Like So Many Others...

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So like so many others on this forum and elsewhere, i am struggling to get diagnosed.  Not sure my story helps anyone else or if anyone can offer me any advice but I figured talking about it might help someone :)  I have been having severe digestive issues for a couple of years including heartburn (never had it before in my life) and multiple, sometimes extremely urgen tand painful trips to the john.  I complained to my regular nurse practitioner whose answer was to take omeprazole.  That kept the heartburn pretty well in check but the rest of the rumbling continued.  I basically stopped processing food in my gut.  After a year and a half of this, I got really frustrated with the medical response (basically nothing) and decided to go on an elimination diet.  Backing up just a little bit, I have always struggled with my weight but in the last 6 years I have gained 45lbs.  It has yoyo'ed up over the last two years and I have done so many things, did weight watchers, went vegetarian, ditched alcohol, went pescatarian, reduced carb intake, saw a nutritionist, saw my Dr. etc.  I increased exersize as well, I am not a couch potato, am an active person although do have a sedentary job.  I literally cannot lose weight - and people look at me like I am crazy or not 'doing it' right which is just not the case.  Besides, with as much that comes out of me, I should be a stick figure.  But, I don't lose anything.  I actually gained 5lbs when I started to exersize.  I also have an impossible time processing fiber. 


So, the elimination diet - i decided to eliminate gluten first as it was easiest for me to do.  Within a week my heartburn was completely gone and I mostly stopped the multiple runs to the bathroom daily.  I didn't have to take omeprazole any more and I started feeling better.  When I do eat gluten by mistake it takes me 3 days to recover, even just contamination effects me this way.  So, I go see my nurse again - she recommends an allergist.  I go see the allergist who says testing for wheat is useless but I should go see a Gastro-enterologist.  I go see a nurse practitioner in the GI department who orders this giant metabolic blood test and other cultures (c-diff, giardia, etc) all negative or normal.  So she orders an endoscopy.  Keep in mind I have been gluten free since May of this year and now we are like in Oct.  Get the endoscopy scheduled for end of Nov and just went through that and on the paperwork I was sent home with, the GI doctor said that he noticed mild flattening of the duodenal mucosa.  A week later get the biopsy results and they are 'unremarkable' so no diagnosis except I am normal.  The last couple of weeks have been good - knock on wood.  Nothing is totally 'normal' in my gut but I feel like I might be getting a handle on it,  I still don't process fiber properly nor do I lose weight but sometimes I think it might be getting a little better with time.  I called the GI dept and have asked them to mail me the pathology because I don't trust someone just telling me the test results are 'unremarkable' without any data to back it up.  Plus I wonder what the flat mucosa were that he visually saw.


i guess my main complaint through all of this is how unresponsive the medical community has been.  I have been through this issue with probably 8 doctors and nurse practitioners and every time they have to ask me what is wrong - they take notes and they put them in the computer and they are all in the same darn hospital - don't they even read?  The dr that did the endoscopy said I could continue taking Prilosec - if he had taken 2 minutes to either talk to me or read my file he would have known that I don't take it anymore because I went gluten free.  Right before the procedure I told him I was worried about Celiac and he said - yeah you should be because your food will cost twice as much.  Now I am annoyed beyond becuase since I have been gluten free for 6 months there is a high probability that it won't show up on testing.  I have reached a point where I don't even care if there is a diagnosis because I am not going to do a challenge - i would die I think.  Since gluten free makes the symptoms stop, and since it is the only 'cure' for celiac - I guess who cares what the 'official' diagnosis is.  Anyone else feel this way? 


Sorry this got long lol - my name is Lindsay BTW.  Look forward to being a part of this group :)        

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(Hugs) Welcome to the board.... I think you'll find more than a few people around here who were given a medical run around- it might even be the majority of of. You can include me too.

It sounds like gluten is your evil. I'm glad you were able to solve that riddle. How do you do with milk? Many of us have issues with lactose until we heal, you might be getting closer to that status after being gluten-free for so long.

I was wondering if you had your thyroid well checked recently? Some of your symptoms fit with thyroiditis too. Have the doctor check TSH (should be near a 1),free T3 and free T4 (should be in the 50-75% range of your lab's normal reference range, and TPO Ab will check for an autoimmune attack. Hashimoto's is closely linked to celiac disease so you might want to check it.

Est wishes. :)

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Thanks very much for the warm welcome - I should have mentioned that I am hypo-thyroid, have been for many years although have not ever been tested for Hashimoto's.  I will mention that to my endocrinologist for sure.  Thank you!!

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Well done being your own advocate, it sounds like you found your answer (or at least part of it). You are not alone in your frustration with the medical community (I suggest you check out gluten dude's blog online for others doctor horror stories - so that you know you are not facing this frustration alone).

The good news is, gluten free is working! Given you've gone the medical route thoroughly - I'd suggest you keep doing what you are doing, while researching and interviewing new doctors - there are a few online referral sites for doctors kwoledgeable about celiac and gluten sensitivity (for example Dr Tom O'Bryan has a referral network of docs that go thru his training). I wouldn't obsess about a formal diagnosis and focus on doing gluten free right & finding good sources of information & guidance.

Tons of great advocates who understand your issues and frustration are on Facebook & twitter - and may be a help!

Good Luck!

Ps- my weight issues were similar, I barely ate but was gaining & gaining - it wasn't fat, it was "bloat" - lots of it - lost it all gluten free (even dropped a shoe size, apparently my feet had been swelling rather than growing over the years)

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hello & welcome.

yep, many people  have been  where  you  have been & are at the present  time....you know  your body better than  anyone so  your gut instinct  is  your  best  guide....And  you are correct  it  would be a  waste of time & money  to  do  more  testing  if  you have been gluten-free...

I too,  suggest  getting  a  thyroid  panel  done most  docs  will only  do the TSH  but  scream for  total T-3, FT-3, FT4, total T-3.....also a glucose   & an A1C... ANother  would be  to  check  your  vitamin  & mineral  levels.... Iron,  B-12

D-3 , Ferritin,  potassium, calcium & so on.....

Read  up on  fodmap too,  it  will give  you insight on  other foods  that  can play havoc with our intestinal tract.....

I  also would  start  probiotics  & digestive  enzymes.....limit  dairy for  awhile......

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This is great information and support - thank you so much!  I truly appreciate it.  Not like friends and family aren't supportive - I am lucky that way, but honestly it isn't like talking with people that actually understand the issues you have - it is so hard to explain to someone who has not experienced it.  Thanks again :)

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My experience is similar but I am hypo-thyroid.  It has never been easy for me to lose weight, but I have never had a period of time where I have been unable to lose weight prior to about 2-3 years ago.  I have gained 45 lbs in the last 6 years and I cannot lose it.  Dr.'s and others look at me like I am stupid.  I have done weight watchers, ditched alcohol, went vegetarian, pescatarian, increased exersize, tried smoothies for meal replacement, saw a nutritionist - I have done everything.  I started walking again this past spring after taking winter off and i GAINED 5 lbs.  Since May I have been gluten free to deal with digestive issues.  I don't have a diagnosis but I know that eating gluten makes me sick - takes me 3 days to recover.  Over the last two years I have had severe issues with digestion, I do not process fiber properly and the gluten really makes me ill.  In all fairness, I gave up even trying to lose weight when I went gluten free 6 months ago.  I have been trying so hard and nothing works - talk about depressing.  There is nothing worse for my own mental health so I just stopped trying.  I have not lost but I also have not gained since going gluten-free.  Not sure that is significant or not but the digestive issues are about 75% gone at this point so I am hoping I can start to try again soon and it works.  I - like you - have this feeling that my body thinks I am trying to starve it and puts away as much fat as it can to compensate.  This doesn't really help you, however my feeling is that by giving my gut time to heal I somehow have some positive outlook on the prospect of being able to lose wieght in the future.  Good luck! 

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    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.
    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.
    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.
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    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. 
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    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.


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    • 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.

      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.
    • 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.
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