Newbie to LC

[Ssheehan]

Glad I found this site! I have UC for 6 years and acheived remission with remicaide and scd diet. Then have been having diarrhea, fatigue, joint pain, ect 2 months. Had colonoscopy and no active UC. Biopsies came back with LC. Questions- can u have both? I loved scd diet but looks like I need to make changes as I eat a ton of cheese,fruit, eggs, veggies. I will order the book. Should I switch from remicaide to something else? I am a believer in diet and loved scd and will never go back to junk food but my world was flipped upside down with this diagnosis and fact scd may now not be good for me. However I don't want the UC back either. Thanks in advance

[tex]

Hi,

Welcome to our Internet family. Yes, unfortunately having 1 IBD does not make us immune to developing another. Often additional AI diseases develop because of a weakened immune system. IBDs deplete vitamin D and magnesium, and that cripples our immune system and compromises our ability to heal.

The casein in your diet (allowed by the SCD) may be the reason why you developed LC, because all IBDs appear to be perpetuated by the same group of food sensitivities associated with MC. Medications can mask the symptoms, but they cannot prevent the production of antibodies. Only the right diet changes can prevent antibodies from being produced, and preempt the inflammation that results from those antibodies. With any luck at all, you may not need the Remicade (or any other prescription medication) after your diet is fine-tuned and your intestines have sufficient time to heal. And after your digestive system has healed for a while, you will probably be able to begin reintroducing small servings of even raw fruits and vegetables. But the foods that cause our immune system to produce antibodies have to be avoided forever, in order to remain in remission.

Please read NJ's response (post number 5) in the thread at the following link:

Son just diagnosed with ulcerative colitis

Again, welcome aboard, and please feel free to ask anything.

Tex

[Ssheehan]

Thanks. That is what I was afraid of but still waiting to see dr after my colonoscopy last week. I also have the plessure of psoriasis so I am a collector of autoimmune diseases! Haha. I have no problem eating only what is needed and never cheated on scd so I will research and make the changes so I can control with diet. I am still making it thru all these posts and waiting in your book but is there a sample "this is what I eat daily post"? If i cut out eggs, fruit , veggies and scd yogurt i will need to add stuff so I dont starve

[tex]

The good news is that most members here who once had psoriasis no longer have it after getting their diet optimized. Gluten and casein sensitivity are major causes of psoriasis. Don't expect the diet to work overnight because the problem is slow to resolve, but within a few months to a year you should see your psoriasis fade away.

You should be able to find food suggestions among the posts in this section:

Guidelines for Recovery

And here is a collection of old posts containing information about menus and meal suggestions:

Meal Suggestions

I'm like you, I prefer printed books, but if you would like to get a head start on reading the book, I'll be happy to email you a digital version that you can either read on your computer (PDF) or on any digital device that has a PDF interpreter, such as Adobe Reader. If you prefer a copy of the book designed specifically for a digital reader, I would need to know which type you use, because they all use different formats for the files. Kindle uses mobi files, iPads use epub files, etc.

Let me know if you want me to send you a file.

You're very welcome.

Tex

[Ssheehan]

Thanks. I like print and no kindle but I think the amazon drone will have it here asap, haha. Thank you. I have been fighting this for a long time and understand the patience. This one just broke me a little mentally as I thouth I finally had it figured out. Back to the drawing board.

[Gabes-Apg]

hi there
welcome to our group - sympathies that you had to find us

Tex has pointed you to the guidelines area that will help you revise your eating plan etc.

Happy reading and happy healing

[hollyweb]

I also wish to welcome you to the board! Having experienced all that you have before, your mind and body already have a lot of knowledge and understanding about what you're dealing with, and I've no doubt you're stronger than you think and will be ultimately very successful in controlling your MC and other health challenges! It is wonderful to have the extra support at home, too.

Tex brought up something I was curious about (well, he always does!) regarding developing antibodies / autoimmune responses to foods. I've understood that especially for those of us with very high antibody levels, the "major 4 offenders" of gluten, casein, soy and eggs would most likely need to be avoided forever even once significant intestinal healing has taken place.

But the foods that cause our immune system to produce antibodies have to be avoided forever, in order to remain in remission.

Does this mean, Tex, that for those of us who've used the EnteroLab testing, ALL the foods which have been shown to be immune-stimulating from their lab results will ALWAYS continue to produce antibodies and need to be avoided? Is it that black and white, ie, once a food has definitely produced an antibody reaction in us, will our system always identify it as something to attack, causing inflammation? Or is it possible that, over time, our system is more likely to continue to react to the "big 4", but may allow us to add in some of the 11 other foods (C-1) that may no longer produce antibodies?

Thank you!
~ Holly

[tex]

Holly,

That's generally true for the individual EnteroLab tests (gluten, casein, soy, eggs, and yeast). However, there are 2 exceptions. Experience has shown that after we heal, virtually no one continues to react to yeast (unless they have a yeast overgrowth). And many of us seem to be able to eat eggs (at least in baked goods) after we have been in remission for a while. The others (gluten, casein, and soy) seem to be chiseled in stone.

The test for the 11 other antigenic foods is a different type of test. It's more of a ranking result, based on an overall score for all 11 foods. The level of the overall score determines how relevant all the other results might be. If the overall score is below 10, then none of the other results matter, because there's no reference/basis for sensitivity. Higher levels of the overall score (such as above 30) indicate the potential for significant (possible long-term) sensitivities for the foods that rank 2+ or higher.

But none of those are chiseled in stone, so there's always hope, especially when the overall score is below 20.

There's a catch that's usually overlooked for gluten, casein, and soy. Some of us develop a tolerance for these foods over time. That means that we can eat them without clinical symptoms. For example casein causes no clinical digestive symptoms for me. However, I produce antibodies to casein, so I totally avoid it. Why? For one thing, if I don't, my osteoarthritis slowly becomes active again. But the main reason is because I have no desire to maintain a condition of chronic inflammation, even if it might be low-level inflammation. That would open the door to other AI diseases, cancer, heart disease, etc. The medical community is finally beginning to realize that basically, inflammation is the cause of all disease.

Likewise, it's possible to develop a tolerance for gluten. There are many asymptomatic celiacs in the general population who only get diagnosed after another disease develops, because they show no digestive symptoms. Gluten sensitivity often presents first as neurological symptoms. In some cases GI symptoms develop later. In some cases, GI symptoms never develop, but the neurological symptoms can become debilitating in certain cases.

Tex

[Gabes-Apg]

The medical community is finally beginning to realize that basically, inflammation is the cause of all disease.

to expand a bit on Tex's reply about inflammation and issues with inflammation, There is no black and white solution to inflammation. Each person reacts differently to inflammation - Depending on cell health (ie nutritional imbalances), organ health, other health issues, status of methylation cycle, amount of toxins in the body, how long the body has been dealing with excess inflammation, age, etc etc

just like when two people get the flu, one recovers within 10 days and the other takes months to clear all the symptoms. everybody is different.
or two people with same type of cancer, have same treatment, One handles the treatment well and goes into remission, the other has ongoing issues. there is no black and white solution. it is the same in MC world, and that is why each persons journey can be slightly different.

For me, and my combo of inputs (nutritional imbalances, other health issues, toxins, how long i have had excess inflammation) I have not been able to expand my eating plan that much compared to others here. with time, mental and emotional acceptance etc, expanding my eating plan is not of interest to me. once upon a time it was maybe a benchmark of success, (just like having normal poop can be a benchmark for some) albeit everybody is different, we have to figure out our own benchmarks and milestones..

in my opinion, this is also why the medical community is floundering with acknowledging inflammation's role in disease, because there is no 'guaranteed solution', they can not design a medication that will take away all the symptoms, the time span that people see results is vastly different (supported by the 2000 people that have shared their journey here) and the factors that impact healing are wide and varying, you are not always comparing apples with apples
(and of course that things like Vitd3 and magnesium are crucial to the healing process and big pharma can not make as much money from these elements compared to medications)

[hollyweb]

Dear Tex and Gabes,

Thank you both for your thoughtful and insightful responses. I was trying to understand more about the specific dynamics of how / why the body produces antibodies to foods in the first place, and wondering if, once the "leaky gut syndrome" was improved, if antibodies would always continue to be formed once the body had developed a reaction to a specific food / protein. That is, if a protein the body was currently attacking would always be recognized and attacked, regardless of the overall level of inflammation (and permeability in the intestines).

I completely agree with both of you that inflammation is the cause of all disease. And I also agree that my health priority is to lower inflammation from all sources and to do all I can to keep it as low as possible. I suspect I'll be similar to you, Gabes, with how things go down the line, due to my age, the amount of toxins, medications, vaccines, chronic stress, long-term deficiencies / reactions, genetics, etc. etc. that I've been exposed to, and I'm okay with not being able to add foods back into my eating plan. I am looking forward to learning how to do some "safe" baking for some more portable food options that could be shared.

Since my overall EnteroLab score for the 11 antigenic foods was 68 units, and all of the foods were 2+ or more, I'm not looking for any sort of "benchmarks" other than feeling better and being able to lead as full a life as possible! I wasn't looking for a black/white solution; I was wondering if it is black/white whether the body will always perceive a food / protein / substance as something to attack once it has developed antibodies to it. Thank you again!!

~ Holly

[Gabes-Apg]

for me, baked goods are sometimes foods. I can have 1-3 serves max in a week, every month or so. Any more than this I do notice reactions

There are a rare few here that despite years of bland diet, focused supplementation and various treatment protocols (medication and functional) do continue to react (Gloria and Lesley come to mind) and struggled to get improvement in wellness
with limited science looking at these areas, that is why there is no black and white answers about the bodies reactions to food / protein / substance etc

[tex]

Holly,

In a nutshell, gluten causes increased intestinal permeability — for everyone, not just celiacs. But those who have genes that predispose them to gluten sensitivity experience more extensive intestinal permeability when exposed to gluten, so they are more likely to develop clinical symptoms (sooner).

Once intestinal permeability occurs, peptides from certain other proteins are able to pass through the tight junctions (that are allowed to open too far due to gluten sensitivity) into the bloodstream. This prompts a reaction by the immune system, which then begins to produce antibodies against that protein. Once the immune recognizes a protein as a threat, it will produce antibodies against it upon future exposures.

This is part of the adaptive immune system — the same system that provides immunity to a disease in response to a vaccine. IOW, the vaccine prompts the immune system to begin producing antibodies against a specific pathogen so that in the future, any exposure to that pathogen results in a flood of antibodies which prompt additional immune system defense mechanisms on down the line, such as the killer T cells (lymphocytes) that infiltrate the mucosa of the colon as MC develops).

But once the pathogens are all gone, the T cells and cytokines, etc. slowly fade away. With food sensitivities that cannot happen because we continue to eat the foods that are causing the problem (unless we change our diet), so the antibodies continue to be regenerated with every meal.

I hope this helps. Do I need to put this in Edition II of the book?

Tex

[Ssheehan]

How much vitamin d and magnesium should one take?

[Ssheehan]

Found it. (Mag and d)

[tex]

According to the Vitamin D Council, the average individual uses about 5,000 IU per day (of vitamin D) and that's what they recommend everyone should take unless for some odd reason your blood level of vitamin D is unusually high. You can take more or less, depending on how much sun exposure you get on your skin, but that's a good, safe, ballpark figure.

Magnesium can be tricky because if we are really deficient it can be difficult to get our body to resume restoring our depleted magnesium reserves (because magnesium deficiency causes insulin resistance and reduced insulin production, and insulin is required to transport magnesium from the blood into the cells where it is needed. Some of us can tolerate up to twice the RDA, but for some of us that can cause diarrhea. A safe ballpark amount is for most people is around 300–400 mg per day, in doses scattered throughout the day. If you can tolerate more, a slightly higher dose might help to restore your reserves faster, but any extra magnesium that exceeds the amount that your body can utilize remains in the intestines where it can act as a laxative if the unused amount is too high. The key to rebuilding magnesium reserves (to correct a chronic deficiency) is to continue to take it for long enough to rebuild our reserves so that our body begins to function more normally again. It took me over a year to correct my magnesium deficiency, but in my case my deficiency was severe (because of a repeated antibiotic treatment on top of an existing long-term deficiency).

The safest form of conventional magnesium supplement is chelated magnesium (magnesium glycinate). Never uses magnesium oxide because only about 2 % of magnesium oxide is absorbed, which makes it a good laxative.

Tex