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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.

Got My Little Boys Results Today...
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6 posts in this topic

Well, after waiting 6weeks and having to follow it up I finally got my little boys results today and it has been confirmed he has moderate to severe coeliac disease...I knew it would be positive BUT still a blow actually hearing it and it becoming reality!

Now I just dont know what to do. Do I wait to see the dietician? Do I try and have a go getting him gluten free on my own? I mean...it may sound silly but I just dont know what to give him to eat?! I thought I was prepared and Im really not. Maybe there was some hope that he wouldnt be and I wouldnt have to think about what he eats?!

Im from UK and should get some gluten free food on presciption for him so its free but how do I get the ball rolling with that? Do i have to wait until I see the dietician or can I just see my own GP. I havent actually been told any of this. Just feel a bit lost now... :unsure:

I had the endoscopy and biopsy yesterday so soon it could become reality that I actually have it too but somehow I think that might make things a bit easier if I did. Will have to now get my daughter tested too. Really dont want to have to go through it all again though :(

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How old is your little boy? That may help us in recommending foods.

You don't need permission from a dietician to start. Take a deep breath, relax and start your journey. It is a journey, a process, not a test, so no failing marks.

Start with simple, fresh foods that are already, naturally gluten-free-meats, fruits, vegetables, potatoes, rice etc. You can add back products and processed foods after you gain a better understanding.

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Start the diet right away. There are lots of "regular" foods (most actually) that are safe (meat, dairy, fruits, vegetables, nuts, rice, beans, etc.) that don't cost extra and are available at a regular store. We still buy gluten-free bread and pasta for my son (6) but that is really about it. Now, at dinner, instead of making store-bought rice pilaf, I make brown rice or quinoa. Instead of having rolls with dinner, we just have another vegetable (better for you anyway!). For breakfast he eats eggs, yogurt, fruit, etc. He likes honey Chex cereal too. Lunch was a bit trickier since he used to bring a sandwich every day to school. Now he will do a bean and cheese tortilla (corn tortilla) or left overs from dinner. You will get the hang of it pretty quickly. Keep coming here for ideas.

I tested positive too and it was much easier for my son having someone else gluten-free in the house. Now it makes more sense that all our meals are gluten free and it is so much easier than making a separate dish for him or serving something that he can't have. My husband and older son can eat gluten when they are out of the house, but not at home.

Good luck. But don't wait . . . . my son had very few symptoms but we saw so much improvement in other areas when he went gluten-free (sleep, focus and concentration, mood, energy, etc.)

Cara

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Thank you for your replies :)

He is only 2. I have only just been food shopping today BEFORE I was told the results :huh: so most of the things i got for snacks have gluten in eg crisps and biscuits. I will have to see if the yogurts I got are gluten free, he loves yogurt but I think petit filous have gluten in do they? I dont know what to give him for breakfast tomorrow :blink: he doesnt like eggs at all. Usually he has cereal but he wont be able to have what iv got in. Wont be able to have toast either. Then dinner and tea are more hurdles :(

Feels so lost :(

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Phew its ok petit filous ARE gluten free, iv just looked it up :)

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Well, there you go, you can give him the safe yogurt for breakfast. Sometimes we have to think outside the box and try other things for breakfast that are not traditional. Any dairy is good for B. Cheese, yogurt, some breakfast meat, fruit. My son and I have baked(microwaved) sweet potatoes/yams for breakfast-a dash of cinnamon and butter, or maple syrup is good. Fruit. Homemade custards-you can reduce the sugar a bit. Even if it's a little sweet, a baked custard is a better breakfast than most cereals. I often reduce the sugar in a recipe by half and it is still plenty sweet for us. Maybe you could find a rice/brown rice custard or rice porridge recipe? I make pumpkin or sweet potato custards sometimes too.

I'm not sure what you are used to having at tea, but again, fruit, baked custards, gelatin desserts are all easy until you are able to manage gluten-free baking or find some products.

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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/
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    • 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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