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Pre-Diagnosis
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Hi guys I name is Andy and in 4 days I find out if I have Celiacs disease. I began showing symptoms about 5 or 6 months ago, and recently discovered my brother has Celiacs. I am currently in the process of having my blood tested, and I get the results this Friday.

Since the blood test I have been following a strict gluten/wheat free diet and already have some symptoms fading. This to me is my body's way of saying 'Yes you do have it'. At the moment I've gotta say I'm not having the best of time coping with what I'm no longer allowed to have!

I've joined this site today in an attempt to be able to talk to people who also have this condition just so I've got some support to hand. I hope to hear from people soon, and ill also post hear on Friday regardless of results.

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Come on in Andy, glad you found us.

I am about 3 months in now, and it does start to make sense what you CAN eat.

Lots of people find a fairly simple diet to start works well, meat, fish, veg, fruit.

There are a ton of gluten-free foods out there, but maybe go a bit easy to start, and use these as treats rather than swap everything like for like. Try it and see what works.

Most people get loads of questions as they go, the folks here are amazing with answers.

Let us know how it goes. Great news you are getting some relief already gluten-free.

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Sorry to hear you've been unwell, but that's great to hear that you are already showing improvements on the gluten-free diet.

Those first weeks are pretty hard, especially if you go through a withdrawl of sorts which can make you feel pretty poorly on top of deprived. My advice would be to treat yourself to gluten-free treats over the next few weeks when you want them. I know it made me feel better (emotionally) to eat yogurt covered pretzels when I knew I couldn't eat a muffin, or some gluten-free cookies instead of oreos, M&M's instead of licorice... and I actually lost weight. LOL

I would also advise you to clean out your kitchen of as much gluteny stuff as you can. It makes cooking much simpler, and it's nice to know you can eat almost anything in your own home.

When your tests are in, you might want to check your vitamin and thyroid levels too. Many celiacs are low in vits and a bit malnourished. Vitamin D, B12, K, ferritin and calcium levels aregood to check... I think there are others... TSH and free T4, free T3 and TPO Ab are good to check; most doctors just check TSH but patients with thyroid issues (which are fairly common amoungst celiacs) often have a TSH that falls in the normal range so problems can be missed.

Good luck with the tests! :)

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Hey guys thanks for your messages.

Unfortunate I don't have my results yet, the doc said ill hear back in the next couple of weeks. Only thing she did say was that my cholesterol was kinda high, but apart from that there was nothing remarkable about my bloods. So ill guess ill have to wait and see about Celaics. I'm on a full wheat/gluten free diet at the moment, even got a mini cupboard of snacks and treats I'm allowed :-)

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Is your doctor recommending and endoscopy too? Remember you need to stay on gluten until after that if you are having one.

It is really worth posting your results here when you get them, lots of the folks are experienced enough to pick up bits doctors miss (though fingers crossed you have one of those good docs we occasionally hear about).

Also, there will be plenty of advice if you test negative but still want to try gluten-free. There's a lot of us about...

Mw

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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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