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.
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What are the major symptoms of celiac disease?
Celiac Disease Symptoms
What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic)
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
Where can I buy gluten-free stuff?
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I think you are so early in your diagnosis that most test don't account for so early a diagnosis.
see this thread started by you and GFinDC conclusion at the end of the thread
not sure how to quote from multiple threads. Here is what GFinDC thought the study meant and I agree.
Posted March 7
"It seems like another way to look at the positive DGP and negative biopsy is that DGP could be an early indicator of celiac disease. Perhaps before much intestinal damage shows up."
Here is another thread that talks about what is happening to you I believe with so many test's we often can't clearly make out what is happening often.
see this link embedded in the the post as linked by squirmingitch
on the topic of "Seronegative celiac disease: Shedding light on an obscure clinical entity." and might be what you are experiencing from your test results.
But I want to say why while you so want it to be "Celiac" and not the "C" word I think Pellagra should be considered as a differential diagnosis.
I say this and repeat it to those who will listen. Niacinamide helped me.
This article on celiac.com explains why this might be so https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html
and if taking a b-complex 2 to 3 a day (and Niacinamide) for a couple months greatly alleviates many of your GI problems then you also have had pellagra co-morbid and the doctor's don't recognize it in a clinical setting today . . . mainly because they don't know to look for it any more today.
I wrote about how to take niacinamide in my blog post about this topic so I wouldn't have to retype it several times.
I want to quote from the discussions section the heart of most good research from the American Journal of Clinical Nutrition research article linked in my posterboy blog thread about how to take niacinamide and why you would want too Faq.
poster here again for those who want to do the deep research from their discussion section.
"Random spot urine sampling, together with the measurement of 1-MN and 2-PYR concentrations, has been suggested as an alternative because it avoids these issues and would provide a guide to status (22). However, the ratio of these metabolites has been shown to vary according to the time after the last meal because they are sequential intermediates on the same catabolic pathway (21). This makes the ratio an intrinsically unstable variable for use in population surveys; in the present study we chose to use cutoffs previously established for the excretion of individual metabolites expressed relative to creatinine. The subjects whose excretion fell below the established cutoffs for either metabolite were considered to be deficient."
A little technical but essentially we soo need b-vitamins that even if you have a test for low vitamin b-3 the amount of the b-3 in your meal (f you have not fasted before the test) can cause us to test in a low normal range thus making taking of the b-vitamin a self test of cause and effect.
Did you get better after taking Niacinamide then if taking Niacinamide helped your GI problems you were low in Niacinamide.
This is typically a 24 hour test and most people don't fast 24 hours before going to the doctor and will often fail this test since our body has absorbed enough from our food to help us pass the thresh hold set at the minimum level.
Here is why it is good to take a b-complex with Niacin/niacinamide because it interacts with other nutrients.
including b-6 which is one of the metabolites measured to determine a pellagra diagnosis.
see this mdguidelines link that summarizes this well.
where they say quoting there treatment section
"Treatment consists of high oral doses of niacinamide, a form of niacin. Usually, supplements of other B-vitamins are also given because many individuals with pellagra also have low levels of B1, B2, B6, and pantothenic acid." and possibly Zinc if the other research is correct.
***** this is not medical advice just my research on the topic and experience with taking Niacinamide to treat many of my GI problems.
Prousky wrote about this 15+ years ago and still people are not aware of this fact that Niacinamide treats digestive problems.
and if they are are aware of it are they are slow to accept that a vitamin could help with their GI problems.
the gluten free works site also has a great article on this topic.
while it is recognized that celiac's have many of these deficiency it is not well accepted/understood today low Niacinamide alone can treat many GI problems though the research is 15+ years old . . . still people suffer.
I don't want you to have pellagra or celiac but I want you to be aware there is a another valid differential diagnosis that can make sense for many people seeking to be diagnosed as a celaic disease patient.
because people with pellagra often get better very quickly it is worth a try or least some of your time to research it some more.
***again this not medical advice. Please check with your doctor about this possibility but don't be surprised if he doesn't know much about pellagra and probably less than he does about celiac disease.
Dr. Heaney talks about why this is today on his blog about the 4 D's of Pellagra and why doctor's don't recognize it today in a clinical setting.
good luck on your continued journey.
2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.
posterboy by the grace of God,
You should probably have your doctor run a full blood panel for celiac if you want to be tested right, followed by a endoscope and biopsy. The blood test can give false negatives, and you have to be eating gluten for at least 12 weeks daily for the test.
On the ferritin levels, mine was consistently 1-3 on every test even with 2x the normal dose of iron. I found I had to take it with vitamins C supplements to boost it a bit along with managing a few other nutrients that work in combination with it. Seems mine is in part due to constant intestinal inflammation caused by my UC and bleeding ulcers.
Hi, I am looking for a functional medicine doctor in the Chicago area? Any recommendations? I have never been to one. I have celiac disease and ulcerative colitis. What should I expect from a functional medicine doctor?
Omg just saw this again, but on Facebook. Wow there are 596 comments on it, most of which are completely crazy. I almost forgot that most people know nothing about celiac disease., yet they pretend they do and shame us.