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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.

6-Month Follow Up Test Results
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4 posts in this topic

We just received the 6-month follow-up bloodwork results for my 8.5 year old son and I must say I am so relieved because they are normal. He was diagnosed via bloodwork and intestinal biopsy in August 2012, and at the time his TTG IGA was 66 (ref range <=19), his TTG IGG was 14 (which was a high normal, ref range <=19), and his total IGA was 143 (ref range 29-162). Recent bloodwork revealed that his TTG IGA is now 5, his TTG IGG is also 5 and his total IGA is 142. This is such a relief to my husband and I because his only truly noticeable symptom has been lack of growth and although we are extremely diligent about cross-contamination and following the gluten-free framework we had no way of knowing if what we were doing was working!

While we received the bloodwork results, we have his actual follow-up appointment with the GI next Wednesday so I have a million questions that haven't been answered. Can I assume that since his results are normal that his intestines are healed? Does he need a follow up biopsy to confirm? Does anyone know if the bloodwork results are cumulative over a specific time period or are they more indicative of recent changes?

He has yet to show significant growth, but he was also diagnosed with growth hormone deficiency in November and started growth hormone therapy about three weeks ago. I am hoping that we will see a significant growth spurt now that it appears we are on track with the gluten-free diet. Also, my husband and I virtually banned most processed items that we knew did not have gluten ingredients but were processed on shared equipment, would it be safe to try to incorporate some of these items into his diet to gauge his reaction? There are a few things that he really misses, such as a basil pesto tilapia that we found at Costco that didn't have gluten ingredients but was processed on lines with breaded fish. We have a shared household and while he has his own separate toaster, colander, and utensils, and all of our dinners are completely gluten free can I assume that he is not super sensitive to gluten (or should I make no assumptions)?

Any other specific items I should be sure to ask his GI doctor at his appointment?

I should also mention that his iron and calcium were checked in August and they were both normal and the doctor ordered a check of his Vitamin D when the current celiac panel was ordered and it was also normal although a low normal. It was 24 (ref range 20-100). He currently takes two gummy vites a day and two omega 3 fish oil gummies a day as well.

Thanks so much for your knowledge and support, while I do not post often, I do read many of the posts in this forum and the wealth of information available has made this journey more tolerable! :D

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I believe the normal blood tests mean that no autoimmune reaction is happening . . . not necessarily that everything has healed. My son took a full year to have normal blood results. The doctor was not overly concerned - she said it is different for everyone. We just went in for our 2 year check-up and his numbers are still good. She did run tests for vitamin deficiencies and thyroid problems but there was no mention of repeating the biopsy. I imagine if he is still not growing they might want to check again? My guy shot up 3 inches in the first month of being gluten free.

Strangely, my son was still having symptoms even though we were super careful. (no eating out, no processed food, etc.) Over a year we were still trying to figure out what we were doing wrong. He still felt sick, had joint pain, no energy. When his 1 year blood tests came back normal, we started looking elsewhere. Turns out the poor kid had Lyme Disease! Now that it has been treated, we are wondering if we need to be as careful as we have been. The doctor said, be a careful as you NEED to be . . . it is easy for us to experiment because he gets a stomach ache fairly quickly after being exposed. Not sure how you would tell if your child does not have many symptoms.

Cara

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Wonderful news about the test results. My daughter grew around 4 inches on her first year of growth hormone injections and this was prior to going gluten free.

Kristy

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My daughter had her 6 month follow up a few days ago! Her ttg went from 78 to 10 (<20 is negative), she tested negative on endomysial antibody (she was 4 times positive 6 months ago), her vitamin D was low 6 months ago at 27 and is now 52! She has gained 6 lbs total, but only about an inch (her growth was not affected though before). Joint pain gone.

I would raise the amount of viamin D you are giving- 24 is low! Ideal is 50-60. I give my 8.5 year old 2000 units a day and her levels are now beautiful.

Glad to hear great news!

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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!  
    • Gluten and panic attacks
      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!
    • Generic meds
      Your best bet is to contact the manufacturer (as Squirmingitch suggested).   My doctor has no time to worry about medication containing gluten.  My pharmacist admitted that she does not have the time to help me, but recommended that I take responsibility and always contact the manufacturer.  My pharmacist did help by insuring that my thyroid replacement medication (Armour) is ordered in a full bottle, sealed and direct from the manufacturer.  I have to give her credit for being honest with me.  I also see her running around non-stop, so I believe that she is super busy.   Why did your doctor switch your medication?  Can you go back to your old brand?  How is your thyroid?   This is a bit off topic, but I subscribe to the Bicycling magazine.  I found this article fascinating about the impacts of cycling, swimming or running on ADHD.   http://www.bicycling.com/culture/people/riding-my-ritalin-how-one-cyclist-gained-control-over-his-adhd I hope you figure it out!  
    • Abu Dhabi Gets its First Gluten-free Bakery
      For an indication of just how quickly gluten-free food products are revolutionizing the food and beverage industry across the globe, look no further than the United Arab Emirates (UAE). View the full article
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