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"my Kids Can't Have Gluten So I Have To Get Whole Wheat Spaghetti For Them"


their-aunt

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Now I hoard food - not in a bad way. I don't buy lots of snacks, but I have enough food to make it through about two weeks to a month if a disaster happened.

This isn't such a bad idea for people who have to have restricted diets for medical reasons. I learned this the hard way when we lost our electricity the better part of a week several winters ago, and there was not only significant flooding that limited road access, there was no electricity in many of the surrounding small towns - one assumes one can just drive somewhere and grocery shop.... not if there's no electricity, duh. I was damned lucky to find a functional gas station in a little patch of rural service area that hadn't lost power about 4 miles north of here, because if it had been known they were still open by the general public at large, they would have sold out quickly. I found ONE open grocery about 40 miles away, and they were scrambling to keep what food they had on the shelves. You should have seen the detours due to flooding.... try driving that with hundreds of other cars in pitch blackness. I had to stop at one point and get out with a flashlight and check what intersection I was at, to make absolutely sure I was not going to do something stupid. (the detour signs were taking us near river levees :ph34r: ) And the local news media was USELESS on covering this. That was the shocking part. It was as if it were not happening. None of the local radio stations are live content any more, all pre- recorded.

I follow the weather forecasts a lot more closely now. We purchased a generator (and have used it since then). I also drive my spouse a little batty sometimes with insisting we keep a lot of non perishable, back- up foods stocked in the pantry. This was when I also started experimenting with seeing if I could expand my diet if I had to, because it is more difficult to cook gluten free and grain free foods when you don't have electricity.


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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
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      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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