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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.

Need Potty Training Help!
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Hello!  I am new here!  We just found out my 3 year old has Celiac Disease about a month ago.  Positive blood tests and positive biopsy, etc.  We have been gluten free for around 5 weeks now. 

 

The reason we even found out she had this was because I could not get her potty trained.  After 7 months I complained to my pediatrician who ran a ton of tests and we are glad she did!

 

Sorry if this gets graphic, but I need help.  So  my daugthter has bowel movements up to 10 times a day.  It is not loose stool, more like the consistency of clay.  We have her on miralax daily because she is just always full of stool otherwise.  However, her going all day long in tiny increments is not ideal either.  She is now in preschool and I had to get a dr's note for her to even attend because they are supposed to be potty trained and she is clearly not.

 

Any ideas?  She is 3 years and 3 months and we have been potty training for 8 months.  It's really just the bowel movements that are the issue, but I am losing it here!  Last night we went to a baseball game and I had to change her 3 times in 4 hours and she does not even fit well on those diaper changing tables anymore!  Will this get better as her system  heals?  or is this just something that comes with the territory? 

 

 

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It's probably going to take her some time to adjust and figure these things out.  If she's been going 10 times a day, she may not have built up the muscular control she needs just yet.  I would encourage you to give her time, but also to practice.  I know it sounds odd, but what helped my daughter most (though she didn't have these particular issues to work through) was being able to go outside on the grass in our back yard.  (Just like our dog, which is why she thought it was so cool.)  Then there was no "oh, I gotta go" or "oh, I just went" panic, and no "hold it! hold it! hold it until you get to the potty!" scare either.

 

Would it be possible/realistic to start to (slowly!) lower the dose of miralax?

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It might be worth talking to your doctor about a bowel management programme. It basically involves set toilet times, for certain amount of time. It helped our daughters deal with my eldest going from being so backed up she was leaking up to 20 times a day, and my youngest who was so impacted she couldn't go. Miralax along with bowel retraining worked. Our ped said there bodies just need retrained to learn the signals. It's funny but my 4 yr old still goes at the set times without being told to! I say we are goin out her reply is I'm just going to the bathroom before we go! She potty trained in 3 days. My horrifically impacted 2 yr old turned round and asked for underwear and that was that. Be patient it will happen, her body has been through a lot, and you'll soon be loving the calls of mom im on the toilet come wipe my bum!

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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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