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Conflicting Bloodwork

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A few months ago I was told by my internist that I tested positive for celiac. I had the blood test re-done last week in a GI specialty group and found out today that I was negative, "well within the norms". Proir to this I had IBS every now and then. I have diarrhea a few times a month, yet, I have a cramping feeling on my right side -- from beltline to lower pubic area every now and then...it sems to come and go and I know when I'm stressed it seems to occur more frequently. I avoid lactose as mucha as possible but will cheat once in a while and there's a 50/50 chance that I get symtoms. I seem to be gassy and my bowel movemnets sometimes seem flattened a bit when I am experiencing that cramping feeling. I was assessed with spastic colon 20 years ago. What should I do about the conflicting blood results? Is it possible that I am sensitive to certain foods or is this a stress related phenomenon. I had a colonoscopy 2 years ago and everything is fine. I turn 49 next month......I have no weight loss and all the other symptoms. Please help and advise.

Thanks!

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Get a copy of your lab results and post them here...someone will be happy to interpret, I'm sure. I would hope that your GI doc knows more about how to interpret celiac labs, but don't be too sure!

Also, do some research on what all the lab tests mean. (see www.celiac.com or

www.clanthompson.com for good reviews on the topic)

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I have some blood results regarding the conflicting bloodwork:

First Dr. found Transglutaminase 8 and Gliadin 28

A second Dr. found Transglutaminase 1.2 and Gliadin 23

The second Dr. said I was negative for celiac and the 1st Dr. said I was positive.

Please offer any help out there. Is it true that different labs use different methods of reference? Any help on these results would be appreciated.

Thanks a million!

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Is it true that different labs use different methods of reference?

Yes, that's true. Normally the Antigliadin (otherwise referred to as AGA) is usually normal < 20. If this were the case for you, then you're positive both times, yet only slightly on the 2nd... but, still positive. Now, there are two types of AGA... IGG & IGA. It might help you to find out which one.

I don't know much about the Ttg levels... sorry!

My AGA Igg level was the first to elevate... then a year later the Iga showed up positive. I believe if you're experiencing symptoms and you've got antibodies showing up, then you're seeing that your body isn't liking gluten too much. PS... in case you're wondering if it's just an allergy, an IGE antibody would show up for that.

Doctors are very protective about the celiac diagnosis, unless they can prove it 100%. In your case, they might say you're gluten intolerant (which I think is just a pre-celiac condition).

Fun stuff huh?

Gretchen

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I'm still confused! After spending considerable time reading these baords it appears that there is "Celiac Disease" and "Wheat Sensitivity or Intolerance". Are they the same. I'm 49 years old, would extensive damage occurred by now? I'm not interesyed in having the invasive endoscopy which one Dr. said is the gold standard. I have read that if biopsies are not taken in the right places the test could be negative when in fact you're positive. I have noticed that some foods cause more symptoms than others (spicy, broccoli, dairy, grainy mustards, nuts, chocolate). I would rate wheat items -- breads, pastas, etc. as being the food items that do NOT bring on symptoms. My bloodwork is in previous postings above and I'm confused as to getting a biopsy, contacting enterolabs, or just dismissing it as IBS as the 2nd Dr. suggested??? The 2nd Dr. said that each lab uses different cutoffs and comparison methods??

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Licel.

My IGA antibody was elevated, biopsy neg, no damage to the villi.

GI doc said he can't prove I don't have Celiac and can't prove I do

have celiac disease. Because my gene test was neg, I think that there are two separate

diseases (in my humble opinion), similar in symptoms, treated by

gluten-free diet. I was really sick for 2 years. I spent last summer in bed,

curled up in a fetal position. This summer I am pain free/symptom free.

Until someone proves different I have gluten sensitivity.

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Thanks for your reply.....

2 years ago I had a calcium oxalate kidney stone. On the enterolab site it said this "could" be related to malabsorption of calcium.???

I'm trying to avoid the invasive endoscopy test. Would my GI Dr. be able to do a gene test? The enterolab site seems to say that the stool test is much better than a blood test.....the more I read, the more confused, and anxious, I become.

The feedback is greatly appeciated....any response to LICEL postings would helppppp!!!

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Licel,

If you are 49 years old I would advise you to have the scope with the

biopsy and also the colonoscopy. They really aren't bad and you will get some answers to your questions.'

Yes, a GI doctor can do the gene test, they have to be sent to a special lab.

Another thing I wanted to tell you is that after my scope was finished my

doctor showed me a picture of another problem, I have Barrett's ring

around the esophagus. It is caused by the acid in the stomach splashing

up into the esophagus and must be checked every year because it can sometime lead to cancer.If I had not had this done i wouldn't have known it. Don't you

think that having the endo would help end the stress your under. When you find out the problem, you can make informed choices on how to treat it. Good luck to you..

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I'm still confused!  After spending considerable time reading these baords it appears that there is "Celiac Disease" and "Wheat Sensitivity or Intolerance".  Are they the same. 

I have read that if biopsies are not taken in the right places the test could be negative when in fact you're positive.

My bloodwork is in previous postings above and I'm confused as to getting a biopsy, contacting enterolabs, or just dismissing it as IBS as the 2nd Dr. suggested???

The 2nd Dr. said that each lab uses different cutoffs and comparison methods??

Licel,

I'll give you the Gretch's dictionary definition on the Celiac vs. Sensitivity/Intolerance. ;) ... but, I don't know if it will help.

Celiac disease & Gluten Intolerance are pretty much the same... however, celiac is where there is evidence (visually by eye and/or microscope) that there is damage to the small intestine due to a protein found in wheat, rye, barley, oats called gliadin. There are supposedly 1 in 133 that have a genetic disposition to not be able to tolerate this protein in their bodies and their immune system launches an attack via antibodies (ie: IGG, IGA). Some of the other tests that your doctor runs, like the Ttg & Ema can also check for immune response and are somehow sensitive to those who have damage.

Those of us without 100% positives any or all of these blood tests and/or haven't shown any damage with a biopsy, are sometimes told by our doctors that we don't have celiac (damage to the intestines due to an autoimmune response to gliadin). Not many tell us that however, that we're still having an immune response to gliadin (gluten intolerance / sensitivity), but we haven't suffered damage... yet. That's why most of us are here.

We're suffering the symptoms of an immune response to gliadin (the same as a celiac), but our condition hasn't fully developed yet. Some doctors don't like to see their patients go on a gluten-free diet unless they're 100% diagnosed. But, many of us don't care... we just want to feel better and be healthy and prevent what we believe would be inevitable (full-blown celiac) if we went untreated.

... and please don't accept IBS... I spoke with my (former) doctor the other day and he wanted to give me that and I have antibodies to gliadin! He admitted that's where doctor's put people that they just don't know what's causing their symptoms.

And yes, different labs have different ranges of normal, etc... but, the lab will usually tell you what they are on the results.

Good luck!

Gretchen

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I received a copy of the results in the mail today from the 2nd Dr. who said I am negative. Can anyone out there help interpret these?? I do plan for a followup visit to talk.

Transglutaminase IgG Abs 1.2 (reference range... less than 6 = negative)

Transglutaminase IgA Abs less than 1.2 (reference range..less than 4 = negative)

Gliadin IGG AB 23.9 (reference range less than 45)

Gliadin IGA AB 28.4 (reference range less than 45)...for both of these tests, the report indicates I am in normal range..asis also the case with the results above.

What about EMA...should that have been tested??

Any help or feedback would be apreciated.

Thanks!!!

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Transglutaminase IgG Abs 1.2 (reference range... less than 6 = negative)

Transglutaminase IgA Abs less than 1.2 (reference range..less than 4 = negative)

Gliadin IGG AB 23.9 (reference range less than 45)

Gliadin IGA AB 28.4 (reference range less than 45)

I am a bit confused by the reference ranges. Usually the range for Gliadin is 20 or 30 depending on the lab. I have never seen it be as high as 45. And I wish they had considered the TTG IgA Abs reference range "less than 4 = negative" for my test. I had a 9 and they said it was negative if less than 20! I guess it is the diefference in labs. Maybe my blood tests would not have been considered negative!

By other labs standards your Gliadin tests would be weak positives.

God bless,

Mariann

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so if my IGA glutaminase is 5 (with <20 negative) and my IGG gliadin is 73 (with >30 strong positive), should i be worried that my IGG was a false positive? isn't that the less reliable of the two? i'm not sure if the seeming sky-highness makes it more absurd or more definitive.

i also had a gliadin IGA at 8 units, but there was NO reference range on the test result for that test. unless it's assumed to fall under the same as the gliadin IGG.

any thoughts?

this test was done two years ago, and i had a neg. biopsy. should i get the bloodwork done again?

luckily i just made an appt with a nutritionist for next week... maybe she'll give me a better answer than "IBS!"

monica

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Monica,

so if my IGA glutaminase is 5 (with <20 negative) and my IGG gliadin is 73 (with >30 strong positive), should i be worried that my IGG was a false positive? isn't that the less reliable of the two? i'm not sure if the seeming sky-highness makes it more absurd or more definitive.

I was told my Igg @ 33 (normal < 20) was a false positive and I believed it. A year later, my Igg has elevated even more and my Iga is now a part of the story. I would have to say to listen to your body... ultimately, you know your body best. Conditions that cause your intestines to be more permeable (leaky gut) can cause your Igg to elevate. It has something to do with those gluten proteins leaking into your bloodstream and irregardless of why they're there... a gluten free diet has still been benefitial to many.

It's always good to get your blood tests re-run and I've already decided to do it regularily (when I visit my doctor).

I myself am joining the ranks of those who don't want to be full-blown celiac before treatment. You won't be alone if that's what you decide :)

Gretchen

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Going for biopsy tomorrow. I understand several biopsies will be taken. Will I get the results right after the test or sometime that day? Does the Dr. ead the slides of the biopsies or does the pathologist? Both? The test is being done in a hospital under general anesthesia. I'm anxious!!!! I hope all is well and other problems aren't found... Dr. predicts biopsies will be negative and I have IBS based on bloodwork as previously posted. We'll see.....

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Just a note for people out there to people who may have put off the biopsy like myself. The test was easy and I shouldn't have put myself through all the anxiety. I had it done in a hospital. You are put to sleep and you don't feel anything during or after. I hope the biopsy rules out celiac. Is it possible that celiac can develop later even if the biopsy of the villi is negative? I understand the pathologist reads the slides and scores the biopsies??

My gastro Dr. also recommended a pelvic catscan with contrast dye to rule out other issues including possibly even a hernia. I do get a cramping feeling and he still believes it's IBS. He advised/prescribed Librax until results are in. (PS another Dr. prescribed this and I found it helped, but this whole proces started with those initial blood tests)

My advice to all -- have the tests and avoid the worry! Peace of Mind is worth a million bucks. This board has helped tremendously.

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Is it possible that celiac can develop later even if the biopsy of the villi is negative?

YES! It is possible, especially if you are having obvious reactions to gluten.

I'm glad the endoscopy went well for you. :)

God bless,

Mariann

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As indicated....I had the biopsy completed (since my bloodwork was conflicting) in a hospiatal setting on the day after my birthday. The next day, I had a complete abdominal catscan (drinking barium solution with contrast solution pumped in intravenously during test).

GREAT NEWS!!!

All tests were negative. Stress and lactose intolerance seem to be the problem which results in spastic colon during these times. I also have some trigger foods and wheat prodicts seem to be ok.

MY ADVICE TO ALL......HAVE THE BLOODTESTS AND ENDOSCOPY DONE TO PUT ALL FEARS TO REST. I will use some gluten free foods since I was researching and trying different foods just in case.

Keep this message board going...It was a great help!!!

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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. 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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,  
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    • 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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