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Nikkster

Could it be Celiac Disease?

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Hi there,

I'm 49 years old and have always been fairly healthy apart forma few back issues.  However, for the past year I have been struggling with crippling joint pain in my hips and shoulders.  After months working with a physio and no improvement, I was finally referred to a rheumatologist and tested for rheumatoid arthritis but all tests have so far come back negative. 

On and off I've also been suffering with stomach issues, roiling nauseous gurgling stomach (almost like a hangover) and feeling drained and ill by 4pm in the afternoon.  While googling my stomach symptoms I came across celiac diseas and discovered that many people suffer also chronic joint pain.    Now I'm putting the pieces together and wondering if gluten could be causing all my pain.  I'll be seeing my doctor in 3 weeks and in the meantime should I eliminate gluten from my diet to see if that alleviates my smptoms or would that prevent me from getting a positive result for celiac disease ?  

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Do not eliminate gluten until all celiac related testing is done. Just keep to your usual diet making sure to eat at least a couple slices of bread worth of gluten daily.  I was thought to have RA for a time but it did turn out to be gluten. Within a few months gluten free my joint pain was a thing of the past...at least till age caught up with me. You may want to call your doctors office and speak with a nurse. have the nurse ask the doctor to either call in or let you pick up a lab slip. that way you will have the results of the celiac panel at your visit.

 

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7 minutes ago, ravenwoodglass said:

Do not eliminate gluten until all celiac related testing is done. Just keep to your usual diet making sure to eat at least a couple slices of bread worth of gluten daily.  I was thought to have RA for a time but it did turn out to be gluten. Within a few months gluten free my joint pain was a thing of the past...at least till age caught up with me. You may want to call your doctors office and speak with a nurse. have the nurse ask the doctor to either call in or let you pick up a lab slip. that way you will have the results of the celiac panel at your visit.

 

Thanks  so much for your response ravenwoodglass - I do have a slip to get bloods done before my visit but I'm guessing he is not testing for celiac diease.  He has requested FBC and diff, electrolytes, LFT's, LDH, ESR - Erythrocyte Sedimentation rte, C-Reactive Protein.  What would be the test for Celiac Diesase?

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tTG-IgA

Tissue Transglutaminase Immunoglobulin A

Self

The enzyme TTG deamidates gliadin (a broken-down component of gluten). In reaction to the presence of TTG, the antibody immunoglobulin A (IgA) is produced. Raised IgA antibodies indicate short-term immune response, indicating ingestion of gluten 2-4 weeks preceding the test.

 

Not 100% specific: there are other causes of a positive test, including diabetes, heart failure, Crohn’s and others. Also, people who have celiac disease can get a negative result with this test. Machine-read.

tTG-IgG

Tissue Transglutaminase Immunoglobulin G

Self

In reaction to TTG, IgG is produced. Raised IgG antibodies demonstrate long-term immune response, indicating ingestion of gluten from 3-6 months, sometimes up to a year, preceding test.

 

Valuable in diagnosing Celiac in patients with selective IgA deficiency.

DGP-IgG

 

Deamidated Gliadin Peptide

Immunoglobulin G

 

Newer, excellent test that detects an immune response to a very specific fragment of the gluten molecule (gliadin peptide).

 

If both DGP are high, celiac disease almost certain. Accurate for detecting gut damage of celiac disease, so good it is likely to make endoscopy redundant. Does not replace the IgG-gliadin test.

DGP-IgA

Deamidated Gliadin Peptide

Immunoglobulin A

 

(ELISA) measures antibodies directed against deamidated Gliadin peptides (DGP) in human serum or plasma.

AGA-IgG

Anti-Gliadin Antibody Immunoglobulin G

Anti-self

(Older gliadin test.) The antibody immunoglobulin G (IgG) is produced in response to gliadin. Raised IgG antibodies demonstrate long-term immune response, indicating ingestion of gluten from three to six months, sometimes up to a year, preceding the test.

 

Not specific & sensitive for Celiac, but accurate as an inexpensive test for evidence of a gluten reaction

AGA-IgA

Antigliadin Antibody Immunoglobulin A

Anti-self

The antibody immunoglobulin A (IgA) is produced in response to gliadin. Raised IgA antibodies indicate short-term immune response, indicating ingestion of gluten 2-4 weeks preceding the test.

 

Not specific & sensitive for Celiac, but accurate as an inexpensive test for evidence of a gluten reaction

Total IgA

Immunoglobulin A

Self

The celiac blood test panel includes the total serum IgA test because some people (3%) are IgA-deficient. If you have a very low total serum IgA, that can invalidate the three blood tests that rely on your IgA levels. People with celiac disease suffer from low total IgA levels about 10 to 15 times more frequently than people in the general population.

EMA IgA

Anti-endomysial antibody IgA

Self

EMA stands for antiendomysial antibodies, which are antibodies produced by the body that attack the body's own tissue. When the EMA-IgA is positive, the patient almost certainly has celiac disease. However, the test also can produce false negative results in patients with celiac disease but only partial villous atrophy.

 

Highly specific (>95%), and >90% sensitive. The EMA antibodies correlate to degree of villous atrophy. Observer-dependent.

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11 minutes ago, plumbago said:

tTG-IgA

 

Tissue Transglutaminase Immunoglobulin A

 

Self

 

The enzyme TTG deamidates gliadin (a broken-down component of gluten). In reaction to the presence of TTG, the antibody immunoglobulin A (IgA) is produced. Raised IgA antibodies indicate short-term immune response, indicating ingestion of gluten 2-4 weeks preceding the test.

 

 

 

Not 100% specific: there are other causes of a positive test, including diabetes, heart failure, Crohn’s and others. Also, people who have celiac disease can get a negative result with this test. Machine-read.

 

tTG-IgG

 

Tissue Transglutaminase Immunoglobulin G

 

Self

 

In reaction to TTG, IgG is produced. Raised IgG antibodies demonstrate long-term immune response, indicating ingestion of gluten from 3-6 months, sometimes up to a year, preceding test.

 

 

 

Valuable in diagnosing Celiac in patients with selective IgA deficiency.

 

DGP-IgG

 

 

 

Deamidated Gliadin Peptide

 

Immunoglobulin G

 

 

 

Newer, excellent test that detects an immune response to a very specific fragment of the gluten molecule (gliadin peptide).

 

 

 

If both DGP are high, celiac disease almost certain. Accurate for detecting gut damage of celiac disease, so good it is likely to make endoscopy redundant. Does not replace the IgG-gliadin test.

 

DGP-IgA

 

Deamidated Gliadin Peptide

 

Immunoglobulin A

 

 

 

(ELISA) measures antibodies directed against deamidated Gliadin peptides (DGP) in human serum or plasma.

 

AGA-IgG

 

Anti-Gliadin Antibody Immunoglobulin G

 

Anti-self

 

(Older gliadin test.) The antibody immunoglobulin G (IgG) is produced in response to gliadin. Raised IgG antibodies demonstrate long-term immune response, indicating ingestion of gluten from three to six months, sometimes up to a year, preceding the test.

 

 

 

Not specific & sensitive for Celiac, but accurate as an inexpensive test for evidence of a gluten reaction

 

AGA-IgA

 

Antigliadin Antibody Immunoglobulin A

 

Anti-self

 

The antibody immunoglobulin A (IgA) is produced in response to gliadin. Raised IgA antibodies indicate short-term immune response, indicating ingestion of gluten 2-4 weeks preceding the test.

 

 

 

Not specific & sensitive for Celiac, but accurate as an inexpensive test for evidence of a gluten reaction

 

Total IgA

 

Immunoglobulin A

 

Self

 

The celiac blood test panel includes the total serum IgA test because some people (3%) are IgA-deficient. If you have a very low total serum IgA, that can invalidate the three blood tests that rely on your IgA levels. People with celiac disease suffer from low total IgA levels about 10 to 15 times more frequently than people in the general population.

 

EMA IgA

 

Anti-endomysial antibody IgA

 

Self

 

EMA stands for antiendomysial antibodies, which are antibodies produced by the body that attack the body's own tissue. When the EMA-IgA is positive, the patient almost certainly has celiac disease. However, the test also can produce false negative results in patients with celiac disease but only partial villous atrophy.

 

 

 

Highly specific (>95%), and >90% sensitive. The EMA antibodies correlate to degree of villous atrophy. Observer-dependent.

 

Thankyou!

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Hi Nikkster,

They often call the celiac testing a celiac panel.  There is also a celiac screening test they sometimes do first, the ttg.  You want to get the full celiac panel if possible.  Not everyone shows up on just the screening test.

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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.
      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.
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