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Just Venting
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11 posts in this topic

Please excuse my pity party but its either post on this website full of prople who get it or run screaming through the neighborhood and get locked in the looney bin.

I've had about all I can take of this gluten challenge. Admittedly I've let of go too far (eating too much gluten), partly because I'm desperate for confidence in a diagnosis (+ of -, idont care, i judg want to be sure my test results are accurate) and partly because I'm mourning the loss of my childhood comfort diet (processed junk food). My head is such a mess. Headache and brain fog so thick I cant thnk straight, exhausted despite more sleep than usual, dark circles under my eyes, horrible smells all around me (body odor and gas, despite stict hygiene measures), it hurts to lie down, it hurts to sit up. Stomach acid boiling, constant acod in the back of my throat. Everyone at work has noticed, they keep asking me if m ok, that I look sick. And I AM sick. The worst part is the Ffect on my fmily. I'm missing out on time with my son, breaks my heart when he asks me if I'm still sick..."you not sick anymore mommy?" He's not even four yet...i don't remember telling him I as sick, but he obviously gets that something is wrong with mommy. :*( My marriage is strained. Hubby is trying to understand, but he just doesn't. My libido is gone, all I want to do is sleep/lay down... He is being as supportive as he can, but its not fair to him... Plus i just realized that i most likely ahve to keep eating gluten for longer thN i was thinking, unless the GI is able to schedule for an endo right away, ive got AT LEAST 2ore weeks of hell i fromt of me. Ugggggggggh. I just want to curl into a ball and hide. My optimism and positivity are gone. I hope they come back.

Sorry for the negativity. Just had to get that all out. Maybe looking back at this post will help me stay gluten free someday....

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Ps please excuse the typos and grammar errors. On my phone...and frankly scarlet I don't give a da*$.

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((((((hugs)))))

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Look at it this way, there is only two more weeks to go. You've made it this far, you can do it!

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Thank goodness you chose posting here over running naked, down the street with a baguette in your hand!

( that was what you said, wasn't it? )

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((((((((((((((hugs, kiddo, hang on, you're almost there)))))))))))))))))

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IT WILL GET BETTER AFTER (all of it iykwim)

My husband has back and even better version of me than the one he married.

It is always worth calling for cancellations. I wrote down my gluten challenge symptoms and my doctor saw me pretty sharply.

I know you want the definitive diagnosis, but many of us are ncgi, and experience massive benefits from gluten-free. Your body has made it very clear.

We are all rooting for you and will be here for your journey back to health.

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Thanks everyone!! I can't tell you how grateful I am for this site...having support from people who really know this hell is invaluable. 

 

I woke up feeling more positive this morning. Heard a few songs on the radio on the way to work that were encouraging, and a reminder that I'm not alone and foresaken, there is amazing support here and He is always with me.  Reminded me I need to be thankful the symptoms aren't much worse, caz they really could be a LOT worse. I can get through this day.  I can get through the rest of this challenge.  Then I can start healing and get my life back. It will be ok. :)

 

 

Thank goodness you chose posting here over running naked, down the street with a baguette in your hand!



( that was what you said, wasn't it? )

BTW - I literally LOL'd Kareng.  That wasn't what I wrote, but you managed to understand exactly what I meant! :lol:

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BTW - I literally LOL'd Kareng.  That wasn't what I wrote, but you managed to understand exactly what I meant! :lol:

 

I know.  Just wanted you to laugh.

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I know.  Just wanted you to laugh.

:D  well done!! :lol:

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:D  well done!! :lol:

 

 

The neighbors would have been talking about that for years!

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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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