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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 FREE Celiac.com email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

After All That- Not Reacting.
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4 posts in this topic

So if you don't remember- tried gluten challenge about a month ago and ended up in the ER the first day.  HUGE reaction.

 

Fast forward a pediatrician's visit, allergist visit (all negative), and a gastro visit, we are doing another gluten challenge with less gluten.  Endoscopy scheduled for June 27th with blood tests.

 

So we start out small with just a few whole grain goldfish...and her skin starts to react immediately.  Her skin reactions continue for 2 days along with pale/stinky poop and stomach aches......then it all stops.  There are a few spots of eczema that are worse than normal, but not extreme.  I'm noticing some mood swings, but again, nothing extreme and nothing compared to the week after the ER visit.  We have increased her gluten intake over the past few days to no dietary restrictions. 

 

What gives??!!  I mean, I'm grateful that the 2 weeks have yet to be miserable, and I would give anything for a miracle and her intolerance suddenly vanish.  Part of me is really scared there is internal damage going on we can't see :(  Anyone else with this experience?

 

 

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My DS had no gut issues when on gluten. It was a zero Vit. D level that put us on the path to Celiac.

 

Be grateful that you aren't in the ER and that you'll have a scope with (hopefully) answers.  Was there positive bloodwork?  

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My DS had no gut issues when on gluten. It was a zero Vit. D level that put us on the path to Celiac.

 

Be grateful that you aren't in the ER and that you'll have a scope with (hopefully) answers.  Was there positive bloodwork?  

 

I am!!  I actually had her sleep with us (she never does) the first night we added gluten back in (a whole 18 goldfish over the course of the day, lol!) because she threw up in her crib after the ER visit and we didn't know it until morning :(  I felt terrible!  

 

No, blood work will be drawn when they do the scope. The GI didn't want her on gluten very long since she had such a strong reaction before.  He said it sounds like Celiac to him- I had asked him what he felt the sx's were due to, Celiac or some other 'non celiac gluten intolerance.'  He gave us the option to do the genetics test, then only do the gluten challenge if the genetics test was positive, but her blood would have to be sent to CA (from SC), and my husband didn't want to delay the results that could actually diagnose her since the GI felt it was Celiac.  They are going to do 3 Celiac blood tests (I can't remember now which ones), a CBC panel, and an anemia test (she has a love of ice).  

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I spoke too soon....I came home from work to her eczema out of control and she was up half of last night with severe stomach cramps/ache :(

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    • Continued Symptoms
      Try keeping a food and symptom diary.   She could have allergies or intolerances.  But, again, I am not a doctor!  I am healed from celiac disease, but I still react to certain foods and have allergies.  Those will probably never go away as I have been plagued with them all my life (as my siblings have too).  She could have a milk protein intolerance and not just lactose.  Eliminate all dairy too see if it helps.   Speech really normalizes by the age of 8.  I can not say if your public school will evaluate her.  My home-schooled friends are still monitored by the state and receive state funding.  So, I would assume they would receive all the same benefits.  Try calling.  
    • Weeks in and feeling no better
      Let me tell you that based on what people post on this forum, it takes MUCH longer to heal.  In theory,  it should just take a few week on a gluten diet to promote villi healing.  Your body is constantly regenerating new cells in your gut on a daily basis.    Why the delay?   First,  it takes a long time to really master the gluten free diet.  So, in the beginning, dietary mistakes are often made which can delay the healing time.  Second,  celiac disease is an autoimmune disorder triggered by gluten causing a "flare-up" which can be measured by the level of antibodies in your system.  Antibodies can take weeks, months or years to come down.   Third,  there's the type of damage done to your body to consider (e.g. bone damage, depleted iron levels).  Usually anything neuro takes much longer to heal. Has your doctor checked you for nutritional deficiencies?  If not, ask.  You might be really low on a vitamin or mineral.   You could be low on digestive enzymes (actually they can not be released in a damaged gut).  So even when eating gluten free foods, your body is not digesting and absorbing the necessary nutrients.  You could help the healing process by taking gluten free supplements and enzymes.   But it is best to see what you are actually deficient in.   Most of these deficiencies resolve with time. Finally, my parting words of wisdom (as passed on by many of our members), is patience.  I know.  Hard to be patient when you want to feel well, but it will happen.   Hang in there!  
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      Now if everyone out there who probably has a gluten problem adopted your attitude, they would be having a much better life.  After over 10 years gluten-free myself, who really cares about gluten pizza? I go months without gluten free pizza, which is very good by the way, and I am not an emotional wreck.  Imagine!  Glad you feel better and yes, it was the wheat!
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