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Got My Little Boys Results Today...
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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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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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