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Off The Wall Question
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This is going to sound nuts, but before going gluten free did any of you feel like you were high all the time. Not like "I just smoked a big doobie high" but just sort of spaced out. I was off gluten for a week and a half and felt somewhat better, then I ingested some this past weekend and today and yesterday I've felt spacey and my stomach sounds like its declaring war on itself. Mild pain tho and some semi-diarrhea.

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Gluten and casein both are known to have an 'opiate' effect on the brain. That is why many have had sucess treating ADHD and autism spectrum disorders with a gluten-free/Casein Free diet.

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slightly... not really high.. but spaced out and VERY MUCH ENJOYING MY FOOD... i also get extreme pleasure while eating cheese... which i have not been able to get off of.. still addicted.

it also felt like a drug, cause u cant stop- ie: if i was to eat a bowl of fettucini bolognese (real gluten pasta)- id prolly get up to fix 3 more bowls.. but now with rice pasta- i may fix a 2nd bowl.. but thats it

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I really noticed more when I was accidentally getting slipped some gluten. It's like my brain feels a ZING! Then I feel like eating the rest of the food that has the gluten is like sAtisfyinG the munchies, THE BEST THING I EVER TASTED! WOW!

I told my husband if I ever start acting like that again when I 'm eating to take it away, because it has gluten.

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I really noticed more when I was accidentally getting slipped some gluten. It's like my brain feels a ZING! Then I feel like eating the rest of the food that has the gluten is like sAtisfyinG the munchies, THE BEST THING I EVER TASTED! WOW!

I told my husband if I ever start acting like that again when I 'm eating to take it away, because it has gluten.

I'm talking like when I stopped gluten I felt pretty good. Like a dodo I ate some this weekend and now today my stomach is making crazy noises, I have D and I feel like I'm spacey and going cross eyed

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I'm talking like when I stopped gluten I felt pretty good. Like a dodo I ate some this weekend and now today my stomach is making crazy noises, I have D and I feel like I'm spacey and going cross eyed

That's a pretty common reaction to getting glutened. It will pass but it may take a few days.

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    • Thank you! I will call and ask for a full panel and see where it leads!!
    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • 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!
    • 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!
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