a little more weight then the last time you dieted. It also takes longer to come off the next time you try to lose weight. I think your just messing with your metabolism each time and your body takes longer to adjust.

By going on and off the diet so many times, maybe your body needs time to adjust? Once it realizes that you are not going to throw it into another spin with gluten, it will have a chance to heal.

Certain nuts bother me, seeds do not. Are you keeping track of which nuts are bothering you?

If I took the blood panel again, I would eat gluten for about 3 weeks solid b-4 I took the test. That way you can leave no doubt in your own mind.

[Midoriliem]

I have no real answers but one or two questions which could help in getting an "unqualified" answer..

1) How long were you ill before you were diagnosed?

2) How long after eating gluten are you having celiac symptoms?

3) How long after eating nuts are you having gastro sympoms?

My husband cannot eat nuts at all...they don't digest well. So he avoids them now.

D.

1. I would say I began losing weight a year and a half before I was diagnosed...I became severely lactose intolerant about 9 mos before that.

2. It depends- fatigue, "cold" type symptoms- within a few hours...diarrhea and bloating within a day or two, usually about 12 hours or less.

3. I can't pin that down because until now I was eating them all the time, several times a day.

[Midoriliem]

In my OPINION, I feel like my gluten sensitivity is like yo-yo dieting. Before I decided to go gluten-free competely over a year ago, I too tested myself a few times. With yo-yo dieting the weight comes off slower each time. When you backslide after a diet, you gain just a little more weight then the last time you dieted. It also takes longer to come off the next time you try to lose weight. I think your just messing with your metabolism each time and your body takes longer to adjust.

By going on and off the diet so many times, maybe your body needs time to adjust? Once it realizes that you are not going to throw it into another spin with gluten, it will have a chance to heal.

Certain nuts bother me, seeds do not. Are you keeping track of which nuts are bothering you?

If I took the blood panel again, I would eat gluten for about 3 weeks solid b-4 I took the test. That way you can leave no doubt in your own mind.

As much as I would like to have doubt, I don't really. I straight up asked my doctor: "Is this all in my head?" to which he said no. He then told me in no uncertain terms that if I continued to eat gluten, I would continue to have malabsorption, complete with the vitamin deficiencies, very low blood sugar, and all that other fun stuff.

[Midoriliem]

In my OPINION, I feel like my gluten sensitivity is like yo-yo dieting. Before I decided to go gluten-free competely over a year ago, I too tested myself a few times. With yo-yo dieting the weight comes off slower each time. When you backslide after a diet, you gain just a little more weight then the last time you dieted. It also takes longer to come off the next time you try to lose weight. I think your just messing with your metabolism each time and your body takes longer to adjust.

By going on and off the diet so many times, maybe your body needs time to adjust? Once it realizes that you are not going to throw it into another spin with gluten, it will have a chance to heal.

Certain nuts bother me, seeds do not. Are you keeping track of which nuts are bothering you?

If I took the blood panel again, I would eat gluten for about 3 weeks solid b-4 I took the test. That way you can leave no doubt in your own mind.

And no, I don't keep track. I was going to cut out all nuts and seeds and then add them back one at a time.

[chatycady]

Many of us with celiac or gluten intolerance have trouble digesting carbs. Nuts can be tricky as many nuts are coated with starch. Which a damaged intestine can't digest. You indicated that you are lactose intolerant that is a sign things are not working well.

If you're not getting better you may want to check out the Specific Carbohydrate Diet under the leaky gut forum. It's helped many of us celiacs and gluten intolerant folks.

[Midoriliem]

Many of us with celiac or gluten intolerance have trouble digesting carbs. Nuts can be tricky as many nuts are coated with starch. Which a damaged intestine can't digest. You indicated that you are lactose intolerant that is a sign things are not working well.

If you're not getting better you may want to check out the Specific Carbohydrate Diet under the leaky gut forum. It's helped many of us celiacs and gluten intolerant folks.

How hard would that be as a vegetarian? I eat fish, but would canned fish work?

[ravenwoodglass]

How hard would that be as a vegetarian?

Many on a vegetarian diet eat a lot of soy. Do you? It is not unusual for some of us to also be intolerant to soy. Soy was for me the cause of a lot of gluten like symptoms for a few years after diagnosis.

[Midoriliem]

Many on a vegetarian diet eat a lot of soy. Do you? It is not unusual for some of us to also be intolerant to soy. Soy was for me the cause of a lot of gluten like symptoms for a few years after diagnosis.

I actually don't eat soy, just because the soy products where I live aren't that great. (I'm in Romania.) However, it is in everything processed, but I don't think those levels bother me. The only processed thing I eat, really, is chocolate, and only chocolate I have been told is gluten-free by the manufacturers.

[chasbari]

Lots of tuna fish packed in water actually uses soy in the processing. You might want to avoid it if not sure and go with fish you know doesn't contain it. Many nuts, especially not raw ones, are roasted in peanut oil and if you are having problems with peanuts which are a legume this might also be why they are problematic. I know that I was beginning to feel "less worse" when I finally went gluten free but it was not until I went strict paleo diet that I began to have many more good days than bad and I am relatively new to this with lots of malabsorption issues as well as gluten damage to the gut. I definitely go through my bad spells. Three great days followed by plenty of pain and discomfort today. I think it must be, in part, to my gut coming back alive. I went from chronic bloated numbness for years to being able to feel everything that is going on and that can be disconcerting at times.

Good luck.

Chuck

[Midoriliem]

Lots of tuna fish packed in water actually uses soy in the processing. You might want to avoid it if not sure and go with fish you know doesn't contain it. Many nuts, especially not raw ones, are roasted in peanut oil and if you are having problems with peanuts which are a legume this might also be why they are problematic. I know that I was beginning to feel "less worse" when I finally went gluten free but it was not until I went strict paleo diet that I began to have many more good days than bad and I am relatively new to this with lots of malabsorption issues as well as gluten damage to the gut. I definitely go through my bad spells. Three great days followed by plenty of pain and discomfort today. I think it must be, in part, to my gut coming back alive. I went from chronic bloated numbness for years to being able to feel everything that is going on and that can be disconcerting at times.

Good luck.

Chuck

I specifically got fish that was labeled "tuna, water, salt." I don't think I have problems with legumes- I eat a lot of them. I honestly think a lot of this is my expectations- when I went on my first gluten-free trial any difference seemed miraculous. I also think that I can tolerate some nuts, so that might just be the fat aspect for right now and not the nuts themselves. For instance, I seemed to tolerate nuts during my second gluten-free trial but I had enzymes.

Anyway, back to expectations- I no longer live on Pepto-Bismol and cold medication. I no longer fall asleeo at 8 p.m., and I no longer run to the restroom between classes.

Who knows?

[Fiddle-Faddle]

I have a friend whose 5-year-old son had issues that she finally figured out were gluten-related. Unfortunately, after she took him back to the doctor to show the stupid doc how ALL of the serious issues were resolved after the gluten-free diet, the stupid doc wanted to put him back on gluten to do a biopsy.

All the issues came back (no big surprise), but after going off gluten a second time, they did NOT resolve. They improved somewhat, but nothing close to the first time. He also began to react to all sorts of foods he hadn't reacted to the first time.

I suspect that there's a subset of celiacs who become damaged in this specific, different way than most, and it's much, much more difficult to recover from that second damage.

I wish I could explain why, but can't. Maybe someone else here can come up with something.

[Midoriliem]

I have a friend whose 5-year-old son had issues that she finally figured out were gluten-related. Unfortunately, after she took him back to the doctor to show the stupid doc how ALL of the serious issues were resolved after the gluten-free diet, the stupid doc wanted to put him back on gluten to do a biopsy.

All the issues came back (no big surprise), but after going off gluten a second time, they did NOT resolve. They improved somewhat, but nothing close to the first time. He also began to react to all sorts of foods he hadn't reacted to the first time.

I suspect that there's a subset of celiacs who become damaged in this specific, different way than most, and it's much, much more difficult to recover from that second damage.

I wish I could explain why, but can't. Maybe someone else here can come up with something.

I was back on gluten for about two weeks. But as long as it is possible to recover, that's fine.