Having a Flare....Would love your input

Shar76 · Post by **Shar76** » Mon May 18, 2015 9:22 pm

Hi everyone,

By following dietary restrictions/changes I learned from you wonderful people, I've had "normans" for at least a year now, maybe a bit longer. So, very much to my surprise, about 10 days ago I began having liquid stools again. I can have several or few/day, but the point is, every one is liquid, light in color, and quite foul smelling. I also have a tremendous amount of foul-smelling gas.

First off, I'm 99.9% sure I haven't glutened myself. I have progressed well on the diet and have been able to gradually add back in the major "baddies". i.e Soy, Dairy & Eggs w/o difficulty.

So what DID I change? At the advice of my GP, because my HgbA1C was 6.6, I added more vegetables to my diet and reduced Carbohydrates. They were veggies I've eaten b4 with no problem. They include greens, zucchini, summer squash, spaghetti squash, carrots and turnips.....not all at the same time. lol They were all peeled and overcooked as I always do (nothing raw)

After about 3 weeks of the new diet of increased vegs,& decreased carbs, and of feeling good about myself for "tackling" my diabetes w/o medication (she wanted me to take Metformin which I call "The Devil Drug" & I refused), the diarrhea started and it hasn't stopped.

What HAVE I done since to try to restore Norman? I went back to basics, food-wise, i.e no gluten, soy, dairy or eggs as soon as the diarrhea started. I also took Imodium for about the first 7 days with no improvement. (I've now stopped the Imodium) But, as someone on the board once said, I'm still pooping things I haven't even eaten yet.

I'm quite uncomfortable with gas pains, and have once again have become house-bound for fear of an accident in public. I did have an accident in bed with a Fart I shouldn't have trusted....what a mess. And quite frankly, although hungry, I don't want to eat because I know where I'll end up.......the potty.

My questions....1) Is there anything else I should be/can be doing? 2) Is it just a waiting game again as it was when I began, or do you think I've developed something new to add to my CC? 3) Is another colonoscopy warranted? It's been 2 years, and they found only 1 polyp, so said to return in 5 years 4) Help!!!

Sorry, just had to go again, my 5th trip to potty-land today.

Anyway, I appreciate any input you may have. After all, my GI Doc is the one who told me I needed to make NO dietary changes. Finding this group has been a God-Send for me.

Thanks so much for listening,

Shar in MS

JFR · Post by **JFR** » Tue May 19, 2015 4:58 am

Here's my theory on what might have happened. By adding things back like soy, dairy and eggs, you may have slowly been accumulating damage without yet having symptoms. On top of that you added lots of vegetables, while although overcooked and peeled, may have been just enough to tip the balance and lead to this flare.. To learn about controlling diabetes with diet the best book is by Dr Richard Bernstein called the "Diabetes Solution" or you can watch this video https://www.youtube.com/watch?v=dSLf4bzAyOM by Dr Eric Westman. I have integrated the dietary restrictions necessitated by MC with a very low carb diet and it works to keep my blood sugar normal while maintaining remission from MC. I eat between 20-30 gms of carbs a day plus I avoid gluten, dairy, soy and eggs and all other foods that I tested positive for on Enterolab. After 3 years I just added back beef and it is the only thing I have added back. I'm a better safe than sorry sort of person. When things were at their worst for me I needed 6 Immodiums at once to control things and lived on ground lamb and kale chips to get things to settle down. Hope things improve soon for you.

Jean

Lilja · Post by **Lilja** » Tue May 19, 2015 5:26 am

Hi,

I'm not a veteran in the field of MC, but I agree with Jean.
Lilia

Post by **tex** » Tue May 19, 2015 8:15 am

Hi Shar,

I'm sorry to hear that you're having such a persistent flare. You seem to be taking the right steps to control it. I agree with Jean's scenario of what may have happened.

Here's the problem with adding certain foods back into our diet:

The human body is very adaptive, and for some of us, our body is capable of learning to tolerate certain foods that previously caused us to react, without any obvious gastrointestinal effects. The problem is that if we eat those foods, we produce antibodies (thus verifying that we are still sensitive to those foods). That capability is not particularly rare, as there are even many asymptomatic celiacs (who show no clinical symptoms of the disease despite the fact that the lining of their small intestine might look like a battleground). I can eat all the dairy products I want, without any adverse GI effects, but I produce antibodies to casein, and in the long run, casein activates osteoarthritis for me. By totally avoiding all dairy products, I have no osteoarthritis symptoms.

So hopefully time (together with a safe diet) will allow your intestines to heal, and you will soon be back in remission.

When you mentioned greens, my first thought was that you might have picked up E. coli, or some other pathogen. But overcooking the greens should eliminate that risk. If you had picked up a C. diff infection, you should also be having severe cramps.

I gather that you haven't recently (prior to the reaction) started taking any medications that might trigger a flare. Please be aware that sometimes other issues can trigger a flare. An event in our life that causes a significant increase in stress level can trigger a flare for many/most of us. I had about a 3 or 4 day flare last fall that was triggered by the passage of a second kidney stone. The first one apparently didn't cause enough stress or inflammation to trigger an MC reaction, but it may have "primed" my system so that the additional inflammation and/or physical stress from the second was sufficient to trigger a reaction. Exactly 3 weeks passed between the 2 kidney stone events, so that suggests that inflammation is slow to decline.

Good luck, and please keep us posted on your progress.

Tex

dfpowell · Post by **dfpowell** » Tue May 19, 2015 9:49 am

Jean,

I have been intrigued by your posts and diet changes. What foods are you currently eating with your low carb diet?

Thanks,

JFR · Post by **JFR** » Tue May 19, 2015 10:47 am

dfpowell wrote:Jean,

I have been intrigued by your posts and diet changes. What foods are you currently eating with your low carb diet?

Thanks,

This is what's been on my menu lately:

Lamb, pork, venison, salmon, cod (and I just tried beef this week but don't know whether it will stay) I eat organ meat 2-3 times a week, either liver or heart
Bone broth, homemade, mostly turkey lately but sometimes lamb or pork
broccoli, chard, kale, bok choi, collards, homemade sauerkraut, mushrooms
Brazil nuts (a few for the selenium), macadamia nuts, ground sunflower and pumpkin seeds
Coconut oil, olive oil
Dark chocolate
coffee

I practice portion control for both the veggies and protein not because of weight but to keep my blood glucose levels below 100, mostly below 90. My diet is low carb, moderate protein, high fat.

This is what I eat now but for about 2 years I ate almost no vegetables. It is only in the last year that I have been able to increase the number of vegetables I eat and am able to eat them raw or cooked. I am satisfied with this diet and adding things back in is not usually on my radar.

Jean

Gabes-Apg · Post by **Gabes-Apg** » Tue May 19, 2015 3:14 pm

I agree with Jean, you may think that you were doing ok introducing dairy, soy etc but if major flare has happened, you are ingesting ingredients that are not good for you.

Most have instant reaction to gluten.
In the case of other ingredients it is like a slow build up till the body can not handle it no more...
( a bit like most of us are not born with MC, it takes a build up of multiple triggers over period of time for chronic symptoms to appear)

I don't think there is anything new, and do not think a colonscopy is warranted.
Go back to bland, small number of ingredient meals. Give it a few weeks. Ie 6-8weeks
If the D does not ease, then maybe ask for poop test for parasites/bacteria

If D eases, stick with low inflammation, gut healing eating plan as long as you can handle. Take it slow introducing any new veges, low fibre food items.
I would avoid things like dairy and soy etc as much as possible.

Have you had your Vit D3 level checked?

DJ · Post by DJ » Tue May 19, 2015 3:54 pm

Hi Shar, I agree that adding things back is a risk and that a flair may take time. I'd go very basic again with meat, fish, and sweet potato until the MC calms down. Then, I'd stay away from whatever you "added back".
I hope you feel better!
DJ

Shar76 · Post by **Shar76** » Wed May 20, 2015 5:52 pm

Thank you all so much for your thoughtful and thought-provoking replies. It seems we have a consensus of opinion in that having Normans does not mean one is healed and that I started adding things back in way too soon. I've learned MC, CC in my case, is a much more formidable opponent than I anticipated and that time and patience are my friends where this disease is concerned.

Thank you, Jean, for the video link and book title. I will certainly investigate because I find it difficult to keep my Carbs to less than 50 grams/day. I too wanted to ask how you keep yours so low, but I see someone beat me to it.

Question: Do most of your daily Carbs come from the nuts and seeds then? I didn't see much of a source of Carbs anywhere else in your diet. Nuts is something I haven't explored, but for now, I think I'll wait awhile.

Gabes & Tex, thank you so much for the pep-talk and for explaining things in ways I can understand. I especially learned from the explanation of how as the disease itself didn't develop overnight, until the body's had enuf of the "offenders, things will "appear" normal, and that although gluten is now immediate for most of us, the others need to "build up" over time just as the disease did until finally the body says, Oh Hell No, and brings on the Big D.

Gabes, I had a VitD3Assay about a year b4 diagnosis and it was low. I've been taking sublingual D3 three times/week since. GP is balking at retesting, but I will get tough with her. Tex, thanks for pointing out the link between flares and stress. I've had nothing really stressful happen lately, but the cause & effect certainly make sense. And no, I haven't begun any new meds leading up.

My thanks to Lilia, Donna, and DJ for your support too. It means a lot to know I'm not alone.

So, for now and perhaps a long time, it's slow and steady for me. No new additions for sure. I, too, hope the flare passes soon and I'm able to to somewhat go about my life again.

Shar xoxox

Gabes or anyone P.S. When you say "Go back to bland meals" can you please expand on what exactly?? I'm not sure I'm eating Bland enough just yet but know I should be. Thanks!!

Gabes-Apg · Post by **Gabes-Apg** » Wed May 20, 2015 6:16 pm

Shar,
Bland meals are well cooked protein, couple of well cooked veges, no spices, just salt and safe oil. Plain, and not much variety for a couple of days, based on your safest foods.
Low inflammation, low fibre, low histamine to optimise healing.

If doctor will not order test, paying for it yourself $50-$60 might be worthwhile investment.
If you are low or deficient in Vit D3 the ability to heal will be jeopardised no matter what you do diet wise....

Shar76 · Post by **Shar76** » Wed May 20, 2015 6:33 pm

Gotcha, Gabes! Thanks so much for your prompt reply. I've been doing a well cooked ground beef patty, 2 vegs, couple TBSP brown rice.....all w/o seasoning and 1/4 C almond milk. All were safe for me b4 flare.

JFR · Post by **JFR** » Wed May 20, 2015 6:48 pm

Most of my carbs come from leafy green vegetables. I don't eat a lot of nuts, maybe an ounce or 2 a day at most. I eat no grains and no starchy vegetables like carrots or sweet potatoes.

Jean

Shar76 · Post by **Shar76** » Wed May 20, 2015 7:13 pm

Ahaaaa, thanks Jean. I definitely need to review amounts of carbs available in Green Leafys.....*later, after flare*. Never really thought about what was in veggies.

Pre-flare I was eating cooked carrots with my evening meal which wouldn't have have helped with my Carb Count/day. Would love to be down to where you are Carb-wise because I definitely don't want to ever take medication.

BTW, I've ordered the book "Diabetes Solution" at your suggestion. Can't wait till it gets here.

Thanks again, Shar

Sheila · Post by **Sheila** » Mon May 25, 2015 6:11 pm

I really wanted to be able to add back eggs and was curious if my soy numbers had gone down. I retested with Enterolab for those two items and found that the soy reaction was the same and the egg reaction had dropped just one point. Both were well above the 10 limit. It has been 3+ years of GF, SF, DF, and EF diet and apparently those reactions will remain with me forever. I do occasionally have some dairy and always have gas afterward.

Because of the positive Enterolab results, I will not add back eggs or soy. Gluten, of course, is forever forbidden. I don't want to risk a recurrence of WD and find a modified paleo diet works best for me.

Sheila W

dfpowell · Post by **dfpowell** » Wed May 27, 2015 7:59 pm

Jean,

How do you get the fat up in your diet? Over the past several weeks I have transitioned to the low carb, 70-80 gms/day, moderate protein, and high fat 60% of total calories. I am also monitoring everything I eat on Cron-o-meter. I'm looking for ideas on how to get my dietary fat higher so I can keep my calories high enough to prevent weight loss.

Thanks,