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Last 48 Hours Before Gluten-Free Forever
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It's finally here! My endoscopy is on Friday at 9am. I've been doing a gluten challenge for the past three weeks to ensure that I get the positive I know is there. Even if the biopsy comes back negative, I have my blood tests and these past three weeks have been such a living hell that I'm never touching gluten again. 

 

So here I am, the last 48 hours of eating gluten. There are a lot of "lasts" as I consume the gluten-ous foods that I used to love so dearly in their full gluten form. But the part I'm most excited for is all the firsts. First week without the nausea and vertigo I seem to have developed since going back on gluten, first classes where my head is clear and my ADD symptoms disappear like they did when I was gluten free, the first experiments with new foods that I never would have approached otherwise, and for the first time in (at least) 7 years feeling 'normal.' 

 

These past three weeks have allowed me to go through the grieving process that comes with the initial diagnosis as well as making me so appreciative that I have the answer to many of my physical and psychological issues. I am so excited to be gluten-free forever. 

 

 

 

In other news, my boyfriend just set up his appointment to get tested after he's been having the same issues with pasta as I did that prompted me to get testing done. 

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:) Enjoy a last doughnut or cinnamon bun for me. And good luck with the biopsy. I hope it goes perfectly.

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Update: 

 

I had more gluten yesterday than I've had in the past week and man did I pay for it. I'm still feeling it in my limbs today (soreness, tingling) but there were multiple points where my body was trying to decide if I'd stop hurting it if I puked or passed out. Luckily neither happened. But I haven't felt that bad in a long time... since before my testing in February. 

 

My mom is on the plane to come to my school to take me to my endoscopy and take care of me for the next couple days as I process the last bits of gluten out and get to be the best version of me again. My boyfriend has his blood tests tomorrow as well, but I'm concerned that they won't do a full pannel even if he requests it. I only got the ttgIgA test because I didn't know better. 

 

In 24 hours, I should be done with my endoscopy, eating creamy vanilla ice cream from a shop that the celiac's group in town promotes as safe, or at least they know how to make everything safe. I'm so ready.

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Isn't it the worst, knowing that your body doesn't cope, but you kind of have to for accurate results? :( 
5 days until my appointment. 

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Today is the day, right?  Good luck!

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And I'm done!! Everything went really well today. The doctor only took one or two biopsies after he said he was going to take 8...which is slightly frustrating. But he also said there was enough visual damage that I should start being gluten free today, which was the plan anyway. I'm still a little sleepy and groggy but I don't remember a thing after they said "here comes the first wave of medicine" referring to the anaesthesia. I feel perfectly fine now and so content that this is all over. My mom is here and going to make me spaghetti with brown rice noodles for dinner. Thank you to everyone who ever read or replied to a post throughout this journey. I know this is just the beginning but I'm just so happy to know what was wrong.

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I am glad it went well and that you got a definitive diagnosis.

 

Happy gluten Free Day!

 

Diana

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glad you are getting some answers!!  hope you're feeling better today  :)

And I'm done!! Everything went really well today. The doctor only took one or two biopsies after he said he was going to take 8...which is slightly frustrating. But he also said there was enough visual damage that I should start being gluten free today, which was the plan anyway. I'm still a little sleepy and groggy but I don't remember a thing after they said "here comes the first wave of medicine" referring to the anaesthesia. I feel perfectly fine now and so content that this is all over. My mom is here and going to make me spaghetti with brown rice noodles for dinner. Thank you to everyone who ever read or replied to a post throughout this journey. I know this is just the beginning but I'm just so happy to know what was wrong.

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Glad it went well! Hope your gluten withdrawals aren't too bad!

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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Is coffee glutem free or not ?  Always wondered about this ............. got to have my coffee... I am new to this  , very new .........
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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