New to the forum and so relieved to have found you all

[vespa317]

Hello everyone, I'm Michelle. I recently found the forum and have been searching and reading a lot of the posts. May of 2020 is when the D started for me. Luckily we already had bidets installed in our house Due to my PCP leaving the practice and taking forever to find a new PCP that was taking new patients, I didn't even get to see a Dr. to talk about it until Jan 2021. I was told to try Imodium to help control the D and then scheduled blood tests, did stool samples and all my numbers looked "normal." So we scheduled a Colonoscopy/biopsy in June 2021. When the results came back and I met with the GI about it he didn't even tell me it was MC. He said there wasn't anything definitive, and that whatever it was would either go away or it wouldn't and I would basically have to just live with it. I was confused of course and after trying to figure out the results paperwork and doing a lot of internet searching, and talking with some of my friends that also have GI tract issues, I realized that MC was actually on the results paperwork but for whatever reason the GI didn't think it was a big enough deal to tell me about it. So, I went back to my PCP and have discussed with him the Colonoscopy results, the MC, which of course he isn't familiar with. But he has been very willing to listed, and take some time to talk with me and seem genuinely concerned about my health, which is refreshing. So he suggested fiber supplements, and if that didn't produce any changes he also prescribed cholestyramine, and talked about Pepto as needed and to continue the Imodium. So this is where I am currently.

In 2020 I tried a few elimination diets, and didn't notice any changes. Apparently I just didn't do them long enough to see any changes. So now after reading more about MC and finding this message board and another, a lot of the things I've been experiencing are what so many others are experiencing. The only thing that I have experienced that I haven't see anywhere is weight gain. I've gained 20lbs since this whole thing started. I've been working out when I can safely get through a workout.

Its such a relief to know that I haven't lost my mind, and there is an actual reason for what's been happening. I ordered Tex's book and am looking forward to reading it.

The more I read about diet trigger foods to avoid the more panicky I get. So, the plan is to start removing one thing at a time. The first item I'm removing is Gluten. I'm not emotionally ready to remove everything at once. I'm still coming to terms with this being something that I will have for life. I already take D3 and Magnesium every day, and they happen to be at the levels I've seen suggested on a couple of threads, so that's good at least. I had already noticed that raw veg wasn't working for me, tomato sauce and spicy stuff gave me wicked heartburn and acid stomach, so I've been avoiding those things. I am very interested in seeing if my PCP can/will order EnteroLab testing to help me narrow down foods to avoid so I don't have to play the "Will this destroy me?" Game.

My questions for the group:

Has anyone else experienced weight gain?
Which EnteroLab test(s) should I ask for?
Are there any doctors in California? I saw Tex's list but I am wondering if there are any doctors that have been found in CA since the list was last updated.

[tex]

Hello Michelle,

Welcome to the board. Over the years, I don't recall seeing anyone posting here that they gained weight while initially reacting, except for about half of those who were taking budesonide. One of the side effects of budesonide is weight gain. Other than that, most of us probably have only a minor weight loss problem, but for a few of us, weight loss can be a major problem. But maybe someone had the problem and just didn't post about it. If I had to make a guess, I'd guess that the weight increase may have been caused by the restrictions imposed because of the pandemic.

Most members here order the A1 + C1 test panels from EnteroLab, because they cover the foods most likely to cause us to react. If your doctor balks at ordering the tests, as most of them seem to do, you can easily order them yourself, either online or by phone. If you're wondering whether your insurance will cover all or part of the cost of the tests, you can call or email the lab, and they can give you the insurance codes for the tests. Then you can call your insurance company to see whether those tests are covered.

Your recovery plan sounds good, because we have to get all the gluten out of our system before our immune systems will even recognize other food sensitivities. It usually takes a month to six weeks, approximately, to get enough gluten out of our systems so that the other food sensitivities can even begin to cause symptoms. This is because gluten dominates the immune system, and the antigliadin antibodies that gluten causes our immune system to produce, have a 120 day half-life, whereas the antibodies caused by most food sensitivities have only a five or six day half-life.

Again, welcome aboard, and please feel free to ask anything.

Tex

[vespa317]

Thanks for the timely response Tex. I agree it was probably the Pandemic and being shuttered indoors for so many months that actually put the weight on, plus my subconscious fear of losing weight, and getting dehydrated that probably made me overindulge and turn to food for comfort. Fun times.

I'm pretty sure the amount of stress I was under in May 2020 was probably the trigger for my MC. My husband had lost his job and decided to to a home remodel so all of my safe spaces for hobbies and exercise and relaxation were unavailable, in the middle of the remodel he got a new job, I was working a hybrid schedule and expected to keep the same perfection at work, and then my mother broke her leg and expected me to drop everything to take care of her. Plus the Pandemic. All of these things just came together in the perfect storm and it was just too much, far too much for my mind and my body. Slowly things have been getting back to normal in all facets of my life, now I have to heal my GI tract.

I do plan on requesting the test outside of my PCP if he won't order it. And I'm going to try to figure this thing out with diet before asking about the Budesonide.

I had no idea about the half-lives of the anti-bodies. Very interesting and useful information.

[vespa317]

Update so far:

I ordered a test kit and am sending it back this week, can't wait for results.

Have removed Gluten from my diet and am seeing great results. Only take one Imodium a day, my urgency is way down, frequency is down, and BMs are far more solid than they have been for a year and a half. Making sure to thoroughly cook all the veg that I'm eating and focusing on protein too.

Swapped the Magnesium I was taking for something more effective. Continuing the VitD that I was taking before. I tried taking Zinc, but whenever I take it I get nauseous, morning, night, with food, doesn't matter, so I stopped it.

I've been reading a lot of the older posts, and am almost done with Wayne's first book. Lots of good information, and I give more credence to the empirical evidence on this forum than I do the advice of my doctors that think its just a phase my body is going through. There is a reason for the WD, and I'm figuring it out.

Next up: test results.

[tex]

Thanks for the update. Sounds like you're on track, and doing well.

Tex