MICROSCOPIC COLITIS SUPPORT

Hello again -

I sent off my stool sample last week and already have my Enterolab results! I have put off sending in my sample for a long time because I feared that I would come back reactive to everything. Well.... my intuition was right. I am extremely frustrated by the results and not really sure where to go from here. If you remember I am the one who just had my first child (she is 4 months old), and I am already strapped for time and stressed out enough. I don't have any free time to prepare special meals for my dietary needs let alone time to shower with a newborn. I was started on Budesonide 1.5 weeks ago and I am seeing slight improvement on the 9 mg dose. In fact, I only had 1 bowel movement today which is unheard of!!! It was still soft but hey I will take it. I have been gluten and dairy free for years but apparently I have been getting "glutened" somehow based on my results from Enterolab. Ugh. OK here goes:

Fecal Anti-gliadin IgA 154 Units (Normal Range is less than 10 Units)

Fecal Anti-casein (cow’s milk) IgA 47 Units (Normal Range is less than 10 Units)

Fecal Anti-ovalbumin (chicken egg) IgA 17 Units (Normal Range is less than 10 Units)

Fecal Anti-soy IgA 32 Units (Normal Range is less than 10 Units)

Mean Value 11 Antigenic Foods 40 Units (Normal Range is less than 10 Units)

NoneFood to which there was some immunological reactivity (1+): None
Food to which there was moderate immunological reactivity (2+): Oat, Rice, Beef, Chicken, Almond, Cashew, Pork, Potato, walnut
Food to which there was significant and/or the most immunological reactivity (3+); Tuna, Corn

I feel like I essentially cannot eat food in general based on these results. Rice has been my staple and yet I react to it?? I just feel lost at this point. I mean WTH am I supposed to eat? I am losing weight rapidly and I am starting to look like a holocaust survivor. Ugh. I am home alone most days with my daughter and extremely tired, stressed, and sick. My parents are coming to stay with me for 2 weeks which will be nice but it won't last forever.

I guess I am just wondering if anybody has any advice about where to start with food. Should I just avoid my 3+ foods and still eat some of my 2+ foods? I mean I have to eat something. I have added a magnesium supplement spray along with my vitamin D. I am making bone broth as we speak. Any other suggestions? And.... has anybody ever seen Enterolab results this crummy? Or am I just that lucky?

Hi ConstantD:


I leave it to Tex to go deeper and intepret your results, but in the meantime you might be interested in reading other members' test results from Enterolab.

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=18305

Lilja

Many of us, myself included, have had similar results. I would avoid all the foods you tested positive for. Find a protein source you can eat. Lamb, turkey or venison are good choices. Then add a vegetable like sweet potato. Make sure you eat some fat. Olive oil or coconut oil are usually good choices. I ate ground lamb and kale chips almost exclusively for a long time. I also ate and still eat bone broth. I buy turkey drumsticks and simmer them in salted water to make the broth. If you can find a few safe foods and stick with them for as many weeks or months as it takes things will get better. If you need more calories just eat more of your safe foods. Having a infant makes it harder so simplify your eating and it will be one less thing to think about. Also you need to figure out what the source of gluten is in your diet. You can get better but it requires diligence and a heavy dose of patience.

Jean

Hi CD,

Believe it or not, results similar to yours are somewhat common among the members here. It's always a shock to receive such results, and of course we would rather that the results were better, but it is what it is, so we have to make the best of it and do what we have to do to get our life back. And in a way those test results are good news because now you know exactly which foods are causing your digestive problems, so you no longer have to guess. Now you can develop an eating plan that will allow you to recover

Jean has already given you some great suggestions that I totally agree with. Her suggestion to keep your diet simple is especially important, because in general, the simpler our diet, the faster we recover. And this is particularly true for those who have many food sensitivities, because every food we add to our diet magnifies the risk of causing a reaction. Simpler is always better.

If you haven't done so already, download the "Diet Guidelines" from the "Downloads" page at the Microscopic Colitis Foundation website. It will list foods that none of us react to, and others that may or may not be options, plus other general tips. Here's a link:

http://www.microscopiccolitisfoundation ... loads.html

Early on, if I were in your shoes, with such a high score (40) on the 11 other antigenic foods, here is what I would do. You didn't post the way that the various types of foods are compared (that is, the foods in each category that are most reactive, moderately reactive, and least reactive,etc.), but those rankings are important. I would at least avoid the top 2 in each category. In the meats category for example, I would avoid the top 2 and maybe try the least reactive meat. But you don't even have to do that because there are plenty of safe meats available, including turkey, lamb, duck, goose, rabbit, venison, etc., as listed in the download available at the link above. Given a choice, it's always safer to eat foods known to be safe, rather than foods that might be safe.

How does rice rank in your test results for the grains? Is it the most reactive grain, the least reactive, or in between? If it's the least reactive then you may be able to continue to eat it, but if it's either the top or middle rankings, I would avoid it.

Basically, you will need to follow a modified paleo diet — IOW a paleo diet with certain foods removed. You appear to react to all non-paleo foods.

There are still plenty of foods that you can safely eat. You just have to avoid the many foods that you now know are toxic for you. It's tough at first, but it gets easier as we go, and the result are so worth it.

Tex

Thank you everyone for your replies. Luckily rice was the "least" antigenic grain out of all of them, but still 2+. I have a couple of other questions though. Since tuna was one of my 3+ foods, does this mean that I shouldn't eat other fish?? I usually eat wild-caught fresh salmon at least twice a week living in the Pacific northwest. Any other fish I should be concerned about? And why do they only test for tuna? Additionally, since all nuts caused reactions for me does this mean I should avoid all nut butters in general? And what about coconut? I use coconut milk as well as coconut aminos. Can I no longer use these products? Luckily I live about 2 blocks away from a Whole Foods (aka whole paycheck) in Portland Oregon so I do have options. I'm pretty sure I was getting glutened from the toaster oven in our house where my husband toasts his gluten-filled bread. And eating out I'm sure there has been cross-contamination.

And lastly, does anybody ever gain weight back? I have always been thin with a small frame. I gained a whole whopping 30 pounds during pregnancy and was up to 140 pounds. IT WAS GLORIOUS. Otherwise my usual weight is anywhere from 110 to 115 pounds. Although right now I'm at 105, dang it. My father also has this exact same disease (obviously there is a genetic component) and he is sooooo thin and always has been.

One other question: whenever my bloodwork is completed I always have slight/mild elevations in one of my liver transaminases (ALT/AST) and this last time it was my alkaline phosphatase. Is this probably just from chronic inflammation of my GI tract? The numbers are usually only a few points above normal so the doctors don't usually care. Anybody else have this? I had full complete bloodwork with CBC/vitamin levels checked last week and all looked good except for my alkaline phosphatase. Hmmmm.

I will have to show the Enterolab report to my younger brother. He has a phD in Immunology and is currently completing his post-doctoral at Stanford. Would be interesting to see what he thinks.

You should at least be able to rotate rice in your diet. It might or might not be a problem if you eat it every day.

EnteroLab tests for tuna because it is the most likely fish to cause a problem for MC patients. Many of us who are sensitive to tuna also seem to be sensitive to salmon. But there are exceptions of course, and other fish may be an option. Unless you were previously allergic to shellfish, they should be safe options, also.

Your question about nut butters is tricky. Early on, I couldn't eat any nuts or nut butters without digestive problems. After years of healing however, I am able to handle nut butters just fine even though I can't eat nuts without major problems. Anyone who is sensitive to soy (which includes me) has to avoid peanuts and most other legumes, however. You will probably just have to experiment to determine whether or not you can handle nut butters. It would be safer if you waited until after you are in remission to do that experimentation though, since every setback delays the onset of remission. That said, I was always able to use almond milk without any problems.

Coconut and coconut milk works fine for almost all of us, but a few people are sensitive to coconut.

You are correct about the cross-contamination risks associated with toasters and eating out. If you use a toaster oven that's used for wheat bread, put a liner of fresh foil under your GF bread to keep it safe.

Most of us are able to gain our weight back after we recover. Our weight mostly depends on our diet. If we eat a paleo diet (no grains) then gaining weight is much more difficult. To gain weight we have to increase our calorie intake.

If your ALP is elevated more than your AST and ALT that can be a sign that your bile duct may be blocked by gallstones or scar tissue from surgery or something of that sort. Gallbladder and liver enzyme issues are somewhat common with MC because the inflammation tends to affect many organs of the digestive system. Minor elevations in enzyme levels are usually transient and will fade over time.

Untreated gluten sensitivity can mimic fatty lever disease, and this can be a problem for some of us until we get our diet under control. Your liver enzymes should normalize after your digestive system has time to do some healing in response to diet changes.

I would be very interested in hearing about your brother's response to your EnteroLab test results, because I'm very interested in discovering whether the curriculum is being changed in immunology education these days to reflect current research. Traditional immunologists would typically dispute the validity of the EnteroLab tests, despite the fact that those test results lead to great recovery results in the real world. Traditional immunologists know virtually nothing about the digestive system. Consequently most of them only understand allergic reactions (IgE-based reactions) and IgG-based reactions, and they can't comprehend the IgA reactions that occur in the gut to cause GI inflammation.

Tex

My gi diagnosed me after a 31 biopsy procedure. I have been on budesonide off and on (mostly on) for 2.5 years. Strict diet but still have flares. Anyone else diagnosed without entero lab?

Tcrios wrote:My gi diagnosed me after a 31 biopsy procedure. I have been on budesonide off and on (mostly on) for 2.5 years. Strict diet but still have flares. Anyone else diagnosed without entero lab?

Tricos,
I was diagnosed in 2010 at a university hospital, after several biopsies and have been on a 6-months Entocort regimen for two periods, both in 2010 and in 2014-2015. I never used EnteroLab.

The key to get off Entocort without having flares, was to taper off very slowly. In my case I used 7 months to get off last time. I was adviced by this board to take an antihistamine (Zyrtec in my case) the last 14 days before the last Entocort capsule and also approx 14 days after.

Together with the bland diet, CF, GF, egg- and soy free and high amounts of vitamin D3 and Magnesium especially, I have been able to avoid major flares. There has been some minor ones, due to "accidents", but they have typically only lasted for 24 hours or so. If I suspect that I have a flare coming, I take a few Zyrtec.

Lilja

Anyone else diagnosed without entero lab?

Enterolab does not diagnose MC - it provides results of major food intolerances.


in line with Lilja's reply, strict diet and medication does work for most, albeit the key to success is linked to the body having good Vit D3 and magnesium levels.
Medication has limited scope to work if you are deficient in Vit D3

Thanks to both of you for the insight. I do take D3 and Magnesium but I have not had them tested.

Dear Members
Is allegra a good option as well?Would I take one when I feel that my stomach is getting weak or could I stay on one pill every week?