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Tristan's Mama

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Hello everyone, just wanted to introduce myself. I was referred here by a girlfriend of mine who is a member here.

My name is Nicole, I have two children, Caitlin (5) and Tristan (almost 2). I live in the Greater Toronto Area (Ontario, Canada). Tristan is the reason that I am here. I nursed him for 7months until he weaned himself, he never had a solid stool. I used Soy based formula after that because I didn't think he should be on a cow's milk based formula if he was not allowed to have cow's milk until the age of 1. We tried milk at 1 year old and he reacted negatively. He had bad reactions to anything that had dairy in it, and any type of dairy milk. We had him tested and it turned out he is allergic to dairy, so he has been dairy free since very shortly after his first birthday. We use Soy products instead. However, even with the Soy, he has continued to have liquid and very smelly stools. I never had to question wheat or anything with gluten in it until the end of this past August, he reacted badly (vomitting, extreme diarreha) to a bun. It kept getting worse with any bread that we gave him. We went to our doctor and when I asked him if it could be the gluten, he said to try the gluten-free diet for two months and see if it made a difference. If it did, then we would have our answer. It has now been a month of him being on the gluten-free diet, and I am very happy to say that at almost 2 years old, he has had his first solid stool now!! Another thing that made us question is the fact that he hasn't grown in over a year. He is 27inches and 19lbs and is almost 2 (will be 2 on November 11th), still wearing 6month clothes, the same clothes he was wearing last year (while it's cheap on our clothing shopping for him since we haven't had to buy him any new clothes, it's obvious that it's not "normal"). Our doctor kept saying he was just a small child (both my husband and I are small).

My doctor now wanted to do the test for celiac disease, knowing that he is doing doing well on the gluten free diet, but we don't want to risk taking him off of the diet after everything we have read, and how he is improving on the diet.

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Hi there and welcome!! You didnt say....not sure if you are looking for support or advice or both. :)

This forum is a great resource and we are here whenever you have a question. It is so great to pool from so many wonderful people who participate on these threads.

First, I would ask why you want an official dx? Is there a reason you need to feed him gluten, make him sick and then put him through an invasive test (biopsy)??

If it were me and mine, I simply could not do this to my child. I just couldnt.

You had a POS response to the diet and that is your answer. It isnt a dx. It isnt a name scribbled into his medical charts. It is real life and real results!! And the sad truth is that even if he can survive eating gluten for 3 months (recommended for accuracy by many) tests on children under 6 are notoriously inaccurate because their immune systems are not fully developed and they do not produce enough antibodies to get a POS blood result. And since intestinal damage can be "patchy" a biopsy might not show any damage if they do not take samples from the right places or they are not interpreted correctly.

You could put him through that misery for nothing. And they will say he is fine. He doesnt have Celiac. When in fact he could and if he continues to eat gluten could set himself up for autoimmune diseases and cancers (due to untreated Celiac).

He is young right now and it is easy for you to monitor his food. A gluten free diet can be VERY healthy. The day will come that he eats gluten. Either by accident or deliberately (the teen years can be hard for a celiac/gluten intolerant). If he gets a negative response, then he will know he cant eat it. If he gets no bad reaction, he might have just been "intolerant" and able to eat it then. Or he could be Celiac and it could show up later in life.

But all you can focus on at this moment is the NOW. And you have your answer.

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Hi there!! I'm very new here myself! I have a 16 month old daughter with possible celiacs or wheat-related issues. We chose not to get Ellie tested. We've done the blood tests and they are useless in my opinion, but the biopsy just seems too unreliable and invasive for someone her age, so we decided that if the diet works then theres our answer!!! I definately understand you're wanting to find out for sure though. My whole family is deathly allergic of pennicillin. I have never been tested, but also have never had pennicilllin. I don't want to go through the agony of finding out, and yet the doctors are always EXTREMELY skeptical of my choice. They all push for the skin test, even though when my Father got it it ate an inch wide hole into his arm that still remains. I have no desire to go through the same thing. Likewise, I wouldn't want to put my daughter through the torture of eating gluten for many months, even though it makes doctors a bit grouchy to never had the real diagnosis....hope I'm making sense!!!

Good luck in whatever you choose to do and welcome!! Everyone here is AMAZING and they have great advice!!!

Jen

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Thank you both for the welcome! I am looking for both...support and advice from others that have been in my shoes (or are in my shoes)...the two go hand in hand in my eyes.

We do not want to do the test because of the fact that he has had a positive turn around when on the gluten-free diet. Therefore, for the time being, we will not be doing the test. We may decide to once he is a bit older, but for right now the diet is working and that is all that matters. Once he does get older, I do find it important to have a dx, that way we can let his school know 100%, and so that we know 100%.

I haven't transferred our entire family over to the gluten-free diet yet, and I thought I was handling it well...but as I realized last night I'm not. Tristan gets angry because he is not eating exactly what we are eating, therefore as of today, my entire family is being switched over to the diet. It is just easier for him to not feel like he's missing out on something, and it's easier on my ears for that reason, and it's easier for me to not have to cook two separate meals. I also don't want to take the risk, after reading everything that I have, of him accidentally getting into something that is forgotten on the counter or elsewhere in the house.

As I said, I have a girlfriend who is a member of the board, so spent the morning researching on my own online, and then reached out and called her to get more advice (on what he can and can't have...as I didn't know toothpaste could contain gluten...thankfully our's does not). It's just all brand new to me, despite doing it for a month now, and there is so much that I didn't know about. I have called the companies of the laundry detergent that I use, as well as the dishwasher detergent, shampoo companies, soap company, etc. All things I should have done a month ago but had no idea where to start. When my doctor said to try the gluten-free diet and see for improvements, it didn't come with a handout full of lists of what to do and what not to do...which I wish it had!!!

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Keep your eyes open for other family members/relatives to have it whether they know it or not. Watch for symptoms.

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Hi there. I am new to this forum as well and I also live just outside the GTA. Your son sounds EXACTLY like mine!! He has been on a gluten free diet for almost 2 weeks now and he had his first 'almost solid' stool for the first time ever yesterday!! Weird how we get so excited over the little things.

My son will be 2 in Dec and he also hasn't gained any weight in over 6 months and is lactose/dairy intolerant. He has a lot of other developmental issues so he didn't roll over until he was 11 months old and didn't crawl and walk until a few months ago...so he is not quite as small as your son, but the lack of weight gain had his developmental paed worried. We're waiting on blood test results for a number of things, including Celiac but whether or not the test comes back positive, I'm never giving him gluten again. He is a changed little boy since being gluten free and it is amazing!

I'd love to talk to you more. It's so nice to find someone else who lives around here and who is having the same sort of difficulties.

~Tanya

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Nicole! Hi hun! Glad you came over. Like I said the other day. This board has given me more info then all the doctors I have gone to combined. I can't wait for our chat on monday!!

And congrats on having your home go gluten-free!! That is freaking awesome!! :D I hope Allan is coming around. Dennis said you should print off a fact sheet and hand it to everyone who is around Twister. And remember BE BLUNT!

Not only that but I think you are going to see a huge improvement with Caitlin's breathing as well!

I love ya hun!

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