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motoadve
Joined: 13 Feb 2009
Posts: 23
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 Posted: Fri Feb 13, 2009 10:38 am Post subject: New to the forum, some questions |
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I always get a gastro exam every 6 months.I have acid reflux.
In my past exam I was diagnosed with Mrash II , and my DR told me to be very strict with a gluten free diet.
I was (or thought) got a gastro last week and now Im Marsh III A. So have celiac disease.
I have no sympthoms at all, only positivie sympthom is with the las 6 months dieat of Gluten free, the acid reflux went away.
Im 44 and excersice 7 days a week (bike, swim gym) eat healthy and Im disciplined.
What worries me is Im 100% sure it is impossible to have a 100% gluten free diet.
In your house yes maybe 99% but if you travel? if you go to a remote country biking for 6 days (which I do) , I mean I can try and avoid obvous gluten, but what about the hidden gluten.
So if you have a GF diet and in atrip or some ocassion without knowing you get gluten, it deteriorates you, but if you return to GF when you are home, do you recover is is a step lost that you never get back? |
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sweetea
Joined: 18 Nov 2008
Posts: 180
Location: Midwest
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| Posted: Fri Feb 13, 2009 12:26 pm Post subject: |
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I'm sorry I'm not much help because I'm a newbie to the GF diet. But I'll be lurking in this thread because I'm interested to read the responses.
Not being able to travel like I used to is the biggest thing that depresses me about being GF. Even planning a simple week in Florida seems more like a chore now... a lot of the fun will be lost coz I'll STILL have to cook for myself (part of a vacation for a housewife like me is to skip out on kitchen chores for a week) and will miss out on eating out all the time.
I used to travel Europe freely without concern about where we'd stop to eat... and now that will all change. |
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ostrich
Joined: 30 Mar 2006
Posts: 5105
Location: Nebraska
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| Posted: Fri Feb 13, 2009 12:59 pm Post subject: Re: New to the forum, some questions |
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Hi there motoadve! Welcome! 
| motoadve wrote: | What worries me is Im 100% sure it is impossible to have a 100% gluten free diet.
In your house yes maybe 99% but if you travel? if you go to a remote country biking for 6 days (which I do) , I mean I can try and avoid obvous gluten, but what about the hidden gluten. |
You're right. It can be very hard to travel while keeping on the diet. Especially if it's some place you've never been to before.
1. Plan ahead! This means researching the area, the local food joints, etc. Does the area have a Celiac group? Maybe you can contact them for help.
2. Be prepared! Bring along GF food if you have to.
3. Be flexible! OK, so the restaurant you were going to eat at doesn't have a GF menu after all. It's a good thing you were prepared and brought some GF snacks!
| Quote: | | So if you have a GF diet and in atrip or some ocassion without knowing you get gluten, it deteriorates you, but if you return to GF when you are home, do you recover is is a step lost that you never get back? |
You can and will recover. However, the time it takes to recover depends on the person and the amount of gluten consumed. Some people bounce right back. Others take weeks or months.
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Ostrich :>--O==={
Time falls away, but these small hours
These little wonders still remain |
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aklap
Joined: 02 Oct 2004
Posts: 10972
Location: WI, USA
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| Posted: Fri Feb 13, 2009 1:13 pm Post subject: |
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The issue is not so much the damage/recovery of the intestines [yeah, you'll recover]...it's the repeated exposure to gluten that keeps your auto immune system fired up. This can cause problems overall
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Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa |
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motoadve
Joined: 13 Feb 2009
Posts: 23
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| Posted: Fri Feb 13, 2009 1:27 pm Post subject: |
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Thanks guys for your quick replies.
This places I go are remote, central America, South America , in the Andes ect.
My plan is to eat salads just olive oil and vinegar, fried or grilled chicken, fish or meat, rice, potatoes carrots, beans lentils ect.
Always telling the cook not to put any sauces or spices.Im new here but think this could work, maybe one or two of the meals could be crosscontaminated in a week, is this acceptable?
Dont be nice to me , just honest and realistic.
Tell me your honest opinions because I cannot carry snack of GF food in my backpack for a week while pedaling, and also need something more than snacks for a week trvelling by Mt bike. |
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aklap
Joined: 02 Oct 2004
Posts: 10972
Location: WI, USA
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| Posted: Fri Feb 13, 2009 2:30 pm Post subject: |
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Hey Moto,
Welcome to the board. Wow, sounds like you lead quite the exciting life!!  You must have lots of stories.
There's no room for cheating, you can't balance out your gluten intake like you can with sugars/carbs in a diabetic diet. Sure, current scientific studies show that 10mg [1/18 of a teaspoon] of gluten per day should be safe for most people. I believe 30 mg of gluten per day was enough to cause intestinal damage. The point is...small amounts - trace amounts matter.
Untreated CD can lead to other auto-immune diseases as well as an increased risk of certain types of lymphomas.
Eating out is risky, no matter how you slice it. Ingredients might not be GF, cross contamination issues are a problem.
Probably one saving grace in all of this might be the locations you are going to. Their cultures may not be so dependent or polluted with gluten [wheat, barley, rye and oats]. You'd have to study up on the local foods and preparation practices. I suspect you are already somewhat familiar with them.
The more known GF foods you carry with you, the better off you'll be. Since you are a Silent Celiac [no outward symptoms], it will be difficult for you to determine if you are in compliance. From the sounds of your recent doctor visit, your damage is getting worse. Marsh III is worse than Mash II. Your villi are just about toast. Your next stop is Marsh IV - end stage. Your doc is right - you need to ratchet up your defenses to gluten.
Check this out - A Marsh Classification Chart.
Bottom line: without strict adherence you may be doomed to suffer the consequences. Maybe not today, maybe not next week...but someday...this will probably come back to bite you in the a$$.
I just did this for someone here, but I'll reconstruct it again...
Complications of untreated CD:
http://celiacdisease.about.com/od/symptomsofceliacdisease/a/complications.htm
http://www.umm.edu/celiac/celiac_facts.htm
| Quote: | What are the long-term effects of celiac disease?
Untreatedceliac disease can be life threatening. Celiacs are more likely to be afflicted with problems relating to malabsorption, including osteoporosis, tooth enamel defects, central and peripheral nervous system disease, pancreatic disease, internal hemorrhaging, organ disorders (gall bladder, liver, and spleen), and gynecological disorders. Untreated celiac disease has also been linked an increased risk of certain types of cancer, especially intestinal lymphoma. |
http://www.celiac.com/articles/98/1/Liver-Disease-Untreated-Celiac-Disease-May-Cause-Liver-Failure/Page1.html
http://www.csaceliacs.org/celiac_treatment.php
| Quote: | Associated Conditions
For the patient who may have had active, untreated celiac disease for a number of months or even years, there may be associated immune-related conditions. There is an established association between CD and insulin-dependent diabetes mellitus and with thyroid disease. Not so common, but occasionally found in patients with CD are hyposplenism, splenic atrophy and selected neurological disorders. It must be emphasized, however, that none of these conditions is specific for CD.
The conditions of osteoporosis and osteopenia (a loss of bone mineral density) are serious complications for persons with CD. Most authors report the incidence to be about ten times higher among celiac patients than is found in the general population. It is likely that about 4 out of 10 celiac patients will need aggressive treatment for low bone mineral density-related problems. While it can be a problem for both men and women, it affects post-menopausal women at a higher level. Diagnosis of this complication can now be made using bone densitometry. Treatment typically includes calcium supplement intake along with estrogen replacement. Any pattern of treatment must be based on individual evaluation and physician recommendation.
A link has also been discovered between untreated CD and enteropathy-associated T-cell lymphoma. This is true also for patients with dermatitis herpetiformis. Studies have shown, however, that the risk of contracting this condition is reduced when the gluten-free diet is strictly maintained. It has also been found that bowel adenocarcinoma may develop when celiac disease is untreated for a long period of time. |
_________________
Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa
Last edited by aklap on Fri Feb 13, 2009 3:54 pm; edited 2 times in total |
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Kathie
Joined: 27 Jan 2006
Posts: 1063
Location: Florida
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| Posted: Fri Feb 13, 2009 2:50 pm Post subject: |
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| Quote: | My plan is to eat salads just olive oil and vinegar, fried or grilled chicken, fish or meat, rice, potatoes carrots, beans lentils ect.
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I don't know about foreign countries but in the US a lot of restaurant chicken is injected with wheat to make it moist. It sounds like some places are really remote though and if they are killing the chicken out back and cooking it fresh that's a different story. Potentially areas that are using fresh ingredients are going to be easier to deal with because you don't have to worry about what they put inside when they processed it.
| Quote: | | Always telling the cook not to put any sauces or spices. Im new here but think this could work, maybe one or two of the meals could be crosscontaminated in a week, is this acceptable? |
This is up to you, its kind of like ingesting small amounts of poison, is that acceptable risk? Only you can decide. Long term you could end up with some pretty unpleasant side effects especially if you are being contaminated every week. The disease changes over time, I think. I am a lot more susceptible to being glutened now then I was even 10 years ago and the more careful I am, the more severe my reaction is.
| Quote: | | I cannot carry snack of GF food in my backpack for a week while pedaling, and also need something more than snacks for a week trvelling by Mt bike. |
I was going to ask if this was some kind of a group with an equipment truck for gear that could carry food necessities but I guess not. Could you carry some kind of protein bars for emergency meals if you end up somewhere that seems really iffy?
I think its a quality of life issue. If this is your passion and the risk is acceptable to you that's your decision. I don't think anyone knows enough about this disease to say what the long term effects would be because it manifests itself differently in different people, but I think its safe to say that there WILL BE long term effects if you are doing it on a regular basis.
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CD by Biopsy 3/25/88 |
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katkavoski
Joined: 08 Jan 2009
Posts: 80
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| Posted: Fri Feb 13, 2009 4:22 pm Post subject: |
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I think I have seen a post that had an English and Spanish version of a letter that explains your needs to the restaurant staff.
I can not find the post now, (I believe that you guys that are here for longer time know what I am talking about). That may help, too...I am planning to use one of those too when we go to Puerto Rico. |
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aklap
Joined: 02 Oct 2004
Posts: 10972
Location: WI, USA
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| Posted: Fri Feb 13, 2009 4:29 pm Post subject: |
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Triumph dining cards are probably the best option. Lots of different languages.
http://www.triumphdining.com/glutenfreediet.aspx
Kat - yes, there's one over in the travel forum that I used in Mexico back in 2005. Our own AztecPrincess [translator extraordinare] did the translation of it for me.
_________________
Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa |
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Leonard333
Joined: 06 Feb 2009
Posts: 14
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| Posted: Thu Feb 26, 2009 6:08 pm Post subject: |
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| motoadve wrote: | | fried or grilled chicken, fish or meat, |
Much, if not most, fried food is first dipped in a batter. Most batters are four based (wheat). That is your problem. |
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motoadve
Joined: 13 Feb 2009
Posts: 23
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| Posted: Thu Feb 26, 2009 6:18 pm Post subject: |
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Well 10th of March I start a 4x4 trip in Costa Rica, for 6 days already wrote the hotels and explained what I have and what can I eat.
Menu: friend fish and potatoes and salad, I told them the frying pan has to be cleaned before the do my food, no sauces of any kind either
Breakfast
Fruit
Scrambled egg
Fruit juice (real fruit and water in a blender) no boxed stuff
Other menu grilled chicken , no sauces or nothing, rice, beans
stemed fish, steamed veggies
What else, Im running out of ideas, Im not allowed corn for 3 months or any diary for 1 year. |
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Fidissimus
Joined: 17 Mar 2006
Posts: 1975
Location: Portland, OR.
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| Posted: Fri Feb 27, 2009 11:52 am Post subject: |
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I've traveled in Honduras and El Salvador successfully eating out every meal. You just have to be careful and stick to whole foods and ask for them without sauces - using the phrase "naked food" also really gets a waiters attention. 
Of course my circumstances were probably different as I was on business and eating in hotels where nearly all of the staff spoke English and I had an interpreter traveling with us which helped when navigating restaurants. Really the language barrier is what will be the hardest to overcome but once you can get them to understand you'll most likely do okay.
Try your hardest to avoid gluten while you're there - you can always hit up an open air market for fresh fruit. If you know where you'll be staying at night you could try mailing yourself food ahead of time (protein bars, etc). Of course we all know how the postal system works down there - it'd be pretty hit or miss if you actually got your packages but it's an idea.
_________________
Cheers!
Jenn
GF BD: Feb. 2001
Free of wheat, barley, rye, oats, dairy, eggs, almonds, pineapple and brewers yeast.
http://graindamaged.blogspot.com/ |
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cruelshoes
Joined: 23 Sep 2005
Posts: 3556
Location: Washington State
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