Need guidance

[tex]

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

I eventually trained myself to pass a small BM, first thing in the morning, every day, by using gut-straining and vein-popping pressure, if necessary, but I don't recommend that as an approved procedure, because my colon eventually became a disaster area, as a result. After about a week, when my reaction would get to the D phase, the D would be automatic, anyway.

Tex

[Gloria]

Well, Lesley, I can tell you're in a state of shock and panic. That's pretty normal after receiving test results. We've all thought that we surely wouldn't test positive to many foods at all, and it takes a bit of time to adjust to our new reality.

You understandably are wondering what kind of bread you can eat with rice and corn off-limits. I can tell you that it's quite possible to make muffins, pancakes, waffles, bread and tortillas using just two flours and two starches. I have had to change my recipes many times when I found that I was intolerant to a GF flour that I had been using. I am now using only almond flour, corn flour, cornstarch and arrowroot to make my baked goods. There was a time when I didn't use any of those flours; I used completely different ones, yet my recipes have stayed the same, except for substituting the flours. I am not able to make yeast bread since I've eliminated quinoa and rice flour, however.

I posted a couple of threads a while ago about using and testing GF flours. You can read them here:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=13501

http://www.perskyfarms.com/phpBB2/viewt ... torder=asc

You have many other GF flours to choose from: quinoa, buckwheat, potato, amaranth, teff, millet, and others. You may not be able to make bread, but you will be able to make the items I mentioned above, all without eggs. I've posted my recipes in Dee's Kitchen.

The good news in your list of foods is that you can eat potatoes, beef, and turkey. You can do a lot with potatoes.

As to eating something crunchy...that will be more difficult, but not impossible, without rice and corn. You may be able to make your own GF flour tortillas or crackers with salt sprinkled on. I recall that I made quinoa tortillas which tasted OK. You can spread a nut butter on them to satisfy your desire for a crunchy food. Sunflower butter is one possibility. I have posted a recipe for making GF tortillas in Dee's kitchen. I think others have posted recipes for crackers.

Hang in there. We will help you through this. You'll have to readjust your image of what constitutes a good meal, but you can eat nutritious and tasty meals.

Gloria

[draperygoddess]

Well, Lesley, at least you know why you haven't been getting better! Hope you're able to figure out some things you CAN eat so you can get better! Been thinking about you lots lately--so glad you did the Enterolab testing.

Cynthia

" If the hat fits..."

[framedame]

Hi Lesley,
I'm so sorry about your tough night! I agree with Gloria that test results can be shocking and disheartening. I sympathize with you.
In terms of your C, I was wondering if Aloe might help. Has any one on this forum tried Aloe for C.
I did not know that Enterolab did food sensitivities. It was a stool specimen? I'm curious how you'd submit a stool WD for testing?? Do you have to wait til your BM becomes more formed??

TEX - I know a lot of members have the Enterolab testing for the food intolerance (gluten, soy,egg, dairy,yeast etc) and then have the MRT test for food sensitivities, which are delayed reactions. In members' profiles the list of intolerances also contain sensitivities too, or not? Am I wrong in assuming that the intolerances don't change and need to be avoided forever and the food sensitivities can change and you might be able to have occasionally? Also I had Igg test bloodwork - is the Enterolab test different then the bllood test for Igg or more exact bc it's stool and not blood?. Do people do the MRT test bc it has more foods and chemicals tested than the Enterolab? Just curious which what way to go for testing.
Thanks,
Lassie

[sarkin]

WOW,

Lesley, you and I may be the only two who have done the "11 antigenic foods" panel, and your results are much more definitive (though, unfortunately, it means that you have to eliminate more foods, at least for now). And virtually all your "most reactive" in those categories were my "least reactive" - good thing no one's trying to cook for both of us at once!

You're also not the first to discover that your "go-to" foods are off the list. I hope you'll soon fine new favorites - we've been making lots of turkey soup lately.

You must be reeling from the results - but I hope you are soon heading on track for feeling much better with the power of this new information.

[tex]

Hi Lassie,

The IgG antibodies on which the blood tests are based, detect "mature" reactions, IOW, reactions that have been going on for a long time, (which may or may not be active at the moment), and which can originate virtually anywhere in the body. The Enterolab tests are based on IgA reactions, which take place in the intestines, that tend to cause the most prominent clinical symptoms associated with food-induced GI issues. IgA antibodies are much more specific for detecting food-sensitivities, because those antibodies are produced in the intestines, (where the reactions are taking place), not in the blood.

Many members tend to use the words "intolerances" and "sensitivities" interchangeably, to refer to autoimmune type reactions. Some foods do not cause an autoimmune reaction, but they mechanically or chemically irritate the gut, and we usually refer to those foods as "irritants", or something similarly descriptive. Foods in the irritant class include sources of fiber, spicy seasonings, etc., and those foods can usually be safely reintroduced into the diet after remission is achieved. Most, (but not all), food-sensitivities are a result of the triggering of certain genes, so they are usually permanent, (unless the genes are somehow altered in the future). A yeast-sensitivity, for example, is seldom permanent, (based on our accumulated experience here on this board). Sensitivities to gluten and casein, on the other hand, are virtually always permanent. It's possible to be asymptomatic to those foods, (much like asymptomatic celiacs), but the damage to the intestines continues, even in the absence of clinical symptoms.

Basically, the Enterolab tests are extremely specific, and very reliable, without the need of further testing, whereas the MRT results require verification by careful dietary testing, using the test results as a guideline. Yes, the MRT includes many more foods, additives, and chemicals for which no test is offered by Enterolab. On the other hand, the MRT results often appear to completely miss the most basic sensitivities, such as gluten and casein, for some strange reason. Therefore, most people do the Enterolab testing first, in order to get some definitive answers about the most common food-sensitivities, and if avoiding the foods that show positive results will not bring remission after a reasonable amount of time, the MRT/LEAP program can help to pinpoint the additional problems.

Tex

[framedame]

Hi Tex,
Thanks for that information -- very interesting and something I've been trying to wrap my head around. Does the allergen test by Enterolab require ingesting the foods being tested? I am on such a limited diet - not much to rotate. I do know from the IgG test the High - egg whites,
Moderate - Brewers yeast, osters, swiss cheese
Low Bakers yeast, goatmilk, whey, bean (kidney), Mace, Yogurt, Casein, Mussels, Cheese American, Pollack, Ginger, Tomatoe.

The interesting thing is that the Cyrex Lab http://www.cyrexlabs.co
Array #4 IgG + IgA test for Gluten associated Cross -Reactive Foods and Sensitivity. I came up equivacol for Milk Butyrophilin. Have your heard of this test? Dr Tom Obrien is on the board of Cyrex labs. I've read some of his articles on gluten intolerance and they are very good. This is what is tested for. Can you explain why I tested reactive on IgG test and not on this test too?
I'm assuming that rice and potatoe are save for me to eat right now.

Gluten-Associated Cross-Reactive Foods and Foods Sensitivity
Cow’s Milk IgG + IgA Combined ( CPT CODE : 86256 )
Alpha-Casein & Beta-Casein IgG + IgA Combined ( CPT CODE : 86256-59 )
Casomorphin IgG + IgA Combined ( CPT CODE : 86256-59 )
Milk Butyrophilin IgG + IgA Combined ( CPT CODE : 86256-59 )
American Cheese IgG + IgA Combined ( CPT CODE : 86256-59 )
Chocolate (Milk) IgG + IgA Combined ( CPT CODE : 86256-59 )
Sorghum IgG + IgA Combined ( CPT CODE : 86256-59 )
Millet IgG + IgA Combined ( CPT CODE : 86256-59 )
Spelt IgG + IgA Combined ( CPT CODE : 86256-59 )
Amaranth IgG + IgA Combined ( CPT CODE : 86256-59 )
Quinoa IgG + IgA Combined ( CPT CODE : 86256-59 )
Yeast IgG + IgA Combined ( CPT CODE : 86256-59 )

Sesame IgG + IgA Combined ( CPT CODE : 86256-59 )
Hemp IgG + IgA Combined ( CPT CODE : 86256-59 )
Rye IgG + IgA Combined ( CPT CODE : 86256-59 )
Barley IgG + IgA Combined ( CPT CODE : 86256-59 )
Polish Wheat IgG + IgA Combined ( CPT CODE : 86256-59 )
Buckwheat IgG + IgA Combined ( CPT CODE : 86256-59 )
Tapioca IgG + IgA Combined ( CPT CODE : 86256-59 )
Oats IgG + IgA Combined ( CPT CODE : 86256-59 )
Coffee IgG + IgA Combined ( CPT CODE : 86256-59 )
Corn IgG + IgA Combined ( CPT CODE : 86256-59 )
Rice IgG + IgA Combined ( CPT CODE : 86256-59 )
Potato IgG + IgA Combined ( CPT CODE : 86256-59 )

[tex]

Does the allergen test by Enterolab require ingesting the foods being tested?

Yes, unless the foods were eliminated from the diet only a month or so ago, because the antibodies slowly fade away, when we stop eating those foods, (that's why the reactions come to an end). Gluten is different - the Enterolab test for anti-gliadin antibodies will reliably detect gluten-sensitivity for at least a year after gluten has been removed from the diet, because the antibodies to gluten have a relative long half-life, (that's why it takes so long for the GF diet to bring remission).

I'm sorry, but I'm totally unfamiliar with those tests, so I can't offer any insight on them.

Tex

[sarkin]

Lassie,

As far as planning your future testing, IMO you could skip the Enterolab test for gluten sensitivity, as you have such a proven history/diagnosis and no reason to doubt that gluten is a problem for you. When I did those tests, I had been GF and dairy-free for 3 months, and soy-free for two, and my results were still elevated for gluten and dairy. I chose to suspect the negative soy results, because I thought it was possible that my levels would have been positive had I continued eating legumes. So I'm avoiding legumes now, and will probably test them with the additional information from MRT.

I also had elevated antibodies to eggs. I don't know for certain that I will be able to add them in the future, but I believe it is possible. I am certain that gluten and dairy are forever - or as certain as I need to be. It wouldn't be worth it to me to attempt to re-add dairy, which I think isn't such a great food group anyway (I am finding it strangely easy to have written off entire food groups - for me, easier than navigating within them.) I will wait to try eggs again until I've been healing for some time longer, hoping to maximize the chance of including them in my diet some day.

I wish I could explain the differences in the various tests. I know that testing for food allergies and sensitivities has been problematic for decades, and there are probably passionate supporters and detractors for all the currently available methods, but I don't know enough about this to add any insight. My late mother had been tested as allergic to certain foods, and then had that result pooh-poohed by another doctor - probably back in the '60s. I had a panel of some sort run, probably in the '80s, that another doctor also rolled his eyes at.

My Enterolab results showed that I had the most reactivity to oats, and the least to rice and corn. But I'm not sure that tells me how strictly I must avoid oats, nor how much rice and corn are really a good idea for me. Those particular tests are relatively new in their offerings, and the language they use to explain how to use them is quite different from those for the Big Offender foods. I would take their gluten/dairy/soy/egg/yeast tests to the bank, on the other hand.

I know this doesn't really help you to parse what you can/should eat. I hope you're able to get some insight about that, maybe from your ND?

[framedame]

Hi Tex,
I was afraid that was the case. I guess I'm really not feeling like taking a stool test right now or experimenting with adding foods for the test. I am still at one BM but WD - no change and it's orange - most likely sweet potato. I don't want to increase the numbers. If been toying with the idea of taking Immodium but scared it my plug me up. I never tried the pill form of Pepto - just liquid, and it made me feel nauseas.

Hi Sara,
I did look back on my DX - collagenous and lymphocytic colitis. The biopsies of the duodenum showed in "increased intraepithelial lymphocytes as sometimes seen in celiac disease. I did not have villa damage. When I met with my GI he said in his mind I had celiac, although the gold standard is villa damage. As I mentioned before, I was eating GF but was getting enough gluten from cross contamination to test positive on several blood test. That said, I think bc I didn't have villa damage I'm in better shape. Maybe that has helped in the BM numbers a day??? I sure would like to get it to firm up.
Is store bought broth a bad idea - Kitchen Basic or Imagine - could that be a problem with spices? Did you post on how to make a broth?
Thanks so much for all you help.
Lassie

[tex]

Lassie,

If you decide to try Imodium, try half a pill at a time, just once a day, and if that seems to help, but isn't enough, try a half a pill in both the AM and PM. As long as we don't take more than we need, it can often be helpful.

Tex

[framedame]

Tex,
I'll give 1/2 a pill a try and keep my fingers crossed.

Thanks,
Lassie

[sarkin]

Lassie, I hate the liquid Pepto, too - always have. I knew I was in bad shape with my MC when I tried the chewables and thought they were tolerable. I keep the capsules in my purse, and hope I won't need them often. Maybe that will be the "relationship" you form with Imodium - sometimes necessary, never a favorite, but does the job. I hope the 1/2 dose is perfect.

I think your doctor was right - and you're right, too. Since you tested positive on the blood tests, then you are lucky that you didn't have damage to the villi... so I'm sure it doesn't feel like it at the moment, but you have probably nipped a potentially more serious problem in the bud. It is interesting that he was so confident in considering you celiac, without one of the 'gold standard' markers - that might mean he understands that it's more important to get you well than to get you sick enough to see yet another little bit of bad news on endoscopy. Cross-contamination is always a risk (which is one reason why I eat the way I do) - and some of us are far more sensitive than others, so you may have been getting 'glutened' by something that would be safe for some.

I think some of those store-bought brands of stock are very good - I have heard good things about Kitchen Basic. Our basic method for making stock is just gently simmering the main ingredient. We do add salt. A little skimming is a good idea - when you're feeling better, you can add carrots or celery or potatoes or garlic (or parsley - or even fine-chopped greens like chard - but don't rush that). The blandest broth in the world was ambrosia to me when I was first sick, and so soothing. Turkey and chicken wings, both, make a nice broth. My theory is when the chips are down, the simpler the better, and you can get more flavorful later.

If you're not inclined, IMO you do not need to do further testing, unless and until you want to. Many PP members have worked out their food intolerances by quiet effort, keeping a food/symptoms journal, and the magic ingredient of patience. (Tex is a wonderful example of this.) Since you already know to avoid gluten and dairy, you have almost certainly greatly increased your odds of success - and hopefully you'll be reaping the rewards of greater symptom relief, very soon.

Be well,

Sara
Sara

[karenswans]

Lassie, your test results sound very similar to mine. I had elevated lymphocytes in the duodenum, that led my GI at the time to think I had celiac. A blood test showed that wasn't the case, of course. Then I had a colonoscopy that diagnosed my MC. My doctor told me the lymphocytes in the duodenum are not related to the ones they found during my colonoscopy, but I don't believe him.

By the time I found this place I was down to one BM a day, but it was watery and usually made me jump out of bed and run for the bathroom before 5am. I did the Enterolab tests that showed a gluten, soy, casein, and egg intolerance. I stopped all 4 and immediately improved. The very next day I wasn't running for the bathroom. I still had some watery D, but over the last 4 weeks that has firmed up. I've had 3 instances of "flarettes" where I had watery D once or twice on those days. I'm working out what caused them. At least one of them was emotionally based. Another may have been because I stupidely ate cheese less than a week after starting the diet.

Anyway, I hope that you, like me, start to improve very quickly. Because our symptoms and test results are similar, it seems like our healing could be similar too!

[framedame]

Hi Karen,
Very interesting. Did you do the gene test from Enterolab? My GI did the Gene test when I told him I wasn't keen on doing a gluten challenge. I had the DQ2 gene. Just curious if you had that. Not unusual for a neg blood test though.
I woke up this morning to explosive WD as usual and have taken 1/2 imodium with hopes that something might be formed. I've been off all egg, and yeast for at lest 3 months and dairy and gluten - super strict for 10 months, so I think my gut is still healing??
Thanks for the encouragement! Cute dachshund, I had a wired haired dachshund- the most loveable dog!
ciao,
Lassie