How Strict Do We Need To Be?

[Canadian Karen]

Better make sure my straightjacket is back from the drycleaners in time.....

Karen

[VydorScope]

heh be full on the 13th... tobad its not a friday

RADMAN: Somewhat back on topic, take a gander at this thread: Open Original Shared Link it might help you, might not, never know unless you go read it.

[radman]

Hi Vydor,

I think the issue of cross reactivity is getting confused because the same term is being applied loosely to very different issues. The thread you linked was talking about your body "cross reacting" to proteins similar to gluten. What I have talked about in reference to cross reactivity was something entirely different, namely that the antibodies made against gluten can "cross react" with other structural proteins in your body (eg. joint lining, cerebellar cells, etc.). The first is a bit of conjecture, and I haven't seen any real evidence of this phenomenon (not that it couldn't exist, but it is unlikely-immune responses don't work that way). The latter is what the term "autoimmune" is all about. It is a well documented issue with all of the "autoimmune" diseases including lupus, Hashimoto's thyroiditis, rheumatiod arthritis, scleroderma, and apparently also celiac disease.

Anyway, since we're talking serious again, I've been thinking about an issue touched on in the thread but not discussed in detail: The variability of celiac disease. Some here have posted that celiac is celiac is celiac. But if you think about it even a little bit, this cannot be true. We all have widely differing symptoms and severity of symptoms. Why is this?

[Lisa]

English, Doctor, Please..............

I think that we all have Celiac, but differnce in intollerence. Some are highly sensitive and other are not as sensitive. I personally think that it is because of the exposure time link to gluten in our system.

I has IBS symtoms all my life, but it was only two month where I have the constant acid D, and home bound before I recieved my DX. I also was loosing 10 lbs a year stemming from the fact that I had NO appatite for five years (not anorexia), just had no interest in food.

After eight months attempting to be gluten free, I have gained 10 pounds and have most of my energy back. Best of all, I like food again.

(Without spell check, I am totally hopeless)

Lisa

[jerseyangel]

Anyway, since we're talking serious again, I've been thinking about an issue touched on in the thread but not discussed in detail: The variability of celiac disease. Some here have posted that celiac is celiac is celiac. But if you think about it even a little bit, this cannot be true. We all have widely differing symptoms and severity of symptoms. Why is this?

I've wondered about that, myself. We run the gamut here--people who had no symptoms whatsoever (tested because of a first degree relative) to people with many debilitating symptoms dating back years. Nothing I have read (and I'm as far from an expert as you can get) has ever indicated that there are degrees of Celiac. So, why the differences? There are also different rates of healing--why do some people get better quickly on the gluten-free diet, while others have such an uneven experience? Is it that so much is not really known about Celiac and gluten intolerance?

[Canadian Karen]

To complicate matters even more, there is such a discrepency between not only the level of damage from one celiac to another, but the level of healing also.

I have been religiously gluten-free, my antibody numbers have gone down from over 100 to 13, yet my villi are just as flat as they were on the first biopsy and I still have chronic malabsorption.

Thus the refractory diagnosis.........

Puzzling......

Karen

[radman]

The variability of celiac is clear, I suppose it is just like other diseases where there are different levels of intensity. If you think about seasonal allergies for example, some have a little sneeze now and then, some can't go outside without an asthma attack.

The other thing we know is that the extent of intestinal involvement varies. Some/most only have involement of the duodenum and upper jejunum, others may have involvement of the lower portions of the small intestine (which are not biopsied), others may have involvement throughout the entire small intestine.

.

[Lisa]

Radman:

My biopsy indicated that my villi were totally flattened. Celiac issue. It also indicated that I have a large hiatal hernia, which often share the same symptoms as Celiac, except for the volcanic flow through the butt.

I got lost in my statement. I do believe that we vary grately in symptoms/ duration. I guess, to date, I am one of the lucky ones.

And in the Mid-South-East, I am sneezing my butt off.

Lisa

[Judyin Philly]

Radman Thanks, for the last post..I just wasn't getting this concept but between yours and Vincents link-

RADMAN: Somewhat back on topic, take a gander at this thread: Open Original Shared Link= it might help you, might not, never know unless you go read it.

It all seems so much clearer...clearer but not maybe easier...

Knowledge is power...so guess I'll just struggle forward...

I read the whole other thread and parts of this one...wow, you guys are amazing..what a intelligent group you are

Thanks everyone esp Radman and Vincent.

Judy in Philly

[radman]

Karen:

I understand that you have refractory celiac based on persistently flatenned villi, but do you have persistent malapsorption/diarrhea and if so how severe?

What type of evaluation have you had regarding the cause of the RS (refractory sprue)?

[Canadian Karen]

Karen:

I understand that you have refractory celiac based on persistently flatenned villi, but do you have persistent malapsorption/diarrhea and if so how severe?

What type of evaluation have you had regarding the cause of the RS (refractory sprue)?

I have chronic, permanent diarrhea. It has been nothing but water for over a decade now.

I was sent to a professor at St. Michael's Hospital here in Toronto who specializes in celiac, he is the one handling my case now. He is also the one that discovered through colonoscopy that I had collagenous colitis. In his words, it is not a mild case, it showed that it was everywhere, all throughout from top to bottom (wherever that is!). They have tried me on the typical treatments for it, starting with the bismuth treatment, then onto budesonide, then onto prednisone. Nothing has stopped it so far.... We are talking about 20-30 times a day, explosive, with fecal incontinence. Also, it is very nocturnal. It wakes me up around 2 a.m. and is quite active with cramping until around 5 or 6 (just in time for the kids to get up!)

My iron is chronically low. These were my last numbers, I get tested again in three weeks:

HbG - 114

HcT - 0.334

Iron - 7

UIBC - 65

TIBC - 72

Saturat - 0.1

Fe - 10

They did some test where they measured my "output" Whatever the maximum number they had for average diarrhea (I forget what it was......), I had three times that amount......

Anyway, repeat biopsies show my intestines are as smooth as the inside of a garden hose.

For the record, I do not accept or believe the diagnosis of refractory celiac. I truly believe my continued diarrhea issues are directly related to the collagenous colitis not being under control. Perhaps the dose of prednisone was not strong enough to do any good? I was on 5 mg pills, on a regiment of 6 a day for one week, 5 a day for one week, 4 a day for one week, etc. etc. until down to nothing.

Regarding the continued flattened villi, I do believe that you can have non-responsive villi but still not be refractory, just my opinion though.... There are plenty of people out there that the damage is so extensive that they just are not going to heal but are not refractory in every sense of the word, I believe I am one of those people.....

Confused? I sure am!

Karen

[Canadian Karen]

Oh, and I forgot to mention another perplexing aspect of my case. When they did my bone density test, fully expecting it to show osteoporosis due to the malabsorption and the fact that I have spinal stenosis at such an early age, my bone density test came back that my bones were stronger than a bulls! I scored almost the highest you could score in bone strength! But then again, I come from good, strong, sturdy Irish Newfie stock!

Karen

[radman]

I don't understand why you say you don't beleive in refractory celiac. Collagenous colitis would have nothing to do with persistently flattened villi in the small bowel, even though it is clearly a problem in its own right.

Dr. Fasano has written about refractory celiac. I won't go into the details, but it may be worth your while to see him for a second opinion at the University of Maryland.

[Canadian Karen]

I don't understand why you say you don't beleive in refractory celiac. Collagenous colitis would have nothing to do with persistently flattened villi in the small bowel, even though it is clearly a problem in its own right.

Dr. Fasano has written about refractory celiac. I won't go into the details, but it may be worth your while to see him for a second opinion at the University of Maryland.

Denial, I guess

Actually, I believe in refractory celiac, I just don't believe that I have it.

I would love to go see Dr. Fasano. From what I have heard about him, I regard him highly. I just don't think that I would get that covered through our Canadian medical system and financially, it would be impossible for us to pay out of pocket for it (for now, anyway...... ) I am certain of one thing, I certainly would be an intriguing case for him!

Karen

[radman]

I know what you mean about the cost, but an office consultation shouldn't cost more than $175-200. Perhaps he could just review your history and make recommendations that could be carried out by your physician in Canada. With your degree of difficulty it might be worth the time/effort/and money (I certainly don't know him personally, just that he is a recognized authority).

Here's an abstract from one of his papers. There is likely new informaton since this 2001 publication:

Management of Refractory Celiac Disease

Karoly Horvath, MD, PhD, Alessio Fasano, MD, Division of Pediatric Gastroenterology and Nutrition, Department of Pediatrics, University of Maryland School of Medicine, Baltimore, Maryland.

Abstract and Introduction

Abstract

A small percentage of patients diagnosed with celiac disease fail to have a long-term favorable response to a strict gluten-free diet. These individuals continue to have symptoms and histologic abnormalities or have symptomatic relapse despite treatment with gluten-free diet and ultimately develop a potentially life-threatening disease known as refractory sprue. Based on data reported in recent studies, the majority of patients with refractory sprue have abnormal intraepithelial lymphocytes. The current hypothesis is that refractory sprue represents a transition state to intestinal lymphoma. The true prevalence of this disease entity is unknown. Future multicenter trials are therefore warranted to estimate its prevalence and establish clear therapeutic guidelines.

Don't mean to get to personal, but thought I'd pass it on...

Have a good night.

[Rusla]

Should not that one is comming soon to....

Approximately April 13.

[Canadian Karen]

I like the following article about refractory:

https://www.celiac.com/st_prod.html?p_prodi...-47104083536.c8

When I saw the specialist last week, he said he is scheduling the procedure to look for ulcerative jejunitis (I am pretty sure he said an upper GI series?)

Anyway, I like the "positive spin" the above article puts on the outlook for refractory celiac sprue.

Karen

[judy05]

Hi Vydor,

I think the issue of cross reactivity is getting confused because the same term is being applied loosely to very different issues. The thread you linked was talking about your body "cross reacting" to proteins similar to gluten. What I have talked about in reference to cross reactivity was something entirely different, namely that the antibodies made against gluten can "cross react" with other structural proteins in your body (eg. joint lining, cerebellar cells, etc.). The first is a bit of conjecture, and I haven't seen any real evidence of this phenomenon (not that it couldn't exist, but it is unlikely-immune responses don't work that way). The latter is what the term "autoimmune" is all about. It is a well documented issue with all of the "autoimmune" diseases including lupus, Hashimoto's thyroiditis, rheumatiod arthritis, scleroderma, and apparently also celiac disease.

Anyway, since we're talking serious again, I've been thinking about an issue touched on in the thread but not discussed in detail: The variability of celiac disease. Some here have posted that celiac is celiac is celiac. But if you think about it even a little bit, this cannot be true. We all have widely differing symptoms and severity of symptoms. Why is this?

Radman,

I've been reading these posts for the last couple of hours and I am curious about why you never had an Endoscopy or even a Celiac panel. I am an RN who was sick for many years with allergies, joint pains etc.

In my 50's I developed a goiter, had it biopsy, and a left thyroidectomy. The gland was destroying itself. Soon after that I started developing burning eyes and more frequent migraines. Then came the big D, nausea, heart racing, visual disturbances and generalized anxiety. I had to quit my job because I was afraid to leave the house, in fear of having an attack. Finally a Dr who couldn't figure what was going on sent me to a GI, who of course insisted on "scopes". I am so glad I found this man because he found "Barrett's Ring"

around the esophagus. I knew I had GERD but had never been scoped. He recommended a gluten free diet

because I had an elevated IgA. I have been gluten-free for almost 3 years. Most of the symptoms are gone except for the insomnia. I have had 2 negative biopsies on the esophagus so now I only have to do them every 2-3

years.

I guess what I am trying to say is why not have the EGD and find out what is really wrong and also the Celiac Panel is important, I wish I had known about it sooner, my field was psychiatric nursing. My GI doc is telling me that I can now eat wheat because I don't have the gene. I won't go back on wheat again because I was so sick for so long and the migraines have almost disappeared. It is my choice and I am also off all dairy except for certain cheeses. I found that dairy was giving me a lot of gas and brain fog.

I would be interested in hearing your response. I have a family history of diabetes, thyroid problems, digestive issues and am from mostly German ancestry with a little Irish on my mother's side (also the one that has all of the problems....

[skoki-mom]

I like the following article about refractory:

https://www.celiac.com/st_prod.html?p_prodi...-47104083536.c8

When I saw the specialist last week, he said he is scheduling the procedure to look for ulcerative jejunitis (I am pretty sure he said an upper GI series?)

Anyway, I like the "positive spin" the above article puts on the outlook for refractory celiac sprue.

Karen

Karen, one thing I found particularily interesting about that article was the recommendation of follow up using antibody levels. My own GI told me that while antibody levels are obviously useful in diagnosis, they do not an accurate predictor of the extent of the disease. Your own results seem to show that. You have had what looks like major improvement in your labs, but your scope and your clinical presentation show that you have just much damage as before. I'm not really going anywhere with this except that it sort of supports the idea that following up using bloodwork is not necessarily telling you much. At any rate, I'm not having any follow up bloodwork, however I am having a scope in June just to see how things are going in there. I'm not sure what to expect from it...part of me is hoping for a major improvement since I have, to the best of my knowledge (minus a couple rookie mistakes) been compliant to the diet. The other part of me thinks that after 36 years, how on earth can it heal in 10 months? Should be interesting.

[nettiebeads]

Radman:

My biopsy indicated that my villi were totally flattened. Celiac issue. It also indicated that I have a large hiatal hernia, which often share the same symptoms as Celiac, except for the volcanic flow through the butt.

I got lost in my statement. I do believe that we vary grately in symptoms/ duration. I guess, to date, I am one of the lucky ones.

And in the Mid-South-East, I am sneezing my butt off.

Lisa

Too early in the morning as I read this...my mind came up with an interesting mental pic....More Caffeine, please

[ravenwoodglass]

What I have talked about in reference to cross reactivity was something entirely different, namely that the antibodies made against gluten can "cross react" with other structural proteins in your body (eg. joint lining, cerebellar cells, etc.).

The latter is what the term "autoimmune" is all about. It is a well documented issue with all of the "autoimmune" diseases including lupus, Hashimoto's thyroiditis, rheumatiod arthritis, scleroderma, and apparently also celiac disease.

Finally a way to talk to people about what was going with my immune system. My family found it astounding, and well I did too, when my arthritis (symptoms - joint damage unfortunately does not reverse)disappeared gluten-free, my neuro symptoms disappeared, my fibro disappeared, all gone unless I am glutened. I am also an Ehlers Danlos person, family thinks it is subtype 4 but we haven't gotten gene typed. When I am glutened the reaction in the fluids in the joints ( I suspect a volume increase) causes them to be much more easily dislocated. I am small and the excess fluids are not easy to see because it occurs over my entire body not just one joint. Now I know why, the worst of my autoimmune problems were present long before the severe GI problems set in, perhaps something in the Ehlers Danlos was the reason for that. My thinking was that because the ED causes a difference in the connective tissues maybe that 'weakness' was why my celiac produced more joint and muscle symptoms in initial presentation. Others may have other systems that have a 'different' genetic code that will effect them more strongly. Perhaps a predisposition to diabetes or gallbladder problems and in those folks those autoimmune problems might show up first. I think that the genetic soup we are born with plays a lot into which systems would be most severely effected along with the length of time and the amount of gluten injested. I was poor, bread was a filler at every meal and if we wanted something sweet we got a slice of bread with butter and sugar. My cousins, a couple who are also celiacs, grew up with more money, more fresh veggies and fruits (we only had fruit on X-mas) they also presented much later with symptoms. So much variation is one of the things that makes accurate diagnosis so hard and one of the reasons I push everyone to get tested, gut symptoms or not.

[shayesmom]

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...

Radman, if it makes you feel any better, you are not the only one here with milder symptoms. I barely had any at all and only considered the diet for myself after many struggles and issues with my then 15 month old. I diagnosed her with the help of an acupuncturist (as 3 pedis and a pedi GI were getting NOWHERE) and she has been thriving since the diet was introduced. In the meantime, due to sheer laziness on my part, my family was treated to a gluten-free (light) diet as I didn't have the energy to cook separate meals. We all experienced an improved sense of well-being. However, for me, it wasn't until I went 100% gluten-free that I received the full benefit and ultimately realized the extent of all of the symptoms that gluten had been causing in my life.

All of the reasons you listed above are correct. It's your second reason that is key though. Not having been gluten-free for very long yet, you do not have the perspective of having other, seemingly "peripheral" symptoms suddenly disappearing. You are also not yet aware of how your body will react once your system has cleared and then gets hit with even a small amount of gluten. You don't know what you don't know. lol!! I am just reaching that point now. A miniscule amount can set me off for 3-7 hours. Besides the gastro symptoms, I also feel incredibly tired, a bit cranky (as I get angry that I slipped up on something stupid), mentally fuzzy and just not quite right. Funny too because my original "symptoms" weren't even to the point of me thinking there was a reason to visit a doctor's office. These days, I choose to stay 100% gluten-free for the simple fact that I HATE how I feel when I've slipped up. Life feels completely different being gluten-free and the occasional "treats" just aren't treats any more. They are like an abusive spouse that bring flowers one day and a black eye the next. I'm just not interested any more.

I probably should also mention that casein is another contributor to the whole zonulin phenomena. And I can also say that I have helped several people start with the gluten/casein-free diet. The cases were ACUP (right up your field I would think), advanced psoriatic arthritis, type II diabetes, severe migraine head aches and food allergies, lupus and a few other undiagnosed issues that were debilitating to the patient, but couldn't be diagnosed by professionals. All of these disorders were helped incredibly with the diet. However, some of these also had other food intolerances (usually problems with nightshade plants or corn).

In any case, from my observations and own bouts with denial, I can only tell you that gluten is a far-reaching problem and nearly every chronic and degenerative problem would be well-served to have gluten eliminated from the equation. This observation was very difficult to come to and each person has to get there in their own time....while learning the intricacies and subtleties of their own symptoms in conjunction to diet.

It is refreshing to actually be able to speak with an MD about this disease and have him understand more than the textbook description. And it's nice to get more in-depth knowledge of the mechanics of this thing from someone with formal training. We all tend to research like crazy on this topic compared to people with other illnesses who are quite happy with their prescriptions handling things. There are no prescriptions for us and so most of us resort to learning everything there is to find on this disease...perhaps as another means of acheiving control. The more you know about something, the less likely you are to run in fear of it and not confront it.

And I find it fascinating that you also resorted to self-diagnosis. You of course are more likely to be believed on this issue due to your medical background. The rest of us self-diagnosers are often regarded as crackpots in the medical world!

Welcome to the group Radman. I think that your presence on these boards will prove VERY interesting in the future. Good continued health to you!

[Rusla]

Welcome to the group Radman. I think that your presence on these boards will prove VERY interesting in the future. Good continued health to you!

Especially when we get him drunk and have dance on the tables.

But yes, I could write a book on how many times I was told I was insane, it was all in my head, it was a parasite that lived in women's bodies, it was the flu and countless other lame things and they would never even do a blood test to find out.

[radman]

Good morning all,

Karen: yes, the article you linked is a good one. It also emphasizes the abnormal IEL's as a major factor in refractory celiac, just like Fasano's article. It also discusses the same treatments- elemental diet, immunosuppressive agents, and possible chemotherapy. There are other potential treatments that come to mind as well, particularly the newer antibody therapies for lymphoma such as rituxan. There is hope in all of this.

Several have asked why I haven't had formal diagnostics, such as antibodies/genetic testing/endoscopy. There are 3 answers. First and foremost, I have had resolution of virtually all of my symptoms as soon as I started the diet. Second, I do plan on using enterolab for confirmation, I just haven't been in a big hurry because of the above. Third, I am a man and a doctor and therefore a terrible patient.

By the way, several have also commented about me being more likely to be believed about my self-diagnosis because of the MD. This is probably true, but I miss the point. Who cares about being beleived or not? I suspected celiac, went on the diet, got dramatically better, end of story. Believe or not believe doesn't seem relevant.

Today I've been wondering about the various symptoms and problems attributed here to celiac. Since I have had only GI symptoms, I was surprised to learn about all the other associated problems, such as gluten ataxia, for example.

So how about a list of problems associated with celiac for each of us, but please try to be very selective and include (succinctly) just the problems you feel absolutely sure are related to your celiac and gluten ingestion.

Mine are simple, so I'll start:

Low Grade Intermittent Diarrhea

Gas

Foul stools/malapsorption

Borborygmi (hyperactive stomach growling)

[Canadian Karen]

Chronic severe watery diarrhea

fecal incontenence

collagenous colitis (I believe this is due to my celiac going undiagnosed for so long)

gas

abdominal pain

chronic anemia

brain fog

weakness

Karen