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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.

Symptoms But Negative Test? (Sorry, Quite Long!)
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Hello! I've recently taken my son, aged nearly 4, to the doctor as he has been suffering for at least a year with persistent tiredness, irritability, tummy bloating, poor appetite, very waxy ears and nail ridges. In the past month he has had at least 3 infections, and seems to take longer to get over bugs than his one year old brother. I took him to the docs because he has developed dark circles under his eyes and has had several tantrums apparently caused by exhaustion, even on days when we have done relatively little exercise. Having said that, sometimes he can have a really good day and my husband and I question whether we are being paranoid by getting him tested for illness!

 

The doctor diagnosed anaemia after I insisted on a blood test (he said anaemia was rare in non-vegetarian children like my son) and gave us iron liquid, which we have to sneak into my son's food and drinks. My mother in law is a diagnosed coeliac, so I asked about a test for that but the doctor was reluctant to do it unless my son had been on the iron liquid for two months, improved and then relapsed into anaemia. After my son had a particularly bad week I asked to be referred for a private test, which has come back negative (ttg less than 0.1, hb slightly improved from 115 to 118 after a month on supplements). The consultant we saw is checking the IgA level, which I understand can cause a false negative if it's low, but it looks like we are going to have to traumatise my son further by having another blood test to rule out wheat, dairy and egg allergies.

 

I suppose my question is, has anyone's child had similar symptoms and tested negative on the ttg, but improved on a gluten-free diet? It is just impossible to do anything with my son sometimes as he is so irritable, and I am concerned that when he starts school in September he will be labelled a 'problem child'. He has already been referred for special needs assessment by his preschool because he does not want to join in with many activities. I am tempted to try going gluten-free anyway to see if it makes him feel better, especially as my husband (also negative on coeliac test) has many coeliac-like symptoms.

 

Any experience, suggestions or advice very gratefully received! I'm feeling a bit at my wits end, as you can probably tell...

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if you want to have him tested or the doctor wants to do an endoscopy, you don't want to remove the gluten because it will skew the test.  if gluten is an issue and he improves, it will be difficult to put him back on if you need to have testing done, for whatever reason.  sometimes a diagnosis is helpful in managing school situations and some countries subsidize your 'special' gluten-free foods, so you would need a dx for that.

 

some people remove the gluten, and then regret not testing later on.  me, personally?  if i took my kid off gluten (i wish 2 of them would, but they are grown and they can feel as sick as they want i guess :/)  and they improved, i would say done and done.  but that is your call.  it does sound like you are at your wits end.  if he does have a gluten problem, his behavior will certainly be affected.  good luck & welcome to the forum :)

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I'm a celiac. I had my kids tested for celiac disease after I was diagnosed. The only test available to us was the tTG IgA and all three of my boys tested negative on that but I suspected celiac disease in at least two of them so I made them (and my home) gluten-free, and I'm glad I did.  My oldest and my youngest had their suspicious symptoms improve dramatically after a few months gluten-free. Normal poops, fewer headaches and fatigue, and my oldest's concentration and emotional issues improved dramatically.

 

I have no medical "proof" that they are celiacs but I suspect they are, and I tell them they are. If they want to do a gluten challenge whenn they are adults, fine... well, not fine but I won't be able to stop them anymore.  LOL  But as minors, they are gluten-free, and feeling better.

 

I also have a young cousin who was diagnosed with celiac disease with only cognitive and behavioral issues. Never had stomach issues. It happens.  

Good luck!

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I would suggest seeing if you could arrange a biopsy. Also, you said that he tested negative on the Ttg. Did he have the other tests as well? Sometimes one test will show celiac and the others won't.

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In our experience, please try and get a doctor to work with you.  Don't change the diet and do the endoscopy with biopsy.

 

My daughter was sooo sick when baby cereal was introduced.  (blown off by doctors for months and had to request Celiac testing)  Trying to have her eat gluten for the testing, she ended up being hospitalized for dehydration right after the blood draw for the Celiac panel.  There was 1 positive on the panel.  She went gluten free to be able to leave the hospital.  (4 days of an IV)  The window for an endoscopy with biopsy was gone.  (she was too sick and then she wasn't eating gluten) We opted for the genetic test, she was positive for two Celiac genes (DQ2 and DQ8) Diagnosed Probable Celiac at 17 months old.

 

She was doing well on a gluten free diet until she was about 6 years old.  (she was hospitalized about once a year for dehydration.  A"childhood" illness would go around and she was just start vomiting and not be able to hold anything down.)

 

A very nasty virus went around the kids in the neighborhood.  When she got it, she started vomiting blood.  Off to the hospital for another 4 days and no answers.  We waited until she recovered enough to have an endoscopy with biopsy.  During this waiting period she was vomiting small amounts into her mouth 5 times a day.  It was like severe GERD symptoms, but also ALL consistent with Celiac.  She was diagnosed with Eosinophilic Esophagitis when she was 6. 

 

It is now known that Celiac and Eosinophilic Esophagitis have an association.  All new diagnosed cases of EE should be screened for Celiac.

 

It would be best for a full proper diagnoses right from the start.  With a family history of Celiac and your child showing symptoms of Celiac (anemia, dark circles under the eyes, and then some)  Your Dr. is WRONG for waiting to do testing. 

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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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