Vibrant America Results - Gluten Sensitive?

[SoccerMom73]

Hello everyone. I'm 46 and have suffered from a myriad of symptoms for the past 25 years (diarrhea/constipation, rashes, reflux, fatigue, mouth ulcers, allergy symptoms, eye inflammation, brain fog, pressure headaches, hearing loss, more recently joint pain, anxiety and fluid in my knee). I've seen many specialists over the years (Rheum, GI, Optho, ENT, Derm, Physio) and nobody has been able to give me a reason behind my symptoms. They say there is definite inflammation and it might be autoimmune in nature but can't define it, other than GI saying it was colitis at first, then changed that to IBS with inflammation. When I was in my 30s I had severe GI symptoms (lots of bright red blood in the toilet, extreme diarrhea and lots of bloating/discomfort). Steroids would work but the symptoms would come back so I finally went to a Naturopath and started a gluten-free diet. My symptoms decreased and I've tried to keep my gluten consumption in check ever since. My symptoms of bloating, reflux, occasional diarrhea and constipation would sometimes return but never as bad as they were in my 30s. I saw a ND back in May 2019 and she sent me for testing at Vibrant America. I have no idea if this is a credible lab but the results were interesting to me as they definitely point to a gluten sensitivity. Appear to be negative for celiac. I've attached them in case they mean anything to anyone. I switched NDs as I ended up testing positive for Lyme so went to one who specializes in that and she is great but hasn't given me much direction on diet aside from saying try not to eat much gluten, sugar or dairy. I guess I'm wondering who I should go to so that I know exactly what I should or shouldn't be avoiding and to what extreme. I've been following a gluten free diet for about 7 months now pretty strictly but would like to know if this is a forever thing or only until my leaky gut is healed. I feel better which is super but want to know if the occasional gluten treat is OK or if I'm just damaging my system. Is anyone familiar with this lab and can interpret these results? Since I switched NDs my 2nd one isn't familiar with this particular lab. Thank you. 

Positive			Moderate
IgG		IgA	IgG	IgA
Intestinal Permeability Panel Anti-Zonulin Anti-Actin Wheat Germ Panel Wheat Germ Agglutinin Gliadin Panel Alpha Gliadin Alpha-Beta Gliadin Gamma Gliadin Omega Gliadin Prodynorphin		Intestinal Permeability Panel Anti-Zonulin Non-Gluten Wheat Panel Purinin		Wheat Germ Panel Wheat Germ Agglutinin Gliadin Panel Gamma Gliadin Omega Gliadin Non-Gluten Wheat Panel Serpin Farinins Amylase/Protease Inhibitors Globulins
Glutenin Panel HMW Glutenin LMW Glutenin
Non-Gluten Wheat Panel Serpin Farinins Amylase/Protease Inhibitors Globulins Purinin
Negative
Celiac			Transglutaminase 2, DGP
	tTG/DGP	Complex	tTG/DGP Fusion Peptide
Intestinal Permeability Panel			Anti-LPS, Anti-LPS (IgG + IgM)
Transglutaminase Panel			Transglutaminase 3, Transglutaminase 6
Gliadin Panel			Gluteomorphin

[cyclinglady]

Sorry, but I am not familiar with those tests.  They are not standard for celiac disease testing which does require you to be on a full gluten diet months before a blood draw or weeks before an endoscopy.  

Your symptoms could be celiac disease or even something like Crohn’s.  Were those firmly ruled out by the GI?  If your GI visit was years ago, consider pushing for another GI consult.  Something is clearly wrong and now more doctors are better aware of celiac disease, etc.  If this is impossible, consider the Autoimmune Paleo Diet which also happens to be gluten free.  And not just avoid gluten, but eating NO gluten.  That is what a celiac has to do.  Do not eat out until you are well. 

I could have sworn my little niece had celiac disease.  It was firmly ruled out.  Her 4th GI diagnosed her with Crohn’s using a pill camera.  The damage was beyond the reach of both scopes.  Why share this?  I am not saying your have Crohn’s, but you are obviously ill.   Try to find the root cause.  

I know nothing about Lyme except that it mimics so many other illnesses.  Just be sure you do not get labeled, “Oh, it must be your Lyme Disease”.  Know that you can have concurrent illnesses!  

I hope this helps.  

[SoccerMom73]

Thank you for your reply and advice. When I had the testing done I wasn’t told I should be eating gluten. Which is pretty annoying as these labs cost me $1300 Cdn! I actually had been following a gluten free (and dairy free/sugar free) diet for 3 weeks leading up to the testing last July.

I have seen a GI about 3 times now. 20 yrs ago, about 12 years ago and about 5 years ago. My endoscopy and colonoscopy 5 years ago showed some inflammation but he said nothing of celiac. I’ve also tested negative for celiac through my rheum and GP.

I’m currently following a lectin free diet (gluten, dairy and sugar free) and will continue to do so as I feel better. But I’m wondering exactly how sensitive I am to gluten. Can I go to a restaurant and not worry about cross-contamination? If I eat some bread periodically am I damaging my intestines? 
And yes, I treat the Lyme as a separate issue. It may have contributed to my symptoms or damaged gut but who knows.

I’m sorry to hear about your niece but happy she was finally diagnosed. I’m afraid I don’t have much faith in the medical system these days after getting the runaround all these years. I’m seeing the most improvement by seeing an ND so will definitely continue that for now.

[cyclinglady]

I wonder if your GI took biopsies.  Celiac villi damage is microscopic.  For example, my diagnosing GI just told me in the recovery room that everything looked good.  Days later, the pathologist’s report indicated a Marsh Stage IIIB damage. I had celiac disease.  I also have Autoimmune Thyroiditis (20+ years) and autoimmune Gastritis (2 years).  My only known symptom was anemia.  Five years later, I had a repeat endoscopy which revealed a healed small intestine (but a gastric polyp and a diagnosis of autoimmune gastritis that was not there five years ago).  This time, my new GI had the latest and greatest endoscopy and you could actually see healthy villi.  So, if you did not see a pathologist’s report, your diagnosis could have been missed.  It is a possibility.  

Also, I test weird for celiac disease.   If my diagnosing GI had not ordered the full celiac panel instead of just the screening TTG, my diagnosis would have been missed.  I can not find any medical literature as to why I test positive to only the DGP IgA and I have been retested many times.  

If you are going to stick to the diet, you have to act like you have celiac disease and be very careful (like avoiding cross contamination).  My hubby went gluten free 12 years (per the poor advice of his PCP and my allergist) before my diagnosis.  The first year was hard.  He would cheat, but pay the price.  Eventually, he realized that gluten did make him sick and he could not afford to be ill.  He refuses to do a gluten challenge and get tested because he does not want to be sick.  What nut would remain gluten free all these years if gluten was not the issue?  So, it is possible to do the gluten-free diet without a diagnosis.  

If you have celiac disease, you are going to do intestinal damage increasing your chances of things like lymphoma.    If you are Non-Celiac Gluten sensitive you might not cause intestinal damage, but you might inflame other concurrent or brewing issues.  It is why gluten is often recommended to be eliminated if you have other autoimmune disorders.  I am working like crazy to avoid a fourth!  

I hope my story helps you.  

[SoccerMom73]

I'm not certain if the GI took biopsies but just assumed this was part of a scope in Canada. I just find this all very difficult to navigate. If I had symptoms right after eating gluten then it would be a non-issue since the correlation would be obvious. But my symptoms don't coincide with what I'm eating so that makes it more difficult to figure out. 

Without knowing more concretely that I'm doing damage to my intestines, I'm hesitant to go 100% gluten-free. Perhaps if my symptoms don't dissipate completely I will ask to see a GI again, then ensure they are taking biopsies. I just wish there was a definitive test, one that could tell me "yes, you are gluten sensitive but OK to eat it occasionally" or "no, your body is too sensitive to gluten so avoid it always." My ND's advice of "Do the best you can." is not definitive enough for me. I have no doubt I'm sensitive to it, I just have no clue as to how much. And I wonder if there is a chance that I've even healed my gut since starting the gluten free diet 7 months ago. Maybe I'm not even as sensitive to it as I used to be?...