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Hi All,

I am new to the forum.  I have 2 children with GI issues and I myself have had IBS type symptoms most my life.   We've had blood work celiac panels run on both of my children and told they were negative with no need for genetic testing.  My dd also had an endoscopy done at Mayo Clinic in Rochester and from all those results, I see they did not do any separate biopsies for celiac.  When I talked to the nurse about it later because dd was still having symptoms, I was told that since there was no sign of inflammation or damage, they did not need to do the biospies for celiac.   Not sure what I think about that.  My gut tells me they can not see that well to know for sure, but wanted the groups advice on all of this.     OK, so my dd's GI history is MSPI as a baby, then reflux and regurgitation of foods possibly related to histamine intolerances, and also possible fructose malabsorption. She's also has constipation issues since she was a baby.   Recently diagnosed with SIBO at age 8 but since the methane gasses were higher toward the end of the breath test, doc thought it was being caused by her constipation.    Her vitamin B-12 was over 1500.   No exact number was given, just over 1500.     DD has aversion to almost all fruits and veggies.   She'll eat strawberries, green beans, some lettuce and cooked carrots.   Sometimes some applesauce or fresh apples but we are pealing the skins to make easier to digest. .  She also has texture issues but is very smart, top of her class.   Was not growing at one time around age 2, but now is growing and gaining weight but on the lower end of the curve for her age but looks healthy.    So  here are my dd's blood test results.  She was almost 7 years at the time.   Immunoglobulin A Serum =101  ( range is 33-200);

Gliadin Peptide Antibody, IgA  = 2  (range 0-19); tTG Antibody, IgA  =4  (range 0-19).      Also, my son's Celiac results were almost identical to my daughters and the same testing panel was done on him.   Both tests were completed by ARUP labs out of Salt Lake City, UT.      

   Any advise on these test results would be appreciated.   Specific questions being do you all think ARUP's panel is complete or a good one.  Do those blood test results look questionable at all for possible celiac disease or do they looked strongly negative.   Just trying to put this to rest as FP doc keeps telling us to avoid the wheat, but don't want to take her off it, if more testing should be completed.      

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First thought.

Have you been properly tested for celiac disease?

Other thoughts:

It is difficult sometimes kids take longer to test positive and do agree that samples should have been taken and sent to the lab during the endoscopy...sadly not many doctors want to move forward with celiac diagnosis once blood is negative.

Did either child have a DGP-IgG?

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Thanks Gottaski,  No, I have not been tested myself for Celiac.    I've never had an endoscopy.  Years ago I had a sigmoidoscopy, BE series and upper GI Barium study but that was it. I was told all was fine with these tests and  I was told I had IBS with no advice. Just avoid gassy foods.       Neither kids have had the DGP-IgG test done.   Do you know which lab runs that test in the US.   All the hospitals in our city use ARUP out of Salt Lake City.    Not sure if ARUP does that test.    It seems like the GI docs in our town don't do celiac biospies very often.  I've just heard stories of people having endoscopies and no biopsies for celiac being done.    That's why we went to Mayo with my daughter.  They are supposed to be the best and then they didn't even do the biopsies.     What are your thoughts on the results I listed??   I don't even know what the Immuglobulin A test is for?   Is that to show if a person if IGG or IGA deficient???   No one explained any of the blood test results to me.   Just that the kids were negative.   Don't get to talk to doctor about results.   The nurses always just call back and say they are negative and then they don't know the specifics about the tests.   Very frustrating....  

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Oh goodness.

Yes, the Immuglobulin A is often referred to as "Total Serum IgA" and is a control test to see if one is IgA deficient. If deficient then some docs will order the IgG based celiac antibody tests.

Here's one problem....some, especially young kids can be positive on one of any antibody tests or all of them. I always recommend kids with obvious symptoms &/or family history of celiac disease be tested with the complete celiac antibody panel.

I'll add the complete list when I get back to my laptop....on mobile version just now.

Hang in there...keep reading.

I would suggest you get a complete antibody panel yourself. Your primary can order it.

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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.
    Ingredients:
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    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.
     
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    Jefferson Adams
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    Jefferson Adams
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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. 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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. 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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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