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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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elizjk

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Hi, I am new. I have had food issues for as long as I can remember and things have worsened in the past few months. I recently saw my PCP and had her check a celiac panel. The results were negative (but she didn't check a serum IgA). My TSH was also within normal limits. CBC was great. I have scheduled an appointment with my allergist for November... but I wanted to see if you knowledgable folks have any insight.

As a kid I was a picky eater and had trouble gaining weight. My mom would feed me frappes (milkshakes for you non north easterners) to get extra calories in me. I would have frequent stomach aches. Things worsened as a teen (frequent diarrhea) and I saw a GI doc who basically recommended more fiber. It helped a little but I still had symptoms. In my early 20s I finally saw an allergist after my then PCP found my shellfish allergy on a blood test in addition to my chronic eczema, asthma and seasonal allergies. I had a scratch test and was basically allergic to everything except dogs. I have eliminated fish, shellfish, birch related tree fruits, nuts, peanuts, and green beans from my diet. About a year ago I stopped drinking beer because it made me so bloated and usually made me run to the bathroom. I am pretty on top of limiting cross contamination, but I STILL have symptoms.

So what prompted me to see my doc was that in the past few months I have been chronically bloated to the point people at work kept asking me if I was pregnant and I stopped buying fitted shirts (luckily the trend is skinny jeans and peasant tops). I have also had an increase in the frequency of the big D. After I had the celiac panel drawn I opted to try cutting down on the amount of gluten containing foods and I have noticed a tremendous decrease in the bloating. I do still have digestive issues and started a food log to see if I can find the trigger. The other night I had regular (delicious) pizza and it resulted in stomach pain, immediate diarrhea, and diarrhea for three days after. (This might be TMI but it's almost undigested food/puke, sorry gross I know)

Also of note I frequently break out in rashes and saw a dermatologist but they are so inconsistent I am lucky if they are times right for my appointment. I feel like they just called it a dermatitis even though I haven't changed anything in my environment. Zyrtec has helped a bit but they still come and go. My skin is also the driest it has ever been despite trying to drink as much water as possible and moisturizing. Also despite zyrtec my ear canals itch like CRAZY.

I guess I am just kind of frustrated with the elimination of so many things in my diet and not definitively knowing. And also the digestive aspect of it. Any insight is appreciated as you seem like a solid community with similar experiences.

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Do you have a copy of your tests?  You might not have needed the Total serum IGA if they did an IGA and an IGG version.  Some do it that way.

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They did the TTG Ab IgA, Gliadin, and Gliadin IgA.

No IgG.

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Also I should probably note I have been treated for depression (which I think was related to working night shifts and has more or less resolved), ADD, back pain since I was in my 20s, acne which is worse now than ever... And probably other stuff I'm forgetting.

Did you ever find symptoms coming and going? Should I ask for more testing/serum IgA... or to see someone in GI?

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The proper testing procedures for Celiac can be found here.

 

http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets3_Antibody.pdf

 

A rash can be DH, look at the pictures on the Dermatitis Herpetiformis thread.  When you get the rash again, take pictures to document.  Getting diagnosed can be really difficult.  If everything continues to be negative you may still be Intolerant.  Since you already have many food allergies, you may have developed more.  I hope your appointment with your Allergist yields some results for you. 

 

Good luck.

 

Colleen

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In case anyone is curious, and perhaps for my own need to think outwardly in a forum that understands... my allergist was not helpful. He did recommend a vit d level which proved I was deficient. I ended up seeing GI who did an IgA level which was normal, but was otherwise not that helpful. I started a strict gluten-free diet in January and my GI symptoms have resolved (minus some difficulty while traveling which was not fun).

My fingernails are no longer shredding and my hair stopped falling out. My acne has improved and my overall rashy outbreaks have calmed.

I'm now considering going back on gluten and going back to GI to see if maybe they can scope me... But I feel so much better the idea seems almost crazy.

Also of note, both my brother and dad have extensive issues with inflammation of different parts of the GI tract. My dad's going to request a panel be done (he's also had iron def anemia, gerd, hypothyroid). I feel like there are some dots that need connecting and it's pretty frustrating.

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