Need guidance

[framedame]

Tex wrote in another post: soon as the drugs are discontinued, the MC symptoms return, because the inflammation will always be present, in response to the trigger foods.

Will the MRT test add more information than an IGG food sensitivity test that my ND did? She also did a cross- reactive food test from Cyrex Labs - Array # 4. No real conclusive results.I've been on one course of Entercort for 4 1/2 months and diarrhea returned after two weeks. I went back on Budesonide for one month, and the diarrhea returned after two weeks being off it. I also developed gastritis while on the Budesonide and had to take Pepcid for that. The gastritis was gone when I stopped both the drugs. I do not want to go back on the drugs so I've been eating - rice- sweet potatoes - Kitchen Basic broth - applesauce- bananas - chicken -water. None of these foods I reacted to on the food sensitivity test that I had. I'm going on my 3 week of watery D. Should I be seeing some change in my BM's? The good thing is I'm only going once to twice a day, but my energy level is not great and my sense of humor has plummeted. I'm trying Curcumax Pro( curcumin for 3 days to see if that makes a difference - so far no change - maybe not so gassy?). I'm on a probiotic - ProbioMax Plus by Xymogen. And lastly, I'm taking a Mindfulness meditation class which can only help mentally. Oh yeah I do accupuncture every two weeks - which does help
Thanks,
Lassie






[/quote]

[sarkin]

Lassie,

Of all the things you list, the likeliest suspect is the probiotic. I would take a week or two off from that, and see. Many of us have reacted to probiotics, and a lot of them are dairy-derived, so it's kind of unfair on you to go to the trouble of avoiding a whole food group, and have it sneaking in via another path.

I would also avoid the Curcumax for now - sometimes the inactive ingredients in those formulations can cause a problem, which of course would prevent the curcumin itself from being beneficial. I do add turmeric to smoothies, and use it in cooking, without any problem.

(You may, of course, also have a reaction to something else on your list, but your foods are not on the Most Wanted list of suspects.)

To answer your question - the MRT tests, and the tests by Enterolab, are different from those run by your ND. The Enterolab tests look for IgA antibodies in stool, and are more accurate than IgG food-sensitivity tests (which are notoriously unhelpful and confusing). The MRT test is mediator-reaction testing, and looks at other mechanisms (my science here is weak).

I hope you get some relief soon. I did well with Pepto Bismol, but not everyone can tolerate it.

Hopefully you won't have to give up the Kitchen Basics broth - I am a homemade broth fan, but can really appreciate the convenience and time-saving of storebought, and that is reputed to be a good brand...

Hope you're feeling better fast,

Sara

[Zizzle]

I agree with Sara. I recently tried a potent multi-strain probiotic recommended by Dr. Mercola, and I had a VIOLENT reaction to it. Tons of green, watery, rapid-transit D. I had to stop by day 5 or go to a hospital!! In the future, I'm going to test probitics one strain at a time.

[Kari]

Hi Lassie,

I think the fact that you're going only once or twice a day is significant. For me the BM's have taken a very long time to show improvements in "quality". After 15+ months of healing with diet alone, I still do not have what I consider "perfect" BM's. Along the way of healing, I've always considered the "number" of BM's more significant than the "type".

At this point in time I mostly go once a day, with varying degrees of "soft" BM's, but since the other troublesome symptoms, such as bloating, brain fog, stomach gurgling, etc. are gone, I'm willing to be patient. It takes a long time to heal from gluten damage, and mine happened over my lifetime, as bread was the most important food in my diet. Ironically, I always used to say: "I'll happily give up any food, except my bread" . I discovered through my Enterolab test that I have two celiac genes - so my gluten sensitivity came from both sides of the family :(.

As far as MRT, I recommend it, since it helped me enormously in terms of figuring out a relatively "safe" and balanced diet. Before I did the test, I was doing the elimination diet, but could not figure out a single safe item on my own. I was down to five foods, and when I got the MRT results, I learned that I was highly reactive to 3 of them (bananas, coffee and garlic). MRT gives you a guideline which is easy to follow. Like any tool, it's not perfect, but for me it has been well worth the money spent.

If you haven't done so already, you may want to check out the MRT section in this forum, as it will give you more detailed information from those of us who have taken the test.

Lots of luck on your journey back to health - I look forward to follow along through your posts here.

Love,
Kari

[framedame]

Buongiorno All,
Thanks for the info on the probiotic, Sara and Zizzle. I did check and the one I take is DF. Should I still go off it? Is it the dairy that's the issue or the strains? I was also taking the probiotic from Mercola before I was DX with celiac and MC last January. I will delete the curcumin

Hi Kari,
I do feel fortunate that I'm not going constantly, however its just water and nothing else - like the colonoscopy prep. How long was your BM just water??Please don't tell me 15 months. I'm sure getting the number of toilet visit visits down was a real a major accomplishment.
For 10 years, I was gluten free, but not too the extend I am now with possible cross contamination etc. That is why I was shocked when my blood test came back positive and gene test showed I had the genes for Celiac too. I had a colonoscopy and endoscopy ( same diet I had been on bc I didn't have time to challenge and realy wasn't keen on going back on gluten). My GI doc said he might find something and he did - dX for Celiac and MC. D was never my problem until 2 years ago and positive blood test - that's when my primary got me to the GI Doctor. I've been off soy due to Hashimoto's thyroiditis 10 years ago. When I called Entolab I would have to go on soy and dairy, yeast, egg to built up antibodies for the test to work. Since I already knew I had celiac I did not go ahead with the test. The only food I've been able to figure out that I've been intolerant of is gluten. I'm going to check out the MRT test.

Lassie

[sarkin]

Lassie,

I believe it's worth testing whether dropping the probiotic helps - whether it's because of dairy, or for another reason. (You have nothing to lose, and can always add it back in a couple of weeks.) Dairy is definitely #2 suspect after gluten. You can certainly test eggs and yeast on your own, and since you already know your celiac status, it makes sense to look into MRT. I think you're also wise to suspect cross-contamination, if you'd been GF for that long and still had detectable antibodies in blood, and visible celiac signs on endoscopy. Something was causing that, and that something usually is Suspect #1, as you are quite aware!

You're not alone with Hashi here, as you may already have learned...

[tex]

Lassie,

Regarding the probiotic, besides the lactose in some probiotics, many of us react to certain strains of probiotics. It's an individual situation, and responses can range anywhere from excellent, to so-so, to no effect, to slightly unpleasant, to total digestive system disruption.

I agree with what everyone else has said in this thread, and I'd like to point out that having a diagnosis of both celiac disease and MC, can imply the possibility of a very difficult case to resolve. As Sara mentioned, the fact that you tested positive to the celiac blood test, after avoiding gluten for 10 years, suggests that even tiny trace amounts of gluten may be a real problem for you, because that test is very insensitive. It will only detect fully-developed celiac disease, so you were obviously having major reactions to small amounts of gluten.

The meditation classes and accupuncture can only help. I agree about the frequency being a good sign, also. Back when I was trying to heal, anytime I could get the frequency down to one per day, I was a happy camper.

Tex

[framedame]

Sara - I'm going to give it a whirl with no probiotics for a few days. But I thought a lot of people on the forum used probiotic and recommended them. Do you take them?

Tex - Any good sign I'll take! BTW the two blood test my GI has done since DX for celiac has shown that I'm complying with the diet and has been negative.
What the members on this forum have had to go through with MC during their healing process is really inspiring. It reminds of the book UNBROKEN.
I really should give you another picture to post of me smiling. I must have been in a really bleak mood this week!

[Kari]

Hi Lassie,

I had WD many times a day for 10 years before I discovered the diet connection. So it took a few months before the consistency of my stools started to improve. Patience seems to be a key ingredient in recovering, and it sure can be trying at times. Finding this forum has been such a huge part of my healing - the people here are simply awesome.

Don't worry about venting here, that's one of the many purposes this forum serves. We can all relate one way or another to what you're going through. I look forward to following your progress - it's a journey we're on, and we have good company here .

Love,
Kari

[Polly]

Hi Lassie,

When it comes to MC, ANYTHING we put into our mouths can be suspect, unfortunately. Especially initially, it is often best to eat only fresh foods (nothing processed from cans or boxes) that are simply prepared in your own kitchen. It's called "shopping the perimeter" of the grocery store because that's usually where the fresh foods are. Avoid those shelves in the middle of the store, if possible.

I am one who has tried several probiotics and has been unable to tolerate any of them. I think it depends on the specific bacteria in one's gut as to whether they can be tolerated, and there is no scientific study on this to help us figure it out.

Good luck!

Hugs,

Polly

[Lesley]

Last night everything hurt so bad I was literally crying. And I was so exhausted wist such terrible GERD I was crying from that too. Not usual for me. I didn't take a pain pill because I had taken one in the morning, and I am in C mode right now.
I wasn't really interested in m genetic results. Both my parents are dead, my sister is anorexic, and, for numerous reasons I don't talk to her. My brother is a physiologist and a "know it all" and will never believe anything like this.
I am interested in cutting out foods that will set this off, and I was right. Eating the wrong things right now. It's NOT sweet potatoes. It's chicken and rice!

These are the Enterolab results:

A + C) Comprehensive Gluten/Antigenic Food Sensitivity Stool Panel
(Combines Panels A and C at a discounted price)
Mean Value 11 Antigenic Foods 23 Units (Normal Range is less than 10 Units)

Fecal Anti-gliadin IgA 138 Units (Normal Range is less than 10 Units)

Fecal Anti-casein (cow’s milk) IgA 29 Units (Normal Range is less than 10 Units)

Fecal Anti-ovalbumin (chicken egg) IgA 33 Units (Normal Range is less than 10 Units)

Fecal Anti-soy IgA 29 Units (Normal Range is less than 10 Units)

Interpretation of Mean Value 11 Antigenic Foods: Overall, there was only a modest amount of immunological reactivity detected to these antigenic foods in terms of fecal IgA production.

Many foods besides gluten, cow’s milk, eggs, and soy are antigenic in their own right; the main classes of which include other grains, meats, nuts, and nightshades (potatoes being the primary food eaten from this latter class). Minimizing exposure to antigenic foods is an important component of an anti-inflammatory lifestyle to optimize immune system health. This is especially important for those with chronic abdominal symptoms and/or chronic immune/autoimmune syndromes, or for those who want to prevent them.

For immunologic food sensitivity testing, the actual numeric value (in Units) for any given test or for the overall average of a group of foods is important mainly for determining: 1) if the immune reaction is present or absent, and 2) in relative terms, the immune reaction to different foods tested in a given individual at a given point in time. It is not a score, per se, to be interpreted as a measure of clinical or immunological severity for that individual or between individuals. This is because the amount of IgA antibody made by a given person is particular for the immune function of that person. Furthermore, sometimes a person can display what can be viewed as immunological and nutritional “exhaustion,” whereby a more significant and symptomatic immunologic food sensitivity is accompanied by a lower positive measured anti-food antibody value (rather than a higher positive). In such an instance, following clinical improvement and improved nutritional status (while the suspect antigenic foods are withdrawn), values can actually be higher for a time before finally falling into the negative range after several years.

Thus, the overall average food sensitivity antibody value for this panel is an assessment of your overall humoral immunologic food reactivity, which can help determine if dietary elimination trials may help you. If the mean value is less than 10 Units, the humoral immune reactions can be considered absent (negative); if greater than or equal to 10 Units, they can be considered present. Rather than reporting the absolute value of a positive result for each individual food, since it cannot be considered as an assessment of severity, the results are reported in relative terms between the foods tested. This provides you with the knowledge of which foods are stimulating the most immune response which, in turn, is indeed the most practically applied information to dietary elimination trials. The report information that follows is based on these facts.

While all of the foods tested can be immune-stimulating, the hierarchy of reactions detected were as follows:

Food toward which you displayed most immunologic reactivity: Chicken, Rice, Tuna, Corn
Food toward which you displayed intermediate reactivity: Pork, Cashew, Beef, Almond
Food toward which you displayed least immunologic reactivity: Walnut, Oat
Food for which there was no significant immunologic reactivity: White potato

Within each class of foods to which you displayed multiple reactions, the hierarchy of those reactions detected were as follows:

Grains:
Grain toward which you displayed the most immunologic reactivity: Rice
Grain toward which you displayed intermediate immunologic reactivity: Corn
Grain toward which you displayed the least immunologic reactivity: Oat

Meats:
Meat toward which you displayed the most immunologic reactivity: Chicken
Meat toward which you were next most immunologically reactive: Tuna
Meat toward which you displayed intermediate immunologic reactivity: Pork
Meat toward which you displayed the least immunologic reactivity: Beef

Nuts:
Nut toward which you displayed the most immunologic reactivity: Cashew
Nut toward which you displayed intermediate immunologic reactivity: Almond
Nut toward which you displayed the least immunologic reactivity: Walnut

So I have been eating chicken and rice!
I have this beautiful chicken broth, and wonderful chicken breasts - I guess I give those away )-;. And all the tuna, which I LOVE in salad, and always my "go to" protein when I need some, especially in the summer.

On to turkey and beef. Can I try salmon? I have a lot of wild salmon in the freezer.

Can I try oats? Or should I skip those for now?
What about fresh? Can I juice again?
I need to find nuts I can eat. What about seeds? And other nuts?
I guess I can eat quinoa and grains like that?

And MOST IMPORTANT QUESTION:
Should I do the MRT to narrow it down some more?

[tex]

Hi Lesley,

Those are pretty impressive results. Enterolab seems to have significantly improved it's interpretation of their 11 Antigenic Foods test results, and I like the way that they presented that information on your results - that's very useful, IMO. Based on that, if I were you, I would try incorporating their results and recommendations into my diet, and giving it some time to take effect, before deciding whether or not to do the MRT. You can always do the MRT later, if you aren't completely satisfied with your response to the diet changes.

Regarding other foods to try, remember that if you haven't eaten a food in many years, you may not have shown a response in the test, simply because the immune system didn't have any information on file for that food, but after you eat it a while, you might begin to develop antibodies. That risk shouldn't apply to any foods that you've eaten within the past few years. And, of course, just because you haven't eaten a food in many years certainly doesn't mean that you are bound to develop a sensitivity to it. The odds say that you will not react to it, but a small risk exists, so I thought that I should mentioned it, because something like that might not be detected by their test. Remember also, that the test only covers 11 foods, (which is why you may want to consider the MRT later, if you're still having issues).

I would guess that salmon should be safe, and it would have no connection to any tuna-sensitivity. Personally, I would be cautious about oats, because many of us here are sensitivity to the prolamin avenin in oats, (including me). However, based on their test, it's the safest common grain option available to you, so if you want to try a mainstream grain, oats is the only game in town, for you - be sure to buy oats certified to be free of wheat. If I were in your shoes, I would wait until I have been in remission for a while, before trying oats - that way it's much easier to tell what you're doing.

Peanuts, (and other legumes), may be a problem, because of your sensitivity to soy, but you might try walnuts, pistachios, pecans, etc., and you can probably handle sunflower seeds, pumpkin seeds, quinoa, buckwheat, etc.

I really don't know what to say about juices, but I suppose the surest way to find out is to try them. I couldn't handle any citrus fruit or juice, because they immediately soured my stomach, and I was prone to nausea and sometimes vomiting, during my reactions, but YMMV.

Good luck with working out your new diet - I hope it brings results quickly. Do you mind if I add your test results to our collection?

Thanks for posting these results. I hope you're feeling much more optimistic, this morning.

Tex

[Lesley]

Of course not! Why would I? If they help anyone else it would be great!

A lot of stuff to throw away )-;. And no type of bread!!! Just threw out my Udi bread. No rice or corn crackers. No pretzels. Nothing crunchy at all!!!

I couldn't drink juices from citrus either. Very sour stomach, but when you brought up apple cider vinegar I wondered if I had LESS severe GERD when I was drinking some juices, notably apple, pear, papaya, carrot, cucumber, marrow, spinach. I wondered if those were the type of acids I actually need in my body.

Right now I am having horrible heartburn with eating ANYTHING. It's almost like it burns going down, and gets a little better once it IS down.

OK, I will not try anything new till I get into remission. I WAS eating goat's milk cheese and yogurt until recently, so if they didn't show up, can I eat them?
But now I am in C mode, what can I take to get going with NORMAN, or is is to have one not normal BM a day than to have none at all?

[tex]

Remember that the Enterolab tests do not check for goat's milk-sensitivity. The casein test only covers cow's milk, and most people who are sensitive to cow's milk are also sensitive to goat's milk, (though exceptions exist).

If you want something crunchy, almost everyone here can safely eat fried pork skins. They don't provide much nutrition, but they are indeed crunchy, and they're safe.
Spinach is high in oxalic acid, which bothers some people, but not everyone.

When I was recovering, and on a low-residue diet, when I shifted to the C phase, I typically didn't have any BM at all, for about 3 days, sometimes longer, unless I forced a BM, and if I was successful, it would be very tiny - presumably because after the D phase, there was very little left in my intestines, so it took a while for enough residue to accumulate to form a normal stool.

Tex

[Lesley]

They said I couldn't have pork )-;. So those are out. Practically everything is out.

I am going to see if I can get some gluten free oats. And I will try goat milk and see what happens.

How did you force a BM? I am assuming you did it without causing D?