How Strict Do We Need To Be?

[Canadian Karen]

I just re-read my post and realize that is sounds kinda "preachy". That was not my intention. I was attempting to point out that there are other factors that are taken into consideration when people decide how zealous they are in regards to this diet.

Karen

[gfp]

[sfd

[Guest BERNESES]

I think an interesting question here is what is a safe level of gluten-exposure. someone please correct me if I'm wrong, but in Europe gluten free foods must be less than 200 ppm of gluten. Is that right? Here's the link:

https://www.celiac.com/st_main.html?p_catid=117

But I know, from an unfortunate personal experience, that I react to 30 ppm so food rendered gluten free in Europe would make me very sick. would it actually damage my intestines? I don't know. It seems like even within the research a level that to me is extremely high is considered safe. I think there's just too much we don't know.

Radman- glad you're sticking around.

[nikki-uk]

I just wrote a long and lengthy post which just disappeared!(don't you hate it when that happens)

Suffice to say Berneses is right.

In the UK food which has levels of gluten between 20-200parts per million can be declared Gluten Free.

Coeliac UK deem this level safe for 'most' coeliacs.

There have been no long term studies on coeliacs who have eaten Codex A on a regular basis for any number of years.

This is often a hot topic on the UK message boards I visit,as there are loads of coeliacs who react to the deemed 'safe' levels.

My husband doesn't react-but tries to knowingly avoid it-as who knows what effects it could have long term on him-if not in his bowel then his immune system.

He already has another autoimmune disease(psoriatic arthritis) under his belt-and he wants to do all he can not to put his already damaged immune system under stress.

Recent biopsies have proved that the gluten-free diet is not helping his villi heal-(the point of no return?)but at least it's not getting worse.

Being as strict as he can is about the Only thing he can do to try and stop the debilitating effects of celiac disease.

He too (like Karen) has to think of our kids-who want him to be as healthy as possible for as long as possible.

[radman]

I think besides my celiac I should get tested in psychiatry for my persistence in coming back and blathering on to you good people. But in the meantime...

Hey gfp, all of what you say may be true, but I can tell you that worrying about all the possible problems that could possibly be related based on very inconclusive science is not my bag (as Austin Powers would say). I see these types of things all the time, and I do mean ALL the time. One year it's silicone in the breast causing problems, the next year the silicone is OK. Then shark cartilage cures cancer, then it doesn't. Then caffeine is linked to pancreas cancer, then its not. Then alcohol is bad for you, then it prevents heart disease, on and on and on and on... I could go on for a week.

The common thread to all the BS is that the "links" and "evidence" are often so preliminary that it is completely unreliable. A lot more work is required to PROVE the "links". We know how to do this in medical research, it's called phase I , II, and III (finally proof!) studies. The media and laypeople hear about the "links" at pre-phase I when it is just a gleam in a papa researcher's eye, and BAM everyone jumps on it like it is a fact. Then they carp about it when the data don't hold up and throw up their hands. Well, the problem is you have to let the work be done before you simply accept preliminary findings. So many people misunderstand this.

So in the end it is a personality thing. You can be bandied about by the latest winds of research, and worry about neurologic lesions that may or may not be related to celiac. Based on my experience, 99% of these things amount to nothing. The other 1% are real. Time will tell. If you avoid every molecule of gluten you don't have to worry about it, but as I've said, you do give up something to go this route. It's all a balance, pros and cons, the question is where is the proper balance? I don't claim to be correct, just the way I see it.

[penguin]

Personally, sadly, dishearteningly, any amount of gluten makes me feel like crap. I've felt like crap for the last three years, and I don't want to see anyone else feel like crap either.

You may have a threshold, but don't expect it to stay the same. The more gluten-free you are, the more sensitive you'll realize you are.

[Rusla]

I know that it takes a very small amount even just a few crumbs for me to react. So, I know my limitations and how awful I feel so cheating is not an option or something I even think about.

Radman--As you have found out, we become addictive...lol. I guess you come back to talk to us for the same reason we do, so that we can share experiences, gluten-free recipes and find out information that we can not find out from other sources. Also, it helps us all feel not so alone but yes, I think we all are off the wall kind of crazies and perhaps that is also a condition of Celiac Disease or Gluten intolerance.

As for Gorilla Munch, I am in Canada and get it either at health food stores or in Safeway.

Here is their website, they are in the US Open Original Shared Link. You could probably get a list of stores from them. Believe the Gorilla Munch is like corn pops only better.

[gfp]

fssffff

[Canadian Karen]

Just a couple of questions, Radman

1. Have you given any thought to having the gene testing done?

2. What is your ethnic origin?

Karen

[Nantzie]

The thing is that most of us finally came to celiac, and the gluten-free diet after years of pain, misery and hopelessness. It sounds like, although you have found an answer to your digestive issues, other possible areas of gluten-related issues either aren't there, or, since you haven't been 100% gluten-free, haven't become obvious.

The way you're approaching this is the way that people with (non-celiac-related) lactose intolerance approach dairy. Which I really don't see a problem with. I've had lactose intolerance since my late teens (which actually may have been one of my first signs of gluten intolerance).

The only way that impacted my life was that I ate my ice cream and drank milk only at home when I knew I would be home for the rest of the day. Other than gas and diarrhea for several hours afterwards, it just didn't impact my life all that much.

On the surface, celiac can seem the same way. And that's where you're at right now.

If all we had was gas and diarrhea, many of us would probably do the same thing. But most of us have experienced much, much worse for more years than we care to remember.

My experience over my adulthood was, looking back, I had periods of upsurge in symptoms followed by adapting my life to deal with them, then upsurge and adaption, upsurge and adaption, until I was in so much pain I could barely walk.

The thing is that many of us can look back at one of those first upsurges in symptoms and see how small it started. How it was only a nuisance at the time.

When you're standing on the tracks, a speeding train always looks small at first, but as it gets closer, it gets bigger. We can all see the train, and you're still in a position where you're saying, "What, that little thing in the distance?" But it's coming a lot faster than you'd think. We're all just trying to get you to step off the tracks.

It's kind of like when your child starts being friends with that trouble-making, swearing, bad attitude kid in 5th grade. You can just SEE that if your child doesn't make some other friends, this is going to get really bad if they're still friends in high school.

We're just trying to talk you down from the ledge, off the tracks and away from that punk kid.

One of the benefits of going for a biopsy is that you have to wait until after your biopsy is done before you go gluten-free. So many of us found out about the possibility of celiac on our own. During the month or two it takes for getting an appt with your GP, getting a referral to a specialist, and finally getting a biopsy done, most of us have read so much on this forum, asked so many questions, and taste tested so many gluten-free products that going 100% gluten-free really isn't all that hard.

Something I'm proposing is that maybe you need to take a similar period of time to figure how eating gluten-free is going to work in your life. Figure out what pizza crust you like, try some cereals, think about what you're going to take to work for your lunches and snacks. Start buying food prep items that will be exclusively gluten-free, such as wooden cutting boards and wooden utensils, toaster, and nonstick pans.

Then, when you're ready, and have most things figured out, make the commitment to go 100%, including cross-contamination for a few months.

So have you found a pizza crust you like yet? I like the one from Whole Foods' Gluten-Free Bakeshop personally. They also have an amazing Sun-Dried Tomato and Garlic Bread. It's actually some of the best bread I've ever had. Toasted with butter. YUM!!! I make my own croutons from their Sandwich bread too.

The way I approached it was just figuring out what I usually ate and tried to find a good gluten-free version. I was a big cheese and crackers person, and ended up finding Ener-G Wheat-Free Crackers (which are also gluten-free). They kind of remind me of Carr's Water Crackers. So I've got that.

If I remember right, you only tried doing gluten-free diet a week or so ago. So maybe the better approach for you is to take some time and figure things out so you don't get frustrated or rushed and have that bowl of rice krispies.

Nancy

[radman]

Hi Nantzie, I really appreciate your comments and have thought about them, and I think you have given me very good advice and perspective. I don't know that I'm totally convinced yet, but it is powerful logic. And I trying strict avoidance at this point.

And gfp, I looked at the article on neurologic manifestations of celiac, and it was very very interesting. I certainly believe that there is an association between gluten sensitivity and these various syndromes, most commonly cerebellar ataxia. It is a little scary, yes. However, it sounds like the etiology is cross reactivity of the antigliadin antibodies with epitopes in the neuraxis, particularly cerebellar Purkinje cells. There are many many parallels with other autoimmune illnesses, where such neurologic problems due to cross reactivity can occur. HOWEVER, their own estimates are that less than 10% of celiac patients would ever develop neurlogic problems, there may be unique genetics to these folks (DQ1), and there is no clear evidence that dietary gluten will impact this problem (they are only now conducting such a study), and certainly no evidence that hyperstrict gluten avoidance would prevent it from developing in folks who do have the genetic susceptibility. See my previous discussion of correlation vs. causation.

In the end, we still don't know about the impact of hyperstrict vs. less strict avoidance of gluten for this or just about any other outcome.

Karen, yes I do think I will get the full panel from enterolab with genetics when I get around to it (they say a round tuit is something everyone wants but apparently few ever obain ). And I am a typical American extracted from various European bastardized lineages, in my case mostly German and Scot.

Had a reheated pizza slice for lunch, and that potato flake crust may be starting to grow on me Thanks for the advice on Whole Foods and other choices.

[Canadian Karen]

Karen, yes I do think I will get the full panel from enterolab with genetics when I get around to it (they say a round tuit is something everyone wants but apparently few ever obain ). And I am a typical American extracted from various European bastardized lineages, in my case mostly German and Scot.

Have you come across in your research so far the reason why I asked such a question? Celiac is more prevalent in some ethnicities than others.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

The last thread, you will notice you are in good company!

Karen

[tpineo]

Thanks folks, and I do respect your wisdom of experience.

However, I don't for a minute believe that a celiac is a celiac is a celiac. Classical celiac occurs in children with severe malnutrition, bloated abdomens, profuse watery diarrhea with dehydration, even death.

Man, I could eat a loaf of bread a day and never come close to that type of reaction (in fact I have done that before). Actually, I believe the problem with under-diagnosing of celiac is due to the highly variable symptoms and severity for person to person.

I don't think exposure to gluten is causally related to other autoimmune diseases. These are likely due to genetic susceptibility to autoimmune problems, of which celiac is one. These genes travel in clusters and no doubt many individuals with celiac have the genes causing susceptiblity to these other autoimmune problems (thyroiditis, rheumatoid arthritis, etc.). However, I am 42 years old and have been exposed to gluten virtually every day, and I have absolutely no other autoimmune problems. At my age it is highly unlikely that I ever will.

Let's think about the medical problems associated with untreated or poorly treated:

Osteoporosis: This is my number one concern. I beleive I may already have some degree of this. It is a very serious problem. Studies have shown that there is a 10-20% increase in bone density in the first year or two on gluten free diet. As concerned as I am, thought, I suspect occasional slip ups will have very little impact (at least for my level of reaction). Osteo is caused by long term calcium deficiency, not occasional diminished absortpion.

Other Nutrient Deficiencies: Haven't researched this yet, but I don't have any problems I would relate to other nutrient deficiencies (eg. anemia, fatigue, skin problems, etc.). Besides, just like the above, this would be a long term issue.

Damage to Instestine: Hmm, don't like the sound of this, but everything I've read says it is completely reversible. Still...

Cancer: the real issue hear is small intestinal lymphoma. As I've said this extremely rare, and I'm only minimally concerned about this. Now, if one was a frequent cheater, or denied the diet altogether, that is a different story. It is chronic inflammation that leads to the malignancy.

These are the main issues. Given my level of reaction, I don't think I need to be too rigid. I avoid bread, pasta, etc. But I'll simply take the bun of the burger or the croutons off the salad myself.

This is my own non-expert assessment based on my own level of intolerance, I am not suggesting others do this, just wondering what types of assessments others are making for themselves.

By the way, trust and respect your doctor if he/she seems competent, but don't consider their advice etched in stone in most cases. The knowledge about what is ok and not ok for celiacs is just beginning to be studied. Hopefully more answers will be forthcoming from properly conducting clinical research. In the meantime there is a lot of judgement involved.

[tpineo]

One suggestion:

Do your bloodwork in 6 months following your partially gluten-free diet and see how you respond. If the bloodwork is still elevated, I'd consider a stricter gluten-free diet.

Tania

[gfp]

[qbfgfgsfgsfg

[ravenwoodglass]

Hi Nantzie, I really appreciate your comments and have thought about them, and I think you have given me very good advice and perspective. I don't know that I'm totally convinced yet, but it is powerful logic. And I trying strict avoidance at this point.

And gfp, I looked at the article on neurologic manifestations of celiac, and it was very very interesting. I certainly believe that there is an association between gluten sensitivity and these various syndromes, most commonly cerebellar ataxia. It is a little scary, yes. However, it sounds like the etiology is cross reactivity of the antigliadin antibodies with epitopes in the neuraxis, particularly cerebellar Purkinje cells. There are many many parallels with other autoimmune illnesses, where such neurologic problems due to cross reactivity can occur. HOWEVER, their own estimates are that less than 10% of celiac patients would ever develop neurlogic problems, there may be unique genetics to these folks (DQ1), and there is no clear evidence that dietary gluten will impact this problem (they are only now conducting such a study), and certainly no evidence that hyperstrict gluten avoidance would prevent it from developing in folks who do have the genetic susceptibility. See my previous discussion of correlation vs. causation.

In the end, we still don't know about the impact of hyperstrict vs. less strict avoidance of gluten for this or just about any other outcome.

Karen, yes I do think I will get the full panel from enterolab with genetics when I get around to it (they say a round tuit is something everyone wants but apparently few ever obain ). And I am a typical American extracted from various European bastardized lineages, in my case mostly German and Scot.

Had a reheated pizza slice for lunch, and that potato flake crust may be starting to grow on me Thanks for the advice on Whole Foods and other choices.

Radman, I just have to chime in here. I presented with primarily the neurological symptoms of celiac for over 30 years before the gut symptoms hit. From the time I was about 7 years old I have had to skim walls to know where my body was in space, I fell frequently, my lower leg reflexes were non-existant. By the time I was diagnosed my ataxia was so severe I was on Canadian Canes. The MRIs that were done showed nothing but what the neuro called UBO's. Unidentified bright objects, he shrugged and said he didn't know what they were but they were nothing to worry about. This was 4 years before diagnosis. I found out after about 1 year gluten-free and over 6 months ataxia free that in Europe these same UBOs are diagnostic for celiac. We hve a really long way to go in this country.

[gfp]

[quote gd

[jerseyangel]

gfp--Geesh--you could have been talking about me there in your last post! I developed reflux (bad enough to cause palpitations, acid reflux, pressure all the way up to collarbone, hiccups, breathing difficulties, etc.) I'm sure as a result of Celiac. My GI said it was gas, and to take Phazyme--he did NOT write it down, he was too busy closing my folder and ending the appt. I am seeing an Allergist now who is a DO. He is treating the reflux and the breathing problem because he said they go hand in hand. Right now he's calling what I have reflux and bronchial spasm--very close to saying Asthma, but will see how I do on the meds and I'll go back in 6 weeks. When I saw your statistic, I had to shake my head!

[gfp]

sdffdsd

[covsooze]

GERD is my main symptom, yet I was diagnosed with IBS Then all these years later it turns out that it's celiac disease all along. I didn't realise the palpitations and breathing difficulties went with the GERD - that's really reassuring to know, as no one has ever told me! Those 2 symptoms have been a lot better in the 2 months since I've been gluten-free, so I guess things are improving

[plantime]

This is a very good thread, thanks everyone. It is chock full of information and links, with a little attitude to spice it up!

[radman]

Hi all,

My strict gluten free 24 hrs was spoiled by a fortune cookie. I was told it had no flour, just cornstarch. Later I googled the company and checked the ingredient list--Dang...Wheat flour.

But that was last night and so far no ill effects

Hi Ravenwood. UBO's are not diagnostic of anything anywhere, believe me I see them all the time in my own patients. These are bright areas seen on T2 weighted MRI sequences and EXTREMELY common. They can be seen in demyelinating diseases (like MS), infections, CNS lymphomas, CNS AIDS, etc. etc. etc. This abnormality is very sensitive in that it detects a problem, but is very nonspecific in that it doesn't tell you what the problem is. It has to be correlated with the patients symptoms, history, and potential diagnoses. In other words, UBOs in a known celiac with no other explanation makes CNS celiac the most likely explanation, but seeing UBOs without knowing the patient has celiac (or may have celiac), would not be diagnostic, it could be any number of things. The radiologist would have to know that celiac CAN produce lesions like this first of all, and then he/she would have to know that celiac existed in the patient or was being considered.

As far as Europe vs. US, the medical communities are very closely tied. I know in my field, our professional society is populated with a large contingent of European physicians who come to our meetings , and we go to theirs. Our primary medical journal has lots of European papers and research. Generally speaking US medicine is "western" medicine, as is European medicine. Perhaps the gastroenterologists are not so "international".

By the way, did your balance problems (ataxia) improve with gluten free diet?

[key]

My son had UBO's on his MRI. He was scanned because he was underweight and he also has the birth marks for a genetic disease called Neurofibromatosis1. They were checking to see if he had a brain tumor on his pituitary gland that make him not grow. Turns out he has Celiac, but the UBO's can also go with children that have the Neurofibromatosis1. So I just wonder how significant UBO's are? Interesting though that they have correlation with celiac.

Monica

[mouse]

I was told that the UBO's on my brain MRI were just gas. Is that possible.

[radman]

A UBO, or bright area on T2 MRI, usually represents some type of injury to myelin (the "insulating" sheath around nerve fibers in the brain). The type of myelin injury appears to vary widely from complete loss (demyelination) to slight abnormalities. The UBO's are typically scattered throughout the deep white matter of the brain.

They cannot be due to "gas", must be something lost in the communication...

Whether or not they have clinical significance probably has to do with how many there are, where they are, and the severity of myelin injury causing them.

Frequently they have no identifiable consequence.

I believe there is some association with cognitive dysfunction for patients with NF1, but not all studies show this, again probably because the magnitude and location of the lesions is important. Lots of UBOs in sensitive areas of the brain = problems, few UBOs in nonsensitive areas = no detectable effects.