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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.

Needing Some Clarity
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Hello, all. I'm very new but wanted to jump in with a question that's a little time-sensitive.

 

My 6-year-old son has been officially diagnosed with "short stature" since he was three years old. Basically, he was of average height and weight until he was about 18 months old and then just stopped growing. I took him to an endocrinologist in 2011 and all of his bloodwork came back normal, including a celiac panel. He's been going back for follow-up appointments since then, and because he was hitting the minimal-required-growth rate of 2.5" a year and clinging to his spot on the percentile chart (2.5th), his doctor was content. And really, so was I, despite the fact that his father and I are of average size (5'11" and 5'5").  

 

Then last October, after more than 20 years of thinking I just had a nervous stomach, I was biopsy-diagnosed with celiac disease. With this information, I'm looking at my son's lack of growth in a new light, and at his annual endocrinologist follow-up, I mentioned this change. They ran the celiac panel and other tests, and the doctor feels everything came back normal, but I'm not as convinced. HIs vitamin was just below normal, which seems odd for a kid who drinks milk all day and has been outside all summer. He was also just below the low end of normal prealbumin. His thyroid function was iffy as well (edge of normal; she wants to retest in 4 months). 

 

So my simplest question is: now what do I do? I'm sure the most logical answer is to put him on a gluten-free diet, but there are a couple complicating factors:

1) His father and I share custody, so his dad would have to be totally on-board and able to maintain the requirements.

2) I live in a house with 8 other people (2 other adults and 5 other kids), so it would be really hard to keep him away from "bad" food.

 

In light of these, I feel like I really need to know FOR SURE if he has celiac, even though I know not everyone even gets that answer. Is there any intermediate step between here and endoscopy, other than a gluten-free diet?

 

 

Edited by ms_issippi
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Hi, and welcome.

If you are planning to have the endoscopy with biopsy for diagnosis, DO NOT go on the gluten-free diet yet. You must be eating gluten on a regular basis for the test to be accurate. If you have been gluten-free for any significant time, there is a high likelihood of a false negative.

In the meantime, I don't know of any intermediate step. Others may disagree, but cutting back to "just" one slice of bread a day won't make any difference. That one slice still has massive gluten content.

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Thanks, Peter, I appreciate the welcome and input.

 

I forgot to mention that at this last check-up my son's weight had dropped down the charts, from about the 15th percentile to the 5th, despite no major diet or appetite changes. So that's another red flag for me. 

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Sure sounds like you are on to your answer. I'd seek a second opinion with a pediatric gastroenterologist. Like many others, my family's experience with diagnosis was not an easy one. Once you've exhausted the medical route, you may want to try an elimination diet and see if it makes a difference...Keep in mind, even if celiac is negative, gluten-intolerance can have many of the same symptoms as celiac. It's really challenging at first, especially when coordinating households but the benefits outweigh the challenges if it makes him healthier.

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Post his lab work here...perhaps we can help.

Thanks, Peter, I appreciate the welcome and input.

 

I forgot to mention that at this last check-up my son's weight had dropped down the charts, from about the 15th percentile to the 5th, despite no major diet or appetite changes. So that's another red flag for me. 

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Flickr won't give me a direct .jpg link, so I hope embedding the image links will work ...

 

This is his celiac panel: 

 

9420974359_6008228343.jpg

 

 

This is his whole workup:

 

9420974377_13913d8902.jpg

 

9420974893_c2e8f7d6ee.jpg

 

 

Because I was biopsy-diagnosed, I'm not as familiar with the bloodwork idiosyncrasies. The only oddity that ever showed up on mine was that I was anemic. 

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    • Newbie: mother to coeliac kids
      If uncooked, he might have difficulty digesting them because eating ANYTHING with a Marsh Stage 4 gut is bound to hurt.    If pickled, he might be reacting to any of the ingrediants even though they could be gluten free.   Often, celiacs develop several food intolerances.  Lactose intolerance is the most common.   I'd recommend keeping a food diary and well-cooked stews, soups for a few days or weeks until his symptoms improve.   Good Luck!  
    • Newbie: mother to coeliac kids
      Research indicates that the celiac disease blood test results do not necessarily correlate with intestinal damage.  My blood tests were "barely positive" yet I had a Marsh Stage 3B (moderate to severe damage).   But that's not important.  Your boy's health is more important!   I can see why he is suffering so much.  The good news is that he should feel well much faster because he is young.  My heart goes out to you and your family!  
    • Newbie: mother to coeliac kids
      Sorry, but I would have to remind you and those who are newbies, that a whole foods, well-cooked diet is probably best.  Avoid all processed foods.  If you have severe intestinal damage, the villi tips are so damaged (or non-existent) that they can not release all the necessary enzymes, etc. to help a person digest and absorb food well or barely!!!  Many celiacs are lactose intolerant until healing occurs (for life if you are genetically lactose intolerant like many Asians, for example).  Many celiacs have developed additional foods intolerances, so it is recommended that you keep a food and symptom journal.   Some folks might be corn intolerant and other might have issues with nightshades (like potatoes).  Others might have issues with even a good veggie like cauliflower.  I personally can not digest cauliflower after a good glutening for some unknown wacky reason.  What I am trying to say, is that everyone has to figure it out on their own because we all have different issues related to celiac damage.  Lactose intolerance is the most common and a good place to start especially with SEVERE intestinal damage like Marsh Stage 4.   
    • need advice
      Welcome!  The only way to find out if you have celiac disease is to get tested.  Here are the tests that your GP can order for you: http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/diagnosing-celiac-disease/screening/ THIS IS IMPORTANT!  YOU MUST BE CONSUMING GLUTEN DAILY FOR THE BLOOD TESTS TO BE ACCURATE.  THIS ALSO INCLUDES THE ENDOSCOPY (BIOPSIES) WHICH ARE DONE BY A GI.   Anxiety can be a symptom for celiac disease.  Please do some more research so that you can get a proper diagnosis.  Can you go gluten free?  Sure.  That's what my hubby did 15 years ago per the very poor advice of my allergist and his GP.   Twelve years later, I was diagnosed.  Weird, huh?  Anyway, hubby will tell you that I get way more support.  He get's a lot of eye rolling.  Plus, our kid (and my folks and siblings) get screened every few years because I have a diagnosis.  My kid gets tested every couple of years even without symptoms because you can be symptom free and still have celiac disease.  celiac disease is genetic.   It is an autoimmune disorder triggered by gluten.  It is the only autoimmune disorder that is triggered by something known.  If you have RA, MS or Lupus, for example, doctors do not know what actually triggers these other autoimmune disorders.   So, Keep researching.  
    • Newbie: mother to coeliac kids
      If I am rembering correctly,  Marsh 4 is the worst damage.  So he should avoid dairy products like cheese, milk, butter, cows milk ice cream for a couple of months. celiac damages the tips of the villa that help to digest lactose ( which is in most dairy).  Being unable to digest dairy will lead to more bloating, gas, etc.. 
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