Casein Antibodies

[Nevadan]

Hi Gina,

I had anti-casein abs from Enterolab and stopped eating dairy products. I don't think I noticed much GI difference, but I did notice a huge differene in general allergy things. Suddenly no dust, pet or pollen allergies. I haven't taken an anti-histamine for about 4 months, exactly the same time I've been casein free, whereas I used to take them most days, year round, with symptoms most of the time.

It's difficult giving up casein though. Personally I found that all the things usually used to replace it were worse for my gut.

I don't believe these antibodies aren't important. But I think the gluten is probably the underlying problem. I'm hoping that they go away, although I haven't found anything to back that up. I think it's worth giving up dairy products, at least for a while, to see what difference that makes to you.

Best wishes,

Matilda

<{POST_SNAPBACK}>

Matilda,

That's very interesting about casein and your allergy response. In my case the casein seems to cause skin irritations mostly. I have almost no allergy (pollen, dust, etc) reactions anyway; however, my wife who still drinks cows milk on her gluten-free cereal in the mornings does suffer a lot from hay fever due airborne stuff. How much milk were you consuming while having the allergies? My wife only consumes about 1/2 cup on her cereal and is pretty much CF otherwise since she has "mostly" joined my on my gluten-free,CF diet. (She had the DNA tested Enterolab and doesn't have the celiac disease genes, but does have a DQ1.) She doesn't seem to have any GI or neuro symptoms, but we've been on a pretty low gluten and casein diet for years. Getting back to her allergies, I'll tell her about your casein/allergy experience - maybe she'll give it a try. Thanks for sharing your experience.

Re the antibodies and the possibility that gluten may be the underlying cause, you might want to check out Leaky Gut Syndrone also. A pretty good site is at: Open Original Shared Link

It provides a slightly different viewpoint and definitely offers some food for thought. Suppose (I'm just hypothesizing w/o any data to back it up) that the developing of LGS is what initiates celiac disease in those genetically disposed to celiac disease and who consume gluten. That might explain why so many people with the celiac disease genes and who consume gluten are not affected by celiac disease - maybe they don't have a leaky gut. Many folks report developing the celiac disease symptoms after a stressful event (childbirth, virial infection, etc ), and these types of stressful events have been shown to cause LGS. Sooo, maybe the numerous antibody reactions seen in many gluten sensitive people and celiac disease/GS are just two separate effects of having LGS

George

[FaithInScienceToo]

Gina,

Since you have a GI appt shortly, you might want to read up a bit on Leaky Gut Syndrone...there is a rather simple test for LGS that only involves drinking a few oz's of a sweet tasting liquid and then providing a urine sample for analysis a few hours later.  Supposedly it works pretty well.  The test is sometimes referred to as the lactulose/mannitol test.  I've never had it done, but it sounds like it could provide some interesting info.

George

<{POST_SNAPBACK}>

George!

I am so glad that I checked this thread before leaving for my appt :-)

I found the following info, amongst other links, when I googled for the test:

1) This test is a powerful and non-invasive assessment of small intestinal absorption and barrier function in the bowel. Leaky Gut is the name of the syndrome describing an unfavorable increase in intestinal permeability which causes nutrients to leak out. Undigested macromolecule food particles and toxins are allowed to pass directly into the body, creating a variety of problems including triggering an immune response sensitizing the individual to normally harmless molecules. When this occurs some people become hypersensitive to environmental substances or develop multiple food allergies. These undigested particles may also pass through the blood-brain barrier where they can be mistaken for neurotransmitters, leading to mental symptoms that may create abnormal behavior. The small intestine has the paradoxical dual function of being a digestive/ absorptive organ for nutrients as well as a powerful barrier against the excessive absorption of bacteria, food antigens and large molecules. Increased permeability of the intestinal mucosal barrier can swell the number of toxins and antigens entering the bloodstream and lead to an overly sensitized immune system in some individuals. Decreased permeability, on the other hand, appears as a fundamental cause of malnutrition, malabsorption and failure to thrive. A number of clinical disorders are associated with both conditions.

In other words, the small intestine has to be able to both digest and absorb nutrients. It also has the important immune function of keeping out excessive absorption of bacteria, substances that trigger allergies, and other large toxic compounds that do not belong in the body. If the gut is too permeable [leaky gut], these substances will

penetrate the intestinal barrier, invade the bloodstream and lymph system, overwhelm the liver's detoxification system, and cause an overly sensitive immune system. Intestinal permeability may be affected by several factors, including intestinal infection, ingestion of allergy-causing foods, toxic chemicals, trauma, blood poisoning, alcoholism, and NSAIDS [non-steroidal anti-inflammatory medications], such as Ibuprofen and Naproxen.

Both malabsorption and increased intestinal permeability ["leaky gut"] are associated with chronic gastrointestinal imbalances as well as many systemic disorders, such as...

IBS [inflammatory Bowel Disease]

Gastritis, Colitis, Ileitis, Crohn's Disease

Food Allergies

Inflammatory Joint Disease [Arthritis]

Chronic Skin Disorders

Malabsorption

Failure To Thrive

Worsening Of Gluten Sensitivity

The Intestinal Permeability Assessment directly measures the ability of two nonmetabolized sugar molecules mannitol and lactuloseto permeate the intestinal mucosa. Mannitol is easily absorbed and serves as a marker of transcellular uptake, while lactulose is only slightly absorbed and serves as a marker for mucosal integrity. To perform the test, the patient mixes premeasured amounts of lactulose and mannitol and drinks the challenge substance. The test measures the amount of lactulose and mannitol recovered in a urine sample over the next 6 hours.

Frequently Asked Questions

What does this test involve?

Following an overnight fast (at least 8 hours), you will drink a "challenge" drink of 2 sugars (lactulose and mannitol). You will then collect your urine for the next 6 hours.

Do I have to fast for the entire 6 hours?

No, you will fast for only the first 2 hours after taking the test drink. You may eat and drink normally after this point.

Do I have to avoid certain foods?

Yes, it is important to stop eating or drinking any substances containing fructose (fruit sugar) during the 6 hour collection, as this will interfere with test results. This includes all fruits, fruit juices, soft drinks sweetened with high-fructose corn syrup, dietetic foods such as jams and jellies, chocolate and honey. Check labels carefully.

Can I drink water?

Yes, it is important that you drink a glass of water 2 hours after taking the test drink, and then at least 1 cup of water every hour until you finish your collection. I.e. there is no limit after the 2 hour point.

Will the lactulose/mannitol solution make me gain weight?

No, neither sugar is metabolized by your body.

Can the drink make me feel sick?

In some individuals, it may cause a stomach ache or diarrhea.

I am diabetic. Will that affect the test results?

Abnormally high glucose can interfere with the test. Please discuss this with your clinician.

What medications can affect my test results?

Aspirin and non-steroidal anti-inflammatory drugs (e.g. ibuprofen) may affect the results, although your health care practitioner may choose to examine their influence on gut permeability. Please discuss any medications you are using with him or her.

Can this test be done on a child that is not potty trained?

No, because the urine can be lost in diapers, e.g.

Does a child drink the entire bottle of lactulose/mannitol?

Yes, the child takes the same dose as an adult.

Should I refrigerate the urine samples?

Yes, it is important to refrigerate them if you cannot ship your kit to the lab on the day you complete the test.

---------------------------------------------------------------------------------------

2)Gastroenterology. 1989 Jan;96(1):79-85. Related Articles, Links

Lactulose/mannitol test: an ideal screen for celiac disease.

Juby LD, Rothwell J, Axon AT.

Gastroenterology Unit, General Infirmary, Leeds, United Kingdom.

A lactulose/mannitol (La/Ma) test was compared with a standard cellobiose/mannitol test (Ce/Ma) in 17 patients with newly diagnosed celiac disease and 12 healthy controls. The mean La/Ma test was 0.163 (SEM 0.076) in celiacs and 0.016 (SEM 0.002) in controls. The mean Ce/Ma test was 0.132 (SEM 0.024) in celiacs and 0.014 (SEM 0.002) in controls (p less than 0.001). There is no significant difference between the new La/Ma test and the Ce/Ma test. Eighty-two patients referred to a general gastroenterology clinic with symptoms or signs of celiac disease performed a La/Ma test. A jejunal biopsy was indicated in 44 of these. In this selected group the sensitivity was 89%, specificity 54%, and negative predictive value of 95%. The La/Ma test fulfills the criteria of a screening test; it is sensitive, of low cost, and simple to perform, and it has the advantage of a simple enzyme assay and does not cause diarrhea in patients with hypolactasia. It can, therefore, be used in screening large patient populations.

PMID: 2491824 [PubMed - indexed for MEDLINE]

--------------------------------------------------------------------------------

I am going to print this and bring it with me to the doc's, to ask him to order this test, if he can, along with more casein tests -

THANKS,

Gina

[Nevadan]

I haven't seen any good scientific evidence of that, except for the studies done on the rare (and I do mean *rare*) cases of enteropathy caused by casein.  Do you have any scientific studies to back up that idea?  (I'm curious to read them.)

<{POST_SNAPBACK}>

I just ran across this report today referenced from BrainTalk forums. It describes various intestinal damage including some attributed to "nonceliac food-induced enteropathy". There is much discussion of the potential damage by casein as well as other foods.

Open Original Shared Link

Quote

"

Biopsy

In allergic eosinophilic esophagitis, esophageal biopsy reveals infiltration of the mucosa and submucosa with eosinophils.

In allergic eosinophilic gastritis, gastric biopsy reveals marked infiltration of the mucosa and submucosa with eosinophils (especially in the gastric antrum).

In allergic eosinophilic gastroenteritis, diagnosis requires a biopsy specimen showing an eosinophilic infiltration of the mucosa and submucosa. Unfortunately, no standards exist for making the histologic diagnosis. In infants and children without gastrointestinal symptoms, eosinophilic counts in the gastric fundus and antrum are consistently low, but in the terminal ileum, cecum, and proximal colon, eosinophil counts as high as 30 per high-power field can be detected.

In enterocolitis syndrome, the jejunal biopsy shows villous atrophy and infiltration by lymphocytes, eosinophils, and mast cells.

In nonceliac food-induced enteropathy, the findings of the jejunal biopsy are similar to those in celiac disease but usually are less pronounced. A varying degree of villous atrophy exists with crypt hyperplasia and lymphocytic infiltration of the lamina propria. Often, the lesions have a patchy distribution, observed especially in the last few years. Several studies have detected increased numbers of IgE plasmocytes in biopsy specimens of patients with cow's milk protein intolerance.

"

George

[Bette]

This is an awesome post. Thanks for all the research on casein and leaky gut. I am at this juncture too, but wanted some kind of validation before I remove dairy also. I waver back and forth with using Enterolabs and I see that some of you on this post have used Enterolabs and York labs and still aren't convinced about the casein intolerance.

George

Do you know if the lactulose/mannitol test is widely available or is this more specialized and only used with specific doctors across the country who utilize it. I am real restricted with Quest diagnostics.

Matilda, you give me hope. Me and my daughter have severe pollen/allergic rhinits with chronic year round sinusitis. I am encouraged by your results

Gina

Thanks for all the info. I now know who to ask, when some research needs to be done

[Nevadan]

George

Do you know if the lactulose/mannitol test is widely available or is this more specialized and only used with specific doctors across the country who utilize it. I am real restricted with Quest diagnostics.

Matilda, you give me hope. Me and my daughter have severe pollen/allergic rhinits with chronic year round sinusitis. I am encouraged by your results

Gina

Thanks for all the info. I now know who to ask, when some research needs to be done

<{POST_SNAPBACK}>

Bette,

I don't know how common the lactulose/mannitol test is. I just discoved it in some searches within the last couple of days. Perhaps Gina discussed with her GI dr today and can answer your question.

George

[FaithInScienceToo]

Bette,

I don't know how common the lactulose/mannitol test is.  I just discoved it in some searches within the last couple of days.  Perhaps Gina discussed with her GI dr today and can answer your question.

George

<{POST_SNAPBACK}>

Hi, again

This may be long, as I want to list out my experience at the doc's yesterday....but I'll try to make it informative and worth your time...at the end! (In other words...some of you may want to skip ahead...)

Well - I saw my GI yesterday - The appt wasn't the best, in my opinion, but it wasn't the worst, either - I reluctantly give him a C+ for yesterday (but that is based on what we have all been conditioned to expect from docs..and, I also have to take into account that his receptionist tried to call me beforehand to cancel, since he wasn't feeling well - they only had my cell #, which does not pick up in my new home, so I didn't get the message...)...

Anyway - I brought in my papers - my printouts from this thread, and my York Lab test results which he had not seen...( they were done 7/27/05 - almost 7 months post gluten-free, and 5 months after I first saw him) -

His first response: "What's all of that?!"

...I felt from his tone that he didn't really want to know, because he didn't feel too enthusiastic...but, I didn't know he felt ill...until after my appt, when I checked my cell phone in the car, and got the message about him having wanted to know if I could change my appt -

The first thing I talked about was how I learned yesterday from his receptionist that the lab had not run the anti-gliadin IgA and IgG I had had done one week previously in prep for that day's appt with him, as they had changed their protocol since he had given me the requisition in Feb...and how his office had not realized to call me (and a few other Celiac patients of his) who had been given their lab test requisition form before the change took place, to tell us that they now had to specifiy those tests... So, I did not get to learn if my antibody levels had gone down or not, with my continued gluten-free diet. I told him that his workers had already given me another lab request (I had the blood draw again yesterday after my appt).

Anyway, THEN he asked me how I was doing with gluten-free diet...that was nice of him...I said I was doing well with it...and only felt it was hard when eating out...

THEN, I explained about having some digestive problems still - nothing compared to pre-gluten-free, but enough to worry me - I said I was worried that dairy may be 'the problem now'...

I went on to show how from my Enterolab results that I had been given the casein-antibody 'positive' diagnosis from them (50 units), and then how I had also recently received the "dairy = +1" from York.

I THEN asked if there was a casein-antibody test he believes in that he can order -

one similar to the tests he orders for gluten.

He told me (after he confused casein with lactose, and I had to point out that it wasn't lactose I was talking about!) that he didn't know of any casein antibodies tests, and that I could look it up if I wanted to...that, of course, was disconcerting...

THEN....About the York testing...He flat out told me that the Elisa tests (York's) 'are not reliable.'

Then, I also explained about the Leaky Gut stuff I was learning about and asked about the test that George told me of .

He flat out told me that 'having Celiac means that I also have a Leaky Gut,' so doing the test is not necessary.

SO - it seems as if my doc believes that 'once a Celiac, always a leaky gut'...

That, to me, didn't sound so great, because I had read in the past about leaky gut syndrome and how probiotics, etc can helps...

So, he didn't talk at all about ways to heal a leaky gut...nor do I even know if he believes one can do so...

Additionally, I told him about how I had suffered what I thought was a food allergy reaction 3 months ago, but how my FP told me it sounded like severe food poisoning...so, he told me to get a stool test in a month for parasites, etc, if I still had problems...and that his secretary would give me a requisition for that.

LASTLY....

He said, AS HE WAS WALKING OUT THE DOOR, after I tried to address 'dairy' again by saying, "so, you don't think I could have a problem with dairy?",

that I should "go off dairy for 3 days to see what happens, note any changes, and then reintroduce it"...

I didn't bother to tell him that 3 days didn't seem to be long-enough, from

my readings...because he was walking out the door, and I had already realized that I needed a new doc... ...I will delete the old doc's name from my signature right after I post this...since, I don't like to say 'this one is bad'...IF I find a good one, I'll mention him/her, though...

I am now also going to have to tell my brother, who had wanted to go to my doc to be tested for Celiac, that he should 'probably' find a different one.

OK...so....I realized while I was getting my 5 mins with the doc, in exchange for my $45 co-pay, that I was 'probably lucky,' I suppose, that he had given me the two diagnoses of "IBS and Celiac Sprue," based only on my IgA of 29 , and my very positive response to going gluten-free, when I first saw him at 53 days post gluten-free.

Also, to his add'l credit, I will say that he was somewhat polite "versus most docs."

SO - he gets a "C+" ....based on what I have heard is normal...but, he lost my trust...

OK...so that was my lovely 6 month celiac disease follow-up doc appt...

Oh...he also said as he walked out the door that he wants to see me back in 3 months...

I'll probably go back one last time, if I cannot find a new doc...

[i may now look into going to Stanford's clinic if they take my PPO insurance...but, I feel as if I am 'on my own now'...].

Now, onto the more informative-to-you section of this post:

-------------------------------------------------------------------------------------

I spent a lot of today reading all about enyzme therapy....and about LGS - leaky gut symdrome -

I have decided to NOT eliminate dairy completely, but to cut back drastically and to take enzyme supplements, too...and to use probiotics also, and other methods to try to heal any 'leaky gut' stuff I may still have going on inside.

If my symptoms continue, even though I will be doing everything possible, I will then eliminate dairy 'for some time' and try to re-introduce it in a rotation diet form...if the symptoms return again, it's "good-bye dairy."

I am not convinced, yet, that I MUST be casein-free, on top of being gluten-free...especially after reading about enzymes and their effects being comparable to diet restrictions,and how they have been shown to stop intolerances in many people (except the gluten problems with Celiacs).

But, I do remain open to the possibility of having to accept going CF...

In the meantime....I plan to continue to read everything I can about all of this...to start using enzymes and probiotics...and to cut out as much dairy as possible.

WHAT I READ TODAY (2 paperbacks I just bought):

"Enzymes for Digestive Health and Nutritional Wealth," by Karen DeFelice,

AND

"Enzymes: Enzyme Therapy," by Dr. Anthony J. Cichoke.

THEY ARE GREAT!

I still need to go back through them and pull out all of the specific info I will need...about what to use and when...as, some are best taken before a meal, some after, and some in between meals...

I feel optimistic now, though, that I can heal my leaky gut.

I hope that many of us can start to focus on the LGS stuff....thank you, George for bringing this subject up!

Although healing a leaky gut cannot change our need to stay gluten-free, once celiac disease starts...it can however...supposedly...eliminate the delayed IgG reactions to secondary foods....thereby eliminating the antibodies!

I hope it will work for me, in terms of dairy (the casein antibodies)...

Although I will never again buy cheese for sandwiches, etc, I do hope to still 'use' parmesan cheese now and then, and to not have to worry about casein in gluten-free products I buy...

Going gluten-free has been hard enough...altho I have kept a positive attitude about it...

What I have read about LKS is:

UNLESS THE LEAKY GUT is cured...one CAN expect more and more foods to become problems foods....

I want to stop with gluten being the only thing I need to totally eliminate, if I can...

OK....that's all for now, folks.

Hope something I wrote here helps someone else -

Love, Gina

[Nevadan]

Hi, again

This may be long, as I want to list out my experience at the doc's yesterday....but I'll try to make it informative and worth your time...at the end! (In other words...some of you may want to skip ahead...)

Gina,

Thank you for your detailed report. I'm very interested in whatever you learn/experience regarding leaky guts and their repair, so keep us posted.

Sorry about your experience with your dr. Hopefully you can find a better one.

George

[Rachel--24]

I've eliminated dairy for now because I'm pretty sure I have leaky gut and I've been trying to heal it for awhile now. I've only been totally gluten-free 2.5 months and my Enterolab was negative for casein, yeast and eggs...only positive for gluten. I'm eliminating dairy for now anyways because I do feel worse after eating it and because I dont think dairy consumption helps w/ healing of the gut. I think it prolongs healing even if you dont have a positive result for casein antibodies...I would think with a positive result it "definately" wouldnt be helping matters.

[Claire]

Hi, again

Going gluten-free has been hard enough...altho I have kept a positive attitude about it...

What I have read about LKS is:

UNLESS THE LEAKY GUT is cured...one CAN expect more and more foods to become problems foods....

I want to stop with gluten being the only thing I need to totally eliminate, if I can...

OK....that's all for now, folks.

Hope something I wrote here helps someone else -

Love, Gina

<{POST_SNAPBACK}>

A few words here that may help or otherwise further confuse you.

I have had Type II, Delayed Food Reactions and subsequent Leaky Gut Syndrome for at least 15 years (that was the point of diagnosis). I was symptomatic for more than 10 years before that.

I have researched this subject to the point of boredom! I do not have a Celiac diagnois - at least not yet - genetic test coming back this week.

Leaky Gut can be healed. If you are Celiac then you will irritate the intestinal wall if you eat gluten and leakage will occur. L-Glutamine works well to promote gut healing. Some 'experts' think it is better than probiotics for this purpose (not to say probiotics are not helpful). I was told that an endoscopy probably would be negative after my year on L-glutamine.

Regarding the York Labs (and other similiar ones): many doctors, including Naturopaths, are losing confidence in these tests. Why? Because of the high number of false positives. They seem to find the 'right' positives but also identify a lot of foods as a positive when they really are not.

I had a test like this identify a reactive food that I have never eaten since a one time experience as a child - when I found out I hated it.

My Naturopathis doctor is among those who no longer trusts these tests and has a system he recommends for letting your body do the testing. I find that one is working very clearly.

May I suggest that you not hold on too tight to dairy. I have written on this forum many times about the almost identical structure of the gluten protein and the casein protein - close enough that it is risky to irritate the immune system with it. Do an internet search with gluten and casein together and see how many recommendations there are for eliminating both.

I love cheese, yogurt, grapenut ice cream and so on. I have given it up rather than take the chance that the brain damage already done will be worsened.

Best wishes for growing good health. Claire

[FaithInScienceToo]

Dear friends :-)

Hi, again!

OK - first, thanks for the feedback and continued sharing.

I, like all of us one here, feel thankful to have this place to learn and share -

Yesterday, I was where I was -

Today, I am here:

I plan to go without dairy and sugar (including the usual nightly glass of red wine) for one month, during which time I will also drink lots of pure water, take enzymes and probiotics, and exercise daily.

After that, I will reintroduce small amounts of dairy on a rotational basis, while still taking enzymes for casein digestion. If I get ANY digestive problems, I will then give up dairy.

This is a plan that I can live with, and that fits with what I have learned, to date.

Claire -

Thanks for reminding me of all of the sites that link gluten and casein - I am aware of many, also - and have them bookmarked...

But, what I have read recently about enzymes and their ability to remove the casein antibodies has me hopeful...I need to pursue this avenue, for now...while I continue to learn.

About your gene test - PLEASE tag on to let us know your results - I am very interested in following your story.

George -

I'll start a new thread soon about 'the leaky gut' and what we may all know about how to go about trying to heal it...thanks, again, for redirecting me to that topic...you may be correct about which one comes first...the chicken or the egg?...celiac disease or LGS?...

About the gut permeability test - I am thinking of ordering it on my own at some point in time - after I THINK that my gut is healed...I saw a site that offered it...didn't bookmark it, but am confidant I can find it, or another lab...

THANKS for mentioning it, too!

Rachel-24:

THANKS to you, too!

Yes...I know that I need to keep in mind that I got "50 Units" on my anti-casein antibody test from Enterolab (normal = <10)...

After reading your post, I am now planning to be retested by Enterolab later, if I want to continue casein consumption after doing 'my plan'...because...IF the plan gets rid of the symptoms BUT doesn't get rid of the antibodies, I KNOW I will want to get rid of the casein...because IF those antibodies don't go away, I won't be OK with putting casein in my tum-tum...

OK...so, today is a new day...

I have a new plan...

and lots more to learn...

AND, I have tons of gratitude that you are all 'out there'...that we are all 'here' for one another.

THANKS for following me on this stuff...and for the continued sharing!

LOVE, Gina

[Claire]

Gina -

Do let us all know how your casein testing plan works out.

See separate post on genetic testing. Claire

[FaithInScienceToo]

Thanks, Claire!

I have become overwhelmed with all of the new knowledge I need to 'digest' - pardon the pun - ...so, am going to sign-off for a while...

I'll come back on next month to share what I learned about leaky gut syndrome, to let you guys know how my own attempts to try to heal mine is going, and to look for your thread about your bloodwork results.

Take good care, ALL -

Love,

Gina

[Claire]

Thanks, Claire!

I have become overwhelmed with all of the new knowledge I need to 'digest' - pardon the pun - ...so, am going to sign-off for a while...

I'll come back on next month to share what I learned about leaky gut syndrome, to let you guys know how my own attempts to try to heal mine is going,  and to look for your thread about your bloodwork results.

Take good care, ALL -

Love,

Gina

<{POST_SNAPBACK}>

You will be missed. I posted re my Kimball Labs celiac test results under a new title: Ironic. Hurry back. Claire

[julie5914]

I am so glad to see a discussion on leaky gut. My doc told me on Monday that she thinks I have it. I have no idea what that means though. It doesn't seem to be something that traditional docs accept, so it's not on the reputable Web site I normally visit for information. I am getting more sensitive to more things, and I am cutting out dairy as of this week after being on the SCD for the week before but still apparently reacting to the cheese. I'm going to try rice tonight.

How do you heal a leaky gut if it keeps getting damaged by more and more foods? Where do I get l. glutamine and how do I take it? Is that an enzyme or probiotic?

[Claire]

I am so glad to see a discussion on leaky gut. My doc told me on Monday that she thinks I have it. I have no idea what that means though. It doesn't seem to be something that traditional docs accept, so it's not on the reputable Web site I normally visit for information. I am getting more sensitive to more things, and I am cutting out dairy as of this week after being on the SCD for the week before but still apparently reacting to the cheese. I'm going to try rice tonight.

How do you heal a leaky gut if it keeps getting damaged by more and more foods? Where do I get l. glutamine and how do I take it? Is that an enzyme or probiotic?

<{POST_SNAPBACK}>

Right - traditional doctors are unlikely to know about this. I educated mine. She is very ill informed but willing to read reliable information provided for her.

If you have leaky gut you will get progressively more reactive to a wider range of foods. Tough but true. Leaky gut is healed by eliminating the reactive foods and supplementing with L-glutamine (probiotics also if you like but not 'instead of'. L-glutamine is available in most Health Food Stores and online from any number of reputable sources. You will heal well on one scoop a day = 5 grams. Athletes often take this in high dosages but that is not at all needed for intestinal healing purposes.

If you eliminate the culprits and take this product you will heal. Not overnight! It took awhile to get a leaky gut and it takes awhile to heal. You may not heal completely as 'accidents will happen' I did not heal completely because I didn't know that gluten was an issue so I ate a diet that was very scarce on grain products but not 'gluten free'. However I did have a lot of healing. I took L-glutamine for about a year and am now Gluten-free Casein-free.

L-glutamine powder is best - absorbs better and quicker than in capsule form. It is taken in water - apart from meals. It is tastless. Claire

[celiachap]

I am so glad to see a discussion on leaky gut.

<{POST_SNAPBACK}>

I don't know for sure if I've ever had Leaky Gut, but I definitly have Celiac.

I’ve been taking Kirkman Labs DPP-IV every day for the past three months – for help with casein digestion and to provide possible protection in cases of accidental gluten ingestion.

Open Original Shared Link

It seems to be working. I do not even know if I’ve been glutened since I started taking it, in July '05, which is a good sign.

I use Lactaid, and Digestive Advantage LI, tablets for dairy. I try to use lactose free skim milk whenever possible – which accounts for about 50-75% of my total dairy consumption. Somebody, on another medical board, recommended Nature’s Way Lactase Enzyme (below), but I have not yet tried it:

Open Original Shared Link

As for L-glutamine powder – I get it at a Vitaminshoppe store. There are many brands; I use this one:

Open Original Shared Link

Glutamine is very popular with body builders (which I am not) because it supposedly maximizes nutrition, and supports healthy villi growth.

I take a number of other supplements, and recently added grape seed extract – it contains Oligomeric proanthocyanidins - also known as OPCs - which are antioxidants that help neutralize unstable oxygen molecules called free radicals. This is one of many supplements recommended as beneficial for Leaky Gut and other symptoms. There are several manufacturers; I use Twinlabs’ version, which is one that is pharmaceutical grade.

Open Original Shared Link

[Claire]

Julie -

I forgot to include this info in the post sent earlier.

This test determines leaky gut and can be used as a diagnostic for celiac or as a monitoring tool to see how well you are improving. I think it started out being used with IBS patients. CLAIRE

LACTULOSE/MANNITOL TEST: an ideal screen for celiac disease.

Open Original Shared Link

NEW TESTING PROCEDURE FOR INTESTINAL PREMEABILITY

Testing for "intestinal permeability" is a sensitive and accurate way to screen for celiac disease, with fewer false positive and false negative results than other commonly used screens. Intestinal permeability reflects the ability of the intestinal lining to absorb nutrients while keeping undesirable chemical substances out of the body. In patients with celiac disease who are consuming gluten, even small amounts of damage to the intestine will allow certain large chemical molecules to leak into the bloodstream, from which they may be excreted by the kidneys into the urine. The available permeability test requires that the individual drink a solution which contains two sugars, neither of which is metabolized or changed in the body. One sugar is usually mannitol, which is readily absorbed from the intestine and excreted in the urine. The other sugar is lactulose, which is hardly absorbed at all under normal conditions. Any lactulose that is absorbed is excreted unchanged in the urine within 5 to 6 hours. Both sugars are safe to be taken, even by small children. When a person with celiac disease drinks the lactulose/mannitol mixture, an excessive amount of lactulose will appear in the urine, unless the person is on a strict gluten-free diet. If the person has enough celiac disease to create malabsorption, then the mannitol level in urine will be low. The ratio of lactulose to mannitol in urine is the most sensitive index of active celiac disease. An elevated lactulose to mannitol ratio in urine may be due to conditions other than celiac disease, such as intestinal infection, severe food allergy or Crohn's disease, but a normal ratio indicates either that the person does not have celiac disease or is in complete remission due to strict adherence to a gluten-free diet. Information about this test can be obtained from the one laboratory that presently offers it, Great Smokies Diagnostic Laboratory in Asheville, NC. Their number is 1-800-522-4762.

[Bette]

Information about this test can be obtained from the one laboratory that presently offers it, Great Smokies Diagnostic Laboratory in Asheville, NC. Their number is 1-800-522-4762.

Thanks Claire,

I was wondering a few post back , on who is doing the test. Does this have to be physician ordered?

Bette

[Guest BellyTimber]

Gina,

I had a test on opioid traces in the urine (from a university laboratory in England), which gave the gluten line on the graph going through the top of the paper and the casein line only just above positive.

I was told that is partly due to casein traces degrading in the post but to my mind that also says something about the relative potency of the two, at least in my case (i.e they may degrade faster in the body too?).

I'm not too sure about why you are doing this about casein, or why you are doing it now (have probably misread your posts), but wish you the best of health & success from it. I'm not sure your doctor is particularly bad - without searching your other posts (sorry for laziness!) - but you may have needed to find a better one anyway?

Leaky gut is probably often a separate phenomenon to the villi flattening and either or both or neither could occur in an individual. It will get gradually better on gluten-free and sensible measures such as those mentioned in the mdhealth site cited by George as the main remedies, plus - potentially - any remedies for specific very well known situations.

If a gluten-digesting enzyme makes coeliac disease symptoms worse because it makes available more gluten than ever, I wonder if casein digesting enzymes may do the same? Only a hypothesis. We are in protein territory here and I don't know whether it is possible for enzymes to do the "changing it into something else" that lactulase does with lactose into galactose (I think).

I like the site George cited in this thread (the mdhealth one) which adopts a multi-track approach to causes and remedies which is very balanced and not dogmatic about one cause and effect or remedy. The author even likes some antibiotics!

I was told by my GP I communicated better and was more relaxed from my first few months gluten-free and that was very significant for me.

Since then I have had lots of stresses and strains in life and my CFS has crept back up on me but, after the lactose intolerance phase of a few months, I have not felt the need to exclude dairy. Excluding gluten and the crops that it grows in has had enough practical impact on my way of life for me to carry on struggling getting used to for the next x years.

Your general feelings of wellness or unwellness are probably not enough to go on to make major moves as it could easily take you 2-3 years to feel well from going gluten-free but, as I say, all power to you anyway!

Julie,

Your general feelings of wellness or unwellness are probably not enough to go on to make major moves as it could easily take you 2-3 years to feel well from going gluten-free.

Leaky gut is probably often a separate phenomenon to the villi flattening and either or both or neither could occur in an individual. It will get gradually better on gluten-free and sensible measures such as those mentioned in the mdhealth site cited by George as the main remedies, plus - potentially - any remedies for specific very well known situations. Casein by itself may not necessarily be a major cause of damage to your gut or CNS.

I think the points Claire made about LGS and some of the tests are good.

I can't remember your gluten-free history and think it is too complicated to "search" it in the middle of posting (this probably means I am lazy or a "technophobe") but by way of generalising, wait till you have specific, compelling reasons to cut out dairy foods. It may also be you may feel better from reducing or rotating them. It may also be I may do so (!)

At 50 I have spent 3 years making one major dietary move, going gluten-free-WF, which is still difficult for me to organise in practical terms. Later in my life - and I assume I am already more than half way - I might make one more major move or I probably shall not, perhaps minor ones like lessening refined sugars.

My head is in a whirl from watching younger folks' intensive adjusting of the basis of their diet!

(not having anyone in particular in mind but wanting to counterbalance what might be seen as a trend to follow in a general way)

There again most of you are probably fairly different from me and I will stress that !!!

[Guest BellyTimber]

... did I mean lactase ... anyway, sugars territory.

[julie5914]

Thanks to your replies within this post for my own questions - I left out something important in my above post. I had been hestitant to cut out dairy even though it seemed I was reacting to it, but the reason I finally decided to try a few weeks without it was because by gluten blood numbers were still super high. My doc seemed skeptical that I was not outright cheating because they were so high and said this was not from an accident or two. When I assured her that I am gluten-free, she said this must be leaky gut. (She didn't explain any further as to what led her to that conclusion.)

Anyways, because I had cut out everything but meat, fresh veggies, nuts, fruit and cheddar cheese and still seemed to be reacting to the cheese, I started thinking. Perhaps my gluten anitbody numbers are so high because my body is reacting to casein as though it's gluten. It's the reaction that causes the actual damage, right?

You are right though, I have not been gluten-free for very long - only about 4 months, and I am definitely still healing - it will take a while.

For the meantime, you guys have sold me on the glutamine.

[Claire]

Thanks    Claire,

I was wondering a few post back , on who is doing the test. Does this have to be physician ordered?

Bette

<{POST_SNAPBACK}>

Reading through all these posts it's easy to misunderstand what another person is referring to.

The test for Leaky Gut has to be order by a doctor - it requires lab work.

L-Glutamine mentioned here is available without prescription. Clairer

[FaithInScienceToo]

Hi, again, everyone -

I got e-mails about this thread continuing - great to see new members adding on.

Michael - thanks a ton for your well-thought out editions - I will consider all that you said.

And, Julie - thanks, also, to you for your insight/thoughts and nice to get to know you-

About the use of digestive enzymes potentially increasing problems, I have not read anything along those lines, in terms of casein enzymes - I have only read the opposite...if anyone knows of any studies that say otherwise, please tag on...

ANYWAY....I just received the 'casein enzymes' I had ordered (and couldn't recall the info about before), and so I wanted to tag on the info about them, for interested parties. They are from Kirkman Labs...I will simply copy/paste for you:

DPP-IV Forte™(A Dipeptidyl peptidase IV (DPP-IV) Analog for Comprehensive Digestion

of Protein Peptides)

DPP-IV FORTE™ (featuring a Dipeptidyl peptidase IV analog) is one of the most exciting nutritional enzyme supplements available from Kirkman Laboratories. This digestive enzyme can be supplemented alone or in combination with other nutritional enzymes to support the digestive process. This unique enzyme specifically breaks apart proline-containing peptides (casomorphin, gluteomorphin and gliadomorphin), which are generally known to come from dairy products and cereal grains. The DPP-IV enzyme assists digestion of these peptides, which are generally resistant to being completely broken down by other enzymes.

WHAT IS DPP-IV?

Dipeptidyl peptidase (DPP-IV) is a protein that has multiple functions in the body. It is known under different names depending on where it is found. When DPP-IV is on the surface of the T-cell (lymphocyte), it is called CD26, and supports immune function. When this enzyme is found on and imbedded on the epithelial brush boarder mucosal membrane of the intestinal tract lining it is known as DPP-IV. The importance of DPP-IV is that it has primary function in breaking down casein and side chain activity in breaking down gluten. Thus the use of a DPP-IV containing enzyme will support the digestion of casein-containing milk products as well as the protein in gluten-containing grains

Also, I have recently bought about a dozen books on gut health, and have lots to 'digest' still ;-)

I'll come back on and try to get a "Leaky gut" only thread going later...

Best to all,

Gina

PS - About my plan, I began my CF diet yesterday....I plan to use the enzymes in case of accidental glutening/caseining ;-)...I will restest with Enterolab eventually (when I feel 'healed') to see if the casein antibodies are 'gone.' If they go to 'negative,' I will then try to re-introduce casein on a rotational basis, WITH the use of enzymes, to see if I can remain symptom-free...If so, I will still retest again every so often to double- check for antibodies, to make sure the enzymes still work (if they do in the first place, that is...).

(Fingers crossed, but am now thinking/feeling I'll be OK even if I find that I must give up dairy completely, in order to heal my leaking gut)

PPS - I am also going to add the glutamine powder...thanks for all of that info, Claire.

[Claire]

Hi, again, everyone -

I got e-mails about this thread continuing - great to see new members adding on.

Michael - thanks a ton for your well-thought out editions - I will consider all that you said.

And, Julie - thanks, also, to you for your insight/thoughts and nice to get to know you-

About the use of digestive enzymes potentially increasing problems, I have not read anything along those lines, in terms of casein enzymes - I have only read the opposite...if anyone knows of any studies that say otherwise, please tag on...

ANYWAY....I just received the 'casein enzymes' I had ordered (and couldn't recall the info about before), and so I wanted to tag on the info about them, for interested parties. They are from Kirkman Labs...I will simply copy/paste for you:

DPP-IV Forte™(A Dipeptidyl peptidase IV (DPP-IV) Analog for Comprehensive Digestion

of Protein Peptides)

DPP-IV FORTE™ (featuring a Dipeptidyl peptidase IV analog) is one of the most exciting nutritional enzyme supplements available from Kirkman Laboratories. This digestive enzyme can be supplemented alone or in combination with other nutritional enzymes to support the digestive process. This unique enzyme specifically breaks apart proline-containing peptides (casomorphin, gluteomorphin and gliadomorphin), which are generally known to come from dairy products and cereal grains. The DPP-IV enzyme assists digestion of these peptides, which are generally resistant to being completely broken down by other enzymes.

WHAT IS DPP-IV?

Dipeptidyl peptidase (DPP-IV) is a protein that has multiple functions in the body. It is known under different names depending on where it is found. When DPP-IV is on the surface of the T-cell (lymphocyte), it is called CD26, and supports immune function. When this enzyme is found on and imbedded on the epithelial brush boarder mucosal membrane of the intestinal tract lining it is known as DPP-IV. The importance of DPP-IV is that it has primary function in breaking down casein and side chain activity in breaking down gluten. Thus the use of a DPP-IV containing enzyme will support the digestion of casein-containing milk products as well as the protein in gluten-containing grains

Also, I have recently bought about a dozen books on gut health, and have lots to 'digest' still ;-)

I'll come back on and try to get a "Leaky gut" only thread going later...

Best to all,

Gina

PS - About my plan, I began my CF diet yesterday....I plan to use the enzymes in case of accidental glutening/caseining ;-)...I will restest with Enterolab eventually (when I feel 'healed') to see if the casein antibodies are 'gone.' If they go to 'negative,' I will then try to re-introduce casein on a rotational basis, WITH the use of enzymes, to see if I can remain symptom-free...If so, I will still retest again every so often to double- check for antibodies, to make sure the enzymes still work (if they do in the first place, that is...).

(Fingers crossed, but am now thinking/feeling I'll be OK even if I find that I must give up dairy completely, in order to heal my leaking gut)

PPS - I am also going to add the glutamine powder...thanks for all of that info, Claire.

<{POST_SNAPBACK}>

Gina - just don't forget that even if you can get casein under control there is still the issue of mimicry that i have mentioned - probably to the point of boredom. The two proteins gluten and casein are virtually identical. The implication for celiac disease patients that the immune system would read these two as being the same the way it reads food protein and similarly structured body protein - i.e. cells - as being the same. Read up on mimicry. I will stay away from dairy. I don't have brain cells to spare. Claire

[Guest BellyTimber]

I think the mimicry is a very real issue, due to structural similarities. I know of certain children who had severe CNS symptoms that they no longer have now they are CF except after casein intake, when these symptoms are very severe. There are probably other groups of people too, for whom this shows up in different ways.

I have posted a method in "Rachel -- 24"'s thread on casein, at 03:03 PM today, to test for tolerance to lactose which is another significant component in dairy and which people with celiac disease and such conditions often have a direct intolerance to, for quite some time after going gluten-free (sometimes indefinitely).