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Celiac disease possibly but not tested should i?

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I'm new here, & think I may have celiac disease. why should I be tested for it and continue eating as normal, feeling like crap and constantly having many symptoms related if I could start a gluten free diet n feel better? It doesn't make sense in order to be diagnosed with it you have to keep gluten in your diet and then have biopsy? My dr doesn't think that's the issue as I'm a type 1 diabetic for 35 yrs with uncontrolled bloodsugars, gastroparesis, anemic, constart diarrhea almost everyday, and am on narcotic pain meds that Dr has decreased for last four months yet still have stomach issues. Why not just start gluten-free diet n see if it helps any?  Any one have advise please?

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8 hours ago, Alecias39 said:

I'm new here, & think I may have celiac disease. why should I be tested for it and continue eating as normal, feeling like crap and constantly having many symptoms related if I could start a gluten free diet n feel better? It doesn't make sense in order to be diagnosed with it you have to keep gluten in your diet and then have biopsy? My dr doesn't think that's the issue as I'm a type 1 diabetic for 35 yrs with uncontrolled bloodsugars, gastroparesis, anemic, constart diarrhea almost everyday, and am on narcotic pain meds that Dr has decreased for last four months yet still have stomach issues. Why not just start gluten-free diet n see if it helps any?  Any one have advise please?

You should definitely get tested!  Celiac disease is strongly linked to TD1 (about 10% of TD1’s have celiac disease).  In fact most Ped endos are recommended to screen all their TD1 patients.  You must be on a diet full of gluten in order for ANY of the celiac tests to work.  It is just ONE reason to get tested before going gluten free.  Another reason is that if your doctors know you have celiac disease, they will check for other issues like osteoporosis as celiac disease is systemic (lots of collateral damage).  For example, insurance will mostly likely approve a bone scan in a young patient if they have a celiac disease diagnosis.  A diagnosis can help get other family members tested.  Our family doctor and insurance provider  does not hesitate to order celiac tests for my kid (should be done every few years for the rest of her life!) because I have celiac disease.   Finally, a firm diagnosis can help you stay on the gluten free diet.  No eye rolling from family members about your dietary choice.  It is hard to dispute  a lab report.  

Any medical doctor can test you.  Consider a new doctor, because it sounds like your current doctor does not read any medical news often or rarely Googles.  Not a good sign!  

Learn more:




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Thanks but if I start a gluten free diet and all or most of my current symptoms get better or are not as bad as now then id rarhwr continue gluten-free diet n not test for it. Could care less if others don't believe me or it helps keep me on strict gluten-free diet cause being t1d for all my life still doesn't keep me from staying on strict diet / med regimine as it is. But knowing that any or many of my symptoms res love for better will be good enough for my own reasoning to stay gluten-free. Thanks for your advice it is appreciated n helpful for family health screeling. I just don't want to feel so disgusted by my symptoms n running to restroom not to even make it in time, or sleep in different room due to has or burprhat is constant n unbearable 75% percent of my day . Why would anyone want to keep eating gluten if it means feeling sick or worse? Maybe I'm more stubborn than I realize or should be

 Idk but any advise help words of wisdom and support is needed n appreciated, so thank you 


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58 minutes ago, Alecias39 said:


 Idk but any advise help words of wisdom and support is needed n appreciated, so thank you 


There's some good advice for newcomers to the diet here:


be careful with gluten free processed foods, they tend to be high in sugar! You may also want to consider removing dairy, at least for a time. Oh and keep a food diary to note any changes as you progress on the diet, that can prove really helpful as some change is very gradual.

best of luck and welcome :)


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Thanks I am lactose intolerant so have been keeping lactose out of my diet for most time but if I do eat food or drink I take lactose supplement. I also have chronic anemia n very low blood pressure at times cause me to pass out. I do tend to be very tired and fatigued even if just doing basic necessities like brush my hair or dressing myself. I try to watch what I eat n struggle with my blood sugars as well but I don't want to eat foods with gluten anymore in the case I do have celiac disease n want to feel close to better rather than sick or something related to it. I am stubborn n hard at hearing when told things to do or try , I'm difficult that way but am trying to do things differently n better for my health overall. I'll check out the info n links u mentioned. Have great day.

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Wheat free or die;).  The sooner you start the better you feel. All those years going to the doctor and they had no clue. What makes you think they know more than or care more than you? Follow your gut.

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One way to go gluten free without waiting and still get part of a diagnosis would be to do the  blood test today. You can sign up at an online test site today and have your blood test done today. So here's my spiel (just a customer):

You can either have a gastroenterologist order the full celiac panel plus whatever else they typically test for, or you can order your own test at a site like walkinlab.com. At walkinlab.com it's called the celiac comprehensive test and costs $298.00 (not covered by insurance). Then if any one test comes up high you can give it to your gastroenterologist so they can do an endoscopy (this would require you to stay on gluten). The blood draw is done at your nearest Labcorp. You get your results in less than a week at walkinlab.com .

The full celiac panel includes:


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I'm new to this site. Had one test come back + and just had another one done yesterday. Just wondering are Celiac able to eat bananas.

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Bananas are naturally gluten-free. Fruits do not contain gluten, nor do vegetables. Gluten is found in grain, and you won't likely find that in the produce department. Enjoy, and welcome aboard.

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23 minutes ago, Sharon Stratechuk said:

I'm new to this site. Had one test come back + and just had another one done yesterday. Just wondering are Celiac able to eat bananas.

Yes, you can eat bananas but only on Sunday.  :)  Kidding.

Peter has it right.  Most fruits, veggies and meats are naturally gluten-free.  The problem for celiacs are grains including wheat, rye, barley, and oats (only some celiacs react to oats).  Any food though can be contaminated with those grains.  An example could be a bakery that sells fruit.  The flour in the air could land/settle on the fruit.  So a simple solution is to rinse foods before eating them.

Edited by GFinDC

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8 hours ago, Sharon Stratechuk said:

I'm new to this site. Had one test come back + and just had another one done yesterday. Just wondering are Celiac able to eat bananas.

As mentioned above is true, I used to love fruit -_- I got other AI diseases and some other issues that prevent me from eating fruit but I am a freak lol. ANYWAY since your new I will link you the newbie 101 threads. I would be more concerned with hidden gluten in your old condiment filled with crumbs, your pasta strainer, cutting boards and and scratched pots in your house then say the banana you got at the store....peeled off the outside that might have been touched or handled by anything else and eaten the safe clean insides lol....banana come with their own wrapper perhaps the safest bet, funny they used to give celiac babies a mostly banana diet before they understood this disease well.


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On ‎1‎/‎17‎/‎2018 at 8:48 PM, GFinDC said:

Just wondering are Celiac able to eat bananas.

Celiac Disease is damage to the nooks and crannies in our intestines leading to malnutrition, vitamin deficiencies with all the various symptoms that make it so hard to diagnose. Then you add years of the antacids, antibiotics, Tylenol, opioids, alcohol, etc., each with their own particular side effects and damage. Now you've got a toxic environment that kills off the beneficial bacteria increasing malnutrition.

Theoretically you can eat anything except gluten. But wheat is so ubiquitous in our diet and economy there are unlimited opportunities for cross contamination. So read the label. Use common sense. If there isn't a label it doesn't have wheat so you can eat. Big Food likes to add wheat to everything because it is addictive and helps them ensure you can't eat just one. Why on earth else would Campbells Tomato Soup have wheat listed as an ingredient? Meantime your body is in distress from malnutrition so you need to be sure to replenish D3, and Iodine for starters and treat and support any other symptoms while you heal. Good nutrition without wheat is the only way to stop progression. And just like chewing paint chips made with lead is bad, so is food with wheat.


On ‎1‎/‎18‎/‎2018 at 5:23 AM, Ennis_TX said:

banana come with their own wrapper

well said, doesn't need a label.

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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.
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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.
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    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. 
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    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. 
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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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