I need expert opinions and Drs don't have them

[suzanne]

Hi, I have a few questions but first must fill you in on my status: first episode was late Sept 13, no diagnosis or treatment for 3.5 months with out of control D. My sister recommended a brat diet and it helped immediately, reducing episodes from 15 per day to mild ones 3-5 times. Finally diagnosed, GI doc had no recommendations regarding diet, actually sounded skeptical about impact of diet, and recommended budesonide which I have yet to take. I found this site in March and things got even better. At this point things are under fairly good control, minimal D 2-3 times early morning and none otherwise. At times things seem 'almost' normal briefly. I am eating meat, cooked vegetables like squash and sweet potatoes, chard--I have been eating some dairy: yogurt, cream in coffee, hard cheese, some mayo, butter on vegetables--all but the cream are occasional without obvious problems. I often have a glass of wine in the evening, GF bread, a few nuts.
What hasn't changed is significant loss of energy, motivation--I feel tired and apathetic much of the time--and this is not who I am.
So, My questions:
1. I have read on the site that it can take a year for the gut to heal after an bad episode. Am I progressing as you would expect or would you expect a closer return toward normal after about 6 months of restricted diet?
2. While dairy doesn't seem to cause significant problems, do you think I should try completely dairy free for a time? (I hate the thought but will do it.)
3. What about this malaise? It seems to be present more and more of the time and that affects my quality of life more than the D. Does everyone feel this way? Would budesonide make a difference?
Thank you--I certainly can't count on the medical world to give me answers other than the diagnosis. Suzanne

[Fern]

Hi, Suzanne!

You sound like me 6 months ago. Last week I hiked 23 miles in the Grand Canyon thanks in large part to the advice given on this board. You can get your life back!

I would recommend getting the Enterolab testing done. I first encountered Enterolab testing on celiac message boards in 2005 when my son was diagnosed with celiac. I was rather dubious and couldn't decide if it was based on science or "woo-woo." Fast forward 9 years. I reluctantly had the testing done a few months ago, since I didn't think I had made any progress on my own. I was pretty bummed to find out that I reacted to everything tested, but decided to focus on what I could eat and go from there. I feel so much better. I have had a couple of slip ups that make me realize that I really can't eat the things I thought should be fine. For example, I've eaten small amounts of steak twice since I found out that beef was a no-no for me, and the end result was not good. I never would have guessed that beef could be making me sick.

So, I repeat, get the Enterolab testing done. That will answer your question about dairy.

About the same time that I had the testing done, Gabes mentioned getting tested for MTHFR. When I read about it, I realized that I had many of the problems associated with the genetic variant/defect. I got tested and lo and behold, I had two mutations. I started supplementation at about the same time as I started the new eating plan, so it's hard to say which put me back on my feet, but I am feeling so much better! You might take a look at MTHFR and see if any symptoms sound familiar to you. IBS is definitely one. Also, you may be deficient in B-12, have you tried any supplementation?

There are many wise heads on this board with more experience than I have, so I will bow out and let them advise.

Fern

[suzanne]

Thank you, Fern, for a very thoughtful and positive response. I have been thinking of the enterolab testing but have never heard of MTHFR which I will look up next. Suzanne

[tex]

Hi Suzanne,

Fern wrote a great response, so the main thing I have to say is

I'll add that for most of us, if we manage to track down all of our food sensitivities, and avoid them, the D will usually resolve before the fatigue, and some of the neurological issues such as brain fog, motivation, etc., fade away.

Regarding budesonide — it will usually mask most of the symptoms, and therefore make life more pleasant while the diet changes are healing the gut, but rather than to help speed up healing, corticosteroids actually slightly retard healing.

Tex

[UkuleleLady]

Hi Suzanne,

I agree with Fern (great message) and can say that Enterolab was the way to go for me, as I react to rice, chicken, eggs --all things I assumed were safe while I was at my worst.

I can't help but wonder if cutting dairy completely would give you greater gains. It seems you're thinking about it. Maybe try it for a while and see if the D goes down even more. Could be very worth it. Many of us use coconut milk/ creamer in our coffee. I have come to enjoy it black.

Avocado or coconut oil is a good butter substitute.

Hugs and best wishes,
Nancy

[Leah]

Hi Suzanne. You are doing very well so far with your progress and should give yourself credit for getting as far as you have with diet alone. Doing the Enterolab testing is a great way to fine tune. If I were in your shoes, I would give up dairy completely for at least a week and see how you feel. It may be your answer….. and with dairy, you usually notice an improvement fairly quickly. I actually save bacon grease from cooking nitrite free bacon and use a bit of that on my slice of toast with my morning egg. Tasty :)

At this point, I don't think I would do Entocort ( Budesonide). I took it when I was at my worst and it helped tremendously, but when I finally weaned off, things were still "a bit soft". I could only figure out the last foods that were bothering me by being OFF the drug. Be aware that coffee could be causing you issues ( it does for me), or soy in your mayo. There are still some things you can explore.

One last thought: histamines. That was the last piece to MY puzzle.

Good luck
Leah

[suzanne]

Thank you all so much--the thoughts on budesonide were very helpful as I have been tempted lately and would rather find out what all is contributing to this. I have been taking an antihistamine nightly for several months and agree that it helped a lot. I have been reluctant to spend $500+ on lab tests but think it is the only reasonable thing to do and, in the meantime, I guess I need to bite the bullet and cut out dairy. I am sorry for the people who could use it and haven't found this site. Thank you again, Suzanne

[UkuleleLady]

I guess I need to bite the bullet and cut out dairy.

I'm glad you're going to try out removing dairy. I really think you will see progress from that.

It will take a while for you to stop producing the anti-casein antibodies (if you make them) so don't worry about going dairy-free messing with your test sample for Enterolab. Assuming you're doing that in the next few weeks/months.

Best wishes,
Nancy

[Gabes-Apg]

Suzanne,
I have never done the entorlab testing. I used elimination diet and food journal.

As others have said, if you remove all dairy for a week or so, you will be able to tell if it is an issue.

Are you taking Vit d3? Have you had your levels checked?

If anti histamines helped, I would encourage, high doses of magnesium (via the skin for D dominate MC'ers)
Vit c, zinc. This will resolve the excess histamine inflammation.

As fern mentioned, MTHFR is one issue that can be underlying issue to autoimmune, intolerances issues.
The other, which I have, is Pyrrole.
Both of these cause 'dodgy cells', which is not detectable in the normal blood tests.
Dodgy cells means nutrients are not used properly through the body. Ongoing fatigue, pain, etc etc is linked to both.
Both issues need specific supplements to correct.
Interestingly high doses of magnesium are also used for both, as magnesium deficiency is a key part of the issue.

If you do a search for MTHFR then Pyrrole, there are recent discussions that have links to info and testing etc.

[suzanne]

thank you, Gabes. I had discontinued magnesium when this started since it can cause D. I will try to find some topical and I will read up on MTHFR--all new to me. So this is something that can just appear? I have never had any problems with intolerances, any GI problems--but as my husband, the doctor, said when he was alive "you never died before until you die either."

[Gabes-Apg]

In the same path as MC, it is a sequence of events situations that awakes the angry bear.

MTHFR and Pyrrole are gene mutations.
It is the sequence of events in your life as to whether the are chronic or not.
The whole life pattern, conception, gestation, childhood, teenage years, adult life.
What happens during this time, illness's, emotional events, trauma's, (physical and/or emotional, and/or mental).
Where you live, where you travel, the lifestyle you live, your career and if you work 80hrs plus a week. Exposure to heavy metals, chemicals.
How often you get sick, do you take the time to rest and heal.
What medications you take.
How often you have anaesthetic
How many times you have antibiotics
To name some of the factors

As MTHFR and Pyrrole impact the health of the cells and cell membrane, as the cell health detoriates the health issues get worse, Autoimmune issues appear and will get worse until triggers are removed and deficiencies are corrected
MTHFR and Pyrrole are linked to issues as heavy metal toxicity, again the dodgy cell health means that heavy metals are not cleared out of the body, health issues will appear when the heavy metals are at a high level.
All of this is linked to inflammation. The issues cause inflammation, the inflammation gets worse as the deficiencies increase.
Thyroid, hormone, adrenal, issues are some of the aspects linked to this.

EDIT Addition: PS the same way that HLA DQ2 and HLA DQ8 are indicators for people to be 'most likely' gluten intolerance and/or get an IBD.
where those alleles are detected, for most it is a case of 'when' they are diagnosed with an IBD**, not 'if' they are.
(** or 'IBS' where symptoms and diagnosis is done accurately)
Why doesn’t everyone with DQ2 or DQ8 get CD?

http://www.nchpeg.org/nutrition/index.p ... mitstart=2
Although 40% of the US population has DQ2 and DQ8, CD is only present in approximately 1% of the population. Individuals with diabetes, autoimmune disorders, certain genetic syndromes, or close relatives with CD have a higher risk for developing the disease (Gujral et al., 2012). Simply having DQ2 or DQ8 and eating wheat, barley or rye, does not cause CD alone. This is because there are other environmental and genetic factors that contribute to the development of CD. One factor is control of permeability of the small intestine. For example, a virus infection in the gastrointestinal tract might cause intestinal inflammation, allowing gluten peptides to pass through the intestinal epithelial lining, leading to development of CD. There are also differences between antigen-presenting cells, T cells, B cells and “cellular signal molecules” of the immune system. Other gluten-related disorders add complexity to the diagnosis of CD, including gluten ataxia, dermatitis herpetiformis (DH), and non-celiac gluten sensitivity (NCGS). DH is a skin rash from manifestation of the small intestinal immune-mediated enteropathy precipitated by exposure to gluten in the diet. It responds to a gluten-free diet but may also require treatment with dapsone, a neutrophil inhibitor. NCGS is related to a number of immunological, morphological or other symptoms activated by consuming gluten in people when CD has been excluded (Ludvigsson, 2013).

highlight was done by me

[suzanne]

hmmm--this all started toward the end of my husband's lengthy illness and death

[Gabes-Apg]

There are many here where the 'angry bear' was awoken after those types of situations.
Or that a 2 year remission is over, and chronic lot of symptoms return.

My recent learnings is that we are like icebergs, we can only see 1/3 of what is happening...

It can all sound overwhelming at first, take your time, consider your options. Do what you can afford. Don't get stressed that you cant do every test straight away.
Regardless of what the issue /issues may or may not be, time, patience and listening to your body will be the main priority. (And provide a fair amount of benefit)
Only do one change at a time, monitor it for a couple of weeks, to gauge the outcome, before you make another change.

Do a bit of reading and research, talk with family, if there are some common issues amongst family members consider the MTHFR and Pyrrole
In feb this year, when I moved interstate nearer to family only then did I learn about health issues of grandparents (one of which grandmothers could not tolerate dairy ) and various other key events that explain quite a bit of my current issues.

Maybe for now, removing dairy might be the only thing you need to do.

[nerdhume]

Gabes,
First thanks for all the time you put in enlightening us. I have to admit at my age and having had brain fog for a few years I really have trouble understanding some of the articles.

a virus infection in the gastrointestinal tract might cause intestinal inflammation, allowing gluten peptides to pass through the intestinal epithelial lining,

That makes perfect sense. My WD problems started after a nasty infection from a potluck thanksgiving dinner. So the nasty infection damages the lining of the intestines, lets the gluten (and other foods) through. The body then attacks the invaders (which it is designed to do). So now immune system is set up to attack food particles.

I wonder if this is permanent or might stop after a number of years. I'm thinking like vaccines, some are permanent, others have to be done each year.

[tex]

I wonder if this is permanent or might stop after a number of years. I'm thinking like vaccines, some are permanent, others have to be done each year.

Here's my 2 cents on that:

MC is permanent, once the genes are triggered. All we can do is to control the symptoms, and of course the best way to control the symptoms is by preventing them from developing in the first place by avoiding foods, medications, supplements, etc., that promote the production of antibodies and other inflammatory agents. If we avoid inflammatory foods, etc., then our gut will heal, and after a few years (the older we are, the longer it takes), our epithelial histology will return to normal. (IOW, the cellular details will all appear normal under a microscope). Some gastroenterologists mistakenly conclude that this means that the disease is "cured". But that's simply wrong, because if we re-expose our digestive system to any of the foods that promote inflammation, then the inflammatory markers will begin to reappear, and if we continue to prolong the exposure on a regular basis, we will eventually be back to square 1, in a full flare.

Regarding possible vaccines:

As I mentioned in the book, at least 1 research group is working on a vaccine for celiac disease, and should be in the final trial stages by now. Here's a quote from pages 190–191 from chapter 15 in the book:

Another group is developing a vaccine
ImmusanT, Inc. has its sights set on producing a vaccine known as Nexvax2 that will induce tolerance for the three most troublesome peptides in gluten. The desensitizing treatment is intended to work much like existing treatment programs for other allergens where the patient receives regular inoculations that begin with a very small dose, followed by increasingly larger doses, until tolerance is achieved.3 It’s unclear how effective this approach will be, because the treatment program will target only the three most potent peptides found in gluten, despite the fact that as we discussed in chapter seven, hundreds of additional peptides in wheat, barley, rye, and oats that are known to trigger reactions in celiacs at a less severe level have been described by researchers.4 Further testing is planned.

As we noted in chapter nine however, Burggraf et al. (2011) used mice as research subjects to prove that orally-induced tolerance can be used to bring relief of clinical symptoms, but continued ingestion of a known antigen will result in a progression of intestinal inflammation and antibody production.5 It remains to be seen whether a vaccine-induced tolerance of a food sensitivity might have a similar adverse health effect.

And here are references 3, 4, and 5 from that quote:

3. ImmusanT, Inc. (2011). Nexvax2® – Lead therapeutic. Retrieved from http://www.immusant.com/nexvax2/

4. Tye-Din, J. A., Stewart, J. A., Dromey, J. A., Beissbarth, T., van Heel, D. A., Tatham, A., . . . Anderson, R. P. (2010). Comprehensive, quantitative mapping of T cell epitopes in gluten in celiac disease. Science Translational Medicine, 2(41), 41–51. doi:10.1126/scitranslmed.3001012

5. Burggraf, M., Nakajima-Adachi, H., Hachimura, S., Ilchmann, A., Pemberton, A. D., Kiyono, H., . . . Toda, M. (2011). Oral tolerance induction does not resolve gastrointestinal inflammation in a mouse model of food allergy. Molecular Nutrition & Food Research, 55(10), 1475–1483. doi:10.1002/mnfr.201000634

In case anyone is not familiar with "doi" references, "doi" stands for digital object identifier, and it's a character string (a "digital identifier") used to uniquely identify an object such as an electronic document. You can easily locate the article by "Googling" the character string for any particular doi reference.

You can bet that the trials will be designed to prove that the vaccine works, but I have serious reservations about how well this vaccine will work out in the real world, because most people who react to gluten do not just react to the 3 main peptides that trigger the production of antibodies. We also react to many more of the roughly 300 known peptides in wheat, rye, and barley that cause celiacs to react.

IMO, the entire concept of using a vaccine to combat reactions against gluten (or any other antigen) is misguided and contrary to the mechanism by which the inflammatory process is governed. Vaccines have been traditionally designed to promote the production of antibodies to a pathogen, so that the immune system can develop a defense against the particular pathogen targeted by the vaccine. By creating a mild reaction to a pathogen, this establishes a precedent that adds antibodies to that specific pathogen into the immune systems repertoire of known antigens.

What this actually does is to pre-load the immune system with the ability to rapidly produce antibodies to that antigen, in the event that a re-exposure ever occurs, and those antibodies set off a cascade of events that amounts to a massive attack against the pathogen, which normally eradicates it before it can become established. But this is illogical for gluten, because gluten is normally a regular part of the diet, meaning that re-exposure will occur on a regular basis. That means that the immune system will never be able to eradicate it. And the fact that it can't eradicate the antigen essentially creates a perpetual reaction, and that's the basis of an autoimmune syndrome.

Vaccines tend to work very well, when conventionally applied against conventional pathogens. But the theory behind the so-called vaccines being developed to treat gluten sensitivity is different. The theory here is to promote a tolerance by starting with a small dose, and steadily increasing it in a series of "vaccines" designed to dull the immune system response against the antigen. This is similar to the theory of oral tolerance treatments used for classic allergies.

But as the researchers associated with the last reference cited above proved, the creation of clinical tolerance by using these methods does not prevent the development of intestinal inflammation. Instead, it allows the generation of intestinal inflammation to be perpetuated, which will surely lead to additional autoimmune issues in the future. In addition it should be noted that in the real world, patients who have used such treatments have found that unless they regularly maintain their tolerance by regular treatments, or by appropriate exposure to the targeted antigens, they will also lose clinical tolerance after a relatively short while.

Based on all that, I don't have a heck of a lot of faith in the long-term prospects for a vaccine to control reactions against gluten sensitivity. Yes, I suspect that such vaccines may possibly be able to successfully suppress clinical symptoms for many individuals, but the inflammation in their intestines will continue, and that is definitely playing with fire. It could lead to tremendous legal liability at some point in the future, as the house of cards comes crashing down. But that won't happen for decades, because it takes a long time for inflammation to cause diagnosable disease, and it takes a long time for awareness of such a problem to surface. Until then, the vaccines may smell like a rose, and they will surely appeal to a lot of people who are looking for a quick easy "cure", without having to make any diet changes.

At least that's the way that I see it.

Tex