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powerofpositivethinking last won the day on May 13 2016

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  1. I'm not sure if it's in all Target stores, but in the two near me in Delaware (Brandywine and Christiana Mall locations) have started selling all of these http://udisglutenfree.com/product-category/frozen-meals/

     

    I've seen these in several grocery stores locally, but Target sells them for $1.50-$2 cheaper.

     

    These Targets are also carrying WOW brand cookies as well.  http://www.wowbaking.com/

     

    Because I needed another reason to love Target  :lol:


  2. I was a big C sufferer, and when people ask me what led me to get tested for celiac it was because of the C and bloating.  For reference I'm a 29 year old female.  I was always regular and then that started changing.  My Mom tried to convince me everything was fine, but I knew something wasn't right.  It's one thing if you've been irregular all your life, but I hadn't been and I knew I needed to get it checked out.

     

    I consider myself the queen of laxatives and C remedies :D   Before I knew gluten was poison to my body, I loaded up on fiber products like Fiber One and boatloads of water but nothing moved and I felt huge.  I dabbled in Dulcolax, smooth move tea, Exlax, but I knew I didn't want to take those for the long term so I kept searching.  My GP prescribed Miralax, but I knew I didn't want to take that long term either and it didn't even help me anyways.  My GP and GI kept saying more fiber, exercise and water, but it wasn't helping.  Hands down the best relief I've found is magnesium and liquid glycerin.  

     

    My GI agreed to test me for celiac and I tested positive and removed gluten from my diet.  After some other tests I was diagnosed with fat malabsorption and exocrine pancreatic insufficiency, but thankfully I took Creon, and I've lost both those diagnoses.  The best C remedy I've found is magnesium.  My C got better after the celiac diagnosis, but since my pancreas was out of whack I still had bloating and occasional C problems.  I used to have to take a whole lot of magnesium to feel relief because fat malabsorption also causes you to lose magnesium.  Magnesium is important in so many bodily functions.  I take Super Magnesium from GNC.  I don't recommend anything with magnesium oxide because it's harder for your body to absorb.  

     

    My vote is for magnesium and liquid glycerin.  I no longer use either of those on a regular basis.  I can't even remember the last time I used the liquid glycerin.  I will say that when I get super stressed from work around concert time, I teach elementary music, that makes the C reappear, but I take one dose of magnesium and it levels me out quickly.  The trick is to find the right dose of magnesium for you because if you take too much it causes D.  Hope this helps!


  3. thanks everyone  :)  I've been resting more and am definitely getting back to feeling like myself.  I was told the pink coloring is back in my face which is a good sign.  No more dark circles under my eyes and my headaches/brain fog are much better, but my intestinal area is still a bit sore.  The gluten-free diet may be a little challenging at times, but feeling like myself is the best reward.  I do not miss feeling like this regularly at all!


  4. I've been strictly gluten-free since March 2013 and to my knowledge have only been glutened three times.  Unfortunately I'm still feeling the effects of the third one.  I can't pinpoint it exactly, but I think it either came from Thanksgiving dinner or Black Friday lunch out.  

     

    In general I have delayed reactions.  I read about people knowing they've had gluten within a half hour, but that's usually not my case.  Instead on Sunday morning I woke up with a killer hangover except I hadn't had a single thing to drink, and I've woken up with one each morning, but thankfully they've been reducing in intensity.  I've had periods of brain fog, kidney pain and the dreaded C so I took some magnesium.  My intestinal area is so tender.  Drinking large amounts of water only makes me feel more bloated even though that's what I've been doing since that's what suggested.  I feel huge even though the scale only says a three pound gain.  I know the effects are being enhanced because it's that time of the month too, but I also know that so many of these things have not been happening monthly, and that most of it is from the glutening.  I ended up taking the day off from work, which I never do, but my body just needed the rest.  I can't believe I used to live like this daily, and think it was all normal.  Thanks for letting me vent, and now it's time to go back to sleep.  This too shall pass...


  5. i also read the link on this page saying that supplemental enzymes may or may not be a permanent thing - i'm afraid to try to eat without them lolz :D

     

    I ended up being able to go off Creon about two months ago because my elastase testing went from 72 (indicated severe pancreatic insufficiency) up to a 414 (anything over 200 was considered normal), and things had been going really well!  Unfortunately I got glutened sometime last week...can't pinpoint it, and I'm still feeling the effects.  I ended up taking the day off work, which I never do, to just rest.  I know it will pass, but I can't believe I used to think feeling this way all the time was normal.


  6. so living in the northern Delaware/Philly area, Wawa convenience stores are all around!  They really stock some great on the go things for the gluten-free crowd.  They've started carrying Krave jerky and Wai Lana yucca chips.  My favorite flavors are the black cherry pork bbq for the jerky, and the herb and garlic for the Wai Lana chips.  Maybe two months back I sent them a nice e-mail letting them know I appreciated that they carried these products and other products that were convenient for those of us with celiac disease/NCGS, and then they sent me a small gift card for my positive comments.  That was something I wasn't expected, but it made their value go up even higher.  Their restrooms are always clean, so I know I can wash my hands before eating whatever I buy.  I promise I'm not a Wawa spokesperson, but my friends tell me I should be along with Wegmans because I love Wegmans too  :D


  7. my GI ordered a MRI of my abdomen and pelvis, small bowel series and a capsule endoscopy.  Those all came back normal with the exception of a ulcer in the illeum section of my small intestine.  I didn't show pancreatitis, so that was ruled out as a cause for EPI, and I didn't have Crohns or CF.  Check out table 4 in this article which lists the different causes of EPI http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132852/#!po=0.925926

     

    I had all these tests done, and when everything came back pretty much normal, my GI decided my EPI was all related to celiac.  I hope this gives you some other ideas!

     

    Are you taking your ZenPep with your food and not before or after?  I know Creon works best when taken with your meal.

     

    Thank you for the response and the suggestions. I am actually taking 500 mg of Magnesium a day right now, and have been for months. I think the muscle weakness is maybe some other electrolyte, like potassium or calcium. Either way, I still seem to be very easily fatigued, the degree of which varies based on how much or how fatty my BMs are... Sometimes I wonder if I may need to be taking more zenpep, but then I hear of people like you that seem to get better on a much lower dosage! I guess not all cases are the same, but I wish mine would come along a little faster... Can I ask what sort of tests your doctor did to rule out that your EPI wasn't celiac related? My gastro hasn't ordered anything to do so, but I may need to ask him about that.

     

    Thanks!


  8. I sent this to Utz:

     

    To whom it may concern:

     
    I absolutely loved eating your Utz Natural Gourmet Medley chips!  As an individual with celiac disease, I was very sad when I realized the new packaging for these chips contained the new allergen warning, "Processed on a production line with other products that contain milk, wheat and soy."  After searching unsuccessfully for the past few months trying to find a substitute for your chips, I decided I'd at least try this e-mail.  *The product link is included at the bottom of this e-mail for further clarification.
     
    Is there any way these chips can be made on a line that doesn't come into contact with wheat and soy, and can be labeled once again a gluten-free food?  I don't know all the logistics of your processing, and perhaps running these chips on the same lines as wheat and milk is more cost effective, but if there's any way they can be made on a different line, you would have a happy customer once again.
     
    Although I live in Delaware now, I grew-up in Central PA, and have always loved Utz chips!  In fact, my sister lives in Hanover, and I've been to your factory and taken the tour.  I realize my request to run these chips on another line might not be possible, but I appreciate your consideration.  Thank you.
     
    I received this response:
     
    Thank you for taking the time to express your concerns. I have made your comments heard in our Marketing Department and Quality Control to see what can be done about this. Hopefully, we can get this changed back in the near future.

    Sincerely,
    UTZ QUALITY FOODS, INC
    Customer Care Center
    Diana
     
    Here's hoping they change things back because I loved those chips!!

  9. I would look into taking a magnesium supplement for your muscle weakness.  However I would caution you to start out on a low dose and slowly increase to find your threshold because if you take too much it brings on the big D.  I've had my magnesium levels tested various times, and each time they come back normal, however I had deficiency symptoms like muscle twitching and whole body spasms where it felt like I was falling in bed.  Before going gluten free, there was a period where my leg bones hurt all the time...not normal.  I think the important thing to note is that even if you have a normal blood level for magnesium, only 1% of it circulates in your blood, so if you have symptoms, you may benefit from a supplement.  I've told both my GP and GI doctor that I feel better when I take magnesium because it helps my muscles relax and helps me use the restroom.  I'm a former big C sufferer.  They were both supportive that I continue to take it.  I wrote more about it in this thread from May https://www.celiac.com/forums/topic/107513-wonder-mineral-magnesium/

     

    This is a good article too: http://glutenfreeworks.com/blog/2010/04/16/magnesium-deficiency-in-celiac-disease-common-and-dangerous/

     

    The GNC Super Magnesium pills are 400mg dosage, and now I only have to usually take one or two to get the same effect as four of them and there were a few times I had to take five of them.  I'm happy to say that I did receive my fat malabsorption tests back, and to my surprise and happiness, I am no longer malabsorbing either neutral or total fat!!  I have a few more doses of Creon left, and then it's time to see what happens when I go off of it.  If I start to get random bruising again, that will be a big sign to me that my Vitamin K has decreased again.  

     

    Random bruising was a symptom of malabsorption for me.  Here's my progression of Vitamin K.

     

    February 2013 <0.13 with a normal range of 0.28-1.78

    June 2013          0.16

    December 2013 0.18 (After this test, my GI then tested me for fat malabsorption.  I had been taking a supplement that was 1,000 mcg of Vitamin K which is equal to 1250% of your daily value.  I was taking 7 times that amount at his recommendation for two weeks intermittently, and the levels weren't jumping like they should have been.)

    August 2014       0.34 (I had been on Creon since April 2014, so I attribute the jump in the level to that.)

     

    My GI ran a lot of tests just to make sure the EPI was related to celiac and nothing else.  I think my pancreas was just burning out from years of gluten ingestion, and it does seem that all it needed was a kick start from the Creon.  Going gluten free at first didn't solve everything because of the underlying problem of fat malabsorption and EPI.  After those were discovered, now things have been progressing quickly.  My levels jumped a lot faster than in this study, but I'm also thirty years younger than the mean age evaluated.  http://www.ncbi.nlm.nih.gov/pubmed/20458623 

     

    Be persistent because you are your own advocate.  I didn't present with the classic fat malabsorption symptoms, but something wasn't checking out, and now things are moving along.  I hope improvement comes quickly for you!!  

     

     

    Thank you for the response... I am a 23 year old male, should have mentioned that! :) It's great to talk to someone who is going through something similar. I actually have referenced that thread several times, it's very helpful, thank you for posting all of that research. My vitamin D absolutely plummets if I neglect to supplement, but my levels have been good with supplementation.

     

    Have you had any sort of symptoms that you can attribute to your malabsorption? I have been dealing with severe weakness (muscle weakness, easily fatigued, etc.) for quite some time now because of this, and I am not even able to work at this point. My potassium was also dropping for a while after having large BMs, but that seems to have improved. My BMs in terms of frequency, consistency, seem to be improving veerrrrry verrryyy slowly, along with the weakness and fatigue to some extent. The progress seems to be so slow and uneven sometimes (I'll have a relatively normal BM one day, and the next have horrible cramping and diarrhea), that it's hard to convince myself this is even working. I'm also working with a GI doctor that initially doubted I even had Celiac disease, and doesn't really seem to be able to make the connection between Celiac and EPI, which can be frustrating to say the least.

     

    How quickly has progress come for you? I have been taking them since June, so about 4 months now. I'm taking Zenpep 100,000 per meal and 20,000 with a snack... I just want my job and my life back!

    Thanks :)


  10. glad to hear things are improving!

     

    here's a thread you might find helpful:  https://www.celiac.com/forums/topic/105648-exocrine-pancreatic-insufficiency/

     

    I'm currently taking Creon.  Recently, I was excited because my pancreatic elastase testing was initially a 72, and anything under 100 is classified as severe pancreatic insufficiency.  However I just had the level retested after taking a dose of 48,000 units of lipase per meal, and a 24,000 unit dose with a snack.  I've taken this dosing since around April, and my level increased to 414!  Although it's a significant improvement, I'm still in a holding pattern to see if I will continue taken the Creon or not.  I had my fat malabsorption retested at the same time as the pancreatic elastase, however LabCorp made an error and gave me the correct collection container, but then entered the test as the quanitative instead of qualatative fat malabsorption test.  That error caused my sample not to be processed, so I have to give another sample  <_<

     

    Last time my fat malabsorption testing showed malabsorption of both neutral (deals with the pancreas, and this led me to asking to be tested for EPI) and total (small intestine/celiac related) fat.  If my fat malabsorption comes back normal on the neutral end, I may stop the Creon, but since my stool still occasionally sticks to the toilet bowl, I'm not sure if it will come back normal yet.  

     

    It took awhile for me to be tested for EPI because I am slightly overweight, and putting on weight has never been a problem for me haha  Instead I was taking massive doses of Vitamins D and K because I was deficient in them and despite supplementation, my levels hardly changed.  I was tested for fat malabsorption, and that came back positive.  Then I was tested for EPI and was diagnosed with that as well.  Thankfully my last vitamin testing finally showed my Vitamin K in the normal range!!  Vitamin D is still only a 31, so I've continued supplementing with that.  

     

    For reference, I'm a 28 year old female.

     

    Hello all,

     

    So I have been having some horrible issues over the past 8 months or so. Basically, I have been having loose stools, hand tremors, serious weakness / fatigue etc. that has prevented me from working since December. I've also ended up in the hospital several times with low potassium (3.0 usually).

     

    I was diagnosed with Celiac disease in late Summer 2011 with positive biopsie and antibodies. I had been doing pretty well on the gluten-free diet until last summer, when these issues started popping up. I've tried a whole bunch of different things, like eliminating soy, dairy, grains, legumes in general, nuts, nightshades, and none of these eliminations have done much for me. Supplementing has not helped too much, either. I've been using betaine HCL for a couple of months now, thinking my stomach acid was low, but this did not do much for me.

     

    Over the past 5 days, however, I have been taking prescription pancrelipase (15,000 units/day), and I have started to see some improvement in my Bms. I've read a couple of studies saying that pancreatic insufficiency is a pretty common condition associated with Celiac. One of the same studies also mentioned that the average dosage for people treated with the enzymes was 45,000 units/day:

    http://www.ncbi.nlm.nih.gov/pubmed/20458623

     

    There was another study that mentioned 30,000 units/day, but I can't seem to find it.

     

    My question is: Has anyone out there found that they had pancreatic insufficiency? If so, what dosage of pancrelipase (common name Creon) were they taking? What kind of success did you see?

    I am starting to feel cautiously optimistic that this may be the solution to my ongoing malabsorption, but think my dosage might be too low.

     

    Thanks!


  11. so I never came back to post, and my favorite chips were safe, but due to knew manufacturing procedures they no longer are.  It was like having the wind knocked out of my sails when I saw the new packaging and the line on the back that said, "Processed on a production line with other products that contain milk, wheat and soy."  

     

    http://www.getutz.com/get-snacks/potato-chips/natural.html


  12. Talk about a delayed response on my part  :)  I'm doing well!  I will admit I am a little upset to a certain extent because I had my DGP IGG level tested again in August, and it rose 4 points, and I'm still in the slightly positive range.  I do my absolute best with CC, and I still do not eat out very frequently.  I always keep this thread in the back of my mind: https://www.celiac.com/forums/topic/106693-new-test-for-non-responsive-celiac-disease/  Maybe my body is just one that remembers really well.  My Vitamin D level was a 31, so my PCP prescribed the 50,000 IU dose weekly, but I am no longer Vitamin K deficient!!  

     

    In other news, this has been a mentally draining start to the school year, but then I think about how much tougher it would be if I was still on gluten.  My fantastic GI doctor left the practice in August  :( I did see another one within the same practice so I could get my fat malabsorption and pancreatic elastase testing redone, and he seems moldable haha  I'm still waiting for those test results.  I'm working on fulfilling prerequisites so that I can apply to start a masters in nutrition hopefully next fall.  I've had a good time dating, and I have a fourth date tonight, so we'll see how that goes.  I really think someone should write a book on dating with celiac.  I've gotten better with bringing it up casually, so it's getting easier but still is interesting.  Life is busy, but in a good way  :)

     

     

     

     

     

     

    This is excellent!

    Irish already made all the observations I had and more...so I'll simply say...ditto.

    Thank you for posting this :)

    How are you feeling?


  13. I found this article an interesting read:  http://online.liebertpub.com/doi/pdf/10.1089/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."

     

     


  14. So I've got to say I love when companies take the guess work out of things  :)  I went to Whole Foods the other day, and they started carrying the new Jason line of certified gluten-free facial products, which are also fragrance free.  Here's a link to the line: http://www.jason-personalcare.com/body-loving-products/gluten-free-new

     

    The line was available at the Whole Foods in Glen Mills, PA.  


  15. I cannot eat oats.  I think it was back in January I tried a small bit of the Udi's granola, and then I felt bloated and depressed for the next four days.  I may be able to tolerate them again in time, but let's just say I'm not in a rush to feel that way again  :lol:

     

    It did occur to me that gluten-free oats may be a problem. I didn't eat any for the first six months, but then I added them in slowly and thought I was okay with them. I only have small amounts a few times a month. I definitely don't have any quick reaction to them, but maybe an oat intolerance snuck up on me.


  16. I experience that falling feeling too!!  Thinking about it, that only happens maybe once every other week now.  I feel like I'm falling, and then I have what I pretty much equate to a full body spasm.  It's a strange feeling.  Before going gluten-free, my big toe would move on its own.  It sounds strange, but I would sit in bed and watch it move without having any control over it.  I am very happy to say that stopped happening a few months into the gluten-free diet.

     

    strange stuff  :)

     

    I had a sleep study done once, and in the pre-screening they asked me if I ever had those twitching jerks when you feel like you're falling. The nurses looked incredulously at each other when I said I had them multiple times per week, and sometimes multiple times per day. Apparently that only happens to most people a few times per year! (Most of my muscle twitches are not that big, though.)