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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.

What Will A Gi Doctor Do?
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4 posts in this topic

My son just had his one year well baby and has fallen off the growth charts and now has a trend for a downward spike for the last three appts. We went and had blood work done and his Gliadin AB IgG level is 17. No our ped wants us to go to a GI specialist. Does anyone know what the next step is and what the GI specialist will test for and how invasive the tests are? Anything would be helpful we are kind of at a confused stand still and I haven't been able to get a straight answer. Thank you so much.

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Hard to say as I've always understood that celiac tests at this age are not nearly as accurate. Normally, the next step would be a small bowel biopsy by endoscopy. Not sure with a child who is just 1 though.

richard

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willie25, I am new to the board but have done much research over the last month. My understanding is the biopsy is quite invasive and you might not get a clear answer anyway. I personally would listen to what the GI wants and do your research before you say yes. I got my answer from www.enterolab.com. I think I have become their biggest fan. My child has suffered four years now and blood tests were all negative for celiac disease and allergies. The FACT that my child COULD go to the bathroom without days of pain and laxatives when gluten products were removed from her diet, didn't matter to anyone. (nor did the just under 3000.00 in dental bills because her teeth melted away to cavities) Enterolab has a lot of information on tests and biopsys and just keep clicking on the website and go to IntestinalHealth (from enterolab) and read all you can there as well. The team has focused their lives to intestinal health and they are up on the latest. My GI had his head somewhere and would only except the celiac disease diagnosis with a blood test. The stool (which is so easy to do) and gene test were delivered to my door and picked up from my door and there was no hospitals or needles required. My four year old laughed at having to go pooh in a container on the potty. It is pretty scarry with a little one, just get yourself educated and stand up to the doctors if you believe from your research that their information is outdated.

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Well I haven't posted in a long time because my son is sick alot. But I feel every sitution is different and you will just have to see what happens. My son was diagnosed at 17 months. They started out with finding fat in his bowel movement, it was positive for celiac. Than they did the blood test and it was positive for having celiac. Now the small intestine came out negitive for celiac. My son fell off the charts also, he would not eat. Only maybe a couple of bits or a couple of sips. I breast fed him for 17 months. And than the doc put a feeding tube in his nose. Now he has a feeding tube in his stomach. The feeding tube saved his life, food hurt him so he wouldn't eat enough to keep him alive.

We are in the hospital every three months for tests, celiac also comes in two's.

You can check out my son on www.caringbridge.org/co/zack.com

God Bless and Take care

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    • Good advice Ennis!  I would add baking and freezing some gluten-free cupcakes to have on hand, so that she is never left out.  Be sure to read our Newbie 101 tips under the coping section of the forum.  Cross contamination is a big issue,  If the house is not gluten free, make sure everyone is in board with kitchen procedures.   Hopefully, your GI talked about the fact that this AI issue is genetic.   Get tested (and your TD1 child).  TD1 is strongly linked to celiac disease.  About 10% of TD1's develop celiac disease and vice versa.  Get tested even if you do not display any symptoms.    http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/
    • What does weak mean?  Like you squat down and and you can not get back up?  Or are you fatigued?  When you said blood panel, was your thyroid tested?  Antibodies for thyroid should be checked if you have celiac.  So many of us have thyroid issues.  
    • We are not doctors, but based on the results you provided, you tested negative on the celiac screening test.  You could ask for the entire celiac blood panel to help rule out celiac disease.  The other IgA that was high?  It normally is given as a control test for the TTG IgA test (meaning if the celiac test results are valid).  In your case, the TTG IgA test works.  Outside of celiac disease, you might have some infection.  Discuss this with your doctor as he has access to your entire medical file.  I would not worry about it though over the weekend!  
    • See: http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/ Take a copy of that with you or mail it to the doc. How many endoscopic biopsies did they take? Those with dh tend to have patchier damage than "normal" celiacs.
    • Ironictruth, I think that is a very insightful thought. since different antibodies present for different body systems all the ways gluten affects the body is still not well understood. Here is a case of presumably someone who had the gut damage of a celiac but also had neurological damage. http://www.nature.com/nrneurol/journal/v3/n10/full/ncpneuro0631.html entitled "A case of celiac disease mimicking amyotrophic lateral sclerosis" so it has happened in the literal but since this is not well understood people don't make the connection today. I would also point you to this hindawi article on the "Lesson's learned from Pellagra" but I am afraid we haven' learn't yet. https://www.hindawi.com/journals/cggr/2012/302875/ notice specially the 2.1 section clinical feature of pellagra and all the neurological symptom's once associated with a Pellagra patient. quoting "The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants." which tells me doctor's don't recognize pellagra today when they see it because they haven't seen it in 75+ years. ***this is not medical advice but read the hindawi journal on lesson's learned and I think you will see yourself in their many descriptions of all the way Pellagra presents itself to doctor's and patients still suffering today and you can see why it (like celiac) is hard to pin down today because it presents in so many ways it can be soo overwhelming and since vitamins are not a focus anymore today (especially b-vitamins) that today I believe we are doomed to repeat history's lessons unless the current generation learns again all the ways pellagra presents itself today. good luck on your continued journey. posterboy by the grace of God,  
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