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Hi everyone,
As you may have read, I found out yesterday that my son tested positive for gluten at Enterolab. We discussed it this morning, and he has a question that I'm not sure how to answer: How strict does he need to be with the elimination of all gluten???
Like Rich, he travels every week and cannot easily avoid eating in restaurants. Fortunately, many restaurants offer gluten free menus, but my experience is that because the meals are cooked in the same place as gluten, it is impossible for someone highly sensitive (like myself) not to get sick. I have finally accepted that in order to heal, I have to eat at home, or prepare my meals and bring them along when I need to be away from home (even when visiting friends).
My son does not have the typical symptoms of MC such as D or C, but he told me that he has experienced intestinal pain a few times within the last year. He also has problems with his thyroid. He has absolutely no problem with eliminating all items with gluten that he knows of, but, again, how careful does he need to be?
As I'm writing this, I'm wondering if I should recommend a colonoscopy. So my second question would be if this would be appropriate under the circumstances?
Would greatly appreciate any advise.
Love,
Kari
P.S. I think we will proceed with having my 3 grandchildren tested (8 1/2, 7 and 5 1/4 years old).
Would greatly appreciate advice
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Would greatly appreciate advice
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Well Kari, You know my drill. And though I do think there is some risk eating from the gluten-free menus, I am beginning to find that it is relatively safe (I am 3 months into the process).
Cross-contamination is always a concern, and I am sure that it does occur, but I am finding some restaurants are even sensitive to this.
I have been told by this board that 100% avoidance of gluten is required, but I am sure their is a PPM (parts per million level) where even certified gluten-free foods have some level of gluten.
As a weary road warrior, I would simply recommend to your son that he strives to remain gluten free on the road by eating from the gluten free menus, keeping his food choices as close to paleo as possible, and where possible (not usually practical for me) to even cook for himself. We do not live in a perfect, gluten-free world, but if he follows these steps and feels he is improving ( or not worsening) then he will know he is on the right track. His body will tell him.
Good luck to you and your son, Kari.
Rich
Cross-contamination is always a concern, and I am sure that it does occur, but I am finding some restaurants are even sensitive to this.
I have been told by this board that 100% avoidance of gluten is required, but I am sure their is a PPM (parts per million level) where even certified gluten-free foods have some level of gluten.
As a weary road warrior, I would simply recommend to your son that he strives to remain gluten free on the road by eating from the gluten free menus, keeping his food choices as close to paleo as possible, and where possible (not usually practical for me) to even cook for himself. We do not live in a perfect, gluten-free world, but if he follows these steps and feels he is improving ( or not worsening) then he will know he is on the right track. His body will tell him.
Good luck to you and your son, Kari.
Rich
"It's not what I believe. It's what I can prove." - A Few Good Men
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Gabes-Apg
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Kari
before MC i was eating gluten free (80% of the time) yeast free and lactose for at least 8 - 10 years.
When i think about when the MC symptoms first started to when they got chronic i wonder if eating minimal gluten, yeast etc delayed the chronic MC symptoms.
My concept is that we only have one bowel, if you put the cells under excessive stress over time they do lose the ability to rebuild. your son has to make the decision how much does he want to risk wellness later in life?
the way my body is now with MC, if someone came to me 5 -10 years ago and said by totally removing gluten from your diet you can avoid chronic MC symptoms in the future (based on someone telling me how long it takes to get wellness, how bad the worst MC day is etc), I would have adopted a total gluten free diet.
hope this helps...
glad to hear you are feeling a bit better
before MC i was eating gluten free (80% of the time) yeast free and lactose for at least 8 - 10 years.
When i think about when the MC symptoms first started to when they got chronic i wonder if eating minimal gluten, yeast etc delayed the chronic MC symptoms.
My concept is that we only have one bowel, if you put the cells under excessive stress over time they do lose the ability to rebuild. your son has to make the decision how much does he want to risk wellness later in life?
the way my body is now with MC, if someone came to me 5 -10 years ago and said by totally removing gluten from your diet you can avoid chronic MC symptoms in the future (based on someone telling me how long it takes to get wellness, how bad the worst MC day is etc), I would have adopted a total gluten free diet.
hope this helps...
glad to hear you are feeling a bit better
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Kari,
That's a very interesting question, and I'm sure that everyone has their own opinion, (and I'm also sure that there is no absolutely "right" answer, since we are all different), but FWIW, here are my thoughts:
To add to what Gabes said, if he doesn't already have celiac disease, (which we really don't know at this point, since he could be asymptomatic), then obviously there are two possibilities - he may never develop the disease, or he may develop it, at some unpredictable point in time. So, if he's lucky, it won't matter what he does. If he doesn't want to test his luck, and he wants to avoid ever developing the disease, he can preempt it by avoiding gluten 100%, just as if he had the disease. That way, hopefully, if he ever accidentally eats any gluten, he won't react to it, since the disease will never have a chance to develop, (assuming that he does not have it now).
Eating a low-gluten diet might postpone development of the disease, but there are certainly no guarantees, because as we have seen, once we are sensitive to gluten, avoiding it seems to make us even more sensitive.
I'm 99.9% sure that he would test negative to the classic celiac blood tests, (with such a low stool test result), but just to be absolutely sure that he doesn't already have celiac disease, asking his doctor to do the celiac blood tests now, (before he starts the diet - if he decides to start the diet), would remove any question about that possibility. A positive result would remove any doubt about what he should do about his diet, also, of course.
I really don't believe that it would be positive, so he will still be faced with the same decision about his diet, but it may be better to cover all the bases, just in case.
Personally, if I were in his shoes, knowing what I know now, I would immediately adopt a strict GF diet, and never look back, but on the other hand, if I didn't know what I know now, I would be just like the doctors who recommend a normal diet for anyone who tests negative for celiac disease. And I would be just like the average person in the general population who knows virtually nothing about celiac disease - I would wonder what all the fuss is about, and I would feel sorry for those poor souls who are unlucky enough to come up with such a "rare" disease, and I would continue to eat whatever struck my fancy.
In all honesty, knowing what we know about the fact that avoiding gluten seems to make us even more sensitive, (once we develop an initial sensitivity to it), I would be afraid to adopt a low-gluten diet, since there's a possibility that it could accelerate the development of the disease. There's no question that eating a reduced-gluten diet would be beneficial for postponing the disease if he were not already producing antibodies to gluten. The fact that those antibodies already show up in his intestines, change the rules of the game, IMO. These are uncharted waters, of course, so your guess is as good as mine.
Love,
Tex
That's a very interesting question, and I'm sure that everyone has their own opinion, (and I'm also sure that there is no absolutely "right" answer, since we are all different), but FWIW, here are my thoughts:
To add to what Gabes said, if he doesn't already have celiac disease, (which we really don't know at this point, since he could be asymptomatic), then obviously there are two possibilities - he may never develop the disease, or he may develop it, at some unpredictable point in time. So, if he's lucky, it won't matter what he does. If he doesn't want to test his luck, and he wants to avoid ever developing the disease, he can preempt it by avoiding gluten 100%, just as if he had the disease. That way, hopefully, if he ever accidentally eats any gluten, he won't react to it, since the disease will never have a chance to develop, (assuming that he does not have it now).
Eating a low-gluten diet might postpone development of the disease, but there are certainly no guarantees, because as we have seen, once we are sensitive to gluten, avoiding it seems to make us even more sensitive.
I'm 99.9% sure that he would test negative to the classic celiac blood tests, (with such a low stool test result), but just to be absolutely sure that he doesn't already have celiac disease, asking his doctor to do the celiac blood tests now, (before he starts the diet - if he decides to start the diet), would remove any question about that possibility. A positive result would remove any doubt about what he should do about his diet, also, of course.
I really don't believe that it would be positive, so he will still be faced with the same decision about his diet, but it may be better to cover all the bases, just in case.
Personally, if I were in his shoes, knowing what I know now, I would immediately adopt a strict GF diet, and never look back, but on the other hand, if I didn't know what I know now, I would be just like the doctors who recommend a normal diet for anyone who tests negative for celiac disease. And I would be just like the average person in the general population who knows virtually nothing about celiac disease - I would wonder what all the fuss is about, and I would feel sorry for those poor souls who are unlucky enough to come up with such a "rare" disease, and I would continue to eat whatever struck my fancy.
In all honesty, knowing what we know about the fact that avoiding gluten seems to make us even more sensitive, (once we develop an initial sensitivity to it), I would be afraid to adopt a low-gluten diet, since there's a possibility that it could accelerate the development of the disease. There's no question that eating a reduced-gluten diet would be beneficial for postponing the disease if he were not already producing antibodies to gluten. The fact that those antibodies already show up in his intestines, change the rules of the game, IMO. These are uncharted waters, of course, so your guess is as good as mine.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Kari,
I don't know if your son has other conditions that might be a result of his gluten intolerance. For example, asthma, depression, skin problems etc. These may well be at a level of being only a minor inconvenience for him. If going gluten free helps with these it would be a factor to take into consideration.
The other thing is his age, social situation and personality. Without the motivation of gluten making you feel crook, it is hard to be super vigilant. This group, because of our life stages and health, tend to err on the side of doing of whatever it takes to manage our health. When your health is better, other parts of the quality of life equation are equally important. In an ideal world avoiding every trace of gluten makes sense. In the real world we all make compromises and the trick is to be comfortable with those choices - not to feel guilty at creating a standard and then not living up to it. Stress from not meeting our own expectations can have an impact on our health too.
Lyn
I don't know if your son has other conditions that might be a result of his gluten intolerance. For example, asthma, depression, skin problems etc. These may well be at a level of being only a minor inconvenience for him. If going gluten free helps with these it would be a factor to take into consideration.
The other thing is his age, social situation and personality. Without the motivation of gluten making you feel crook, it is hard to be super vigilant. This group, because of our life stages and health, tend to err on the side of doing of whatever it takes to manage our health. When your health is better, other parts of the quality of life equation are equally important. In an ideal world avoiding every trace of gluten makes sense. In the real world we all make compromises and the trick is to be comfortable with those choices - not to feel guilty at creating a standard and then not living up to it. Stress from not meeting our own expectations can have an impact on our health too.
Lyn
Kari,
I also wish I knew 10 years ago what I know now. I did not have classic symptoms at first either, but in retroscpect I was gluten intolerant. My trigger was a flu vaccine. I didn't develop chronic D until 17 months later, but during those 17 months I developed other problems, like peripheral neuropathy and joint/muscle pain, all of which went away when I went GF. My value when I got tested at Enterolab was only 17, so not high but definitley a problem. I suppose another option is to wait and see. He can get tested in a year and see if the number is rising, and if so then he should go GF. My son (age 11) also has a DQ2 gene (from his dad, not me) and I am so glad I got him tested - his Enterolab score was 165 and we have seen great improvement in some symptoms he has since removing gluten, dairy and corn. He used to have asthma, eczema and chronic constdpation and now he has none of these. He's getting to an age where he doesn't always want to be compliant, so the fact that he is actually more symptomatic since we removed these things, as Tex pointed out, is a good thing and hopefully will help to keep him compliant.
Love,
Mary Beth
I also wish I knew 10 years ago what I know now. I did not have classic symptoms at first either, but in retroscpect I was gluten intolerant. My trigger was a flu vaccine. I didn't develop chronic D until 17 months later, but during those 17 months I developed other problems, like peripheral neuropathy and joint/muscle pain, all of which went away when I went GF. My value when I got tested at Enterolab was only 17, so not high but definitley a problem. I suppose another option is to wait and see. He can get tested in a year and see if the number is rising, and if so then he should go GF. My son (age 11) also has a DQ2 gene (from his dad, not me) and I am so glad I got him tested - his Enterolab score was 165 and we have seen great improvement in some symptoms he has since removing gluten, dairy and corn. He used to have asthma, eczema and chronic constdpation and now he has none of these. He's getting to an age where he doesn't always want to be compliant, so the fact that he is actually more symptomatic since we removed these things, as Tex pointed out, is a good thing and hopefully will help to keep him compliant.
Love,
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Hi all,
My son read your responses and decided to go gluten free and has been at it for a week now. As I think I mentioned, he experienced some intenstinal discomfort that he talked to his PCP about during a visit to have his thyroid checked (about half a year ago). The doctor did some manual "checking" by feeling around with his hand, applying pressure, etc. and told him that he didn't think it was anything to be concerned with.
According to my DS, he has had the same slight discomfort ever since, but had decided to "just live with it". Here comes the good news!!! The discomfort is gone after one week of being gluten free!!! He is thrilled, and also said that he has no problem managing the gluten free life style.
Thanks again everyone for helping me get him onboard!!! The next chapter in this saga is that we've decided to have the kids and my DIL checked out. I will be sending for 4 more test kits from Enterolab. Being proactive sure beats living with this miserable disease!!!
Love,
Kari
My son read your responses and decided to go gluten free and has been at it for a week now. As I think I mentioned, he experienced some intenstinal discomfort that he talked to his PCP about during a visit to have his thyroid checked (about half a year ago). The doctor did some manual "checking" by feeling around with his hand, applying pressure, etc. and told him that he didn't think it was anything to be concerned with.
According to my DS, he has had the same slight discomfort ever since, but had decided to "just live with it". Here comes the good news!!! The discomfort is gone after one week of being gluten free!!! He is thrilled, and also said that he has no problem managing the gluten free life style.
Thanks again everyone for helping me get him onboard!!! The next chapter in this saga is that we've decided to have the kids and my DIL checked out. I will be sending for 4 more test kits from Enterolab. Being proactive sure beats living with this miserable disease!!!
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Kari,
Now that is good news. Getting rid of a long-term problem, (the discomfort), so quickly, is a powerful reinforcement for validating the diet. Good for him. It's interesting how some people have no trouble adjusting to the diet, and for others, it's virtually "mission impossible".
It will be interesting to see how the test results for the rest of the family turn out.
Love,
Tex
Now that is good news. Getting rid of a long-term problem, (the discomfort), so quickly, is a powerful reinforcement for validating the diet. Good for him. It's interesting how some people have no trouble adjusting to the diet, and for others, it's virtually "mission impossible".
It will be interesting to see how the test results for the rest of the family turn out.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex - unlike me, my son has never been a big carb and sweets fan - he loves meat above anything - so, I attribute his ease in transitioning to this.
Gloria - your grandson sounds like mine - how old is he? My little Aidan turns 7 on new year's eve, and he is the most picky eater I've ever seen - reminds me of myself when I was little. He LOVES carbs and sweets and it's hard to get him to eat anything else. Of the 3, he is the one I'm really worried about, because he has lots of allergies and is always sniffling. It will be hard to transition him to gluten free if need be.
Love,
Kari
Gloria - your grandson sounds like mine - how old is he? My little Aidan turns 7 on new year's eve, and he is the most picky eater I've ever seen - reminds me of myself when I was little. He LOVES carbs and sweets and it's hard to get him to eat anything else. Of the 3, he is the one I'm really worried about, because he has lots of allergies and is always sniffling. It will be hard to transition him to gluten free if need be.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Kari,
My grandson is 6. He ate very well when he was a baby, but she thinks that it all went downhill when she had morning sickness with her daughter. She was sick for months and he didn't eat well during that time, and has never improved.
Gloria
My grandson is 6. He ate very well when he was a baby, but she thinks that it all went downhill when she had morning sickness with her daughter. She was sick for months and he didn't eat well during that time, and has never improved.
Gloria
You never know what you can do until you have to do it.