Watery D This Morning

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DJ
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Watery D This Morning

Post by DJ »

I've been quite stable as I reduce Entocort and maintain a restricted diet but this morning I had watery D :roll: On January 15th, I went from 1.5 mg of Entocort to 1 mg with some moodiness but other than that, reducing went unusually smoothly. I did so well that I stepped up my schedule and reduced to .75 mg on the morning of 1/24. The next day (yesterday) I had a severe headache and stayed in my pajamas. The headache made me queazy so I ate 2 millet toast (common food for me), home-made banana bread (banana is daily food for me, the 1/4 cup of tapioca flour in the recipe may be new to me and the recipe contained eggs, which I now eat as part of baked goods only. When I ate eggs in the past, I had GERD, not D.), and I ate a small piece of pork. Except for my usual coffee with Silk coconut milk, that was it.

In the past, since eliminating my sensitive foods, loose BMs or D were triggered by eating too much fruit and veggies or eating fruit and veggies that were not well cooked.

Hmmmm :shock:
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Post by tex »

Tapioca is notorious for causing some of us to react. If that was a new ingredient, you might want to cast a suspicious eye on it. And of course, the problem could be the eggs. :shrug:

If I remember right, millet flour is one of the flours that sometimes fails spot checks for gluten on products found on grocery store shelves.

. . . a slight pause while I look it up . . . Yep, I was right. Please check the article at the following link:

Contamination of naturally gluten-free grains

Looking at a list from that site:
The following products contained above the limit of quantification for gluten:

Product/Mean ppm
Millet flour/305
Millet flour/327
Millet grain/14
Millet grain/25
White rice flour/8.5
Buckwheat flour/65
Sorghum flour/234
Soy flour/2,925
Soy flour/92
Note that half the millet samples contained hazardous amounts of gluten. Interestingly, only the flour showed the problem, suggesting to me that the problem is due to cross-contamination during milling, rather than a problem that is associated with growing, harvesting, transporting, storage, or other handling of the grain. Stone mills are notoriously difficult to clean thoroughly. It's virtually impossible to clean out all the nooks and crannies without totally disassembling the mill. And disassembling a stone mill is typically a major project, and not one that would be attempted simply because of a product change. For one thing, in addition to all the work (and introducing a risk of improper disassembly/assembly that could cause damage to an expensive machine), few business could justify the additional downtime. IOW, I would assume that most operators simply flush the mill with the "new" grain, when switching from one grain to another. But I'm just speaking from experience here, and I can't speak for everyone, of course.

The bottom line is, your lower budesonide dosage may have "revealed" either a source of cross-contamination, or possibly an additional food sensitivity in your diet that was previously masked by the drug. Or maybe you're coming down with a virus.

Good luck tracking down the actual problem.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by DJ »

Hi Tex,
I've been doing well with my millet bread from Sami's Bakery in Florida for quite a while even though it says it contains traces of gluten, wheat, or yeast.
I don't recall trying tapioca before and my hubby made banana bread containing 1/4 cup of tapioca flour.

With yesterday being a bit of a headache blur, I forgot something else I ate - I had a new kind of tortilla chips containing high oleic sunflower or safflower oil and sprouted chia seed. I don't think I've ever had chia seed, plus I'm becoming suspicious of sunflower oil. Is sunflower oil a common concern? I pulled away from eating eggs because they sometimes give me GERD. I've known that for along time. I was trying to keep eggs as a limited ingredient.

I'll try these items one at a time at some point in the future;
  • Sunflower oil
    Tapioca flour
    Chia seeds
    Eggs in small amounts
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Post by dfpowell »

DJ,

Perhaps you are more sensitive to the traces of gluten in the bread and possibly other foods, now that you are at such a low level of Entocort. When I was on Entocort my Enterolab tests indicated only a sensitivity to gluten. I decided to redo the Enterolab tests 6 months after stopping Entocort and I showed sentivites to all but 3 foods. So for me, the Entocort masked my sensitivities. Just a thought.
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Post by Leah »

Time to put your detective hat back on. First, try to get back to where you were before this reaction and try each thing for three days straight. That should give you an answer. When I got off of Entocort, that's when I realized peanut butter was bad for me ( seemed fine up until that point.

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Post by DJ »

I agree, Donna and Leah. I'm probably becoming more sensitive. I'm going to back off of any new possible sensitivities for now and deal with staying in balance while I finish weaning. I can't afford D right now. I begin traveling again soon and my schedule is a killer. I can better assess my gluten issues if I maintain my current eating habits. I think my gluten intake is super low. I stay away from restaurants and we cook all of our food. The baked good my hubby made is an ultra rare event and I use the one type of bread I mentioned earlier that discloses "traces of gluten". I may call them for more information.
My GERD cough has increased with my very low Entocort dose. Without Claritin, it would be worse. I'm going to maintain my little dose of Entocort for a while. My doctor wants me off soon but my instinct tells me to take it slowly.

Thanks all!!
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Post by tex »

DJ wrote:I've been doing well with my millet bread from Sami's Bakery in Florida for quite a while even though it says it contains traces of gluten, wheat, or yeast.
Ditto to what Donna and Leah said — you've been doing well because you've been taking Entocort. Virtually everyone who weans off Entocort finds that they have to clean up their act, because they no longer have a shield against minor transgressions.

If you can't live without bread, switch to a brand that does not contain tapioca or millet (in addition to your other known food sensitivities).

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by DJ »

Hi Tex, I told my husband I could hear you yelling at me all the way from Texas. He laughed a lot :rofl: I called Sami's Bakery in Florida. Their millet bread tests at 60-90 ppm.
Most other bread recipes have chickpea flour or tapioca. I know that chickpea is out for me and tapioca might be too. I'm not ready to retest that yet.

Eggs sometimes upset my GERD issue before The Great Flood of MC so I've decided not to even use them as a minor ingredient.

Chia is a non-issue. I don't think I've ever eaten them before in my life so I'll just pass.

I like the idea of Enterolab testing six months post-Entocort.

It turns out that I had just one episode of WD yesterday and none today. Woohoo! Now I must consider that this all starting with a debilitating cough and it's returning as I go off Entocort. :shock: I'm hearing all of you. Thanks. :bigbighug:
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Post by tex »

DJ wrote:Hi Tex, I told my husband I could hear you yelling at me all the way from Texas. He laughed a lot :rofl:
:lol: Naw, I wouldn't do that. :grin:

Actually, even though it's well above the 20 ppm mark, 60–90 isn't too bad, but it's kinda knockin' on the door of riskiness. Whether or not it's a problem for you depends on your degree of sensitivity, and how much other cross-contamination you accumulate on a daily basis. A lot of products contain undeclared overages, IMO. And a very few of us probably react to as little as 10 ppm.

As long as you're aware of the risk, and manage it, that's the main thing.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by DJ »

Hi Tex, In reality, as mentioned in the past, I consider you warm and kind and a tremendous help to all of us. The "yelling from Texas" comment appeals to my bizarre since of humor and I DO need to take another look at things. This group helps me with my blind spots in a huge way.

As mentioned the gut cough never fully went away but improved greatly with Entocort, eliminating foods I'm sensitive to, and eventually Claritin. Now that I am nearly off Entocort, my cough has increased some but not like before. I don't mind a little nudge to 'wake up and smell the coffee'. We folks with MC have so many things to think about that they can get muddled.

I don't think the bread alone caused the D, but as we know too well, it could be a combination of things and I had more than one new food in one day.

I need to address my upper GI symptoms in relation to what I eat. After all, it's where this whole story started for me.
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Post by tex »

DJ wrote:I need to address my upper GI symptoms in relation to what I eat. After all, it's where this whole story started for me.
I think you may be on the right track with that thought. Your cough may be due to some sort of mast cell activity that results in congestion, or tingling, or whatever is initiating/driving your cough. And of course, the mast cell activity may well be due to something in your diet.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Leah »

DJ, if histamines/mast cells is an issue with you, then you should also consider eating left overs. There are high histamine foods, but as soon as something is cooked and then stored, it starts to build histamines ( especially meats). I have discovered through experimenting, that I can eat something left over one night ( dinner to next day's lunch), but that's about it. After that, I noticed increased symptoms. To help me with this, I freeze more then I use to. It's a pain, but it works.

Leah
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Post by DJ »

Hi Tex and Leah, I will be very happy if I can figure out this cough! I'll do some reading about histamines and leftovers. It looks like I'll be doing more freezing too.

Thank you.
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Post by carolm »

Hi DJ, just my 2 cents on the possible gluten cross contamination- I accidentally glutened myself last summer and the headache was a killer. I rarely get headaches but the first day it was brutal and although it lessened slightly, it went on for another 3 days. As soon as you said you had a headache my first thought was 'gluten'. I've heard others here talk about the gluten headache. I learned in July exactly what that was.

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Post by DJ »

The company said my millet bread tests at 60-90 ppm but I don't know what that means to me. I eat quinoa on rare occasion but I mostly eat rice and GF Chex as grain. My millet bread would be my source of contamination.

I am interested in MRT testing but I need to learn how long I need to be off Entocort before the testing.
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