How Do You Decide?

[1desperateladysaved]

Some foods have controversy about whether a celiac can have them or not. Not many of us have their own labs. I surely don't want to test a food that will do harm. Even experts have conflicting views.

My current thought is this. I am just beginning the healing process at 5 months grain free and 7 months gluten free. I feel I need to be absolutely stringent now. I do not eat many natural foods that bother others. Those I hear of that others have problems with I might eat especially if it is a food that I have not overconsumed. I hope to one day be able to put some things back in. At that point symptom hopefully will be undeniably clear when something amiss is put in. I feel it is alot easier and safer to be really restrictive in the beginning when you can not tell what is going on.

How are others making decisions like this?

[Jestgar]

...You eat anything you want, unless youhave a problem with it, then you stop eating it.

You can't base your food choices on someone else's reactions - we're all too different.

[GottaSki]

What other foods are you eliminating? Did you remove all grains because they were obviously causing problems for you?

If it is a food that you know is causing you problems, remove it for six months then re-introduce it - wait at least three days to see if you have any reaction to it - if no reaction add it back into your diet. If you have a reaction, remove it and re-trial it at six month intervals.

Never remove a food or group of foods because someone else has had a reaction. Many people heal quite nicely by just removing gluten.

[kareng]

I agree with Jess and Lisa.

I think common sense helps. Know what is and isn't likely to have gluten in it. And remember everything isn't about gluten.

For example- Common sense would tell you that an orange doesn't have gluten. If you eat an orange and have an upset stomach, its not gluten. Its something about the orange or lousy timing and you got a stomach virus.

[GottaSki]

PS...when you trial foods, make sure it is the whole food. For instance trial with fresh or frozen corn - not corn chips or corn tortillas or slices of tomato rather than spaghetti sauce or salsa.

[Persei V.]

What other foods are you eliminating? Did you remove all grains because they were obviously causing problems for you?

If it is a food that you know is causing you problems, remove it for six months then re-introduce it - wait at least three days to see if you have any reaction to it - if no reaction add it back into your diet. If you have a reaction, remove it and re-trial it at six month intervals.

Never remove a food or group of foods because someone else has had a reaction. Many people heal quite nicely by just removing gluten.

I second this. I still can have corn, soy and nightshades. They are in fact in my safe foods list, and I've seen some people intolerant to them here... If I were to eliminate them because other people reacted, I would be damned.

Of course I can become intolerant to them later, but not now, so let's enjoy

[mbrookes]

Then there are the lucky ones like me. I can eat ANYTHING except gluten. No other intolerances. If I listened to what bothered others, my diet would be much different.

[1desperateladysaved]

I understand that everyone reacts differently. That is part of the reason that I asked this question. I can be more concise with my answer. I have not removed anything that I had not been suspicious of for a long time, or had a reaction to. Upon removal, I got confirmations by reacting to the smell. I also had withdrawl symptoms or symptoms of my body cleaning out. I am having higher highs than ever, so it seems like I am on the right track. I have not run out of foods to eat, and think I am eating a bigger variety than ever. My diet plan has been supported by my MD. I am also under discussion about it with a chiro trained in nutrition.

I am coming from a standpoint of desperation. I must heal. My body is acting super sensitive. I have had 30 years of damage, nearly died 5 years back, and I know I have quite a few intolerances I am experienced at finding them having found several over the last 20 years. Extreme caution does seem advisable. My body is now able to really tell me what it doesn't like. I am looking forward to a time when I will be able to try to introduce some food back. But that is me and my standpoint, which I present so you know where I am coming from.

I asked how you decide. jetsgar said that he/she decides by eating it and sees if they react. That is the kind of answer that I am looking for. Other ideas may be I read what helps others. I read what trained professionals have to say about it. Karen G says she uses her common sense.

My question is:

How do you decide if you should eat it especially when there is disagreement?

[kareng]

My question is:

How do you decide if you should eat it especially when there is disagreement?

We thought we answered that. I guess we don't know what you are asking?

I see no diagreement here or in the reputable Celiac medical community - don't eat wheat, rye, barley and sometimes even gluten-free oats (usually recommended that you wait until you get feeling better). Often, it is recommended you limit or eliminate dairy for a few weeks or months but that isn't because it has gluten. That is because the part of your intestines that are damaged by Celiac is the part that digests dairy.

[GottaSki]

If you are seeing improvement - I'd say you have found what you need to be eating. If you remain to improve or even have periods where nothing changes I see no reason to remove further foods. Should you get worse then it would be time to look for more food intolerance. If you find a food that bloats you, causes pain, makes you foggy or simply turns you off - don't eat it.

I absolutely know how frustrating it is to want to heal from decades of undiagnosed Celiac Disease. It took 43 years to destroy my digestive system. At three and half years although I have had several periods of improvement and one eight month period of excellent health (healthier than ever in my life), I have had many more months of frustration that my digestive system is not healing which caused serious flares and backslides.

Several folks on this board told me to have patience during my first year - that it can take up to five years to heal serious damage - at seven months gluten-free I could not believe that everything I was doing was not enough and I was not only not improving - my pain and fatigue had gotten worse.

So now I'll tell you what you have likely already been told and will likely be told again. Healing the small intestine from total villous atrophy takes time. I hope it will not take years in your case, but it may.

I decided to remove every possible high lectin and common food intolerance when I was getting much more ill gluten-free. Should you find you are getting worse - look for other foods. If you are improving - even slowly - keep doing what you are doing.

Hang in there

[mushroom]

And I would add, if you are not improving/getting worse and feel you do need to remove something, start with the most likely culprits. For many of us these are the most common allergens - soy, corn, eggs (usually the yolk), peanuts, tree nuts, fish, shellfish. Don't do them all at once - try one at a time.

[1desperateladysaved]

I keep getting really good ideas of what I should do. That is nice. I was really wondering how YOU do it. How do you decide what you should eat?

I think I have gotten some answers now. Thanks

[GFinDC]

Hi D-Lady,

I am more of the 5 year recovery plan type myself. I had periods of feeling better and feeling worse. Notice I am using past tense Yahoo! I have quite a few intolerances, most of them developed after going gluten-free. I pretty much stick with the minimum 6 months for a retrial of a problem food, if I am really interested in eating that food again. But it is kind of hard to tell what foods are going to be a long term problem while your gut is irritated. Since April I gave up all forms of grapes and my gut has improved a whole lot. I can now eat beans, which I had stopped several years ago. One thing to keep in mind also, is your gut bacteria may need to adjust to re-introduced foods. If they haven't had any beams to eat for several years, they won't be adjusted to eating beans. So the first time may be rough. But if they do adjust after a few times then all is good. If the beans (or other food) were actually a problem, you would continue to have digestive symptoms and that would mean you need to stop that food. I've been able to reintroduce some foods lately that were off limits for years. But others are still problems. So it can vary and the only way to know is to try it.

[GottaSki]

I keep getting really good ideas of what I should do. That is nice. I was really wondering how YOU do it. How do you decide what you should eat?

I think I have gotten some answers now. Thanks

I thought we had answered your question - I'll take one more shot - this is exactly what I did:

First 6 months post Celiac Dx: Removed all gluten - had a few accidental glutenings and setbacks but had general digestive improvement - all other symptoms got worse.

6 months to 2 years post Dx: Kept detailed food log, tried removing foods I thought be bothering me/impeding healing. Some minor improvements but generally continued to get worse and could not pinpoint any particular food or food group intolerance.

2.25 to 3 years post Dx: Removed ALL high lectin food groups along with other foods that are likely allergens/intolerances plus those that I had already identified as irritating me. Dairy, Grains, Legumes, Nightshades, Eggs, Nuts, Seeds, Citrus were removed, eating only meat, fish, vegies (non-nightshade) and selected fruit for one month. Then I trialed each food (not food group) one at a time with at least three day between to monitor for reactions. Whether or not I had reaction to the food I removed them and returned to my base foods so that every trial had an identical start point. This process took over four months. I failed nearly every food I had trialed - often with very surprising symptoms. The few foods I had no reaction to I added back into my diet. From the very start of this elimination diet I was healthier and had more energy than any period in my life to date - until those 8 months I had no idea how it felt to feel great and was surprised to find out how ill I actually had been. It is amazing what a body will compensate for.

3 years post Dx: Had a major flare/flu type setback that got worse over a period of a month until I was at my sickest all over again. Docs had no explanation. Even my digestive symptoms came back. I was bloating, constipated and had all my fibromyalgia symptoms back again - wasn't vertical at all for a few months and was extremely foggy mentally. Endo revealed my villi were still completely atrophied, was treated for SIBO to see if it helped - very minimal improvement there. I removed the foods that had passed my trial: rice, potato, cheese, butter with no improvement. I ended up eating all broth/soups until I was able to eat my safe foods again. I have been eating meat, fish, vegies and fruit for about two months now and am finally slowly improving: have a clear head, pain and fatigue is improving, constipation is very infrequent. The last three days I have been starving and had much more energy so I am very hopeful that I am on the mend once again.

I still have no idea what caused my severe backslide in March - I had extreme health for eight months - thought I had found the solution to my complex digestive puzzle, than WHAM, sent back to starting point. What I do know is if I continue to improve I will not be trialing the foods I lost for at least another year.

Today, this week I am improving again - I remain ever hopeful that I'll continue to improve and regain full health.

[1desperateladysaved]

I thought we had answered your question - I'll take one more shot - this is exactly what I did:

First 6 months post Celiac Dx: Removed all gluten - had a few accidental glutenings and setbacks but had general digestive improvement - all other symptoms got worse.

6 months to 2 years post Dx: Kept detailed food log, tried removing foods I thought be bothering me/impeding healing. Some minor improvements but generally continued to get worse and could not pinpoint any particular food or food group intolerance.

2.25 to 3 years post Dx: Removed ALL high lectin food groups along with other foods that are likely allergens/intolerances plus those that I had already identified as irritating me. Dairy, Grains, Legumes, Nightshades, Eggs, Nuts, Seeds, Citrus were removed, eating only meat, fish, vegies (non-nightshade) and selected fruit for one month. Then I trialed each food (not food group) one at a time with at least three day between to monitor for reactions. Whether or not I had reaction to the food I removed them and returned to my base foods so that every trial had an identical start point. This process took over four months. I failed nearly every food I had trialed - often with very surprising symptoms. The few foods I had no reaction to I added back into my diet. From the very start of this elimination diet I was healthier and had more energy than any period in my life to date - until those 8 months I had no idea how it felt to feel great and was surprised to find out how ill I actually had been. It is amazing what a body will compensate for.

3 years post Dx: Had a major flare/flu type setback that got worse over a period of a month until I was at my sickest all over again. Docs had no explanation. Even my digestive symptoms came back. I was bloating, constipated and had all my fibromyalgia symptoms back again - wasn't vertical at all for a few months and was extremely foggy mentally. Endo revealed my villi were still completely atrophied, was treated for SIBO to see if it helped - very minimal improvement there. I removed the foods that had passed my trial: rice, potato, cheese, butter with no improvement. I ended up eating all broth/soups until I was able to eat my safe foods again. I have been eating meat, fish, vegies and fruit for about two months now and am finally slowly improving: have a clear head, pain and fatigue is improving, constipation is very infrequent. The last three days I have been starving and had much more energy so I am very hopeful that I am on the mend once again.

I still have no idea what caused my severe backslide in March - I had extreme health for eight months - thought I had found the solution to my complex digestive puzzle, than WHAM, sent back to starting point. What I do know is if I continue to improve I will not be trialing the foods I lost for at least another year.

Today, this week I am improving again - I remain ever hopeful that I'll continue to improve and regain full health.

Yes, that is an answer to the question! That is how gotta ski decides what to eat. Are there any other ways?

[Persei V.]

My way is kind of unsafe to do. Since I am fairly tolerant to gluten (and I have been improving recently, 6 slices of gluteny cake and my stomach only yawned for half of a day), I just eat things without much control. Sometimes I feel something is not right soon, sometimes I will only realize when I am full-blown glutened and the damage is done.

I don't think this is a safe method for Celiacs or people too sensitive... I have non-celiac gluten intolerance and even so, it is really mild because I didn't take long to figure it out.

[mushroom]

The way I did it, not necessarily recommended, was not at all methodical, and the sequence is set out in my signature block.

I had GI problems (cramping and pain) as a child from breakfast cereals (wheat), but outgrew them as a teenager (and also stopped eating cereals, albeit unconsciously, after leaving home.) Up until 1969 I had pretty much a cast iron stomach and had a friend who commented she loved to go out to eat with me because I could eat ANYTHING.

In 1969 I started working with a group who ate a lot of Mexican food, my first introduction to it -- I know, I lived a sheltered life -- and began having digestive troubles. I tried to avoid Mexican restaurants but hubs loved Mexican food. I didn't give any thought to food intolerances.

I had to quit caffeine in 1973 because I had spent too much time working second jobs in espresso bars and sampling too much of the owner's product -- sensitization! Racing heart and insomnia, and I mean big time!!!.

Gradually over the years I began having more and more digestive issues, not just Mexican food. Hard to pinpoint what it was.

In approx. 1990 I worked across the street from a frozen yogurt place and often mid-afternoon someone would go across the street and get some. I was always running for the bathroom about half an hour after eating it. One of my workmates was lactose intolerant and she diagnosed me. Eliminated milk, ice cream, frozen yogurt, cream. Other dairy didn't bother me.

During the 90's discovered that I always felt bad when I ate pasta so slowly dropped that from my diet. Could still eat a whole baguette of french bread with no problem, or so I thought.

During the 90's started having episodes of extreme bloating and gas, especially after eating things like corn chips, potato chips, popcorn, all the party snack-type things. Bloating was so bad I would faint. Bit embarrassing really.. Finally began to suspect food, but was sit corn, wheat, potatoes.....???

Life continued on, with the fainting (slow learner here) until I developed rheumatoid arthritis, ultimately diagnosed as psoriatic arthritis. Rheumatologist knew nothing about celiac or autoimmune diseases. I knew someone with ankylosing spondylitis (autoimmune rheumatoid disease) who had dropped gluten from his diet to treat his AS. I decided to give it a trial for my PsA. Was amazed when my GI symptoms improved but not my arthritis.

However, after dropping gluten, I developed lots of rashes, itches, hives and discovered I was sensitive to soy (and corn, of course -- still fainted from that one -- so dropped both of those. Then my bloating problem transitioned into a manifestation of atrial fibrillation (both that and the fainting coming from the vagus nerve) and it was being precipitated by something else I was eating. I knew that nightshades were bad for arthritis, and discovered that baked potatoes gave me hives. Dropped potatoes, had problems with tomatoes so dropped all nightshades. Next food to lose was legumes. When I had rid my pantry of gluten I had found lots of beans, lentils, split peas, but for some subconscious reason I was not really using them. I had stopped eating refried beans. Then I started having reactions to green beans and green peas, so there went the legumes.

Without zingy tomato sauces and salsas my taste buds cried out for stimulation and I apparently overdid lemon and lime juice - those were the last foods I have had to drop because I was breaking out in hives again.

Like GottaSki, discovered lectins and realized that all the foods I did not tolerate were high in lectins. Luckily I seem to tolerate dairy lectins okay. I can also now tolerate potato starch, corn starch, and of course lactose. I believe the reason I tolerate the starches is because they are highly refined, and the lectins are contained in the outer coverings of the plants as a protective layer for the plant against birds and insects - hence baked potatoes and any corn where the whole kernel is ground into the product are things I cannot eat.

So that's what happens when you are a slow learner and in denial.

[dilettantesteph]

Listening to others doesn't work well for me. I react to lots of things which others don't and sometimes I don't react when others say that they do.

If I am experiencing symptoms, I eliminate one food at a time for a week and see if I feel any better. Then I reintroduce it to see if I get better or worse. I read all I can to help me to decide what to eliminate first, as I want to get better as soon as possible. This is a tedious, slow process, but it is worth it in terms of gains in health which have been remarkable.

If I am not experiencing symptoms, I add one food at a time and don't add anything else new for a week. I start with a small amount so that if I do get a reaction from that, I don't give myself a bad reaction. I gradually increase the amount I try over the week. Again, I read all I can and ask lots of questions to decide what to try.

I hope that helps. I am in the super sensitive category.

[1desperateladysaved]

The way I did it, not necessarily recommended, was not at all methodical, and the sequence is set out in my signature block.

I had GI problems (cramping and pain) as a child from breakfast cereals (wheat), but outgrew them as a teenager (and also stopped eating cereals, albeit unconsciously, after leaving home.) Up until 1969 I had pretty much a cast iron stomach and had a friend who commented she loved to go out to eat with me because I could eat ANYTHING.

In 1969 I started working with a group who ate a lot of Mexican food, my first introduction to it -- I know, I lived a sheltered life -- and began having digestive troubles. I tried to avoid Mexican restaurants but hubs loved Mexican food. I didn't give any thought to food intolerances.

I had to quit caffeine in 1973 because I had spent too much time working second jobs in espresso bars and sampling too much of the owner's product -- sensitization! Racing heart and insomnia, and I mean big time!!!.

Gradually over the years I began having more and more digestive issues, not just Mexican food. Hard to pinpoint what it was.

In approx. 1990 I worked across the street from a frozen yogurt place and often mid-afternoon someone would go across the street and get some. I was always running for the bathroom about half an hour after eating it. One of my workmates was lactose intolerant and she diagnosed me. Eliminated milk, ice cream, frozen yogurt, cream. Other dairy didn't bother me.

During the 90's discovered that I always felt bad when I ate pasta so slowly dropped that from my diet. Could still eat a whole baguette of french bread with no problem, or so I thought.

During the 90's started having episodes of extreme bloating and gas, especially after eating things like corn chips, potato chips, popcorn, all the party snack-type things. Bloating was so bad I would faint. Bit embarrassing really.. Finally began to suspect food, but was sit corn, wheat, potatoes.....???

Life continued on, with the fainting (slow learner here) until I developed rheumatoid arthritis, ultimately diagnosed as psoriatic arthritis. Rheumatologist knew nothing about celiac or autoimmune diseases. I knew someone with ankylosing spondylitis (autoimmune rheumatoid disease) who had dropped gluten from his diet to treat his AS. I decided to give it a trial for my PsA. Was amazed when my GI symptoms improved but not my arthritis.

However, after dropping gluten, I developed lots of rashes, itches, hives and discovered I was sensitive to soy (and corn, of course -- still fainted from that one -- so dropped both of those. Then my bloating problem transitioned into a manifestation of atrial fibrillation (both that and the fainting coming from the vagus nerve) and it was being precipitated by something else I was eating. I knew that nightshades were bad for arthritis, and discovered that baked potatoes gave me hives. Dropped potatoes, had problems with tomatoes so dropped all nightshades. Next food to lose was legumes. When I had rid my pantry of gluten I had found lots of beans, lentils, split peas, but for some subconscious reason I was not really using them. I had stopped eating refried beans. Then I started having reactions to green beans and green peas, so there went the legumes.

Without zingy tomato sauces and salsas my taste buds cried out for stimulation and I apparently overdid lemon and lime juice - those were the last foods I have had to drop because I was breaking out in hives again.

Like GottaSki, discovered lectins and realized that all the foods I did not tolerate were high in lectins. Luckily I seem to tolerate dairy lectins okay. I can also now tolerate potato starch, corn starch, and of course lactose. I believe the reason I tolerate the starches is because they are highly refined, and the lectins are contained in the outer coverings of the plants as a protective layer for the plant against birds and insects - hence baked potatoes and any corn where the whole kernel is ground into the product are things I cannot eat.

So that's what happens when you are a slow learner and in denial.

That sounds sort of where I have been the last 20 or so years. Finding out by unstructured means. I have occassionaly forgot that I had problems with certain things only to figure it out the next time.

Diana

[1desperateladysaved]

My way is kind of unsafe to do. Since I am fairly tolerant to gluten (and I have been improving recently, 6 slices of gluteny cake and my stomach only yawned for half of a day), I just eat things without much control. Sometimes I feel something is not right soon, sometimes I will only realize when I am full-blown glutened and the damage is done.

I don't think this is a safe method for Celiacs or people too sensitive... I have non-celiac gluten intolerance and even so, it is really mild because I didn't take long to figure it out.

I just remembered that when I used to bake delicious homemade wheat bread that I would bloat. My belly looked really big, but it caused no pain. It is just cosmetic, though.