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How Do You Decide?


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19 replies to this topic

#1 1desperateladysaved

 
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Posted 28 September 2012 - 05:17 AM

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?
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#2 Jestgar

 
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Posted 28 September 2012 - 05:31 AM

...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.
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#3 GottaSki

 
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Posted 28 September 2012 - 06:37 AM

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.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 kareng

 
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Posted 28 September 2012 - 07:23 AM

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.
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#5 GottaSki

 
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Posted 28 September 2012 - 08:05 AM

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.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#6 Persei V.

 
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Posted 28 September 2012 - 02:22 PM

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 B)
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Lactose free: 8/6/2006
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I am able to eat somre processed foods again (chocolate, lollipops, soysauce).

#7 mbrookes

 
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Posted 28 September 2012 - 06:51 PM

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.
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#8 1desperateladysaved

 
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Posted 29 September 2012 - 03:33 AM

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?
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#9 kareng

 
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Posted 29 September 2012 - 04:10 AM

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.
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#10 GottaSki

 
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Posted 29 September 2012 - 05:40 AM

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 :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#11 mushroom

 
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Posted 29 September 2012 - 06:40 AM

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.
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#12 1desperateladysaved

 
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Posted 29 September 2012 - 07:30 PM

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
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#13 GFinDC

 
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Posted 30 September 2012 - 11:43 AM

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.
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Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#14 GottaSki

 
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Posted 30 September 2012 - 12:31 PM

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.
  • 1

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#15 1desperateladysaved

 
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Posted 01 October 2012 - 03:58 AM

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?
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