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

26 posts in this topic

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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    • 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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