Brand new, SO many questions! (diet, budesodine wean, labs)

[MaryClaire]

First, THANK YOU. I only wish I'd found this site a year ago when I was diagnosed with MC - I went through a hellish 4 months of WD that came out of nowhere, sometimes explosive, up to 10x a day until I demanded a 2nd colonoscopy with biopsy (I'd just had one 6 months prior with all looking good). I also had them do an endoscopy to try and figure out my never ending chronic cough, and they diagnosed GERD. In the time I spent trying to figure out what was wrong, I ended up with malnutrition and lost 15 lbs (I now weigh 124 lbs, which isn't a bad weight for my frame, IMO). Moral of the story, I've learned I cant rely on my non-responsive GI and need to take matters into my own hands which led me to YOU! I've spent DAYS reading the posts on this site, wow what an incredible group of smart and caring people! I also bought the MC book, and feel like I am starting to have a much better handle on things, but still have a few questions that I'd be grateful for your thoughts on!

A little background: I'm 57 and n menopause, went on BHRT 2 years ago which helped with hot flashes, etc. Did that help lead to MC? I guess I'll never know. I've have had regular lab work as part of the BHRT, which has showed increasing sluggishness of the thyroid, and increasing deficiency in B vitamins (esp. B12), D, and Magnesium. I've been on 9mg of Budesodine for 1 year, which took care of all bowl-related symptoms, like I was never sick. I supplement Mag magnesium glycinate, D+K and sublingual B vitamins every day, but am still very vitamin deficient, so am wondering why??? Thinking if its as a result of MC going on in the background that I'm not absorbing nutrients from my food/supplements, but I didnt know because the BUD was masking the symptoms as I was merrily going on my way thinking all was well.

Budesodine Wean: I've been on Budesodine for a year now because I didnt know better - while my MC symptoms are gone, my health has deteriorated (adrenal fatigue according to labs, my hair is falling out in large quantities, and I have no energy, so I want to get off meds and address the underlying issues.) I started weaning off BUD on Jan. 8th, and am planning to stay at 6mg for 1 month, then go to 3mg for 1 month, and then either stop or go to every other, or every 2nd day? I'd welcome feedback if that seems a decent schedule given how long I've been on it.

Diet: Did not know that I should have been using this year on BUD to fix my diet. UGGGG. So am starting there - but because the BUD is likely still masking symptoms, I can still eat whatever I want, no issues, so how do I know what may be causing a problem if there are no symptoms? I started with GF, DF, and no eggs on Jan. 1st. Sound reasonable? Or should I eliminate other things as well? I'm still eating MC no-no's, like raw cucumbers, higher fiber vegetables and nuts/seeds, is that ok as long as no symptoms? Or better to cut that out now in anticipation of the wean?

I'd also value your opinion on just seeing how I feel on GF, DF, EF or if it's worth getting the Enterolab tests so I know for sure? (I had IgG and IgE+ and IgE blood testing done as part of the BHRT treatment, the only things that were high were bananas and eggs, the things that were moderate were cottage cheese, tomato, garlic, cane sugar and wheat. All else was low or very low, including all the other grains, oats, nuts, etc. On the IgE all foods were absent except apple, which was very low. Not sure what the difference between IgG, IgE and Enterolab is?

I also have GERD, for which the GI prescribed famotidine, but I stopped taking it and am also working on food/lifestyle changes to help with that (I've almost completely cut coffee/caffeine and alcohol, and realize that eliminating dairy will help also with GERD, and I dont really eat high-fat (except "healthy" fat like avocado, coconut milk, salmon) fried, or fast food. Finally in the food category, I am wondering about histamine/mast cells ??? I often have periods of post nasal drip, constant clearing of my throat, runny nose and dry cough (likely GERD?) that somehow feels like it's from food. Would the Enterolab testing help identify that, or do I just keep the food journal and maybe I can identify what's causing these symptoms?

Sorry this is so long, as I'm sure you all know, health issues seem to compound on themselves! Mainly I want to do whatever I can in this next month or two before fully weaning off of BUD to give myself half a chance of not going back to a full-on flare. (and not going bald and having some energy would be nice :) Thanks in advance, I am so afraid of getting off the meds, but I cant keep living like I am, so if it means back to the bathroom, then so be it, I'll deal with that if it happens.

THANK YOU.

[tex]

Hi,

Welcome to the group. Here's my opinion: Since you've been on budesonide for a year, the EnteroLab test results would almost surely be affected, and they might give some false negative results. You need to be completely off budesonide for at least several months, before the EnteroLab test results would be accurate.

The diet that you described should bring remission, unless you're sensitive to soy. It will take roughly 4 to 6 weeks for your anti-gliadin (gluten) antibodies to diminish enough so that your immune system will be able to begin detecting the other food sensitivities, so make sure that you are totally avoiding gluten at first. After about 4 weeks, many of us are able to see big improvements, but then we relapse, as our immune system begins to detect other food sensitivities, If you notice this happening, soy is the likely culprit, so begin avoiding all traces of soy, also, to see if that resolves your symptoms. The low dose of budesonide will probably continue to mask your symptoms until at least then. Gluten, dairy, soy, and chicken eggs are the big four food sensitivities for MC patients.

MC causes nutrient malabsorption, so your vitamins are probably going into the toilet. I wouldn't worry histamines at first, unless your symptoms are bad. If you have a histamine problem, you may have to follow a low histamine diet, but that can be considered if your chosen recovery diet doesn't bring remission.

I hope this helps. Again, welcome abopard, and please feel free to ask anything.

Tex

[MaryClaire]

thank you Tex! I will keep at the diet (realized I had gluten AND dairy the other night - clearly I cant eat out anymore - it was chicken piccata and GF noodles - realized when I used to make that dish, you dredge the chicken in flour and add butter to thicken. :(

steep learning curve but hopefully the wean is successful - this week I step down to 3 mg per day.

I think I read that you said the IgG is not that accurate? So sounds like I wait for a few months off BUD and then do the stool testing?

with appreciation!

[tex]

If you're having trouble identifying problem foods, the EnterroLab test results will eliminate any questions about which foods should be totally and carefully avoided.

Tex