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powerofpositivethinking

Member Since 06 Jan 2013
Offline Last Active Nov 15 2014 06:58 AM
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#930052 Functional And Metabolic Disorders In Celiac Disease: New Implications For Nu...

Posted by powerofpositivethinking on 09 September 2014 - 02:42 AM

I found this article an interesting read:  http://online.lieber...9/jmf.2014.0025

 

The writers compiled important points from forty-nine different papers for this article.  I recently had my nutritional levels tested again, and there was a 300 point drop in my B-12 level, but then I read this:

 

"A condition of pancreatic insufficiency can also contribute to lower serum Vitamin B-12 levels, since proteases are necessary to separate B-12 from salivary R-protein, in the upper intestine tract, and to allow the binding with stomach intrinsic factor."

 

 


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#925058 Still Abnormal Fat Malabsorption After 13 Months

Posted by powerofpositivethinking on 24 July 2014 - 03:27 AM

Hi greenbeanie!

 

I'm glad your doctor is starting to take notice!  If Vitamin K comes back abnormal, I would see if you can get Vitamins A, D and E checked as well.  I was bruising easily, and thought I was anemic, but instead it was vitamin K deficiency.  Despite massive supplementation, my vitamin K was not climbing, which prompted the doctor to test for fat malabsorption.  It came back that I was malabsorbing neutral and total fats.  I realize that total fats are linked to the small intestine, but neutral is a problem with the pancreas or gallbladder.  I then had the fecal elastase testing done which came back that I have severe pancreatic insufficiency.  To make sure everything else was ok, the doctor ordered a small bowel follow through, MRIs of my pelvis and abdomen and the capsule endoscopy.  Everything came back normal, so he agreed that my EPI is due to celiac disease.  I am a little overweight so I do not fit the stereotype of unexplained weight loss, but I am usually bloated, but that seems to be getting better.  Currently I'm prescribed 24,000 lipase Creon capsules.  I take two with each meal and one with a snack.  

 

I've had low potassium, but my magnesium has never tested low, however I feel so much better when I supplement with it!  I've read that only one percent of magnesium circulates in your blood, so even if your blood levels are normal, if you're showing symptoms, you should supplement.  My main indicator is when I lay down in bed at night and start to twitch.  I also read that when you malabsorb fat, the undigested fat pulls the magnesium out of your body.  

 

I also have low cholesterol, and the last time I had it tested, I was eating 100 grams of fat a day, so there should have been absolutely no reason for that.  Only my LDL is low, and my HDL is normal.  

 

At first the doctor told me to eat a high fat diet while on the enzymes, but I realized I just felt worse, so now I try to eat about 50 grams of fat per day.  When eating gluten, I used to bloat from my stomach the whole way down, but now I usually bloat in the lower intestinal portion, and from my reading that's because the fat is passing through my body undigested.  I also keep my fiber low since I've read that you should for fat malabsorption, and I feel better when I do because it cuts down the bloat.

 

I'm not sure how much the enzymes are helping.  TMI-my stool doesn't stick to the bowl very frequently anymore, but I have to wipe several times if you catch my drift :lol:  I think I may need a higher dose, but I have about another two months until I get the fat malabsorption and fecal elastase testing run again.  This is definitely a process, but I just have to keep doing what I'm doing and hope that everything resolves itself.  On the days, I don't feel bloated, it's a fantastic feeling.  Is it too much to ask to have that feeling each day  :lol:

 

 

I have tried over the counter enzymes and they made me feel worse at first, but after that they seemed to help a little (not enough to make a big difference, though). My doctor won't give me a prescription unless tests first show that it's needed. I have been taking probiotics for about 18 months and magnesium supplements for over a year. The magnesium makes a huge difference. At various times in the past I was found to have magnesium and potassium deficiencies, and low cholesterol (low in the good kind too), but they did not run the fecal fat test before and really did not seem to believe the diarrhea and sticky stools were as bad as I'd said it was.

I've taken B-complex on and off for years, and started alternating with sublingual B12 a few months ago. Although I have a documented 20-year history of chronic diarrhea, no doctor would ever agree to do systematic testing of other vitamins. They were convinced it was all in my head and just said to take a multi-vitamin and stop worrying about it. My B12 was checked last year and was in the low-normal range with the supplements, so that seems fine as long as I keep it up. The GI refused to test me for other fat-soluble vitamins once my celiac tests came back negative last year. Fortunately, I did just get word that she's agreed to order the vitamin K and fecal elastase tests now.

I get quite a bit of protein from skinless chicken, almond meal, coconut flour, sunbutter, and sometimes other meats. Though I don't feel great after eating these things, I know I need the protein and don't seem to have as much trouble with those protein sources as I do with fattier meats, nuts roasted in oil, or dairy. My lactose intolerance did pretty much go away after about 10 months gluten free, and it was great to be able to eat some dairy again without gas for the first time since I was a teenager, so I took this as another sign that my digestion is still slowly improving. It now seems to be just the fat content of some dairy products, not the lactose, that is bothers me. I wish they'd run this stool test years ago so that doctors would have taken me seriously before, since this test result seems to be the one that got my GI to take notice.


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#915647 Jimmy Kimmel Proves People Who Are Gluten-Free Don't Know What Gluten Is...

Posted by powerofpositivethinking on 10 May 2014 - 12:47 AM

ok I know I'm in the minority here, and although I don't watch Jimmy Kimmel regularly, I do like some of his things.  He did a video where the rapper Drake interviewed people about his music all while dressed up in diguise, and it is hilarious!!  I'm also a huge Drake fan, so I think that makes a big difference :)   It's called Fake Drake if you're interested in looking it up on YouTube.

 

Turn about is fair play.  I'm happy he mentioned that some follow it for medical reasons, but the fact he said it's annoying was a poor choice on his part even if he was just trying to get some laughs.  He may love pizza, but I don't miss the terrible reflux I used to get from pizza with the triple punch of gluten, dairy and tomatoes. 

 

I actually sent his video out to family and friends and used it as a teaching tool.  I explained this may be why you hear a colleague say they are gluten free and then watch them eat a glutenous donut.  Perhaps it's because they don't know what gluten really is, and that is a disservice to those of us that follow it strictly and would never dare let gluten into our bodies on purpose.  I'm pretty good at gauging whether a person is up for hearing the truth about a gluten-free diet, so I will educate those that will listen, but when it comes to family, they don't have a choice :lol:

 

On the positive side, this article did come up on ABC news: http://abcnews.go.co...ory?id=23645211

 

My favorite line is: If you think you have celiac disease, do not stop eating gluten before seeing your doctor, Thompsen said. If you stop eating gluten before getting tested for celiac, it could result in a false negative diagnosis.

 

I appreciated how they actually bolded that line in the article!

 

Happy weekend, everyone!


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#913049 Need Help With Tests Results Please

Posted by powerofpositivethinking on 18 April 2014 - 04:48 AM

just copying and pasting my update from another thread: yesterday was my follow-up GI appointment, and it went really well!  He reviewed that my MRIs and small bowel series were all normal, and then came the capsule.  He said he didn't see any blunting, but he did find an ulcer in the ileum and he said there could have been more but it was all dependent on how the capsule moved.  

 

When it comes to the pancreatic insufficiency diagnosis, I know that the MRIs would have shown Crohn's, so that was ruled out and I never have an urgent need to use the restroom anyway, pancreatitis was ruled out through the MRIs, everything else was ruled out except celiac, so I finally got doctor diagnosed with celiac disease.  Out of all the causes for pancreatic insufficiency, celiac is the best one since it means my system just needs a jump start!  I'm picking up my prescription for Creon later today, and I'm hoping this will be the final step to say goodbye bloating and stool sticking to the toilet!!  I'm supposed to be following up in 3-6 months to be retested for fat malabsorption, fecal elastase and the celiac antibodies.  

 

I'm so glad I found this site because if I would have listened to my GI last year when he seemed to think that positive DGP IgG test wasn't a big deal, I would still be eating gluten and probably feeling much worse!  Now he knows differently, and I did say at the end of my appointment yesterday how appreciative and thankful I am that he listens to what I have to say and takes it into consideration.  I realize that is a rarity for doctors, and I'm extremely grateful!

 

this study is encouraging! http://www.ncbi.nlm....pubmed/20458623

 

Happy almost Easter!


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#912380 Labcorp Stool Test Results And Questions

Posted by powerofpositivethinking on 12 April 2014 - 03:25 AM

more good news!  I had my MRCP, pelvic and abdomen MRIs all come back normal!  The tech told it me it was one for the books because since there were three separate ones, I laid on the exam table for 2.5 hours, but the most important thing was she said the pictures turned out great.  My capsule was done yesterday, so I should have the results of that this coming week.  My cold has turned into allergies...might have been that all along because finally spring has come to the Northeast!

 

Happy Weekend  :D


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#908912 Dulcolax ?

Posted by powerofpositivethinking on 14 March 2014 - 01:26 AM

i like to consider myself well versed in constipation remedies  :lol: When I used to try and take Exlax pre-gluten free, it didn't relieve my C but instead it gave me super intense gas and curl around the base of the toilet pain which included nausea, but I don't think I ever actually threw-up.  Dulcolax used to be my go to, but it's always amazing to me how different people's bodies react in different ways to drugs.  I tried many stimulant laxatives before realizing gluten was my problem, and all I can suggest is stay far...far...away from them.  Instead I'm a big fan of magnesium and pure liquid glycerin.  

 

My wardrobe is full of shirts that have plenty of stomach room because being bloated makes me feel so unattractive.  I've always hated anyone having their hands anywhere near my stomach area for that reason.

 

I hope you feel better soon!  


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#908909 Hla Dq2//8 Negative Ttga Strong Positive Where To Now?

Posted by powerofpositivethinking on 14 March 2014 - 12:39 AM

welcome, Pickled!

 

I'm so glad your doctor did not automatically dismiss celiac despite the negative gene test.

 

ravenwoodglass is a firmly diagnosed double DQ9 celiac.  I am also negative for both DQ2 and DQ8, but I do have one copy of DQ9. 

 

http://www.ncbi.nlm....pubmed/22342873


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#908649 Dating Thoughts And Profile Help

Posted by powerofpositivethinking on 11 March 2014 - 06:40 PM

thanks, Irish  :D  :D  :D  Not sure if you saw this in another post I made, but in non-dating news, my parents have finally come around!!  My Mom surprised me the other week and informed me that she and my Dad were slowly going to finish up their gluten products in their kitchen and replace them with gluten-free products.  I almost fell out of my chair when she told me that!!!

 

It's definitely been challenging at times standing up for myself and my health, but they've finally seen the positive changes in me, and it's made the difference!!  Now I'm just waiting to get my pancreatic elastase results back from my GI before my next step.  The turnaround time for this particular test is taking f...o...r...e...v...e...r  I submitted my sample last Wednesday.  I still think it's strange that you can be malabsorbing fat and still be overweight!

 

 

Honey, a 3 hour date, good conversation, a guy who knows what celiac disease is.... and YOU FEELING CONFIDENT and happy....is MAJOR league FANTASTIC!!

I am lost want to cry (and I am not even your real mom)  :lol:

 

 

oops, just saw this glaring typo..stupid auto correct lol

 

Anyhoo...this sure sounds like a nice guy!!  :)


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#908059 Dating Thoughts And Profile Help

Posted by powerofpositivethinking on 05 March 2014 - 03:50 PM

so last night I met a guy for drinks and had a good time and good conversation.  we were talking about favorite drinks, and when he was talking about beer, I used that opportunity to say I drink wine because I have celiac disease.  He knew what it was, and we talked about it briefly and then moved on and talked for another hour or so.  Both of my dates this week have been close to three hours, which I'd say is a success in itself even if nothing long-term materializes from them.  Now that I don't feel so terrible all the time, I can actually focus on having engaging conversations  :)


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#907573 Dating Thoughts And Profile Help

Posted by powerofpositivethinking on 28 February 2014 - 07:08 PM

this has been a looooonnnnnggggg week, but a good one!  Went out with a guy the other night and it was going really well.  After dinner, second time at PF Changs!!, he tried to kiss me but I had to kill the moment and say sorry I can't kiss you because of what you ate, and oh btw I have celiac disease.  Awkward...

 

However he seems to have passed the celiac jerk-o-meter test because I heard from him today, and he told me he called a few restaurants around the area about their gluten-free menus but also said if I wanted to do something else that works for him too.  That made my day  :)


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#907466 Trader Joe's Or Whole Foods?

Posted by powerofpositivethinking on 27 February 2014 - 08:42 PM

if you have ShopRite near you they have a great selection and are much cheaper than other stores  :)

 

I love the Trader Joe's vibe and prices but since there have been several accounts on this site about people getting sick from their store products, I won't chance it, so I save up and go to Whole Foods.


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#906875 Coming Up On 9 Months gluten-free And 7.5 Months Li

Posted by powerofpositivethinking on 23 February 2014 - 03:13 AM

fantastic news from the feeling better to studying nutrition  :D  :D  :D


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#905654 'patients Become Experts'

Posted by powerofpositivethinking on 10 February 2014 - 03:10 PM

never did I think reading articles on PubMed would become a hobby.  In fact, I didn't even know what PubMed was before joining this forum.  I gave my GI doctor the World Gastroenterology Report which discussed DGP IgG and its relationship to celiac, and at my last appointment last week it was clear he had been doing his own research.  Change is a great thing!


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#905653 New With Borderline Test Results, Opinions?

Posted by powerofpositivethinking on 10 February 2014 - 03:00 PM

Hi Skelly247!

 

I went into my first GI appointment with a whole list of symptoms and when he asked what my main ones were, bloating and constipation were the winners   :)  Those two suck the life out of me.

 

I bet if you were on gluten awhile longer, the DGP IgG would have been even higher especially since you're IgA deficient.  Did the doctor give you any reason for why your Vit D is so low?  It seems celiac is the reason, but I'd be interested to see if he/she was able to give you a good answer or a run around.

 

With regards to people being skeptical, the longer I've been gluten-free (today marks my 11th month!!) the more I've gained back my confidence and happiness and people have taken notice.  I'm fair skinned, but if you look at my school pictures from last year and this year, I teach elementary school, I finally have my coloring back and don't look so ghost-like.  I had a co-worker comment on that difference a few weeks ago. 

 

Whatever path you decide, gluten challenge or not, if you need any specifics about the DGP IgG test, ask me  :) I've spent the last year researching it because it was the only test on the celiac panel I tested positive on, but I am not IgA deficient.  

 

Welcome to the forum!

 

I've had problems with bloating and constipation for awhile and after a friend was diagnosed with celiac disease after having similar symptoms, I figured I would ask my doctor to run the blood test for me. 


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#902650 Grrrr Gene Testing-Results Not What I Expected

Posted by powerofpositivethinking on 14 January 2014 - 09:30 AM

all your replies definitely made me feel better :)

 

I was upset when I wrote the first post, there's no denying that, but despite those results it doesn't change that gluten makes me feel terrible.  It brings my digestion to a halt and the brain fog makes me feel like I'm having an out of body experience.  I'm there physically, but mentally I'm so out of it, I'm not fit to be around.  I even thought about the way I would have reacted pre-gluten-free to the test results.  I would have been upset for days at the outcome.  I'm still a bit disappointed, but it's nothing that compares to the fantastic way I've been feeling...minus the post I made the other week about finally trying oats again and reacting to them. 

 

This whole process has been so frustrating, but in the end I realize I should count myself lucky that LabCorp even runs DGP tests as part of their panel, or I would still be wondering what is wrong with me.  The only thing that makes this process less frustrating is coming here to vent and having others truly understand :)

 

Things I've decided:

-I'll stop chasing the celiac diagnosis because without DQ2 or DQ8, this country won't recognize it anyway.  Maybe in the future those genes will change, but right now it is what it is.

-When people ask me why I can't eat something with gluten, I'm still going to say that I tested positive for celiac disease.  They don't need to know which test.

-I really liked Melinda Dennis' idea of saying to a server at a restaurant that I follow a medically necessary gluten free diet. 

-Maybe in the future if they develop a test where they put your DNA/intestine into a petrie dish to see if it reacts, I'll entertain that idea.  A full blown gluten challenge would alienate me from my friends and family because of my terrible mood.

 

I've always been a curious person who wants to know why, and sometimes there isn't always an answer and that drives me nuts.  Before last year, I didn't even know what PubMed was, and now I realize what an awesome resource it is for celiac research and otherwise! 

 

At this point I've exhausted all my options, and so it's time to find my inner peace and let it go.  I'm simply going to say, "No gluten for this girl!" :)


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