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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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JChi

What Is Likelihood Of Getting Positive Endoscopy If Blood Labs Were Negative?

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Hi, I had a full panel for celiac testing done last week which came back negative (although dgp igg/iga was not tested.)  I have a colonoscopy and endoscopy scheduled for next week.  Are there people who have had neg blood but positive endoscopy?  It seems like I mostly see posts for the other way around.

 

I have been eating "very low" gluten diet for about 2 years and back to full gluten for the past 6 weeks.  I didn't feel too bad for the first 3 weeks or so but recently, I've had stomach cramps/pain everyday, frequent diarrhea, pain in hips, legs and low back (right side).  I'm hoping 7 weeks eating gluten will be long enough for my doc to see if there is any damage.  I've read I should ask him to take 6 - 8 samples, even in areas that might look ok.  Is this accurate?  Any other tips or advise from those who have been through this would be greatly appreciated.  Thanks

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http://www.cureceliacdisease.org/archives/faq/is-it-possible-to-have-a-negative-blood-test-but-a-positive-biopsy

Is it possible to have a negative blood test, but a positive biopsy?

While rare, it is possible to have a negative blood test and still have celiac disease. tTG sensitivity is approximately 98%, which means that 2% of all celiacs may have a normal tTG level. Sometimes tTG antibodies are not produced enough to show up in the blood stream and can only be detected in the intestinal mucosa by special means.

IgA deficiency is a reason why you might have a negative blood test, but a positive biopsy.

Further medical evaluation is important for anyone still experiencing symptoms in order to establish the diagnosis or to rule out celiac disease as a part of establishing another diagnosis. In some cases, celiac disease is the wrong diagnosis as such conditions as Crohn’s Disease and food protein allergy share many of the same symptoms.

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Thanks for your response kareng. I should have mentioned above that my Total Iga was normal.

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Being "very low gluten" for 2 years could explain a lot.

 

Yes, there are people who have had negative blood panels with positive biopsies.

 

They mention " latent or partially treated" celiac as the reason. Also, people with gluten ataxia or dermatitis herpitiformis may have negative blood work but positive biopsies. Dr. Green's book mentions this, I believe.(And one "real" example among us--- I think Bubba's Mom--a member on here-- had this happen.)

 

Make sure the  doc biopsies from different areas of the small intestine and does enough samples while down there.

Good luck. Keep us posted.

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I had negative bloodwork, (they say 20-30% of us do) but severe villi flattening when scoped.  I was told I had Celiac, and to not eat gluten.  I went gluten-free and had some almost immediate relief of symptoms (GERD, bloating,nausea), but then realized I was getting bad reactions from soy too, then dairy, and other foods.  So, to make sure my DX was correct, I was given the gene test.  I had a DQ2.2, which was "equivical", meaning they couldn't rule it in or out.

 

I went to the Mayo Clinic for further testing and Dr. Murray there said I could be Celiac, or just severly gluten intollerant.  He did a SIBO test and found I not only had high hydrogen, but methane too.  He said that's indicative of SIBO, and he felt I probably had a severe case of it.  He said SIBO can mimic Celiac, in that it destroys villi and makes the gut "leaky" causing particles to pass into the blood stream that shouldn't be there, which our bodies react to.  He said the "bad" bacteria can give off toxins as well, giving various symptoms. We tried several different antibiotics, with no change in symptoms.  He said we'd use "good" bacteria to fight off the bad. 

 I wasn't digesting food very well on my own, so he prescribed pancreatic enzymes and a low dose steroid that's commonly used for Chrohn's disease to quiet down my immune system.  He also said to take probiotics every day, which I have done.

 

I'm going back to Mayo the week of May 6 for another scope and a lot of blood work, and a repeat of the SIBO test.  I have been off the steroids and digestive enzymes since Nov. I am still "losing" foods due to bad reactions.  Most recently eggs, and peas.  They are not true food allergies, but intollerances. 

Sooo..now I'm intollerant of gluten, soy, dairy, peanuts, MSG, corn flour, yeast,peas, navy beans.  i've seen several Dr.s and they all say the same thing..."I'm an interesting case". :blink:

 

I have found that I do best on a Paleo diet.  I occasionally eat rice, but no other grains.  I use tapioca starch for thickening sauces, and don't eat breads or baked goods of any kind.  The Paleo diet is a growing trend.  There's a reason for that.  Our food has become "poisoned" with chemicals, artificial sugars, and GMO corn and soy.  Many people find that they feel a lot better eating a diet that is close to what our ancestors ate.  It's what are bodies are designed to eat.

 

I hope I haven't confused you with my answer to this question?  The point is...if you are having symptoms, there's a reason for it.  It's not "all in your head", as some of us have been told.  You can have Celiac with a negative blood test, you can have Celiac like symptoms with a severe bacterial overgrowth,  You may be gluten intollerant (there's no good test for this aside from avoidance and then reintroduction to see if there's a reaction at this time),  your body may be reacting to GMO foods, or the chemicals and dyes in foods, or other food intolerances.

 

My advice...get the scope, get the gene test (they are now finding that there are other genes involved besides DQ2 and DQ8, but it might help get a DX), go gluten-free and eat a whole foods diet consisting of plenty of veggies (organic when available), nuts and seeds, healthy fats like coconut oli (which feeds your brain, raises good cholesterol, and kills bad bacteria), grass fed/free range meats, eggs and fruits.  Shop the outer perameter of the grocery store and don't eat processed foods.  Take probiotics. Have your vitamin/mineral levels tested and take soy free supplements fior anything you are low on. Additionally, take krill oil or soy free fish oil, and limit sugars.

 

Keep a log of what you eat.  A little notebook is fine.  List what you eat and note any symptoms you have. If you have other intollerances going on, this is the best way to find them.

My best wishes to you in finding the answrs you need to help you get your good health back.  Remember too, no matter what is giving you symptoms, it will take time for your body to heal once you remove the offending irritant.

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Thanks for telling the OP your story, Bubba. ;) It sheds more light on the topic.

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Thank you for the advice Bubba's Mom. I did have the gene test and I am DQ 2 and 8. I am hoping to get some answers from the endoscopy but even if the result is negative, my doc still wants me to try 100% gluten, dairy and sugar free for at least 2 months to see if that makes a difference. And yes, I have been reading a lot about Paleo and it seems like a good way to eat, just worried that it would require making ALL my own food and how to find the time to do that with 2 kids.

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hi jchi - i also had negative blood test for celiac put positive endoscopy.  i had already been gluten free for (i think) a month at the advice of my gp doc.  feeling so much better being gluten free really pushed me into going for the testing/scope.  my GI tested for so many things as well, for crohns, thyroid, etc. - to narrow it down.  but when i had my scope and was coming out of the anesthesia, she out and out told me she could actually *see* the damage.  i kind of went "whoa" - no wonder i felt like i could die.  

 

that being said:  anyone who knows me can tell the difference changing my diet has made.  whether i had gotten a definite diagnosis or not i would have continued with the diet.  it's really the only thing that ever worked, out of all the years of pills and misery, something as simple as changing my diet has made me so much better!  i tell my husband, i feel like an onion, peeling away symptoms like layers of skins (ok that's gross, but hopefully you know what i mean :)  

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Thanks for sharing your experience Notme. My test is in 2 days and I am so ready to get back to gluten-free eating. My stomach cramps have been getting worse.

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