Enterolab testing

[Beth]

Hi everyone,

Well, Sara, I think you may be on to something with the eggs. I haven't had eggs for almost 48 hours, and the firehose D is disappearing! And I haven't started taking immodium yet because I haven't been able to ge the Rx from the compounding pharmacy. If I am allergic to eggs, this is a real blow to my food life since they might even be higher on the love list than chocolate. Waaaaah!

BUT. Perhaps this is a major clue. So, I'm thinking it's time to order a test from Enterolab to confirm this. I've never had any testing done there because I found that eliminating gluten, dairy, and soy made me feel so much better without having to pay money to confirm the obvious. But I'm wondering if I should maybe get some other tests done at the same time? Obviously money is a factor, but considering how sick I keep getting, it's not the only thing. I don't think I need to get the fecal fat stool test because it's quite obvious I'm having malabsorption. If you were in my position, would you add in the test for Panel C, which tests for immunologic reaction to 11 antigens within four antigenic food categories: Non-Gluten Grains (corn, rice, oats), Meats (beef, chicken, pork, tuna), Nuts (almonds, cashews, walnuts), and Nightshades (white potato)? Anything else you might suggest? I need to get to the bottom of this (ha ha) asap, especially because I'm trying to get pregnant.

Thanks, all!
Elizabeth

[sarkin]

Elizabeth,

That "11 antigenic foods" panel is expensive, as I recall. Enterolab explains that the results are relative, so what you're really learning is which nuts, grains, meats etc. you are most/least reactive to. I did not find it as powerful a tool as the other tests. And, just as you've figured out the egg connection, you are likely now that things are calming down to be able to figure out which proteins sit better with you, and which you need to have only on an occasional basis or in small amounts. (Or in some cases, never - but I hope not.)

I feel your pain, with the eggs. That was a dark day around here... I hope to be able to re-introduce them, some day, after more healing. I'll probably never be able to rely on them as heavily as I was, but I do agree - like chocolate, they deserve a food group all their own.

If I were you, I would consider MRT, which covers a much broader range of foods (and there is a new version of the test coming soon, which might indirectly shed some light on whether mast cells are something for you to consider). Also, since you're TTC, you might consider the Enterolab genetic test. It's priced much lower than other, similar tests, and knowing your own gluten genes might give you some insight for your children's health. (This could wait, of course...)

Also, you can have a reaction to eggs without having the IgA antibodies to eggs. And you can re-test eggs after a few weeks or months, and see whether you still react. Getting your results from Enterolab in some ways is less informative

Don't get me wrong, I'm a huge Enterolab fan. But I think you're in the "watch and learn" phase, and you're willing to avoid eggs if they make you ill, regardless of test results. (Many people cannot make themselves avoid gluten unless they know 'for sure' - and for them, they only feel sure with lab-proof... not symptom-proof.) If that sounds right for where you are, maybe MRT will help - plus your work with a dietician to incorporate the results into your eating plan will set your mind at ease about adequate nutrition for pregnancy, and beyond.

(If you won the lottery, I'd recommend springing for every possible test, but the more we learn, the more we know!)

Hope this is useful, and glad to hear you're feeling better. (But sorry it points to eggs as a problem.)

[Beth]

Hi Sara,

I did do the MRT testing, and it was so disappointing. I only came back with turkey, lemon, asparagus and almonds as highly reactive. Since I very rarely eat those things I really didn't think they were contributing to my flare. I'm going to look more into the 11 antigenic foods panel — I need to do some more research on it. I was really hoping for a magic bullet, but it sounds like there isn't one. So, continued patience . . .

I'll be back later with more questions, but just wanted to respond that I have done the MRT testing and so far I don't see much merit in my own healing. But I'm open to ideas/suggestions!

Thanks SO much for all of this support. I really do appreciate it.
Elizabeth

[sarkin]

I apologize, Elizabeth - I had forgotten that. I have those tests in a fixed order in my mind, because MRT is still ahead for me.

You might call Enterolab and have a conversation with Phyllis or the other nurse. They are very helpful, and will do a better job of drawing that distinction between the "yes" on gluten reactivity, and the 11 other foods.

Lesley and I had very different results on the "11 antigenic foods" panel. My results were that "A mean value of 8 Units indicates that overall, on average, your food sensitivity reactions are mild. However, there was some detectable evidence of immunologic sensitivity to one or more of these antigenic foods."

I also learned that my most reactive foods were oats, walnuts and almonds, and that I had no 'significant' reactivity to the others (and no reactivity at all to potatoes).

I think for the money, I might have been better off on your own detective work - though it would have been a LONG time before I suspected almonds, which I fell hard in love with after eggs broke up with me. And Lesley's results (recently posted) are a whole ' nother level of interesting. (In fact, I am lucky to have had kind of boring results, I do realize that.)

Here are a couple of paragraphs from them about these tests - we are not meant to take the info from them in the same way we take the gluten results, and I have a notion about why that may be wrong, so I'm going to think longer before trying to wrestle it into prose.

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.

So the goal is to figure out whether dietary trials may help, and how to organize them. (There's tons more prose, and I'm happy to PM the whole thing to you.) That's very different from the interpretation of the anti-gliadin and anti-casein antibodies testing, which clearly recommends that we get this stuff the heck out of the diet.

Here's the wording of the interpretation of this panel:

*Dietary Recommendation Based on Test Results to Individual Foods: *This test panel was designed to guide your choices when building a new more healthful, less antigenic dietary plan. The results are delivered in such a way that you are not left with “nothing to eat,” but instead they guide you in avoiding the foods in each group that are most stimulating to your immune system. We discourage dietary changes that involve removing too many foods at once. This can lead you to feel too hungry too often, especially if adequate healthful replacement foods are not readily available. Dietary elimination (beyond gluten-free, dairy-free, and soy-free) is best approached over a period of weeks to months and sometimes years, removing one or two additional foods at a time, rather than removing many foods at once.

If you are experiencing symptoms possibly attributable to chronic immunological food sensitivity, such as chronic headaches, abdominal symptoms (pain, cramping, bloating, gas, diarrhea and/or constipation), sinus congestion, arthritis, chronic skin problems/rashes, fibromyalgia, and/or chronic fatigue, it may benefit you to avoid the foods for which you are most reactive first, followed, if necessary by those to which you are intermediately and least reactive.

You can use the hierarchal results from each specific class of food, within which you reacted to multiple antigens, to make the wisest dietary decision when choosing which food(s) from that class to keep in your diet. Choose the food(s) to which you were least reactive (or in the case of potato, non-reactive).

I don't entirely understand why they recommend not eliminating all suspects at once - like you, I had already done my best guess at that, and I'm so glad I did. Rereading this, I may re-test almonds sooner than eggs. It seems to me they're saying - you may be able to eat your 'intermediate' foods, so get rid of the most reactive ones, and see how it goes. I interpret that to mean, these tests just aren't as clearly predictive as the tests for antibodies to the Big Baddies.

Sorry this got so long!

[Lesley]

Yeah! I did have VERY interesting results! Sensitive to just about everything. Not much left.

I did do the full test, and I am glad I did, because I was living on chicken and rice, and I tested very sensitive to both! SO no wonder I was feeling terrible.

But then, I am feeling terrible now, and eating ONLY meat and potatoes.

For me cutting out eggs and dairy was a HUGE blow. I am not a big meat eater. I ate beef and/or lamb every fortnight or so. If I ate meat it was usually chicken. I ate lots of eggs, whole grain, veggies and fruits and dairy. I mostly ate sweet potatoes. That was the bulk of my diet. So this meat and regular potatoes thing for every meal is really tough.

And the fact that I am sensitive to gluten, rice, soy AND corn. Given that and eggs too, there is not much left.

I am going to try oats since that showed the least sensitivity, but not now, while I am in so much of a flare.

I truly understand you, Beth. Having MC is HARD WORK!

[Beth]

Sara - it took me a long time to read this. It's pretty dense. But thank you for posting all of this. It's very helpful. I'll call the nurses at the lab and see what they say.

Lesley - I haven't been following your progress, so sorry to ask you what you've probably already been covering here - but are you feeling better staying away from your problem foods? Are you seeing results? In other words, are you happy you did the test, even though it means cutting out foods you love?

Thanks!
Elizabeth

[Lesley]

I am very glad I did the tests, although the results are extreme. I have been in a very bad flare for a VERY long time. I am also on too many meds prescribed for all sorts of ills over the years, and I am sure they are contributing to continued problems.

I am having terrible problems with GERD. I went off the PPIs cold turkey (until I took one today to see if all the pain was from GERD) and it has been really hard.

I had already gone off gluten and bovine dairy. Nothing good was happening, so Tex suggested I try going off eggs and goat's milk cheese. That was really hard.

I am still struggling, but then I always take things to extremes. Tex says only 1% of MC-ers are rice sensitive. I am always in the 1% except where it comes to money!
If I could have rice in anything life would be easier. If I could have eggs it would be MUCH easier. But as I said, my results are extreme. I have been sick for a long time, and it might take me a long time to get well.

Only you can say whether it's worth it to give up foods you love in order not to have the explosive and horrible D (or C if your gut leans that way - mine does). I just want to get rid of the pain, the brain fog, the exhaustion AND the gut issues. I will do just about anything to feel well for one day, and then another.

[Beth]

Lesley - I am so sorry to hear how extreme your case of MC is. Like you, I definitely want to get better. The fact that I haven't had chocolate in weeks or eggs in 72 hours is SO hard. But get back to fullness of health is my most desired gift. We'll get there! Especially with the help of the incredible people on this forum.

Wishing you grace on your journey,
Elizabeth

[Lesley]

If you are feeling better it's worth it.

[MaggieRedwings]

Hi Lesley,

I am one too who can take things to an extreme. However, when it comes to anything that triggers the big D I like being extreme. I have been sorting out a couple of foods that I was always able to eat and rice is one of them. However, for the past few months every time I have rice it comes back to haunt me so I might also be in that 1%. Hang in there.

Love, Maggie

[sarkin]

I don't know where this would be useful for all "tough cases," but I have felt so much better without *any* grains that I don't plan to re-add them to my diet. I don't say this will fix all issues, but I suspect that being grain-free and legume-free has contributed to my success.

I agree with Maggie - actually also with Lesley & Elizabeth - and I'd go a step further. Extreme is sometimes the easy path.