0
Rowena

A Few Well Wishes Needed

Rate this topic

Recommended Posts

Well I've had radiology done to see if I've gall stones... No luck.  Now because I'm still having problems, my PCP is sending me specifically to a GI...He's asking the Gastrointestinal doc do a zillion tests, possibly including a biopsy to again get results for Celiac.  H pylori and allergies are all possibilities... I'm scared to death!  I've been looking for complete solutions for years.  So wish me luck and hope they find something!  Sometimes I feel like a Hypochondriac cause doctors can't find something, but I know I'm not!

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


I hope you will get some definitive answers soon, and will get some direction.

 

When your test is negative, it doesn't mean your symptoms are not there, it means that they cannot be defined yet.  Many of us have been told it was all in our head.  Now, I can tell you that mine was in my head, my tail, and all over in between.  Keep on looking, because it isn't without a cause.

 

Get well soon!  ***

 

D

Share this post


Link to post
Share on other sites

Yeah my blood test for Celiac was negative, but that doesn't mean I don't have a gluten intolerance... Because I sure do...  If I didn't have a gluten problem, my cycle wouldn't have miraculously regularized when I stopped eating gluten... But I've got to figure out why I'm STILL feeling nauseous, and got soft sometimes diarrheatic stools.

Share this post


Link to post
Share on other sites

Absolutely!! You are NOT going crazy!! You know your body!! If your experiencing something and they cannot figure out why then it does not mean it is in your head! It is something but they just cannot put their finger on it!! Good luck!! I hope you find the answer !!! Huggzz!! 

Share this post


Link to post
Share on other sites

ARGH!  Just got the call from the GI to schedule my appointment... August 1st, I have to wait that long when I can barely eat anything?  NO FAIR!  I'm tired of not being able to eat without feeling sick... and I did actually vomit a bit yesterday!  SOMEONE HELP ME PLEASE!

 

I did get on the wait list for something sooner, but I doubt anything will happen.

Share this post


Link to post
Share on other sites
Ads by Google:


I know you had a baby not long ago. Could some of this be from hormones? They took about 6-7 months for me to get back to normal - I wasn't breast feeding. I think it takes a few months after you stop breast feeding. Just one more thing to think about?

Share this post


Link to post
Share on other sites

I asked my OB about it at my six-week pp appt, and he says no, which is why he directed me to my PCP in the first place... and they thought originally it could be gallstones because when they pressed on my gb I lept off the bed... Radiology showed nothing though... Wish it were as simple as hormones..

 

Edit:  Miracle of Miracles!  The wait list was worth it!!!! I got an appointment sooner!  Tomorrow at 1:45 US MST!!!!!!!!!! SOOOOOOOOOO Happy!

Share this post


Link to post
Share on other sites

*Sigh*  Here's what happened today:

Doc listened to my story.

Doc says, 'Well lets get you to the lab check your liver panel again.' (I'd recently had elevated enzymes...)

Doc says, 'Lets schedule you for an EGD and a colonoscopy'

I schedule appointments, get my labs done (which by the way, I had a HORRID phlebotomist or however you spell it...) and go home...

 

So basically, I know nothing more than what I did when I went in today... if the other tests show nothing, I'm going to be livid!!!!

Share this post


Link to post
Share on other sites

Okay, well, I had my colonoscopy/endoscopy on Tuesday along with a CT scan and blood draws...  (And the CT scan I had the IV done three times cause my veins kept rolling away!) Anyway, SO FAR this is what I know.

My colon/EGD turned up okay, however they did do some biopsies. Only noteworthy thing on the biopsies from what the report says is I have a 'mild case of chronic esophagitis'.
CT showed a bit of my liver being 'thick'.
Blood tests still show elevated enzymes, and disaccharide tissue testing shows maltase, sucrase, palatinase are all abnormally high.

 

Still waiting for doctor to review results and decide what that means and what he'll do.

Share this post


Link to post
Share on other sites


Ads by Google:


lol @ veins rolling away, I average about 4 needle sticks for every one that goes in and I have blood drawn every second week.. it gets old pretty fast.

Share this post


Link to post
Share on other sites

Good Morning!

Sliding into this thread late...

Just wanted to say hang in there....you already know gluten is an issue...just because docs don't run the right tests at the right time does not mean you are not celiac or at least NCGS.

Curious if your elevated liver enzmes have decreased during your time gluten-free. Mine took about a year gluten-free to return to normal levels.

Also....as you go through this process....as your doc runs more test that show abnormal results....unless you have previous results for comparison the information can be very scary...if you aren't make sure you get written/electronic copies of every test....so that you can know the exact numbers...not just what your doctor and his staff share with you.

Hang in there :)

Share this post


Link to post
Share on other sites

Absolutely!! Hang in there!! I wish you all the luck!! I know it is hard looking for a diag. But ya gotta do it!!! You may be Celiac or sensitive or what ever to Gluten, but you may have some other stuff going on! Just try your hardest to do what ya gotta do sweetie!! Huggs and good luck...

Share this post


Link to post
Share on other sites

Oh how I can relate to the rolling veins!  I have to go in for an Endoscopy and Colonoscopy and am dreading the prep for it.  I think I'm gonna have a miserable 48 hours.  I also have elevated liver enzymes.  But I am overweight and from what I have read, most people who are overweight do have a fatty liver and that can cause elevated enzymes.

 

Gluten isn't my problem but I do have multiple food intolerances.  Yesterday was especially frustrating because just before I went to bed I became sick to my stomach.  No clue what could have caused that because I ate foods that I normally can easily digest and nothing was suspect.  I did wake up a few hours after I'd finally gotten to sleep (because I was so uncomfortable) with that icky taste in my mouth that indicated that something had come up while sleeping and I likely swallowed it.  So yeah.  Frustrating.

 

At least now I am good most of the time.  Turns out that I can't have things like mint, tarragon, lovage, thyme, cloves, chicken, fish and shellfish.  So all those times that I thought I was eating a safe meal for my tummy by eating chicken soup with rice, I wasn't.

Share this post


Link to post
Share on other sites

Good Morning!

Sliding into this thread late...

Just wanted to say hang in there....you already know gluten is an issue...just because docs don't run the right tests at the right time does not mean you are not celiac or at least NCGS.

Curious if your elevated liver enzmes have decreased during your time gluten-free. Mine took about a year gluten-free to return to normal levels.

Also....as you go through this process....as your doc runs more test that show abnormal results....unless you have previous results for comparison the information can be very scary...if you aren't make sure you get written/electronic copies of every test....so that you can know the exact numbers...not just what your doctor and his staff share with you.

Hang in there :)

No, liver enzymes being elevated is a new thing, as of 3 months ago.  They thought it was cause I was at risk for pre-eclampsia, but I had my baby right after I had the first enzyme test done, and 3 months later, I still have enzymes high.  And yeah, I do have copies of all my results.  All my labs get put online on my patient portal and testing too, as long as its done through this hospital group.  So that's actually how I already know my results, my doc just hasn't called to tell me what his diagnosis is.

 

 

Oh how I can relate to the rolling veins!  I have to go in for an Endoscopy and Colonoscopy and am dreading the prep for it.  I think I'm gonna have a miserable 48 hours.  I also have elevated liver enzymes.  But I am overweight and from what I have read, most people who are overweight do have a fatty liver and that can cause elevated enzymes.

 

Gluten isn't my problem but I do have multiple food intolerances.  Yesterday was especially frustrating because just before I went to bed I became sick to my stomach.  No clue what could have caused that because I ate foods that I normally can easily digest and nothing was suspect.  I did wake up a few hours after I'd finally gotten to sleep (because I was so uncomfortable) with that icky taste in my mouth that indicated that something had come up while sleeping and I likely swallowed it.  So yeah.  Frustrating.

 

At least now I am good most of the time.  Turns out that I can't have things like mint, tarragon, lovage, thyme, cloves, chicken, fish and shellfish.  So all those times that I thought I was eating a safe meal for my tummy by eating chicken soup with rice, I wasn't.

 

I'm only slightly overweight, but that's mostly cause of pregnancy, I'm still working off that weight, and its fading fast since I can't eat anything.  And good luck with the Colon/Endo prep. Its a beast!  (Though gotta say, the procedure itself was a piece of cake by contrast).  However, as for what you can't eat, that's awful!  I discovered a couple years ago, rosemary does the same thing to my mouth gluten does!  (It cracks the corners of my lips)  And it also makes my throat constrict.  Which means a lot of italian food is ruled out unless I make it myself.  I also think I have a problem with corn, plus I'm fairly certain dairy is giving me hell.  Obviously though there is something more since I'm still not well, and frankly, I cannot eat without being nauseated or achy.

 

lol @ veins rolling away, I average about 4 needle sticks for every one that goes in and I have blood drawn every second week.. it gets old pretty fast.

What the heck are you going in that often for?

 

 

Meanwhile, I think I might call my doctor's office because this is getting absolutely ridiculous, I NEED to eat something more!  But physically my body is unable too, and now I'm tired, weak, sore, braindead... I'm pretty sure soon I'll be lucky to remember my own name!

Share this post


Link to post
Share on other sites

 

What the heck are you going in that often for?

 

 

 

 

My doctor and I are trying to find a cure to Kimura's disease.. :) So every two to four weeks we try something new and compare my bloods to how they were before the test. You need to do even more tests that often if you are on powerful drugs to make sure your kidneys don't crash, although I haven't tested drugs that strong yet, I will be soon. These two weeks I'm doing before and after of 3 million units per day of Nytastin (anti candida), next test after that is Ketotifen. If we see a real improvement in the lab results then I use it longer term, if not, it goes to the rubbish. The only things that have passed the test so far are Zyrtec and Loratadine. But I'll give you the tip now (3 days in) that Nystatin is looking good to stay long term

Share this post


Link to post
Share on other sites

My doctor and I are trying to find a cure to Kimura's disease.. :) So every two to four weeks we try something new and compare my bloods to how they were before the test. You need to do even more tests that often if you are on powerful drugs to make sure your kidneys don't crash, although I haven't tested drugs that strong yet, I will be soon. These two weeks I'm doing before and after of 3 million units per day of Nytastin (anti candida), next test after that is Ketotifen. If we see a real improvement in the lab results then I use it longer term, if not, it goes to the rubbish. The only things that have passed the test so far are Zyrtec and Loratadine. But I'll give you the tip now (3 days in) that Nystatin is looking good to stay long term

 

 

What's Kimura's disease?  And holy cow, that's a lot of Nystatin!   My son has to take that for his thrush!  Can't imagine 3 million units a day!  Must be expensive!  I hope it all goes well for you!

Share this post


Link to post
Share on other sites

Phone cord... Why oh why did I forget you?  Rather, why did I forget to charge my phone last night!  I hope and pray doc calls once my phone is plugged in... And pretty much the instant its plugged in.  If not... that's it.  I'm calling!  I AM TIRED OF WAITING!

Share this post


Link to post
Share on other sites

What's Kimura's disease?  And holy cow, that's a lot of Nystatin!   My son has to take that for his thrush!  Can't imagine 3 million units a day!  Must be expensive!  I hope it all goes well for you!

 

Indeed what is Kimura's disease.. You could ask that to ten thousand doctors and I doubt more than one would know what it is and even the one that knew what it was would have no idea what it is... lol. The actual answer is, not a single qualified person on this planet has a clue what it is.. unfortunately.

 

Of course I'm 100% sure it's related to leaky gut as the blood work with high IgE and Eosinophilia is just too similar. If you asked me what is Kimura's disease today. I would tell you this..

 

Kimura's disease is an inflammatory benign condition that mimics several malignant conditions. The Kimura tumour itself is a lymph node or gland that has been "enhanced" by some ancient human genetic ability to help filter excessive amounts of Eosinophils and reactive cells in the blood, it's sponge like filled with pockets of Eosinophils and other broken down immune cells, surrounded with vascular structures, all this becomes more enhanced and more vascular as the years go by. The surrounding unmodified lymph nodes are enlarged to cope with the eventual drainage which happens daily once you are up and moving. High IgE levels correlate exactly to the high eosinophil level in the blood (less IgE is less eosinophils). It's a hypersensitivity towards TH2 immunity caused by a bacterial / fungal imbalance to "something" or you should probably say to "almost everything" ie.. it is leaky gut + a enhanced tumour/node + an immune system shift. That's from my perspective having it and having read every research paper about it. Although my version is quite a bit different to the papers :).

 

3 million units a day of Nystain is about $22 per week, that's ok because I'm only taking it for two weeks as a test. It's giving me a little bit of a headache but not so bad. I actually found 4 other people with Kimura's disease in the world so far and talked to them online, very interesting!. I've read more or less every published paper about it and talking to other people with it still blew my mind with how similar their stories are with long diagnosis times excessive testing and thinking they had a terminal cancer for the entire time it took to diagnose (it averages 8 years for Kimura's diagnosis). In the end it's pretty much a terminal disease anyway although a very slow one.

 

The good news is it's been cured ONCE and that was with a single injection of IVIg, which caused an immune system shift back towards TH1, unfortunately IVIg is $15,000 a shot and due to the rarity of cases and not knowing if it'll work on other people it hasn't been tried again yet.

 

You can get a bit of a laugh out of it though, I go to so many doctors and they all get a verrrrrrrrrry confused look on their face. I was supposed to have a ultrasound guided biopsy on my neck last week because I went to a new doctor and the imaging guy got so freaked out after looking on the ultrasound he wouldn't do it and sent me home.. This kind of thing happens all the time. It _looks_ really dodgy on the scans but what the doctors can't see and don't know is that sometimes it's almost gone, other days it's 10 times the size it was when I saw them. The week after it maybe small again... Even I don't know how it will be on an particular day. But I do know it's very reactive (to an unknown stimulus, that I and no one else have ever been able to pinpoint) and NOT a solid mass of dodgyness. All my 4 fellow sufferers say the same yet that is never mentioned in medical papers about it. Because the doctors that write the papers only see the person one week here, one week there.. and write the paper, they aren't in the mirror seeing what is what every day :).

Share this post


Link to post
Share on other sites

Hassled my doc on Thursday afternoon... They didn't have the results from the hospital yet, so they said that they'd hassle the hospital for them, and then get back to me.  Granted they really only had one business day between then and now (Friday) but STILL I'm frickin annoyed!  If I don't get news today, I'm seriously contemplating checking myself into the hospital!  I've only been able to eat at MOST one meal a day!

Share this post


Link to post
Share on other sites


Ads by Google:


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Who's Online   11 Members, 0 Anonymous, 462 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Jefferson Adams
    Celiac.com 06/23/2018 - If you’re looking for a great gluten-free Mexican-style favorite that is sure to be a big hit at dinner or at your next potluck, try these green chili enchiladas with roasted cauliflower. The recipe calls for chicken, but they are just as delicious when made vegetarian using just the roasted cauliflower. Either way, these enchiladas will disappear fast. Roasted cauliflower gives these green chili chicken enchiladas a deep, smokey flavor that diners are sure to love.
    Ingredients:
    2 cans gluten-free green chili enchilada sauce (I use Hatch brand) 1 small head cauliflower, roasted and chopped 6 ounces chicken meat, browned ½ cup cotija cheese, crumbled ½ cup queso fresco, diced 1 medium onion, diced ⅓ cup green onions, minced ¼ cup radishes, sliced 1 tablespoon cooking oil 1 cup chopped cabbage, for serving ½ cup sliced cherry or grape tomatoes, for serving ¼ cup cilantro, chopped 1 dozen fresh corn tortillas  ⅔ cup oil, for softening tortillas 1 large avocado, cut into small chunks Note: For a tasty vegetarian version, just omit the chicken, double the roasted cauliflower, and prepare according to directions.
    Directions:
    Heat 1 tablespoon oil in a cast iron or ovenproof pan until hot.
    Add chicken and brown lightly on both sides. 
    Remove chicken to paper towels to cool.
     
    Cut cauliflower into small pieces and place in the oiled pan.
    Roast in oven at 350F until browned on both sides.
    Remove from the oven when tender. 
    Allow roasted cauliflower to cool.
    Chop cauliflower, or break into small pieces and set aside.
    Chop cooled chicken and set aside.
    Heat 1 inch of cooking oil in a small frying pan.
    When oil is hot, use a spatula to submerge a tortilla in the oil and leave only long enough to soften, about 10 seconds or so. 
    Remove soft tortilla to a paper towel and repeat with remaining tortillas.
    Pour enough enchilada sauce to coat the bottom of a large casserole pan.
    Dunk a tortilla into the sauce and cover both sides. Add more sauce as needed.
    Fill each tortilla with bits of chicken, cauliflower, onion, and queso fresco, and roll into shape.
    When pan is full of rolled enchiladas, top with remaining sauce.
    Cook at 350F until sauce bubbles.
    Remove and top with fresh cotija cheese and scallions.
    Serve with rice, beans, and cabbage, and garnish with avocado, cilantro, and sliced grape tomatoes.

     

    Roxanne Bracknell
    Celiac.com 06/22/2018 - The rise of food allergies means that many people are avoiding gluten in recent times. In fact, the number of Americans who have stopped eating gluten has tripled in eight years between 2009 and 2017.
    Whatever your rationale for avoiding gluten, whether its celiac disease, a sensitivity to the protein, or any other reason, it can be really hard to find suitable places to eat out. When you’re on holiday in a new and unknown environment, this can be near impossible. As awareness of celiac disease grows around the world, however, more and more cities are opening their doors to gluten-free lifestyles, none more so than the 10 locations on the list below.
    Perhaps unsurprisingly, the U.S is a hotbed of gluten-free options, with four cities making the top 10, as well as the Hawaiian island of Maui. Chicago, in particular, is a real haven of gluten-free fare, with 240 coeliac-safe eateries throughout this huge city. The super hip city of Portland also ranks highly on this list, with the capital of counterculture rich in gluten-free cuisine, with San Francisco and Denver also included. Outside of the states, several prominent European capitals also rank very highly on the list, including Prague, the picturesque and historic capital of the Czech Republic, which boasts the best-reviewed restaurants on this list.
    The Irish capital of Dublin, meanwhile, has the most gluten-free establishments, with a huge 330 to choose from, while Amsterdam and Barcelona also feature prominently thanks to their variety of top-notch gluten-free fodder.
    Finally, a special mention must go to Auckland, the sole representative of Australasia in this list, with the largest city in New Zealand rounding out the top 10 thanks to its 180 coeliacsafe eateries.
    The full top ten gluten-free cities are shown in the graphic below:
     

    Jefferson Adams
    Celiac.com 06/21/2018 - Would you buy a house advertised as ‘gluten-free’? Yes, there really is such a house for sale. 
    It seems a Phoenix realtor Mike D’Elena is hoping that his trendy claim will catch the eye of a buyer hungry to avoid gluten, or, at least one with a sense of humor. D’Elena said he crafted the ads as a way to “be funny and to draw attention.” The idea, D’Elena said, is to “make it memorable.” 
    Though D’Elena’s marketing seeks to capitalizes on the gluten-free trend, he knows Celiac disease is a serious health issue for some people. “[W]e’re not here to offend anybody….this is just something we're just trying to do to draw attention and do what's best for our clients," he said. 
    Still, the signs seem to be working. D'elena had fielded six offers within a few days of listing the west Phoenix home.
    "Buying can sometimes be the most stressful thing you do in your entire life so why not have some fun with it," he said. 
    What do you think? Clever? Funny?
    Read more at Arizonafamily.com.

    Advertising Banner-Ads
    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au

  • Forum Statistics

    • Total Topics
      110,276
    • Total Posts
      949,864
  • Member Statistics

    • Total Members
      77,897
    • Most Online
      3,093

    Newest Member
    Lilyobrien
    Joined
  • Popular Now

  • Topics

  • Posts

    • Aya, GFinDC has given you good advice.  Watch your CARBS they ferment and can cause bloating. This can be more pronounced after starting PPIs in some people because you have temporarily lowered your stomach acid which can make things worse for some people.  It is called Acid Rebound when people try to stop PPIs and why (at least) for short period of a couple weeks to a month your body begins to produce it's own stomach acid again.. ..things seem to get much worse. Here is a research link about it entitled "Gastric hypochlorhydria (low stomach acid) is associated with an exacerbation of dyspeptic symptoms in female patients" Dyspectic (dyspepsia) is the medical term for indigestion commonly known as acid reflux/bloating etc. https://link.springer.com/article/10.1007%2Fs00535-012-0634-8 In fact if stomach acid was not the cause your heartburn  and instead say from stress then taking PPIs can make it worse. See this fox news article from 5+ years ago that explains it well. http://www.foxnews.com/health/2012/11/13/gerd-or-nerd-new-type-acid-reflux-doesnt-respond-to-drugs.html quoting from the article "It used to be thought that all GERD was the same—you give patients PPIs and they'll all respond," says Prateek Sharma, a gastroenterologist at the University of Kansas School of Medicine. "But we're finding that a subset of these patients don't have acid as a cause of their symptoms." and they note this in their article on NERD not GERD. quoting again. "Another guess is psychological stress. A 2004 study of 60 patients conducted at the University of California, Los Angeles, found that those with severe, sustained stress in the previous six months were more likely to have heartburn symptoms during the next four months." the standard treatment for acid reflux is to take PPIs and that is troubling for many who start them and cant' get off of them. they actually note this fact. quoting again. "The ones we worry about are the ones who don't respond to standard therapy," he says. "Then we have to figure out why they don't respond." and might actually be making thing worse for many people. quoting again. Aya read the whole article and links provided in this thread when you get  chance. "One 2004 study cited a 46 percent increase in GERD-related visits to primary-care physicians over a three-year period alone." sadly if they had just tested your stomach acid levels before putting you on PPIs many of your acid reflux symptom's might of have been avoided. they are now beginning to realize PPI's don't work for everybody and can make it (heartburn) worse in many patients. quoting again. "Gastrointestinal experts now estimate that 50 percent to 70 percent of GERD patients actually have NERD, and studies show they are more likely to be female—and younger and thinner—than typical acid-reflux sufferers. They are also about 20 percent to 30 percent less likely to get relief from acid-blocking drugs. But their episodes of heartburn are just as frequent, just as severe and just as disruptive of their quality of life, studies show." Ground braking research really but we have a long memory when it comes to treatment regimens.  And it will take a while for the medical field to catch up to this new research. even though this new research recognizes this is real phenomena doctor's are stumped about how to treat it. quoting again. "New research suggests that in many people, heartburn may be caused by something other than acid reflux. But gastroenterologists are often stumped as to what it is and how to treat it." Because they think it is too high to  begin with it doesn't fit their paradigm to think stress or low stomach acid could really be the trigger and never test your stomach acid before beginning you on PPIs. If you were tested you would of remembered because it traditionally involved swallowing a pill retrieved with  string know as Heidelberg Gastric acid test or similar test like the EpH test where a thin tube is inserted through your nose for 24 hours. here is a medline article about the esophageal pH test. https://medlineplus.gov/ency/article/003401.htm because it makes or effects our gag reflex most people feel uncomfortable doing it. so this step (test) is typically bypassed. . . .and the real pH of your stomach is never tested/measured. But we know it is low stomach acid (being misdiagnosed I think) really because we have studied this phenom before see early link posted  here again for convenience sake entitled "Gastric hypochlorhydria (Low Stomach Acid) is associated with an exacerbation of dyspeptic symptoms in . . . patients" https://link.springer.com/article/10.1007%2Fs00535-012-0634-8 the article focuses on the results for women (I am/was not sure (can't remember) if you are women or not but men were also studied in this research. I hope this is helpful. ***this is not medical advice but I have found often when your stomach acid is truly NOT high enough is when we have most of our/your GI problems. I just try and encourage others to get tested. . . because if you don't test you'll never know. We have the endoscopy test for many of our other GI problems we also need to test our pH as well to rule out if is contributing to our other GI problems. ***this is not medical advice but I hope it is helpful. ******Maybe someone else can answer this??? Can you do pH testing with an Endoscopy and if so why is not typically done?? when an Endoscopy is performed thus killing two birds (proverbially with one stone (test). 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,  
    • Yeah you have to eat it til they are done with all the testing, backward part of this disease is the dia.

      There are 100s of symptoms with this disease, you probably have a few you have considered "Normal" for years, and after a year or so you will like a new you.

      Go ahead and read over the newbie 101 thread for now and prehaps start cleaning out the cabinets, tossing the CCed condiment jars, scratched pans, and getting some new ones.
      https://www.celiac.com/forums/topic/91878-newbie-info-101/

      A whole foods diet starting off is best, avoiding dairy, oats, for awhile, but I do have a list of gluten free products I update a few times a year with a new one.
      https://www.celiac.com/forums/topic/121802-gluten-free-food-alternative-list-2018-q3/  
    • Aya, I think your PPIs are triggering your dyspepsia medical term for indigestion etc. Often when our stomach acid get's too low we will have issues with CARBS. They ferment and cause bloating. Here is a couple article/links about it. You need to get off the PPIs if at all possible.  Try taking a H2 blocker for two weeks and then stepping off it two weeks between reduction in dosages all the while watching your trigger foods. Here is a link about "Gastric hypochlorhydria (low stomach acid) is associated with an exacerbation of dyspeptic symptoms in female patients" https://link.springer.com/article/10.1007%2Fs00535-012-0634-8 taking betaineHCL can also help your digestion if your stomach acid is already too low from taking lansoprazol. see this topic in the pharmaceutical journal about it. https://www.pharmaceutical-journal.com/learning/learning-article/question-from-practice-management-of-hypochlorhydria/11120379.article?firstPass=false as to whether you have Celiac disease or not . ..you might not yet but if you keep taking PPIs you might develop it if you keep taking them for years and years. PPI's increase your risk of developing celiac disease in the future. that is over 4 years old that studied this topic of PPIs use and subsequent Celiac disease diagnosis. https://www.celiac.com/articles.html/celiac-disease-gluten-intolerance-research/do-proton-pump-inhibitors-increase-risk-of-celiac-disease-r2860/ they (the researchers) concluded  quoting "The data clearly show that patients who use anti-secretory medications are at much greater risk for developing celiac disease following the use of these medicines. The fact that this connection persisted even after the team excluded prescriptions for anti-secretory medicines in the year preceding the celiac disease diagnosis suggests a causal relationship." and why this is novel research we didn't know why this was so too recently. see this article as reported by Jefferson Adams on celiacdotcom.  It is good research. https://www.celiac.com/articles.html/celiac-disease-gluten-intolerance-research/could-drinking-baking-soda-fight-celiac-and-other-autoimmune-diseases-r4479/ I am also including the medical news today article link on this topic because I think it summarizes these findings well. https://www.medicalnewstoday.com/articles/321624.php the articles about about what controls (switches on) inflammation (autoimmune reactions) in the body. we have microvilli (not villi) that line our organs (especially  the spleen) that alarm our body when proteins are in the body and not in the GI tract. the spleen is critical is here because it acts like a general of sorts directing our immune system and when gluten or other proteins tricks it --- it attacks our body (villi) by mistake. And this new research explains why this happens. quoting from the the summary on celiacdotcom ( again I think the MNT article) goes into more details. " A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed." to continue quoting "The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response." Which explains perfectly how PPI's could cause someone to develop Celiac disease because it lowers our stomach acid.  And this study points out how raising our pH (lowering the pH) cause the spleen to settle down and stop attacking the bodies own organs (villi) in the case of Celiacs'. And it 's not just the Villi the body attacks they note it happens in other organs too when the "general" the spleen gets confused the whole body suffers inflammation. quoting again from the article Jefferson Adams "That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists. In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood." so getting off the PPI by taking BetaineHCL or if you can believe this research baking soda to raise your stomach acid to natural healthy levels of a pH of 3.0 or less should help your indigestion and help control you GI inflammation from too low a stomach acid. you can have this tested by doing an Esophageal pH Test or just take betaineHCL and go low CARB and try the Baking Soda in the meantime to see if it helps your indigestion (if it is going to be a while before you can see the doctor again.) https://www.healthline.com/health/esophageal-ph-monitoring If it is truly low stomach acid (from taking PPI's) and too many CARBS in your diet then taken BetaineHCL will improve your digestion.  Be sure to always take BetaineHCL wtih food and plenty of water.  Water activates the stomach acid and the food dilutes the Stomach acid to ensure you don't get too much. If you get a "warm sensation" in your abdomen it is working. ******this is not medical advice but I hope this is helpful. I had a similar problem with my low stomach acid being misdiagnosed. Sorry the explanation is so long but you got a lot going on inside.. . and it takes some time to try and explain it. 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the Grace of God,
    • The news bot in on crack again. VERY messed up....celiac site telling us to use barley for weight loss.....YEP will work as we will be married to the porcelain god for a night or two.
  • Blog Entries

  • Upcoming Events