Just Saw My Dr

[JLK]

I just got home from the dr. He says that I am definitely gluten-intolerant and that everybody is and if I were celiac, we would've known before now. He says further that I have leaky gut syndrome, finally recognized 2 yrs ago by the medical establishment. He wants me to do a month long elimination diet and cleanse. Most of the diet recommendations I already follow, having figured it out myself but there are some differences I'd like to get your feedback on.

The diet would require me to forgo beef and alcohol for a month. I live on beef! Start my day with it. I follow the Blood Type Diet for a type O and I can't seem to get the day started if I don't eat beef. This diet/cleanse would require that I start the day with a Metagenics Smoothie -- UltraClearPlus. Anyone out there tried this? It is balanced; 15g protein, 19g carbo, 3g fat, with vitamins, minerals and amino acids. He says I can have more protein as a snack later.

The primary guidelines are:elim dairy, eggs, beef, pork, veal, gluten, caffeine, citrus, peanuts, etc, etc, and alcohol. It says "eliminate gluten, avoid foods that contain wheat, spelt, kamut, oats, rye, barley, amaranth, quinoa and malts" Now we all know that amaranth and quinoa are gluten-free; do you think they are included as an elim because of the possibility of cross-contamination, or simply because they might be hard to digest, or is it a mistake? I just bought some of both to expand my choices!!!!

And really, mightn't a glass of red wine be OK? Even helpful?!

And I am supposed to (already have) eliminate all of the environmental estrogens in my life. As docs go, he is way ahead of the curve!

Judi

[KaitiUSA]

I just got home from the dr. He says that I am definitely gluten-intolerant and that everybody is and if I were celiac, we would've known before now. He says further that I have leaky gut syndrome, finally recognized 2 yrs ago by the medical establishment. He wants me to do a month long elimination diet and cleanse. Most of the diet recommendations I already follow, having figured it out myself but there are some differences I'd like to get your feedback on.

The diet would require me to forgo beef    and alcohol    for a month. I live on beef! Start my day with it. I follow the Blood Type Diet for a type O and I can't seem to get the day started if I don't eat beef. This diet/cleanse would require that I start the day with a Metagenics Smoothie -- UltraClearPlus. Anyone out there tried this? It is balanced; 15g protein, 19g carbo, 3g fat, with vitamins, minerals and amino acids. He says I can have more protein as a snack later.

The primary guidelines are:elim dairy, eggs, beef, pork, veal, gluten, caffeine, citrus, peanuts, etc, etc, and alcohol. It says "eliminate gluten, avoid foods that contain wheat, spelt, kamut, oats, rye, barley, amaranth, quinoa and malts" Now we all know that amaranth and quinoa are gluten-free; do you think they are included as an elim because of the possibility of cross-contamination, or simply because they might be hard to digest, or is it a mistake? I just bought some of both to expand my choices!!!!

And really, mightn't a glass of red wine be OK? Even helpful?!

And I am supposed to (already have) eliminate all of the environmental estrogens in my life. As docs go, he is way ahead of the curve!

Judi

<{POST_SNAPBACK}>

The doctor told you everyone was gluten intolerant and if you were celiac then they would know by now...thats a bunch of bull he is feeding you. He sounds like the regular doctor who knows nothing about celiac.

Have you been tested for celiac? Have you been on ther diet?

[Rachel--24]

I just got home from the dr. He says that I am definitely gluten-intolerant and that everybody is and if I were celiac, we would've known before now. He says further that I have leaky gut syndrome, finally recognized 2 yrs ago by the medical establishment.

<{POST_SNAPBACK}>

What??

I don't understand that statement. How does he know you have leaky gut....were you tested for it or is he just making an assumption?

[Carriefaith]

hmmmm...

If I were in your situation, I would get a second opinion on this. Has he tested you for celiac disease or anything else before he made a diagnosis of leaky gut syndrome?

[JLK]

Making an assumption Rachel. I don't have insurance for any testing right now. I know I am gluten- and casein-intolerant with additional food sensitivities which I developed over the past few years. I think he was making his Dx based on my history.

My doc believes everyone is gluten-sensitive to a degree, whether they notice it or not because gluten is so resistant to digestion. He believes it tires every body out since the body works so hard to eliminate it. This is true, it's all a matter of degrees. These seed storage proteins are very resistant to all sorts of proteinases. Human were not meant to eat grass! Distinct from the IgA-mediated destruction of villi in celiacs, just physically getting rid of it tires a body out. The protein isn't broken down and so the immunogenic peptides continue stimulating cells, causing release of cytokines, etc that wear the body out since it is a constant state of stimulation. The peptides finally leave one's system when the cells carrying them actually die and slough off, faster than they would if they were quiescent, but still takes months for a completely new lining.

Whether the digestion-resistant peptides are presented to white blood cells (in celiacs) or not (non-celiacs), it still goes through all the processing other immunogenic peptides go through. This is harder on cells that the typical processing of digestible proteins and peptides. Essentially, if a food is broken down small enough, the resulting amino acids aren't immunogenic. If food can't be broken down well, it stimulates a response in dendritic cells and then depending on one's genetic predisposition (ie carrier status of HLA "celiac" and "alternate celiac" alleles), the dendritic cells will present the peptide to leukocytes to induce an immune response, or not.

For further reading:

The Journal of Immunology, 2004, 173: 1925-1933.

Copyright © 2004 by The American Association of Immunologists

Wheat Gluten Causes Dendritic Cell Maturation and Chemokine Secretion1

Marina Nikulina*, Christiane Habich*, Stefanie B. Flohé*, Fraser W. Scott and Hubert Kolb2,*

* German Diabetes Research Institute at the Heinrich-Heine-University of Düsseldorf, Düsseldorf, Germany; and Molecular Medicine, Ottawa Health Research Institute, Ottawa, Ontario, Canada

Wheat gluten causes gut inflammation in genetically predisposed individuals. We tested the hypothesis that wheat gluten is not only a target of adaptive immunity, but also modulates the function of APC. Dendritic cells (DC) derived from the bone marrow of BALB/c mice were exposed to chymotrypsin-treated wheat gluten. This induced DC maturation as estimated by all surface markers tested (MHC class II, CD40, CD54, and CD86). The effect was dose dependent, and, at 100 µg/ml gluten matched that caused by 10 ng/ml LPS. A role of endotoxin contamination was ruled out by demonstrating the resistance of wheat gluten effects to LPS antagonist polymyxin B. DC from LPS nonresponder strain C3H/HeJ were affected by wheat gluten, but not by LPS. Proteinase K-digested wheat gluten was unable to stimulate DC maturation. Wheat gluten induced a unique secretion pattern of selected cytokines and chemokines in DC. Classic pro- or anti-inflammatory mediators were not produced, in contrast to LPS. Rather, chemokines MIP-2 and keratinocyte-derived cytokine were secreted in large amounts. We conclude that wheat gluten lowers the threshold for immune responses by causing maturation of APC, by attracting leukocytes and increasing their reactivity state. In the presence of an appropriate genetic predisposition, this is expected to increase the risk of adverse immune reactions to wheat gluten or to other Ags presented. Open Original Shared Link

Leaky gut syndrome with gluten intolerance, isn't this celiac? Unless he doesn't think the gluten caused the leaky gut but developed afterwards... which doesn't seem likely! Well, Katie, this was the first time I had discussed it with him. Perhaps he'll brush up by my next visit. And perhaps I should send him all the journal references I have? It was a better response than I thought a typical family practitioner would give but I don't know whether it is just matter of semantics.

I know I am gluten-intolerant but I don't know if I am celiac. I know eating other foods is resulting in immunogenicity towards those foods, at an alarming rate (leaky gut).

An elimination and gentle detox can only help but should I put money into the UltraClearPlus? Or continue eating right? Egads.

Judi

Once again, sorry this is so long.

[Carriefaith]

I don't have insurance for any testing right now.

I'm from Canada so I don't really understand the US health care system, but if there is no way that the testing can be done, than I would just go gluten free. If the testing can be done in the near future, than I think that it is worth waiting for to get the testing done and maybe getting a second opinion, like I mentioned earlier. But then again, I'm not from the US so I don't know how easy or hard it is to do these things.

[lbsteenwyk]

Judi:

Where does the UltraClear Plus supplement come from? Is your doctor going to sell it to you? If so, I would be highly suspicious of his motives.

[Rachel--24]

I know I am gluten-intolerant but I don't know if I am celiac. I know eating other foods is resulting in immunogenicity towards those foods, at an alarming rate (leaky gut).

<{POST_SNAPBACK}>

Fortunately I had the means to get various testing done. I would have thought (based on my symptoms) that Candida/Leaky Gut syndrome would have been likely the cause for my multiple food intolerances & chemical sensitivies. Surprisingly I tested neg. for leaky gut, candida, parasites & all other pathogens. What I've discovered is that symptoms worsen dramatically following gluten consumption. All of a sudden I lose weight and seemingly my immune system is reacting to all foods and chemicals. This would suggest leaky gut...yet I tested negative. Also at the height of my illness when I was having extreme reactions to everything I ate I had ELISA food sensitivity/intolerance tests done which came back NORMAL. Apparantly my immune system wasn't reacting to food particles as is the case with leaky gut. I used Great Smokies Lab which has a great reputation so I don't really question these results. The only test to ever come back positive for me was the Enterolab. It seems more likely that you have celiac disease and if you DO have leaky gut its probably a result of celiac disease. If its not celiac disease is your doc trying to find out the cause of the leaky gut...I don't think it can be *cured* without finding out why its there to begin with.

[Rachel--24]

Judi:

Where does the UltraClear Plus supplement come from?  Is your doctor going to sell it to you?  If so, I would be highly suspicious of his motives.

<{POST_SNAPBACK}>

I agree. Lots of alternative doctors (I'm making an assumption that yours is) will dx candida, leaky gut, or other conditions that require you to take lots of expensive supplements. I also have seen an alternative doctor...she has never tried to sell me anything...If she had I would've been out the door as I'm very suspicious of those kinds of treatments.

[Jnkmnky]

Isn't leaky gut the result of inflammation caused by being gluten intolerant? Can you have leaky gut without having Celiac disease? I thought you couldn't have leaky gut without Celiac disease.

[Rachel--24]

Isn't leaky gut the result of inflammation caused by being gluten intolerant?  Can you have leaky gut without having Celiac disease?  I thought you couldn't have leaky gut without Celiac disease. 

<{POST_SNAPBACK}>

Something's gotta cause the leaky gut...not necessarily celiac disease...other conditions can cause it as well. If a person suspects celiac disease or is sensitive to gluten and also has symptoms of leaky gut I would think the sensible thing to do would be to remove the gluten from the diet. I think this doctor is just trying to make some $$ by treating the symptom rather than diagnosing the cause. But then again I'm sometimes a little paranoid about doctors and their motives...I think I've been jaded

[Jnkmnky]

I was just researching it on the net and found so many confusing things regarding it. I guess there's no real clear answer everyone agrees on so if you have a weird condition, you heap on leaky gut?? It seemed like that on the sites I was checking out. Makes more sense to tie leaky gut into a condition that causes intestinal inflammation...like celiac disease.

[Rachel--24]

Makes more sense to tie leaky gut into a condition that causes intestinal inflammation...like celiac disease.

<{POST_SNAPBACK}>

Yeah...I agree....anything involving damage to the intestines.

[JLK]

Well folks,I think this is just a matter of semantics; same phenomenon but at what degree does it get called celiac instead of gluten intolerance, or subsequent leaky gut? I think the disease is a spectrum from

people with no symptoms and no damage (haven't had a triggering event yet),

to people with no symptoms but positive biopsies (the gold standard for Dx of celiac)

and people with both gluten-intol symptoms and some degree of damage; maybe detectable by biopsy, maybe not,

and people with gluten intol, other food intolerances due to leaky gut (but gluten damage happened first (maybe biopsy + or -)

and people with casein intol first then gluten (rare buggers these!)

etc! Of course, there are the people out there too who have leaky gut syndrome induced by say a bacterial toxin and have developed sensitivities to foods they normally eat, but since they don't eat wheat...say it's a rice based diet!...they don't have celiac. And if these people were given the typical American meal (gluten) they would then be instantaneously gluten-intolerant and ...celiac if there biopsies were positive! But perhaps they don't carry the known celiac alleles of the HLA because their ancestors didn't eat a wheat based diet. The biopsy is obviously not a gold standard diagnostic!

We are all unique and in my humble opinion, it is all a matter of degrees along the spectrum of a single disease phenomenon--what happens when the lining of our stomachs no longer provides an effective barrier.

BTW, I just read a description of dermititis herpetiformis and guess what? I thought those were insect bites of some kind, like fleas. But itchy pus-filled raised bumps...there are two healing on my leg and I have been getting them for a couple months. Would you guys describe any DH you might have? Thing is, I never remember getting bitten when I have these.

OK. Seems clear to me

Ok. Katie, maybe I was giving him too much credit, eh?

BTW, I just read that NSAIDS and other pain medications can lead to leaky gut syndrome and guess what the orthopedic specialists (not my family doc) had me taking rather large doses of after my injury five yrs ago? So much so that I thought the NSAIDs were the cause of my hematuria (which presented before any gastointestinal symptoms, etc). So chicken or egg comes first? Doesn't really matter now does it? Not like I'd EVER be able to establish that THEY provoked the leaky gut and subsequent onset of celiac. Probably would've emerged at some point later in life, so maybe I should just be thankful that at least I know now.

Damn.

[Rachel--24]

BTW, I just read a description of dermititis herpetiformis and guess what? I thought those were insect bites of some kind, like fleas. But itchy pus-filled raised bumps...there are two healing on my leg and I have been getting them for a couple months. Would you guys describe any DH you might have? Thing is, I never remember getting bitten when I have these.

<{POST_SNAPBACK}>

I don't know if what I get is DH or not. The first time I got it was before I went gluten-free. I had avoided fast food for awhile and was trying to eat better..I felt good for 4 days in a row (which was a big deal for me)...I decided since I felt so good I could reward myself with some Taco Bell (2 bean burritos with s/c my fav). The next day all my symptoms were back and I had a bad rash on my arms. I was scratching it and it got worse. To me it looked like poison oak..so thats what I assumed it was until it dawned on me that I don't have poison oak in my home or car . I got scars from that episode. Since then I've continuously had very small red bumps on the inside of both arms at the elbows...sometimes they itch..but never as bad as that first time. My doc says that lots of things can cause rashes though. I'm not sure if it was DH or not but I DO know that since I've cleaned up my act and am *totally* gluten-free now...I havent had any bumps all week.

[emeraldskies]

I always wondered about the legitimacy of leaky gut syndrome, but recently I've been questioning a lot of things that are commonly believed and disbelieved and have found new answers. I have found evidence of leaky gut syndrome to be demonstrated in many scientific studies. It has been associated with alcoholism, autism, liver damage, NSAIDs (as already mentioned), Crohn's, celiac disease, and other intestinal disorders. They can test it by monitoring lactulose and mannitol levels in the urine. That's what the test at Great Smokies, the Intestinal Permeability Assessment, looks for. So if anyone is concerned that they may have it, try testing for it. It can be treated with oats (probably not an option) or zinc.

[julie5914]

I have a doctor like yours - probably trained by Jeffrey Bland. I like her but remain suspicious because of the things mentioned here. I did shell out the big bucks for the ultra clear plus, mostly because when I make it a shake it is high protein and has a lot of vitamins, and I could not find a liquid vitamin supplement for much less. She told me to stay on my regular diet because she didn't want me to lose weight.

I am almost done with my jar, and I don't really notice any difference. My muscles still ache more than usual, my stomach is doing ok and was before she told me to go on it. The ultra clear plus can only be ordered by a doctor, but I found it on ebay as well. I will probably not reorder though. She also told me leaky gut and told me to start taking bifidus. I will probably not see her again unless things get bad or they call me first. Otherwise, I will ride it out and go see my gastro doc in another 6 months to see if my labs are finally normal.

[chrissy]

as far as the doc saying that everyone is gluten intolerant---------i read recently that none of us are aable to digest wheat totally----do you suppose that's what he is referring to?

christine

[marciab]

Just a word of caution. I haven't tried the Ultraclear Plus, but I have tried the Metagenics Ultra Meal Rice. It was recommended to me by my medical doctor many years ago. Metagenics actually has a good reputation. I found it this time at a chiropractor's office for $30. I thought it would be safe because it was made from rice. Rookie mistake - still getting the hang of this "gluten free" and "allergen free" labelling. On one side of the canister it says it is formulated to "exclude wheat gluten, corn protein, yeast, soy protein, etc". BUT, under nutrition facts it says it is "produced in a facility that produces other products with soy, fish, tree nuts, dairy, and custacean shellfish". It caused me to have stomach cramps, gas and bloating. So you might want to check with Metagenics before you order it. (www.metagenics.com) I just started using Ruth's Hemp and Sprouted Flax protein powder. I emailed them and was told that there are no other ingredients in it. Also NutriBiotic rice protein is labelled "gluten free" and "free from soy, milk and egg proteins". I have to have protein in the am, too. And I learned the hard way not to shake or put rice protein in blender as it will cause extra bubbles which cause gas .... Good luck marcia

[ravenwoodglass]

I just got home from the dr. He says that I am definitely gluten-intolerant and that everybody is and if I were celiac, we would've known before now. He says further that I have leaky gut syndrome, finally recognized 2 yrs ago by the medical establishment. He wants me to do a month long elimination diet and cleanse. Most of the diet recommendations I already follow, having figured it out myself but there are some differences I'd like to get your feedback on.

The diet would require me to forgo beef and alcohol for a month. I live on beef! Start my day with it. I follow the Blood Type Diet for a type O and I can't seem to get the day started if I don't eat beef. This diet/cleanse would require that I start the day with a Metagenics Smoothie -- UltraClearPlus. Anyone out there tried this? It is balanced; 15g protein, 19g carbo, 3g fat, with vitamins, minerals and amino acids. He says I can have more protein as a snack later.

The primary guidelines are:elim dairy, eggs, beef, pork, veal, gluten, caffeine, citrus, peanuts, etc, etc, and alcohol. It says "eliminate gluten, avoid foods that contain wheat, spelt, kamut, oats, rye, barley, amaranth, quinoa and malts" Now we all know that amaranth and quinoa are gluten-free; do you think they are included as an elim because of the possibility of cross-contamination, or simply because they might be hard to digest, or is it a mistake? I just bought some of both to expand my choices!!!!

And really, mightn't a glass of red wine be OK? Even helpful?!

And I am supposed to (already have) eliminate all of the environmental estrogens in my life. As docs go, he is way ahead of the curve!

Judi

Boy do I wish I had your doctor years ago. It took me years to find a doctor who would guide me through a real elimination diet. Do what he says and yes you do need to forgo alcohol and beef at first. Ask him if you can add beef in first to eliminate that as a problem so you can add it back in quickly. They are eliminating not just gluten containing foods but also any that will commonly cause reactions. Many of us have other intolerances as well and the elimination diet will help to pinpoint these. DO NOT CHEAT even a bit while doing the elimination. It will be hard at first, I started with just cranberry juice, turkey, sweet potatoes and plain rice, all foods I hated, the doc said since I rarely ate them I would most likely not be intolerant to them. Also as your doctor will let you know some intolereances may 'go away' after you heal a bit, dairy is a good example of that for many of us. Good luck, and I hope you get some relief.

[CMCM]

Boy do I wish I had your doctor years ago. It took me years to find a doctor who would guide me through a real elimination diet. Do what he says and yes you do need to forgo alcohol and beef at first. Ask him if you can add beef in first to eliminate that as a problem so you can add it back in quickly. They are eliminating not just gluten containing foods but also any that will commonly cause reactions. Many of us have other intolerances as well and the elimination diet will help to pinpoint these. DO NOT CHEAT even a bit while doing the elimination. It will be hard at first, I started with just cranberry juice, turkey, sweet potatoes and plain rice, all foods I hated, the doc said since I rarely ate them I would most likely not be intolerant to them. Also as your doctor will let you know some intolereances may 'go away' after you heal a bit, dairy is a good example of that for many of us. Good luck, and I hope you get some relief.

How long did you eat the cranberry juice, turkeym, sweet potatoes and plain rice (white rice???) before you started adding foods back in? Would you add just one food at a time and then wait a day or two...or longer?

[ravenwoodglass]

How long did you eat the cranberry juice, turkeym, sweet potatoes and plain rice (white rice???) before you started adding foods back in? Would you add just one food at a time and then wait a day or two...or longer?

I went 2 weeks with just those foods, I was gut symptom free within a week. We added stuff in one at a time for a week. The food was added in in pure form, for example a plain baked or boiled potato with no butter or spices was eaten a couple times a day for a week. When no reaction was seen something else was added in in pure form. I added in wheat as the second food in the form of cream of wheat, it took 3 days to get a reaction. But boy did I get one. I continued the diet for a couple of months to make sure I was not sensitive to anything else and only reacted to walnuts and tomatoes and dairy. After I healed for 6 months I was able to add dairy back in. It is a long process but well worth it. It is unbelieveable how hard it is to find a doctor that will guide you through this but it really is something that can be done on your own. Many people have trouble with the pure food concept, for example rice crispies are not a 'pure' food. If you put spices on it, even pepper it is not a pure food, and so on. Feel free to email me if you want to and I can answer anything else about this for you. Hope you get some relief soon.

[Claire]

UltraClear makes several highly recommended products.

As for the Leaky Gut - you definitely do not have to have celiac disease to have this condition. I have had the LGS for many years. I do not have Celiac. I may or may nnot have gluten sensitivity - not tests results on that.

With LGS you become increasingly more intolerant of food until almost everything you eat is a problem.

I had good healing from L-gluatimine but then was told to stop taking it. The reason for that is that I have neurological problems (possibly caused by gluten) and the area of the brain that is damaged may not be able to properly process glutamine - making neurological problems worse. Claire