How Strict Do We Need To Be?

[ravenwoodglass]

TO RADMAN -

Will address this to you but anyone is invited to reply. There is a post here regarding ataxia that 'went away' after 6 months gluten-free. This doesn't make sense to me. I was at once time a Rehabilitation Therapist and I alslo have a serious ataxia. Everything I know - medically - tells me that cerebellum damage that is visible on MRI does not go away. Three neurologists have told me that I may well not get worse but certainly will not get better.

It would seem that gait, balance and other gluten induced neuro symptoms that had not caused permanent brain damage could well improve but that actual brain damage would not. Some of my earlier symptoms - e.g. the strange, wavy, uneasy feeling that I have had in my head for the past twenty years is now all but gone. There is however no improvement whatever in the ataxia and, as I said, I have been told that I should not expect any. My own experience dealing with various types of neurological damage would tell me that this advice is sound.

Is it possible that this 'recovery' from ataxia was actually recovery from a symptom rather than recovery from actual damage to the brain? Your comments please. Claire

I would be interested in the answer to this to. I suspect that it is just the symptoms mainly because it is the first symptom my son and I see. I believe there must also be a strong seperate genetic contribution cause only two of our Gluten sensitive family members have this. We should probably do the gene tests sometime just to see the differences. Interestingly we are also the ones who get strongly depressed from gluten exposure also. Lots of things about this for furthur research.

[radman]

It appears from the posts on this thread, and from what I've read, that the ataxia is reversible with a gluten free diet.

Now if the damage to the cerbellar neurons caused cell death, there can be no recovery since we all know CNS neurons do not regenerate (thus spinal cord injury is permanent).

However, it is possible that the autoimmune injury to the cerbellar neurons (cells) does not cause the death of those cells (as typically happens with a stroke for example). It may just cause altered function. The finding of "unidentified bright spots" (UBOs) on MRIs of celiac patients with CNS manifestations implies possible myelin injury. Myelin is sort of an insulating sheath around the nerve fibers. The cells that make myelin (myelinocytes) are not neurons, and they have some capacity for repair, and possibly regeneration. Thus it is entirely possible that the ataxia is reversible. Hopefully this makes sense, and realize that it is just educated conjecture based on the information available.

Nancym: I don't know for sure, but it is certainly possible that eradicating the bacteria could reverse or at least improve the condition. By eliminating the offending antigen (in this case the bacteria), you would be eliminating the stimulus for the immune response/antibody production. You would then expect the antibody levels to go down, thus less antibody to cause cross reactive damage.

Also, I don't think it is gluten that makes us produce too much zonulin, but rather our genes. It may then be that the genetically controlled production of too much zonulin is the root cause of celiac problems. Too much zonulin allows gluten "in" and then the immune response occurs.

Finally, I've sent for the full text review article referenced previously which mentions an allowable gluten intake of 10 to 100 mg for celiacs. I have not seen this referenced elsewhere. If the data is strong, I plan to try to get more information on the amount of gluten in typical servings of common foods to see if it is practical to eat a small amount of "low gluten" containing food and stay within this limit (eg. "malt flavoring", "modified food starch", etc.).

[VydorScope]

Finally, I've sent for the full text review article referenced previously which mentions an allowable gluten intake of 10 to 100 mg for celiacs. I have not seen this referenced elsewhere. If the data is strong, I plan to try to get more information on the amount of gluten in typical servings of common foods to see if it is practical to eat a small amount of "low gluten" containing food and stay within this limit (eg. "malt flavoring", "modified food starch", etc.).

What will you use to measure any internal response or damage to it? What small damage building up long term>?

[Guest Robbin]

It appears from the posts on this thread, and from what I've read, that the ataxia is reversible with a gluten free diet.

Now if the damage to the cerbellar neurons caused cell death, there can be no recovery since we all know CNS neurons do not regenerate (thus spinal cord injury is permanent).

However, it is possible that the autoimmune injury to the cerbellar neurons (cells) does not cause the death of those cells (as typically happens with a stroke for example). It may just cause altered function. The finding of "unidentified bright spots" (UBOs) on MRIs of celiac patients with CNS manifestations implies possible myelin injury. Myelin is sort of an insulating sheath around the nerve fibers. The cells that make myelin (myelinocytes) are not neurons, and they have some capacity for repair, and possibly regeneration. Thus it is entirely possible that the ataxia is reversible. Hopefully this makes sense, and realize that it is just educated conjecture based on the information available.

Nancym: I don't know for sure, but it is certainly possible that eradicating the bacteria could reverse or at least improve the condition. By eliminating the offending antigen (in this case the bacteria), you would be eliminating the stimulus for the immune response/antibody production. You would then expect the antibody levels to go down, thus less antibody to cause cross reactive damage.

Also, I don't think it is gluten that makes us produce too much zonulin, but rather our genes. It may then be that the genetically controlled production of too much zonulin is the root cause of celiac problems. Too much zonulin allows gluten "in" and then the immune response occurs.

Finally, I've sent for the full text review article referenced previously which mentions an allowable gluten intake of 10 to 100 mg for celiacs. I have not seen this referenced elsewhere. If the data is strong, I plan to try to get more information on the amount of gluten in typical servings of common foods to see if it is practical to eat a small amount of "low gluten" containing food and stay within this limit (eg. "malt flavoring", "modified food starch", etc.).

Radman, Thank you for this insightful post. I feel renewed hope that the longer I am gluten free, perhaps the neurological damage I have will improve. Also, to echo Vincent's concern-What about minute damage built up over time? Would there be a recovery time between intake, for instance, after ingesting, a few days' reprieve? Again, how would you measure? Also, are you going to be a "guinea pig"? Please be careful with your health!!!!!

[Nantzie]

I would say then maybe you should see a GI, just to keep tabs on things. Maybe an endoscopy now, and then another in six months and another in a year? It would be interesting to find out if you do have classic celiac, and if so, the progression, if any, with reduced gluten rather than gluten-free.

Nancy

[radman]

Hi all,

thanks for the concern about my health, I am pretty foolish (at least my wife frequently tells me so), however, I am not planning on eating a low gluten diet yet, I'm just wondering if it would be possible.

For now I am trying to stick with a complete gluten free diet, though I keep making stupid mistakes, like that bite of clam chowder yesterday. Like 2 seconds of thought wouldn't have told me there is likely to be flour in chowder? sheesh, I amaze myself sometimes. I suspect I'll get better at it with time.

So far, the only info I've seen on gluten content makes it look like limiting intake to 10 to 100 mg of gluten won't allow any significant amount of bread or pasta (like 1/50 th of a slice of bread, whoopee )

The only possibility I am really holding out for is:

1. Not having to be obsessive about cross contamination issues, or buns touching burgers, etc.

2. Maybe an occasional lapse, eg. A real pizza for my birthday? (my symptoms thus far are not severe enough to preclude this)

I should, of course, see a gastroenterologist, but I am relatively new to my area and haven't yet found someone I trust.

[nettiebeads]

I have to agree with Vydorscope on this. My health is very important to me and I will not risk it knowingly in any way. I didn't have any symptoms while regularly ingesting cereals with malt. But was tired, brain fogged and developed peripheral neurapathies. I regularly thank God for this site since it showed me the errors of my ways and diet. The last time I got knowingly cross contaminated was when I spent the night at the hospital with my mother. Around 3:00 a.m. I was hungry so I had a two very small bites of her fruit cocktail that she had already had some of - I used a different spoon, but she had already eaten her meal (gravy or something flour based in it) then used her same spoon for the fruit cup. I suspected it would be cross contaminated, but I was so hungry... And I'm sure that the amount of gluten transferred from her spoon to the cup would have been miniscule, but I did get a really good reaction. Extreme fatigue, brain fog, aches.... The longer you are completely 100% gluten-free, the more you will be able to pinpoint the effects of gluten to your body. I don't play with dynomite or poison willingly, and to me gluten is just as dangerous.

just my opinion.

Annette

[VydorScope]

Hi all,

thanks for the concern about my health, I am pretty foolish (at least my wife frequently tells me so), however, I am not planning on eating a low gluten diet yet, I'm just wondering if it would be possible.

For now I am trying to stick with a complete gluten free diet, though I keep making stupid mistakes, like that bite of clam chowder yesterday. Like 2 seconds of thought wouldn't have told me there is likely to be flour in chowder? sheesh, I amaze myself sometimes. I suspect I'll get better at it with time.

So far, the only info I've seen on gluten content makes it look like limiting intake to 10 to 100 mg of gluten won't allow any significant amount of bread or pasta (like 1/50 th of a slice of bread, whoopee )

The only possibility I am really holding out for is:

1. Not having to be obsessive about cross contamination issues, or buns touching burgers, etc.

2. Maybe an occasional lapse, eg. A real pizza for my birthday? (my symptoms thus far are not severe enough to preclude this)

I should, of course, see a gastroenterologist, but I am relatively new to my area and haven't yet found someone I trust.

Well I am not so sure a GI doc could help in in this. No offense to htem, but they appear only to be able to dectect bad cases of damage/etc. Low levels of damage would likely to take years to notice. I have a post burreid here somehwere on my opinion about the poorness of the bisopy test useing my degree in statistics to show how , IMO, its useless. But I wont bog you down with it.

I would never delibertly ingest glutne, such as you famous hmaburger bun example, but I wont shy away from resturants completly. I eat at the Sante Fe Steak house sometimes, I jsut order all gluten-free items, (back patoteo, etc) and I tell the staff about my condition and I seem to get along fine. I find if your nice to the staff, in most decent places, you do not have any problems. In most cases the manager freely comes to me to make sure it s all good and etc. THen I leave a nice tip and everyone is happy. Esply VISA LOL

[Canadian Karen]

One thing that keeps me on the straight and narrow is the fact that in our lives, on a day to day basis, there will be exposure to gluten that we have absolutely control over. Therefore, for instance, let's say all these "exposures beyond our control" keep us within the "safe" limit of 10 to 100 ppm's. Fine. But then what happens when you add the "careless" exposures i.e. the little pieces of bun left on the pattie of a hamburger if you just remove the bun, or the occasional "treat", as in your birthday. Keep in mind also that it is human nature (and know this would be true for me), that once I gave myself the "green light" to treat myself on my birthday, pretty soon it would lead to more and more "treats", i.e. anniversary, Christmas dinner, Easter dinner, Thanksgiving........ What if all those additional little exposures are the ones that push you over the acceptable "100" ppm?

I guess I am in the "better safe than sorry" camp.......

Take care,

Karen

[radman]

You guys are so dang sensible.

Isn't anyone else here reckless and irresponsible? (jusk kidding folks )

I've been considering why I seem to be the only one (well actually there may have been one or two other posts thinking like me) willing to even consider an occasional teensy weensy lapse now and then.

Possibilities:

1. My symptoms are much less than everyone elses (no apparent brain fog, aches, arthritis, or severe GI reactions)

2. It's too early for me to recognize just how much gluten is affecting me, and I've become accustomed to it. Over time it may then become more clear.

3. I have a weird lack of concern for my own health

4. Denial

5. All of the above

Probably number 5...

[Fiddle-Faddle]

Hi, radman,

I was actually wondering (don't shoot, guys!) if small amounts of the "right " kind of gluten (fermented, like sourdough) might not only avoid triggering the celiac thing, but also might help avoid the post-celiac-diet high incidence of developing other food sensitivities....

(edit) I mean from childhood in someone who shows no signs of celiac, not in people with the fullblown Hyper-Celiac. And I'm probably wishfully thinking that it would work for me, too, as I never had symptoms until recently....

[VydorScope]

You guys are so dang sensible.

Isn't anyone else here reckless and irresponsible? (jusk kidding folks )

I've been considering why I seem to be the only one (well actually there may have been one or two other posts thinking like me) willing to even consider an occasional teensy weensy lapse now and then.

Possibilities:

1. My symptoms are much less than everyone elses (no apparent brain fog, aches, arthritis, or severe GI reactions)

2. It's too early for me to recognize just how much gluten is affecting me, and I've become accustomed to it. Over time it may then become more clear.

3. I have a weird lack of concern for my own health

4. Denial

5. All of the above

Probably number 5...

I am guessing #2 is a huge factor. When I did my fisrt gluten challenge (my defintion of that is going 100% gluten-free for an extended bit, then eating gluten and seeing what happens), I swore I did not feel any better gluten-free. I was like Whats the dif? Then I ate some gluten as planed, and OH MAN it was bad. I suddnely realize that I got better slowly so did not notice... but the imedata return to full symptons I did notice!

And if you did not have a good dose of #4 I would worry about you.

[plantime]

I'm casting my vote for #5. Those are all of the reasons I was not super careful in the beginning, then, like Vincent, I did a challenge and learned the difference. No more denial, I had to be very careful all the time. I do eat out at restaurants, but I make sure to cultivate a good rapport with the staff. I may not be their best friends, but they like the tips they get, I like the service I get, and we all get along just fine.

[Canadian Karen]

There is a #6 :

Anger. I was so pissed off sometimes out of frustration I almost caved......

Karen

[penguin]

Given that you're a doctor, I would say that number three is a strong contender....

As an example, my "second mom"s late husband was a world renound orothopaedic surgeon, and yet both he and his wife (a teaching nurse) had a somewhat reckless concern for their health at times. Sure, they ate right and exercised, but they rode around without seatbelts and drank in the car. They also had this funny little smoking habit of sneaking a few cigarettes a day. My mom got onto them all the time, especially about the no seatbelt thing (both my mom and second mom were OR nurses in the trauma unit together in ancient days). I've known many other medical professionals with the same kind of reckless health behavior.

Isn't there a saying about the cobbler's children going without shoes?

Number 5 is definitely my solid vote.

[Fiddle-Faddle]

I find that dark chocolate is very therapeutic for anger--would it exacerbate the collagenous colitis?

[Rusla]

I thought about caving but the horrible extreme reactions that happened with just crumbs is enough to stop me for going off. If I didn't get so sick and have dh so bad I probably would have cheated a thousand times by now.

I am not one who likes to suffer and that is what I go through when I get the smallest amount. I would rather live without than live in pain.

[Canadian Karen]

I find that dark chocolate is very therapeutic for anger--would it exacerbate the collagenous colitis?

No, but it would exacerbate my weight scale!

I am still desperately trying to lose the weight I put on with the prednisone. Started a really, honest to goodness "lose weight" diet last week. First in my lifetime. See, the good thing about diarrhea 20 times a day is that I used to be able to eat junk food until it was coming out of my battoozies and I wouldn't gain an ounce. All that changed after I had the prednisone.

I have already lost 7 lbs. I have cut out ALL chocolate, chips, etc.etc. I also have bought one of those pedometer/calorie counters and go for long walks every day now. It has an FM radio attached to it. I find that if I listen to music while walking, I can walk twice as far. Another funny thing too, if I chew Trident while walking, it makes it much easier (I was getting gas pains from the gas working it's way up my body, but the Trident seems to get me burping alot while I walk, which is an added plus because I don't have to worry about working that gas out of my system later!)

Hugs.

Karen

[Rusla]

No, but it would exacerbate my weight scale!

I am still desperately trying to lose the weight I put on with the prednisone. Started a really, honest to goodness "lose weight" diet last week. First in my lifetime. See, the good thing about diarrhea 20 times a day is that I used to be able to eat junk food until it was coming out of my battoozies and I wouldn't gain an ounce. All that changed after I had the prednisone.

I have already lost 7 lbs. I have cut out ALL chocolate, chips, etc.etc. I also have bought one of those pedometer/calorie counters and go for long walks every day now. It has an FM radio attached to it. I find that if I listen to music while walking, I can walk twice as far. Another funny thing too, if I chew Trident while walking, it makes it much easier (I was getting gas pains from the gas working it's way up my body, but the Trident seems to get me burping alot while I walk, which is an added plus because I don't have to worry about working that gas out of my system later!)

Hugs.

Karen

Karen, where did you get your pedometer and was it expensive? Having the big d all day never helped me lose weight. You think it would have but all I did was gain.

[Canadian Karen]

Karen, where did you get your pedometer and was it expensive? Having the big d all day never helped me lose weight. You think it would have but all I did was gain.

Walmart. $20.00. There was another kind that didn't have the radio that was $13.00.

I also saw them at Zellers for around the same price. They were at Shoppers Drug Mart, but they are $29.00 there.......

You can find them in the sporting section with all the walking/running/jogging/bicycling stuff.......

Karen

[Guest BERNESES]

radman- I'm with ChelsE. I think #5 is my vote. Most people go through a healthy dose of denial (which if you're not having symptoms or very minor symptoms must be NORMAL). Like vydorScope said, we'd worry about you if you didn't question. and doctors are notorious for being bad patients (best friend is a doctor- trust me on this one. If i was HER doctor, I'd kill her! can't even get her to take a multi-vitamin!!!!).

I think, if you really want to see what it's doing to you, go strictly gluten-free for 2 months. then do your own gluten challenge. This is what I had to do for my biopsy. i was supposed to eat gluten for 14 days before the biopsy and that first pizza was great. 10 days in to eating gluten i gave up and about 6 days later I ended up in the ER because i really thought i was going to die. Of course when my GI found no damage, he said that the gluten challenge made me ssick because I had convinced myself it would, but well... that's anaother story.

[happygirl]

I am going to admit, guiltily, that if my symptoms weren't as severe as they are, that I would definitely not be as careful as I am now, so I understand where you are coming from, Radman. It took getting the majority of gluten out of my diet (majority = all bits of gluten except for cross contamination). Once I was "almost" healthy, I could pinpoint my reactions and realized I was still getting tiny, tiny amounts of gluten and having very severe reactions. I get sick anywhere I eat out, I don't get sick when I eat at home. Seems pretty easy to understand but I think I'm partly still in denial.

So I am going to vote for #1 as one of your main reasons for wondering about the strictness of the diet. I get sick (immediate D, and then the other symptoms) if I ingest pretty much any miniscule amount....got sick at Outback the other night with my husband and friends. That's great dinner conversation, isn't it? So, although I know that I am keeping gluten out of my system for my overall/longterm health, it also provides me positive reinforcement to NOT even risk it. When I risk it, I get sick everytime and its usually out in public. GREAT TIMES.

And I'm still in denial sometimes, too! I get upset and say I just want to be normal. My husband kindly reminds me that I was never normal, even before the Celiac (which we affectionately refer to as "the Celi-crap") Whatever path you choose to take in regards to gluten, because of many on this board, you will have a greater insight than you would from any random GI (mine included).

[Nantzie]

Definitely #5.

I see you're in Fredricksburg! I used to live on Quantico Marine Corps Base when I was like ages 5-8. I still miss it. Beautiful place.

Nancy

[Guest Robbin]

Radman, I have to admit too, that if I were in your shoes, I would be sooooo tempted also. If I were younger, had not been sick for so long, and had severe reactions, yeah, I'd be tempted. That's why you need this forum! So you can see what happens long-term and how awful it CAN be. I always tell my sons "Do the best you can possibly do, and leave the rest to God."

[Nancym]

You're not alone in your desire to fudge (so to speak):

https://www.celiac.com/st_prod.html?p_prodid=1314

The most surprising response, however, was how many people cheat on their diets—a full 43 percent! Some 13 percent actually cheat 20-40 times per year or more. The main excuses for cheating: 1) People missed a particular item too much to go without it; and 2) Gluten-free foods are not always available or are too expensive. These were the same folks who got the spelt question wrong—the ones who were just diagnosed, right? We have more work to do...