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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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KnightRobby

Confused About Test Results; No Treatment Options. Left Confused!

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After months of tests, including HIDA scan, blood work, small bowel series, etc I have left my supposed "Celiac Doctor" (my GI) and I am looking for a second opinion.  I am totally confused by my results.  My GI told me it could be Crohn's, it could be IBS, and even said, "It could be anything!"  He gave me a pamphlet and that is it.  He hasn't told me that he is going to treat my pain left abdomen, which also feels like it is have muscle spasms (I am thinking spastic Colon).

 

I have questions about my blood work.  My initial Celiac panel was 138/20 and was very high (from what I understand).

 

A month later I had my tTG IGA tested again but it was: 52/20 (as opposed to 138/20)  Was this because I was eating gluten free the second time?  And if I was eating Gluten free, should that number be below 20?

 

Also, I had my Glaidin Peptide IGA checked, which was: 51.70/20  I have only done a little research on this and don't know much about it.  But with this number he said "possible Crohn's."

 

I've had a colonosocpy and endo done, which came back for:

- A scattered area of erthyematous mucosa was found in the sigmoid colon and in the descending colon.  It was biopsied but they couldn't find anything (could this be from eating Gluten free?  I was eating gluten free at the time).

- Non-bleeding internal hemorrhoids were found during retroflexion and were moderate. 

 

- I have also developed new food allergies very suddenly.

 

I am wondering if it is nerve damage to my colon due to laxatives and pain killers.  I am having every symptom, including malnutrition and signficant weight loss/constipation and pain right in my left abdomen (colon) region: http://www.ehow.com/facts_5024006_symptoms-nerve-damage-intestines-colon.html

 

At this time I am seeking a second opinion but a lot of these doctors on my insurance have been horrible all around.  At this point, I really don't know how to proceed.  I'd like to do all natural diet.

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I hear you about confusing tests!

 

So if I understand correctly, the baseline for normal on your ttg is 20? In that case it makes sense that your number went down after going gluten-free, and I'm told it can take a while to get to normal, so one month may not be enough.

 

The sigmoid and descending colon aren't affected by celiac (that damage is in the small intestine), so a negative biopsy there might not be related to going gluten-free -- although some people do believe going gluten-free also helps conditions like Crohns and ulcerative colitis.

 

Sounds like a second opinion is in order. "It could be Crohn's" is not helpful at all!

 

Have you gotten any relief when you went gluten-free?

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You didn't mention any biopsies from the small intestine.  Were none taken?  If not this was a mistake, because celiac disease usually is not seen with the naked eye -- you need the biopsy and the microscope.

 

You need to get copies of all your test results from your (former) GI and see for yourself what they say and don't say.

 

Any time you are gluten free, celiac testing is totally unreliable.  You go gluten free to cure celiac disease, so it is expected that your condition will improve gluten free.  Even so, it appears you were still out of range.  But you need to find out these results for yourself, and if you would like, post them on here so we can feel free to comment on them :P   And criticise :D

 

Weight loss, constipation and malnutrition are also known symptoms of celiac disease (along with about 197 other symptoms, some of which I recall you also have). 

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Right on there Mushroon.  I would also say biopsy is the way to go. My blood test was borderline but my biopsy told the true story for me. When first went to see my GI doctor I was 120 lbs from 150. Now I'm at 165 for 10 years now.  My family doctor dismissed everything as pretty much in my head and even my thyroid blood levels they thought was fine. Blood test and biopsy confirmed mine from my GI doctor. Also deveolped barrett's esophagus from the indigestion but a endoscopy will tell you this also if you have it.

 

Rye

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