How to know when to get tested for intolerances

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mcnomore
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How to know when to get tested for intolerances

Post by mcnomore »

I am gluten free for two month, dairy free for a couple of weeks. How long before I know whether eliminating those two things from diet is working or not? How long before I should consider eliminating or testing other foods? Thanks
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Post by carolm »

Hi Mcnomore,

Your question is a good one but a little hard to answer because its such an individual thing-- so I'll speak from my experience. I eliminated gluten and dairy first and started Entocort a couple of weeks later. I was starting to feel better without the gluten and dairy, yet I still had plenty of times my gut felt gurgly and unsettled in general, and I was still battling nausea every morning. Based on the experience of others on this board, it appeared that soy was my next suspect. Once I dropped soy my improvements were noticeable. Once I stopped taking Entocort I found I reacted to eggs. The Entocort was masking my egg sensitivity.

As soon as I got off the Entocort I had the Enterolab testing. I waited until I was off Entocort because I didn't want the steroids to interfere with my test results. I was better but definitely not where I wanted to be and I felt any information I could get was going to get me to remission faster. It was definitely helpful. I made more adjustments based on those results and eventually reached a point that I am in remission. Healing is a long, slow process. It still took every bit of 18 months for remission, and I still battle some motility issues. Bad days are few and far between now.

I hope this helps.
Carol
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mcnomore
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Post by mcnomore »

Thanks Carol. Can you tell me how long before you decided on testing?
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Post by carolm »

At that point I was probably 6-7 months after my diagnosis when I completed my Enterolab testing. Interestingly, Enterolab staff suggested to me via email that I make sure I'm off of Entocort first, yet not everyone here had that experience. I simply felt for that amount of money and since I was going to be making major decisions about my health based on those results, I wanted to be off of Entocort a couple of weeks before I had the testing done.

After I eliminated the big 4 I did better but still was dealing with nausea and inconsistent BMs. I also have allergies to pollen, dust, trees, etc, plus I had a mast cell type of reaction to bananas- that prompted me to also get MRT testing done. That was probably about 1 year after my diagnosis.

Enterolab and MRT testing do not measure the same thing.

But Enterolab is the priority and those results trump that of any other source.

good luck
Carol
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Post by mcnomore »

How long after you eliminated the major 4 did you get the testing? I am trying to figure out if it takes awhile to know if that is helping. Thanks
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Post by Leah »

It's very hard to tell sometimes if eliminating a food is helping because you could be reacting to something else.. Some people can tell right away though. If you are not on Entocort, you can do the tests now. That would take the guess work out. Gluten's half life antibodies last up to 4 months!
Also, have you also eliminated ( temporarily) "irritants" that could be preventing you from getting better like RAW fruits and veggies ( salad), acid foods ( citrus and tomato products), fiber foods ( like beans and legumes), too much sugar, caffeine...etc. ? All of these foods can be too aggravating on an inflamed gut. these changes can make a huge difference. You can test them back in one at a time when you have gotten the inflammation down.

leah
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Post by carolm »

McN-- It was not long after I eliminated the big 4 that I went for the Enterolab testing-- If I'm remembering correctly is was 8 weeks after I eliminated eggs. I had already eliminated gluten and dairy 8 months before and soy about 5 months earlier. Eggs showed up after I stop the Entocort. I eliminated them and waited 8 weeks then did the testing. I didn't stop at testing for the big 4-- I also had the genetic testing and tests for the 11 antigenic foods. I felt I needed those 11 foods assessed too. I believe it's Panel's A and C. Even though I had already eliminated the big 4, my levels were still elevated so the antibodies do hang around awhile, with gluten staying the longest-- sometimes up to several months.

Not everyone gets the Enterolab tests. I think Gabes in Australia is one that figured out her sensitivities strictly from the elimination diet. You may want to ask her how she did it. As I said earlier I wasn't waiting around. I wanted to move as quickly as I could and gather as much info in the shortest amount of time.

Carol
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Post by Leah »

I also did it the hard way ( because my IgA deficiency makes it impossible to get test results). I took out gluten and dairy PLUS all the irritants and night shades. After i was on a low dose of Entocort, I realized i was also reacting to soy. I have been able to keep eggs.
I have also been able to add ome of the other foods back in. I can now eat raw veggies, salad, beans, potatoes, and small amonts of tomato based sauces. Fruit is still an issue.... fructose malabsorption.

leah
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Post by kayare »

Hi mcnomore - I had the testing done and eliminated all positive foods but still had to eliminate more and add Entocort to get my MC under control. Basically, my gut was so inflamed that it took very little to irritate it. I finally went to just a few safe foods for months to allow healing to occur. It was hard for me to get to that point, but I wouldn't have gotten well unless I had. I also needed to add Benadryl at night to turn the corner. Now, more than a year later, I can eat some raw salads, fruits, and nuts. I can't eat them all, and I can't eat them every day, but I have been able to add foods back. My diet is still pretty limited. If I have an occasional bad day, I just go back to my safe foods for a couple of days to settle things down again. What is right will be different for each of us, and most of us have setbacks, but it is worth it! Good luck! Kathy
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Post by mcnomore »

Thanks everyone. Now that I am gluten and dairy free (have been egg, soy and corn free for years) I will wait to see if I continue to feel better. If I don't get better after a couple of months I will probably get tested.
MC diagnosed 2007
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Post by DebE13 »

Don't give up even if you don't feel better in a few months, it could take longer. I've been GF/DF since November 2011 and SF and no eggs since Feb. 2012. I am finally off entocort (knock on wood) but still have D. I have made huge improvements but it has been slow. The Enterolab tests are a good choice if you are not satisfied in a few months with your progression. I was appalled when I first read it could take years to heal and that there is the possibility that there as been too much damage and may have to rely on meds for life. I secretly though there was no way I would give up my favorite foods for that long. I also convinced myself that I would be able to go back to those foods once I put my time in making the attempt. I've accepted now that those ideas are simply not an option. I hope to add in more variety later but stay focused on what I need to do today to remain off the meds.

Some of us heal fast (lucky dogs!) and some of us heal slow. Patience is definitely a virtue!
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Post by ladyathome »

I went extreme and cut everything they test for in the beginning. I started to get well (with Pepto-Bismol too) really quickly. After I began feeling better, I started getting more tempted to cheat! I really did Enterolab to see what I could put back into my diet so I wouldn't mess up.
There isn't a wrong or right way or time, but for me, they way I did it allowed me to put foods back into my diet, so instead of feeling deprived, I felt like I had sort of won the food lottery!. I was fortunate to be only intolerant to G, S, Oats, and Tuna. I knew gluten was a big problem, and I really thought eggs and dairy would be an issue for me, but never once did I think about soy and tuna!
Hidden gluten was something I was used to looking for, but it's been an adjustment realizing how much hidden soy there is!
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