Hello from yet another MC'er

LindyLou · Post by **LindyLou** » Fri Aug 12, 2011 5:59 pm

Hi everyone,
My name is Linda White. I was diagnosed with LC back in May and although I may be new to you all, I've been lurking on these boards since diagnosis and must say,you all seem like family to me! I have been suffering with digestive issues since I was pregnant with my last child 18 years ago and after searching in vain for a diagnosis all those years I finally found out #1 that after 4 colonscopies it's not IBS. #2 I am not a hypochondriac! and #3 I'm not crazy. I had thought about 6 years ago I had Celiac, but everytime I would be in a severe flare I would run to the doctors for the blood test only to be told that wasn't it. I've had problems with D for what seems like forever, but in the past it was only in the morning and after I took care of business I was good to go for the day (no pun intended)

Then around December of last year things got worse. I was going morning and night - sometimes waking me up in the middle of the night, so last march, back to the GI doctor I went for another Colonoscopy. I don't think I even really needed to do the prep since I was running to the bathroom so much! After the procedure while I was in recovery the doc stopped by and said IBS! I actually cried.

2 weeks after I had to travel out of town for a week for some training. The whole week I was gone was the most miserable in my life! I was going to the bathroom at least 10 times in the morning! Had a horriffic thunderstorms in my belly throughout the day then another 20 times on the potty in the evening! No joke. I am not exagerating! When I got back home (I'm not even sure how I made it the whole week) I called the GI doc to tell him there was something terribly wrong. He was off for a Jewish holiday for the week and the receptionist didn't have a referral so I called my GP. He ordered another look at my biopsies and that is how I discovered I had LC. When I had a follow up with my GI, I asked him about diet modificaiton - specifically avoiding gluten and his reply was 'that's an awful hard diet to follow'. The only thing he would offer me is steriods! I have been on them in the past and had a horrible reaction to them so I decided to investigate on my own and try to resolve my problems myself. That is where you all come in. I've been gluten free since late April. Still having problems however I'm pretty much back to morning and evening D. Things had been improving but I am no where near remission (if there is such a thing). I quit dairy completely about a month ago with again a slight improvment, but still am having problems. I've decided to order the Enterolab testing to try to get a handle on what all my sensitivities are. The only bright spot in all of this is in 2 months I've lost 22 pounds and no longer look like I'm going on 7 months of pregnancy. Thank you for all of your informative posts. I know I will eventually beat this - I will not allow it to get the better of me.

Linda

Post by **tex** » Fri Aug 12, 2011 6:37 pm

Hi Linda,

Welcome to our internet family. Sorry that you had such a tough time getting a correct diagnosis. I never cease to be amazed at how cavalierly, (and how sloppily, in some cases), some doctors handle test results. It's almost as if it's too much trouble for them to get it right.

The Enterolab tests can certainly eliminate a lot of the wondering we do, about whether or not we are truly sensitive to certain foods. One would think that it should be easy to determine whether or not we're sensitive to certain foods, but it's usually not as easy as we might think, because as long as we continue to eat even a single food to which we are sensitive, we're going to continue to react, so that it's almost impossible to pinpoint which one is the problem, with any degree of confidence. Testing can save a lot of trial and error, and a lot of worry. If you've eliminated the bloating, you're definitely making good progress. If you want to try eliminating another food before doing the testing, soy would probably be the next most likely suspect. About half of us are sensitive to soy.

If your doctor's comment, "that's an awful hard diet to follow", wasn't so counterproductive, it would almost be funny.

Of course it's not an easy diet to follow, but then living in the bathroom is not particularly easy, either. Maybe he should try living in the bathroom for a few months, to see what it's like.

With your attitude, you will surely be able to get your life back. Motivated people get results, and you're clearly motivated. Again, welcome aboard, and please feel free to ask anything.

Tex (Wayne)

sarkin · Post by **sarkin** » Fri Aug 12, 2011 8:16 pm

Linda,

Welcome! - and I must agree with Tex, you clearly have the smarts/gumption/attitude to get this beast reined in.

Congratulations on all the smarts and good thinking you've shown so far. I found the Enterolab testing very helpful - I had already slashed gluten & dairy, but was still eating eggs. I was amazed (and a little heartbroken) at how much better I felt without them. It's not unusual for their to be a 'honeymoon period' when you eliminate the worst dietary offenders, followed by a setback when the next-most-important food intolerance makes its presence known. Hopefully your list will be short and sweet. I did the genetic testing via Enterolab as well, and was really surprised at my "double-whammy" results. I now look back on my parents' late-life health moments, as well as various concerning health problems among my cousins, with a new perspective. Since you have grown kids, it might be nice to know - and Enterolab's fees for this test are considerably less than some other independent providers offer.

That "awful hard diet to follow" sure beats living in the bathroom. My instinct was to go for hard-core dietary limitations. In retrospect - I totally stand by this, and would have gone MORE hard-core, if I were a little more smart! I also tried a very brief "blast" of high-dose Pepto-Bismol, which worked for me but is not well-tolerated by everyone - I think it really helped, and I might have benefited from doing it a little longer (but - gross! pink! weird! - even with the capsules, which don't taste nasty). Hopefully you won't need to got there, but - put it somewhere on the bottom of your list.

Additional factors to watch out for (while you're reacting) are excessive oils, and fiber - raw vegetables can be very hard on an inflamed an angry gut. I am a little sad to miss corn on the cob this season, but not willing to take a chance, while I'm climbing back to feeling good.

Whatever your particular diet turns out to be, the Internet is rich with help - though of course this awesome forum is the best

I am using a lot of "Paleo" diet resources at the moment, while making my own way.

You can and will do this - and we'll help however we can.

Wishing you the best on your past to remission,

Sara

LindyLou · Post by **LindyLou** » Fri Aug 12, 2011 9:19 pm

Thank you so much for your words of encouragement. The diet really can be a challenge at times however the alternative is so much more worse! Although I still have a problem with D, I will say there has been marked improvment in many other ways. My main food groups were breads, pasta's and gravies. Now they seem to be chicken, bananas and rice. I would really like to find a gluten free flat bread so I can go back to eating my chicken gyros sandwhiches.
The arthritis I have had in my hip has gone from a pain level of 7 to what is now around a 2 to 3. I have suffered from migraines and cluster headaches for the past few years yet have only had 1 migraine this year - no cluster at all. I don't remember seeing this symptom at all but I had lost the hair on my arms and legs quite a few years ago and yesterday noticed a downey peach fuzz growing on both. I literally haven't had to shave my legs in years. I also get what I call a hot node on the right side of my neck which has subsided quite a bit. I only notice it a couple of times a week, which tells me there is something else suspicious with my diet. Soy is definitly the next thing to eliminate however I'm really having a challenge with that one. I have asked my GP to take over my care as I believe the GI doc is uneducated when it comes to MC. He is setting up an appointment with a specialist at the University of Michigan for a consultation and between the two will help with my care. I was diagnosed as hypothyroid along with having high blood pressure and am on meds for that. I think the elevated bp was due to this illness as it was diagnosed within the last year.
One question I do have that I haven't been able to get answers to yet is gluten cross contanimation. On the Celiac forum they discuss this quite a bit and have to replace their cooking pots and utensils, toasters, etc. Does that also apply to MCers? And will gluten ingestion cause the same damage as it does to a Celiac patient?
I currently take 8000 iu's of vitimin D3 along with a super vitiman B that I purchased at Costco. My vit D level was down to around 17 so that's doctors orders. The B I started on my own. I was trying to take a probiotic called Trunature but that seemed to make the D worse. What other vitimins or supplements should I be looking at taking. So many questions. Thank you for your time and caring. I'm sure I will have many more questions but you all have helped immensly already.

Hugs,
Linda

Sharaine · Post by **Sharaine** » Fri Aug 12, 2011 9:52 pm

Hello, Linda. Welcome to our Family!

You have the right attitude and will do well with your management. I was only diagnosed 2 months ago tomorrow (June 13th), so I am very new at this. I do, however, come to this website daily (sometimes more than once a day) to read and try to learn.

I noticed you said you wanted to find GF pita bread. I found a GF online mall tonight and just checked on pita bread for you that is also DF. Lo and behold, here is one: http://www.celiac.com/glutenfreemall/he ... -2075.html. So, there is hope for you and your little sandwiches.

I am GF and DF, and have cut soy down but not out yet. I feel a lot better. My issues arise when I get accidentally gluten-ed or dairy-ed, as Sara puts it. It knocks me on my butt and takes me a week to recover.

If you can afford the Enterolab testing, I'd encourage you to do it. When I have the funds, I most certainly will. Meanwhile, I take Entocort 9mg/day which helps me heal, but which I will be gradually tapering off starting in September. I noticed you said you have had problems with steroids in the past. Maybe Entocort isn't for you. And Sara has pointed out she hasn't taken Entocort and is managing solely by diet. She's amazing and a wealth of information, as are all of our active members.

Good luck and keep asking questions. In doing so, you not only help yourself, you help the rest of us!

Sharaine

Post by **tex** » Fri Aug 12, 2011 10:16 pm

Linda,

Even though we virtually always test negative to the classic celiac blood tests, (unless we also have fully-developed celiac disease), most of us are just as sensitive to gluten, as the average celiac, and some of us are even more sensitive, so yes, we have to be very, very careful about cross-contamination. Most cooking utensils can be used, if they are cleaned meticulously, but anything with cracks or crevices can harbor traces of gluten, especially baking pans, where hard, baked-on deposits may be missed by washing. Wooden spoons are suspect, but most others should be OK. Also, coated pans, (such as teflon), that have damaged or scratched surfaces, may hold residual traces of gluten. Yes, it's always a good idea to use a dedicated toaster if you do any toasting, because a single crumb is enough to cause a reaction, for many of us.

Vitamins D and B-12 are probably the most likely to be depleted, and it's important to supplement them. The "B" vitamins are important for hair health. If you have problems with foot/leg cramps, or restless leg syndrome, a magnesium supplement may be needed, in addition to the "B" vitamins. Make sure that you're getting enough folic acid, because an adequate supply is necessary in order to utilize B-12. Be sure that your vitamins, cosmetics, toothpaste, etc., are free of the allergens that you are trying to avoid.

Migraines and arthritis symptoms, chronic fatigue, etc., are all associated with MC, and most of those symptoms should disappear, (or at least become much less significant), as you get your MC under control.

Tex

LindyLou · Post by **LindyLou** » Sat Aug 13, 2011 6:09 am

Sharaine, thank you so much for sharing the link. I've tried to stay away from any type of breads as the ones I have tried were more like the consistancy of cardboard. But I am definitly going to buy the pita bread. I used it for so many things in the past that I at least have to give it a try. Actually, there seems to be many items I'd like to try. Escpecially the bread crumbs! For the last 30 years I have cooked a stuffed turkey for Thanksgiving and had been getting depressed as the year has moved closer to that day thinking it just wouldn't be the same. Now there's hope!

I'm like you in the respect I have cut out gluten and dairy. I seem to do ok with hard cheeses but really miss brie with fresh fruit and thick crusty bread. I think I'm getting to the point where I can start to figure out some of the triggers that cause me problems. Soy really doesn't seem to cause a reaction however since I haven't had a solid bm since before December of last year, I cannot be sure. Like Sara, I'm trying to do this through diet alone and although I have made progress, there is/are something(s) there that my body cannot tolerate. Which is why I am going forward with the Enterolab testing.

LindyLou · Post by **LindyLou** » Sat Aug 13, 2011 6:32 am

Tex,
Thank you for the tip on magnesium. As I said earlier, I first noticed symptoms of MC 18 years ago when I was pregnant with my youngest. The two symptoms at the time were D and restless legs syndrome. The latter was so bad that I could not get a full nights sleep and even ended up with some pretty extreme insomnia. When I had my son and was still in the hospital I asked them to take him to the nursery and give me a sleeping pill. In the middle of the first good sleep in the last 9 months, a social worker woke me up and started questioning me why I was rejecting my son. I still don't think she believed me but didn't press it any further. When I first went gluten free, I had terrible leg and foot cramps. They're not as bad now, only occasional but will begin taking them today! The Kirkland Signature brand of vitamins I take are called Hi-Energy Complex B-100 which contain 150mg Vit C, 100mg B1, 100mg B2, 100mg Niacin, 100mg B6, 400mcg Folic Acid, 100mcg B12, along with Biotin, Pantothenic Acid, Iron, Zinc, Selenium and copper. They are both gluten and dairy free and seem to help. At least I find I'm no longer needing a 3-4 hour nap in the afternoon after getting a full nights sleep. I still need to look into my cosmetics though. As for kitchen utensils, the only ones I use are non-wooden. I keep the wood ones around for the kids when they cook, however have discontinued using them for myself. I made a list if what I suspected were side effect symptoms of having MC for my doctor (GP) when I told him I was firing my GI doc. There were 20 of them at last count, and as I read through them now although no symptoms have disappeared completely almost all of them have been reduced. Thanks again for sharing your knowledge Tex. Your are definitely a blessing!

sarkin · Post by **sarkin** » Sat Aug 13, 2011 9:12 am

Linda,

You're doing a great job figuring this out!

You might want to start with a lower dose of magnesium, as it can have a laxative effect. I'm trying a topical/transdermal magnesium (I make it myself, by dissolving 'nigari flakes' in water - that's a food-grade magnesium chloride). It definitely seems to help.

BTW my blood pressure was way up, right before I got sick. And it's come right back down, in just a few months. So keep an eye on yours, because your dosage may wind up being too high, as your MC symptoms reduce. (Yay!)

Congratulations on your progress,

Sara

LindyLou · Post by **LindyLou** » Sat Aug 13, 2011 9:34 am

Yes Sara, my blood pressure was also sky high. It was elevated after my gyn put me on Lexapro. The pharmacy I go to is quite small - they actually all know me by my first name when I call for a refill on a script

Anyway, I sat down with the pharmacist to try to figure out if any of the meds I was taking were causing this rapid increase and we came up with Lexapro. So without consulting my doctor I stopped taking it. BIG MISTAKE! I have never had withdrawls like this before in my life and they all seemed brain related. At the time I was taking an accounting class and to this day don't know how I passed it. At the age of 48, I went back to school as I had been laid off for over a year. But I regress - my doctor has had me on Lisinopril to control that and the last few times I've had my BP checked, it was back to the low normal it had been for the first 47 years of my life. I'd like to try and stop taking it as I know I am slowly healing but I still will mention it to my doc next time I see him. As for the magnesium supplement, where do you get yours and how did you come to the transdermal solution?

sarkin · Post by **sarkin** » Sat Aug 13, 2011 9:56 am

Linda,

It does seem that the one thing the body hates more than whatever it hates is - sudden change. Like you, I had angelic blood pressure for decades, and my doctor wasn't even concerned when it went up. But I was outraged, so I bought a home BP monitor. This was all leading up to my "MC crash" - and sure enough, a couple of weeks ago, I must have been cross-contaminated, because my BP went up again. (Rarely sky-high, but a couple of times above 140/90.) It dropped back to the usual 115 / 75 (or under) within a couple of days, which I hope is a sign of healing.

I am sure I heard about transdermal magnesium here on this board. I was having leg/foot cramps severe enough to wake me from sleep. I spoke with a fellow in a health-food store, and then I took a book out of the library, "The Magnesium Miracle," and sort of fast-forwarded through it. Some pre-made topical magnesium products are very expensive, but on a Paleo-ish blog I saw a reference to a very affordable place to buy the salts and make it myself (health-food-story guy was doing that with some giant 10-pound bags of something that's used in fish aquariums, but I liked the idea of something smaller, and food-grade).

Here's the product I bought: http://www.naturalimport.com/inc/sdetail/6922 You put it in a spray bottle (I have a little travel pump-bottle), as much as you can get in there, and add water. It's meant to be very super-saturated. The result is very salty (will sting, if you put it on a scratch or cut), and feels oily. Health-food-store guy sprays it on and then walks his dog, and then showers and go to work. But I sometimes put it on at night, and leave it on while sleeping. I've also slathered it on after shower, and kept it on all day.

Of course I have no idea how much magnesium I'm actually getting, but I don't know exactly how much of any nutrient I get from my normal diet, or how much Vitamin D I managed to create yesterday while outdoors... it seems incredibly low-risk and benign (and I don't have leg cramps, so I'm happy).

My brain symptoms, in retrospect, were as bad as the D, but I felt so digestively awful (and so brain-fogged) that I didn't fully appreciate how awful that was until it got better. Lexapro is definitely on that list of meds that can trigger MC. Hopefully your experience with BP meds, if your BP continues to drop, will be more of a gentle tapering down and less of a crash!

-_Sara

Hope this helps. Your pharmacy will miss you when you get so much better you're rarely popping in

Post by **tex** » Sat Aug 13, 2011 11:11 am

Linda,

You probably need much more B-12 than 100 mcg per day, because before our gut heals, we almost always have a malabsorption problem. 10 or 20 times that amount is more like it, and when I realized that I was deficient, I took 50 times that amount, (5,000mcg), for a while, then went down to 1,000mcg. Be sure that you are taking B-12 in the form of methylcobalamin, (not cyanocobalamin), because methylcobalamin is the active form, and much more easily absorbed and utilized by the body. Many of us, use a sublingual form, a lozenge designed to be dissolved under the tongue, where it will go straight into the bloodstream, thus bypassing any malabsorption issues in the gut.

Incidentally, magnesium is known to help lower blood pressure, as well. Because I don't eat halibut, and I can't eat any good magnesium sources, such as nuts, spinach, greens, etc., I take a 250 mg per day supplement. Much more than that often causes D, as Sara pointed out, and even 250 mg may cause problems for some of us.

A lot of anti-anxiety, anti-depression, etc., drugs are prescribed to people who's issues are actually caused by food sensitivities, especially gluten-sensitivity.

Tex

sarkin · Post by **sarkin** » Sat Aug 13, 2011 11:40 am

Tex,

I'm glad you restated that, about the B12. I'm currently taking 2000mcg/day, but maybe I'll up it for at least a little while, and/or take it in divided doses, morning and afternoon, for maximum 'coverage.' I really noticed the difference when I ran out and inadvertently bought a 1000mcg product (cutting my intake in half). I saw a deterioration in balance/steadiness and an increase in dizziness within a couple of days. There are pretty subtle symptoms, but now that I'm aware of them, I'm realizing what a direct path to an eventual fall/hip-break/who-knows-what this could mean.

I also take a B-50 complex, and am thinking of taking that 2x/day as well. It's so easy to underestimate how far we have to go on the journey to healing.

Love,
Sara

LindyLou · Post by **LindyLou** » Sat Aug 13, 2011 2:10 pm

Wow, I thought I already was taking alot since the nutrition information on the back of the label says 100mcg is 1667 times the rda. And the label states it's cyanocobalamin I am ingesting. Appreciate the information Tex. Is it possible to OD on B12?

Post by **tex** » Sat Aug 13, 2011 3:43 pm

You will only be able to absorb and utilize a small fraction of the cyanocobalamin. I take 2,000 mcg of methylcobalamin daily, (orally, not sublingually). This keeps my blood level of B-12 near the upper limit of the "normal" range. The Food and Nutrition Board does not show a tolerable upper limit for B-12, so apparently they don't consider it to be a toxic risk. If a risk of an overdose does exist, then taking it orally should avoid that risk, since any unabsorbed B-12 will simply pass through the colon, unabsorbed. A sublingual dose, by contrast, would be absorbed, whether it was needed or not.

For most of us, an average daily dose of about 1,000 mcg of methylcobalamn, should be more than adequate, even while we're reacting. The body can store B-12 for years, so it's possible to take large doses for a while, and then do without, for a while.

For anyone in remission, (and presumably without a malabsorption problem), more normal doses, (such as the amount in your multivitamin), should be adequate, especially after the intestines heal. We should be able to get enough B-12 from our diet, after we've been in remission for a while. I continue to take a high dose, even though I've been in remission for about 7 years now, because I have peripheral neuropathy damage, (due to years of untreated gluten-sensitivity), and because B-12 is absorbed in the terminal ileum, and part of my terminal ileum has been surgically removed. That wouldn't apply to most of us, obviously, though neurological damage due to gluten is probably a lot more common that the medical community realizes.

Tex