gluten-free Diet Helps, But Symptoms Still Present

[luciddream928]

I just had a colonoscopy/endo and 2 biopsies and as far as I know everything came back normal. Not too much of a surprise since I've been gluten-free for about 6 months. I am still having symptoms, though, and the Dr. is leaning toward an IBS diagnosis. I hate to be a pessimist but I emphasize the "BS" in IBS.

I have an appointment with an acupuncturist on Monday and with an allergist at the end of the month. Has anyone noticed a difference with acupuncture? I am also trying to incorporate more movement and exercise in my diet (I'm guilty of laziness when it's too cold to walk outside) and have taken to doing yoga indoors in lieu of my daily walks.

I notice that when I eat too much corn I get sick, or too much fat. Not sure what to do at this point. Any suggestions/experience is appreciated!

Rachel

[IChaseFrisbees]

I remember hearing somewhere (I want to say from one of the trillion docs I went to see) that IBS is a "throwaway" diagnosis; that is, if they can't figure out the cause of the symptoms for another condition than they just assume you have IBS, which is actually a description of symptoms more than a real syndrome.

If you can't figure out what the other problem is, I recommend starting a food diary. Just keep track of everything that goes in your mouth and how i makes you feel, and maybe try to separate your foods a little bit? That is, don't always have a meal that has rice, meat, fruit and some form of carbs like rice all at once.

I had a busy day where all I managed to eat was chicken and water, and I felt the best I had felt in a long time that day, so I kept up with a food diary and stopped eating carbohydrates in the form of rice, potatoes/sweet potatoes, corn etc., and I've felt LOADS better since then.

Not saying that's your problem, but a lot of people on here have problems with nightshades, soy, corn, dairy/casein, you name it. If you split up your foods a little bit and see how each one individually affects you maybe it'll help you get to the bottom of it?

And finally I know sometimes the food diary can be very frustrating because you want to know why you're being bothered. For the longest time I refused to do one (ignorance/stubbornness on my part) because I would say "I don't just want to know what bothers me and avoid it, I want to know WHY it bothers me! There must be a test or a reason!!" After I went carb free and it started helping I read the book Breaking The Vicious Cycle all about the SCD, and now I understand why those things bother me.

So give it a try, and if you get frustrated remember that the good results can often lead to the "why" later on!

Good luck and all the best.

[rinne]

Hi.

I won't repeat what IChaseFrisbees said as it was said so well.

I took me over two years on a gluten and dairy free diet before I acknowledged that I don't do well with any grains/carbs. I too have found some success with the SCD.

I went for acupuncture twice a week for about a year. I did find it helpful but knowing what I know now I don't know that I would have put my health care dollars there I think a yoga class might have been just as helpful and more proactive on my part, on the other hand I was very ill and I desperately needed to feel that someone was helping me to regain my health, so in the end it's a toss-up!

I notice that if I eat too much I suffer, I think the answer is simple, my digestion is damaged and needs time to heal, too much of anything is too much and with certain foods which are hard to digest a little is too much. I find it difficult sometimes and then I suffer. I love fat. Corn I have learned to live without.

I wonder, do you really like corn and fat? There are many on the board that know far more about digestion than I do but lately I have found it very helpful to eat finely grated beets with apple cider vinegar when I eat protein. This mixture is supposed to help the bilary system and it does seem to be helping my digestion.

Diet is a great diagnostic tool, after being gluten free for six months it is good that there was no sign of damage. I totally agree with you about the B.S. in I.B.S.

[luciddream928]

I wonder, do you really like corn and fat? There are many on the board that know far more about digestion than I do but lately I have found it very helpful to eat finely grated beets with apple cider vinegar when I eat protein. This mixture is supposed to help the bilary system and it does seem to be helping my digestion.

Diet is a great diagnostic tool, after being gluten free for six months it is good that there was no sign of damage. I totally agree with you about the B.S. in I.B.S.

Thank you both for your replies and good insights! I really like the idea of separating food... I have found that when I'm really busy, and I eat small amounts of snacks (fruit, veggies, nuts) spaced out throughout the day then I seem to feel better. I've often wondered if it's because I"m eating one thing at a time and not really mixing it with other stuff. I am very aware that I"m an emotional eater and I know that doesn't help things at all. I'm working through that too. And yes, I love corn and fat. I'm 5'0 and a consistent 97 lbs. I am dissatisfied with my weight but high fat foods seem to kill me. But I can see my bones and it's gross. I wish I weighed more.

I keep wondering about grains and if they are a problem altogether. I can't tolerate popcorn at ALL and corn chips bother me, so I wonder if I have issues with that.

I'm just really sad and frustrated. I feel crazy following this strict diet when it helps but I don't feel my body in sync and I know it's irritated. Oddly enough I felt really good right before I had the colonoscopy and right after, probably because I was completely cleaned out. I wondered if there is stuff I can't digest and it just hangs around and is irritating, not sure about that.

[rinne]

Thank you both for your replies and good insights! I really like the idea of separating food... I have found that when I'm really busy, and I eat small amounts of snacks (fruit, veggies, nuts) spaced out throughout the day then I seem to feel better. I've often wondered if it's because I"m eating one thing at a time and not really mixing it with other stuff. I am very aware that I"m an emotional eater and I know that doesn't help things at all. I'm working through that too. And yes, I love corn and fat. I'm 5'0 and a consistent 97 lbs. I am dissatisfied with my weight but high fat foods seem to kill me. But I can see my bones and it's gross. I wish I weighed more.

I keep wondering about grains and if they are a problem altogether. I can't tolerate popcorn at ALL and corn chips bother me, so I wonder if I have issues with that.

I'm just really sad and frustrated. I feel crazy following this strict diet when it helps but I don't feel my body in sync and I know it's irritated. Oddly enough I felt really good right before I had the colonoscopy and right after, probably because I was completely cleaned out. I wondered if there is stuff I can't digest and it just hangs around and is irritating, not sure about that.

In my experience keeping it simple works best and like you I do better if I eat just one or two ingredients at a time. Actually, eating less generally seems to work best for me but I love to eat and I am not always disciplined about eating less. I do stay within the SCD parameters though.

I know that sometimes when I have been in constant pain for weeks I have just said to heck with it and eaten a carton of strawberry Hagen Daas. At those points I felt like I was feeding my soul, I don't know if that makes any sense at all but it was all about sweetness and comfort.

Now that I am doing the SCD I can make frozen strawberry yogurt that I like better than Hagen Daas. Somedays life is good.

My brother mentioned the same thing to me recently about having feeling really good emptied out when he had his colonoscopy, perhaps you are on to something.

One thing the acupuncterist said to me that I found very interesting is that the body is very precise in communicating, it is we who have tuned out our bodies. I think that when we know something is a problem we should trust our knowledge and leave that food out of our diets. I knew wheat was a problem for me and I mostly avoided it but I didn't understand about gluten. I ate spelt which I knew was lower in gluten and I could eat a little but if I overdid it I had the same reaction I had to wheat so I gave it up. Unfortunately, by the time I realized these things I was already tipping toward ill health.

I asked about the corn and fat because there is a theory that we tend to be addicted to those foods which are most problematic for us.

I know it is difficult, it is okay to feel sad but in the midst of feeling sad do something kind for yourself.

[IChaseFrisbees]

Thank you both for your replies and good insights! I really like the idea of separating food... I have found that when I'm really busy, and I eat small amounts of snacks (fruit, veggies, nuts) spaced out throughout the day then I seem to feel better. I've often wondered if it's because I"m eating one thing at a time and not really mixing it with other stuff. I am very aware that I"m an emotional eater and I know that doesn't help things at all. I'm working through that too. And yes, I love corn and fat. I'm 5'0 and a consistent 97 lbs. I am dissatisfied with my weight but high fat foods seem to kill me. But I can see my bones and it's gross. I wish I weighed more.

I know that many people say it's better to have around 6 small meals spaced throughout the day and snack a lot than to have 3 definite big meals, I'm not sure why though.

I know exactly what you mean about putting on weight, I'm 5'11" and 155 on a good day, I've always had trouble putting on weight and now that I can't tolerate any protein powders it's become even harder. I just upped my egg and meat intake and now I'm hoping for the best!

Good luck with the emotional eating, once you've been off of some of the comfort foods for a while it gets a little easier. I used to eat chocolate like a mad man, but now fried bananas with a little brown sugar are the thing for me. In comparison with the rest of my diet that's a pretty delicious sugary treat haha

And thank you rinne, I hope the SCD does the trick for all of us.

[mftnchn]

I am in agreement with what has already been posted. Along with that, there seems to be a huge variety in what works for each person beyond gluten-free. Since you are still well within the 1-2 years of healing, it could be just sticking it out and waiting is an option.

That said, there's a few things that can be done test wise to try to help figure things out. Allergy testing is not as accurate as elimination diet, but can give you a hint at least. What was very helpful to me was a thorough digestive function test. Look for one that checks for residues of fat, protein, and sugar or starch. The fat will be a good test of general malabsorption. But the protein residue may give you a sense of whether you need some enzymes or other supplements to help you break it down. Sugar should not be excreted. It should be broken down high in the small intestine into single molecule sugars and absorbed. Beyond that it could be helpful to figure out if you have any major deficiencies--because you still could very well be celiac.

My testing (twice) showed high levels of sugar in stool, which indicated I was not digesting carbs. Digestive enzymes for carbs didn't make much difference. So my doctor said I needed to be off all but monosaccharides that don't need to be broken down. So yes, I'm also on SCD.

SCD isn't necessary for everyone for sure. What I like about it is that it covers the bases of what I need, and there is a system to it--with recipes and other people I can interact with so I don't feel totally on my own. There are books on it, recipes books for it, etc. The other thing is that if you start from the intro diet and further restrict dairy and eggs to start with (3-5 days) you can add these foods one at a time and have a pretty darn good elimination diet. The diet eliminates all grains (a common problem), and legumes are an advanced food so are initially eliminated. That just leaves dairy and the nightshades for major allergic food groups, and potatos are eliminated (another major nightshade problem). Dairy is also restricted to only lactose free (via 24 hour culturing) yogurt and aged cheese. I also like that the diet is designed for healing the gut, and may be used temporarily or long term according to need.

[num1habsfan]

I noticed you also got the IBS diagnosis. Someone is right...it really is what they say when they can't diagnose what else is wrong (and they say IBS even tho all info on it says you'll strictly NOT have a certain symptom, yet you do). It's all I've heard for the past 6 years.

What exactly kind of symptoms are you getting?

[rinne]

My sister was diagnosed with IBS about 15 years ago and then about 8 years ago she was diagnosed with Celiac. The doctor told her that she should avoid wheat, nothing about gluten, she continued to eat rye bread and so she never saw any improvement in her symptoms.

This is how stupid we are as a society, because it had to do with poop it was never discussed in the family other than a whispered IBS, when I brought up Celiac and I had been very sick for a while my mother then told me that she also had Celiac.

If her doctor had told her that her family should be tested it would have saved myself and my two brothers from being as ill as we became.

[num1habsfan]

My sister was diagnosed with IBS about 15 years ago and then about 8 years ago she was diagnosed with Celiac. The doctor told her that she should avoid wheat, nothing about gluten, she continued to eat rye bread and so she never saw any improvement in her symptoms.

and i was yold that with IBS i should eat a lot of whole wheat!! the specialists didnt want to believe me that i had celiac and was already gluten-free, so told me quit the diot.

[rinne]

and i was yold that with IBS i should eat a lot of whole wheat!! the specialists didnt want to believe me that i had celiac and was already gluten-free, so told me quit the diot.

I would say UNBELIEVABLE but sadly it is just too believable.

This experience on top of other negative experiences with conventional medicine has left me with little trust in that system but great trust in myself and others who know first hand what it is like to be ill. I take that as a positive.

[dilettantesteph]

It is possible that you are sensitive to very small amounts of gluten. See posts about super sensitive celiacs and that you need to be more careful with your gluten free diet.

[luciddream928]

It is possible that you are sensitive to very small amounts of gluten. See posts about super sensitive celiacs and that you need to be more careful with your gluten free diet.

Yes it is hard to tell whether or not I'm being glutened or not. I am almost positive that the rice cheese I bought has an effect on me. I noticed small red bumps on my hands, toes, and arms were SO ITCHY the next day... but it never lasts long so I never think it's DH.

As far as I know, I cleaned everything out of my cabinets with gluten... and my personal care products... perhaps I should do another run-through. It's hard to tell whether the gluten-free diet is working at all if I still have symptoms. After the colonoscopy, I went "the other way" - no D but C. The symptoms before gluten-free (or when I slipped up) were severe D with gas, bloating, cramping, weird random pains all over my digestive tract, itchy red bumps like chicken pox. All of this could be either mild or severe.

When I get glutened, I seem to get in a REALLY bad mood first and then I know it's coming. Then I feel awful for about 10-12 days and can't eat ANYTHING. Even rice aggravates it.

[chatycady]

The original diet for celiacs was created by Dr. Merrill Haas. He created the specific carbohydrate diet for celiacs and other people with digestive disorders. He determined that celiac's villi are damaged and do not produce enzymes to digest certain grains, sugars, etc. It is unrealistic to think a damaged (villi) small intestine can digest complex foods, such as corn, rice, gluten free grains, etc. Milk intolerance is the first sign there is extensive damage.

Check out the SCDiet on the web. And read the book "Breaking the Vicious Cycle". It may help you heal and feel better.