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I Guess It's True?


glutenfreemamax2

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glutenfreemamax2 Enthusiast

My 3 year old has had digestion issues since he was born. MAJOR food allergies form about 2 weeks. Allergic to ALL formulas. I ended up nursing him and cutting out all casein and eggs. I was a differnt baby. He still had reflux. Was always (still is) constipated. Reflux is still bad. He was a silent refluxer. The GI told me to keep him on Miralax. I refused. She wanted to test him for Celiac. I refused. Now here we are, they are testing ME. So I finally agreed to the blood work. I just called and got another refill on the reflux meds. This poor child has never slept through the night. He ate gluten free all morning today, never complained. I gave him a gluten-free turkey burger for lunch on a regular bun. Seeme ok until about 2 hours after he ate it.He started complaining of his tummy hurting, which is so frequent with him. He likes pressure on his tummy. I was steering the shopping cart with one hand, and the other hand putting pressure on his belly. So now i'm convinced he is going to benefit from the gluten-free diet. We had the lab work done this morning. I'm scared either way with the results.

Any advice? I also have a 5 year old who insisted on buying pop tarts. I got them, but told him he had to eat it outside.


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concernedmamma Explorer

Hugs to you Mamma! I can completely empathize with your statement of being scared either way. I was the one who pushed for Celiac testing through our pediatrician. When the results came back positive for my son (aged 4, almost 5 at the time), I had many people give me a hard time when I was upset- they felt like since I had aske/pushedd for the testing, I should be happy or at least ok with the results! Then, we had to wait for the biopsy results and I can't tell you how many times I told my husband I didn't know what I wanted the results to be- if they were positive for Celiac, what did that mean? what would he eat? how would we live? could he go to birthday parties? BUT, if it was negative, we were back to square one and what did that mean for our son's health? I spent many nights awake/in tears just wondering what the results would be and how we would deal either way.

All I can tell you is that now that we KNOW he has Celiac, we are able to do something about it. I feel a sense of relief, I feel better that I know what was wrong and can do something to help Jacob feel better. There are definitely challenges to the diet and lifestyle, but every day it gets a bit easier. I still don't enjoy grocery shopping, but It has been so wonderful to see so many people try to help us, to try to educate themselves, to make their homes a safe place for Jacob to be and eat. I do think that being diagnosed at such a young age is a blessing. They are learning a way of life that will not be a 'hardship' later- It will just be the way things are!

Hugs to you and good luck during this process!

glutenfreemamax2 Enthusiast

Hugs to you Mamma! I can completely empathize with your statement of being scared either way. I was the one who pushed for Celiac testing through our pediatrician. When the results came back positive for my son (aged 4, almost 5 at the time), I had many people give me a hard time when I was upset- they felt like since I had aske/pushedd for the testing, I should be happy or at least ok with the results! Then, we had to wait for the biopsy results and I can't tell you how many times I told my husband I didn't know what I wanted the results to be- if they were positive for Celiac, what did that mean? what would he eat? how would we live? could he go to birthday parties? BUT, if it was negative, we were back to square one and what did that mean for our son's health? I spent many nights awake/in tears just wondering what the results would be and how we would deal either way.

All I can tell you is that now that we KNOW he has Celiac, we are able to do something about it. I feel a sense of relief, I feel better that I know what was wrong and can do something to help Jacob feel better. There are definitely challenges to the diet and lifestyle, but every day it gets a bit easier. I still don't enjoy grocery shopping, but It has been so wonderful to see so many people try to help us, to try to educate themselves, to make their homes a safe place for Jacob to be and eat. I do think that being diagnosed at such a young age is a blessing. They are learning a way of life that will not be a 'hardship' later- It will just be the way things are!

Hugs to you and good luck during this process!

Thank you. My older son wanted poptarts yesterday. I explained that Dean needed to eat more like mommy, because bread made his tummy hurt. That's all I said. This morning, my older son left a pop tart sitting on the table. Dean came over and said "Mommy, I no like to eat poptarts. They make my belly hurt!" So now I guess I am going to be more strict abot gluten-free for him. I am going to have to pack his lunch/snacks for school, since they provide food. It's going to be a pain, and I hope the school understands how important this is. I can't go in there to talk to them in person, but I will definatly be calling first thing in the morning to let them know. It's so challenging.

MomHeather Newbie

Thank you. My older son wanted poptarts yesterday. I explained that Dean needed to eat more like mommy, because bread made his tummy hurt. That's all I said. This morning, my older son left a pop tart sitting on the table. Dean came over and said "Mommy, I no like to eat poptarts. They make my belly hurt!" So now I guess I am going to be more strict abot gluten-free for him. I am going to have to pack his lunch/snacks for school, since they provide food. It's going to be a pain, and I hope the school understands how important this is. I can't go in there to talk to them in person, but I will definatly be calling first thing in the morning to let them know. It's so challenging.

My 2 year old was diagnosed with celiac in August. While waiting for the results of the endoscopy, I tried to mentally prepare myself. I was totally overwhelmed for a few days after the diagnosis became official. But after I spent a week hitting different stores and finding out where I could buy things I calmed down. Two months into it, it's still hard (especially when we aren't at home) but not nearly as bad as I feared.

His twin sister does not have celiac, and they have always shared. I try to make things "fair" and have realized that he isn't that worried about it. He knows that gluten makes his tummy hurt, so he asks about everything he eats. Listening to two-year-olds discuss who can eat gluten and who cannot is pretty entertaining. :) Most of our meals are gluten-free now, so he can eat most of the food at home.

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      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
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      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
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