Paging Pat and Kelly

Polly · Post by **Polly** » Tue Mar 08, 2011 8:48 am

Good morning!

I am wondering if we can hear updates. Nosy, ain't I?

Kelly - did you figure out the culprit? Hope things have settled down.

Pat - how is the quinoa going? I have my fingers crossed. Did you ever try the olives?
Also, re something sweet....... Have you tried honey yet? I didn't see it on your reactive lists, but maybe I missed it.

Hugs,

Polly

Pat · Post by **Pat** » Tue Mar 08, 2011 5:49 pm

Thanks for asking, Polly.

I seem to tolerate Quinoa and potatoes. I am eating most meats: chicken, beef, turkey, cod, and pork, but I seem to have very loose stools the next day after I have eaten lamb so I am not eating it right now. Don't know if it is lamb itself or that it is more greasy than the others. I have cut out oil too for now. I am blenderizing, to use Mary Beth's word, my squash, zuchinni and yellow. It's good, like eating soup! I am doing pretty good with those. Not normans but two normal size mush piles and several small amounts throughout the day and sometimes at night. Afraid to try any others right now. Today I added back my calcium citrate from Freedas. So far so good! I will try my Geri Freeda vitamin/mineral soon. We think my gut is still inflamed and still needs more time to heal.

Pat

PS: Honey is high in fructose so I am hesitant to try it now. Hopefully I will tolerate it later!!!!!!!!!

irisheyes13 · Post by **irisheyes13** » Tue Mar 08, 2011 7:52 pm

I love your nosiness Polly

I'm really beginning to feel so much better with regard to all the back and joint pain I have had for so many months. I'm really beginning to feel human again-truly amazing. I had 3 straight days of no D but wouldn't go so far as to say they qualified as Norman...and then I had a setback which is what had me looking at Tylenol, garlic and an orange. Although I'm feeling better I haven't gotten back to being D free since Saturday because I seem to be my own worst enemy even though I'm being so careful. I thought I was safe eating a Lara bar as a snack yesterday only to find out that it wasn't soy free.

To have already seen an improvement via diet changes alone with no meds is huge to me though after all the damage which has occurred over the last 11 years.

Thanks for asking!

Polly · Post by **Polly** » Wed Mar 09, 2011 7:55 am

Hi Ladies!

Thanks for indulging my nosiness.

Pat,

Good news about the quinoa. You are giving me the courage to test it. Also good news that you can tolerate most meats. I agree the greasiness of lamb might be a problem. We know that too much oil (grease) can cause D. As a pediatrician I can tell you that we often treat longstanding constipation with large doses of mineral oil. (Lamb tested as my most reactive meat, BTW). Your "blenderizing" reminds me of Gabes' recommendation to eat baby food. I wonder if Mary Beth ever recommends eating pure commercial baby food? (I realize it's safer/cheaper to make one's own, but for travelling or in a pinch, maybe Gerber's would work?). It sounds to me like you are starting to see the teeniest bit of improvement, but SHHHH - I'll tiptoe away now so that I don't spook Norman.

Kelly,

What a great update! You must be a quick study to do so well with diet so early on. The detective work required is amazing, isn't it? And the need for vigilance never ends - it just becomes a normal part of our lives. BTW, I am not aware of any Lara bar that has soy - which one was it? Lara bars were one of my favorite snacks until I found out on MRT that I reacted to almonds, and unfortunately, almost every Lar bar contains them. Sigh. How wonderful that you are already seeing improvement in the back and joint pain! I found that the symptom taking the longest to improve was fatigue, although it was much better after a year of diet. Totally gone after 2 years. Have you noticed a lifting of that "brain fog" that goes with gluten sensitivity? Are you concentrating better? Are you keeping a "poo" journal? See, this is what you get for encouraging my nosiness. LOL!

Both of you:

I think it is amazing that you are seeing even the slightest improvement already after so many years of inflammation. It does take so much longer to heal, I believe, when you have been sick for so long. Keep up the good work! It is a tedious process but well worth it, IMHO. Please keep us posted on any success - no matter how small.

Love,

Polly

irisheyes13 · Post by **irisheyes13** » Wed Mar 09, 2011 9:32 am

Polly,
I don't know about a quick study but I'll take it, whatever it is.

The detective work is daunting and right now the only foods I'm eating are ground beef, rice, chicken, almond milk, rice cereal, well cooked asparagus, spinach, broccoli and carrots with occasional onions and bananas. I have had the Lara Bars as a quick desk snack at work. The Lara Bar I ate yesterday was chocolate chip brownie. I had never tried this one before and although I should have been clued in to the chocolate, I wasn't. There is no mention of soy as an ingredient but I'm assuming it might be in there but it does state "may also contain milk in the chocolate chips". Duh. I let my guard down and didn't read a label until it was too late. I felt the effects within 20 minutes of eating it. As frustrating as it must be to find out that you are sensitive to almonds, at least you know but it does stink. I really want to get MRT testing done sooner rather than later since I tested positive for everything Enterolab offers, I would imagine I have other reactive foods as many double DQ1'ers have discovered via this tool.

The pain has improved however the brain fog and exhaustion hasn't really lifted yet. I'm also battling with hyperthyroidism/Grave's disease at the same time however so I'm trying to be patient and focus on the improvements as they come. The ground work and documentation of so many of you with multiple sensitivities/intolerances is helping me keep the faith, not get discouraged and learn from what you all have done. With patience and determination, I can and will wrestle this MC monkey and win.

Yeppers, I am keeping my poo journal too:) Thanks for your concern and encouragement- It helps more than you know!

Kari · Post by **Kari** » Wed Mar 09, 2011 1:11 pm

Polly - you made a good point about MC taking a lot longer to heal when gone untreated by diet for so many years. When I'm disappointed and frustrated, that's what I usually tell myself, as it makes so much sense. Focusing on the positives of what is happening is so important for emotional/mental stability through this process. Your comment about fatigue is also intriguing, as that seems to be a lingering issue for me, along with light headedness.

A couple of questions for you:

After you had your first Norman visit, did he become a regular visitor, or was he still elusive???

How long did you have MC before you started changing your diet???

It seems that Kelly, Pat and I all took over a decade to get to the diet angle.

Kelly - you're still early in the process of attempting to heal by diet, so don't get too disappointed and hard on yourself when you "goof up". The fact that you're seeing some reduction in symptoms already is very encouraging indeed. I found for me that it took a very long time to get used to this difference in lifestyle, and the process is still ongoing. Just the fact that I have to really scrutinize labels is a big change. As far as Norman, I've had to give up the seizeless quest

. If I only go to the loo once or twice a day, I've learned to live with whatever comes out :). I know I'm eating more fiber than I should, but can't think of any other way to get calories, which I'm still not getting enough of. It may take longer for my gut to heal, but this is a compromise I'm willing to make.

Pat - I'm glad you seem to tolerate quinoa. It was low reactive for me on the MRT test, but unfortunately I react to it. As far as fat, I have the same experience that I cannot tolerate to much of it. Lamb is reactive for me, so I can't have it anyway. I suspected for a long time that chicken gave me trouble, but now that I get organic chicken, I seem to be OK with it.

Incidentally, I've just discovered lara bars. I bought one that has only 2 ingredients - cashews and dates. Keeping my fingers crossed that I'll do OK with it, as it has all of 230 calories - yeah!!!.

Love,
Kari

mbeezie · Post by **mbeezie** » Wed Mar 09, 2011 1:42 pm

Kari,

I think you are right that the longer the damage goes on the longer the healing process will take. I had D for 2 weeks and started manipulating my diet then. First I eliminated, gluten, then dairy, then soy and then I did MRT, all within a span of 6 months, so Norman came a little more quickly for me. I did MRT for 6 weeks and then Norman graced me with his presence. It didn't happen overnight but I noticed gradual decrease in frequency and being more formed.

Kelly,

If I can help in any way getting MRT arranged for you, let me know. It may help you identify the remaining problematic foods. Hang in there - it can and will get better in time.

Pat,

Good news on the calcium. It does sound like things are moving in the right direction. Have you stopped the Immodium completely?

Mary Beth

Gloria · Post by **Gloria** » Wed Mar 09, 2011 3:01 pm

I am not so sure that the length of time we've had MC prior to changing our diet has a lot to do with how long it takes to heal. It makes sense, but my experience is contrary to that conclusion.

I got MC in January of 2007. I was Dx'd in June, 2007. I went GF in late June, and EF, CF, YF, and SF about a six weeks later, after receiving my Enterolab test results. I've been eliminating foods all along the way, but I'm still not in remission without Entocort.

I think that the length of time required for healing is more closely related to the number of intolerances we have than the length of time we've had MC. The more intolerances we need to discover, the longer it will take to heal.

Maybe it's a combination of both, but I didn't have MC for very long before I began treating it.

Gloria

mbeezie · Post by **mbeezie** » Wed Mar 09, 2011 4:19 pm

I think you are right Gloria - it takes longer because there is more to figure out when multiple sensitivities are involved. I read recently that it takes 2-5 years to show healing with celiac, so MC must parallel that.

Mary Beth

irisheyes13 · Post by **irisheyes13** » Wed Mar 09, 2011 5:11 pm

Gloria- that makes sense regarding the multiple intolerances. Additionally it would seem if we haven't uncovered all of our intolerances the healing doesn't COMPLETELY begin until all problem foods have been removed.

Mary Beth- thanks for your offer. I will PM you with my location. I'm not sure what else you may need at this time. From reading some of the threads, it sounds like an appointment is made with a local nutritionist who is trained in MRT/LEAP and blood work is completed or vice versa.

Kari- It's not that I'm beating my self up but am a bit frustrated by the fact if I had only read the label it wouldn't have happened. It's hard enough to try and play food detective and scouring the journal to figure out the unknown culprit, I could have easily prevented that one. I'm learning you can never leave your guard down, and yes, it is a big change. I'm okay as long as I'm in my routine between work and home but the stress level rises substantially as soon as there is mention of dining out, going to social events where food is involved and upcoming vacations. I have some of these obstacles to face coming up soon and need to get creative. Good luck with your Lara bar.

I'm sorry Norman is being so elusive. It is hard to keep calories up when the food choices are so limited. Rice has been my friend with that regard and I've been eating overcooked, mushy rice later at night to help with the calories and it does seem to be soothing to my tummy.

I have been hanging out on many of the food blogs and found one that some of you may already have seen before. It is called the Spunky Coconut.com. She(Kelly) has quite a few recipes on her blog and she cooks gluten, casein, sugar free and the majority of her recipes are grain free using coconut, almond, quinoa and chia flours. Polly, she also has a video of how to make cashew milk too. I don't know how important having a powerful Blendtec blender is in the success of the process though.

Gloria · Post by **Gloria** » Wed Mar 09, 2011 5:34 pm

Kelly wrote:I'm okay as long as I'm in my routine between work and home but the stress level rises substantially as soon as there is mention of dining out, going to social events where food is involved and upcoming vacations.

That's the ongoing problem in a nutshell. Even when we're symptom-free, any of those situations represent a challenge.

Gloria

Pat · Post by **Pat** » Wed Mar 09, 2011 8:10 pm

Mary Beth and all,

Yes!!!! Imodium is gone!

I am blenderizing my squashes and that seems to be helping. I am trying to eat just ground meats too. I tried my Geri Freeda vitamin this am and so far so good. I was beginning to get lots of feet cramps and even eye twitches but it seems with adding back the calcium and vit/min that has subsided. It is 8 pm and I have only had 2 bm's today, both mush piles but I am thankful for only 2. My gut just feels more calm. I really think I am improving ever so slowly but I'll take that. This is so much better than when I was just struggling trying to figure out what I could eat and even though I am not eating many different foods and even if that is boring, etc, I am better!!!!! Thank you, thank you, thank you! And thank you to all on this board for unconditional support. It means a lot! DH is very supportive but you all understand. There is no way he can understand. Thanks for being here!

Pat

Gloria · Post by **Gloria** » Wed Mar 09, 2011 8:27 pm

Terrific progress, Pat! It's pretty impressive that you are off all Imodium. It certainly sounds like you are progressing.

I still eat pretty soft foods, though I can eat meats that aren't ground. I suspect that irritating the gut with rough foods is just as harmful as eating the wrong foods.

I hope your improvement continues.

Gloria

Post by **tex** » Wed Mar 09, 2011 9:13 pm

Pat,

Great! I hope your progress continues

Tex

mbeezie · Post by **mbeezie** » Wed Mar 09, 2011 9:17 pm

Pat,

So happy to hear that things are going so well. And tolerating the vitamins is really good news. I can feel your excitement

I wish Norman would hurry up and get here!

I know it's scary to try new foods, but I am guessing you will be able to tolerate some more. Go slowly, maybe one new food every 3-4 days. I know it's boring but have faith that it won't stay this way. In time you may be able to eat a much wider variety.

Mary Beth