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Endoscopy On Tues - Gluten Free Reality Approaching
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Hello All

I've been quiet the last few weeks - life has been hectic. I now have a date for my endoscopy which will be on Tuesday morning and as the date approaches I am becoming more anxious, even though I know, from what I've read on here, that it'll be fine. My doc says that the results will take a couple of weeks to come through but that I can cut gluten out immediately. Once the results are in then she'll arrange for me to see a dietician. Generally I am absolutely dreadful at planning my meals and quite weak willed when it comes to food. Now that the reality of taking responsibility for my diet in an organised, disciplined manner is only a few days away I want to stick my head in the sand! I know I'm just going to have to be sensible and suck it up but I do wonder if others have had similar experiences.

Thanks

Nicky

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Hello again

I had a good few weeks head in the sand before coming off, and a panic about 3 weeks in, which seems quite common.

I'm almost 3 months now and it is becoming normal. The boards are great for transition, when you will discover loads more questions. And no one seems to mind that hundreds have asked before!

Endoscopy will be fine, take someone with you and try not to have anything planned for later in the day. I think the relief once it is over and fine catches up, lots of people are tired/spacey.

Very good luck for Tuesday, nearly there

Mw

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i've been at this for almost a year and a half. And guess what? I'm terrible at planning as well. My cooking skills (although they are better!) are kinda meh so it can be rather difficult to get around. I always keep things on hand that'll make a quick meal (cheese wraps with veggies is a good example of this).

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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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