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Fell Off, Now To Get Back On!
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8 posts in this topic

I was diagnosed with gluten intolerance earlier this year and had been doing really well. Until the past month. I fell off the wagon. I've been eatting gluten and feeling miserable. I hate feeling this way and I hate what it does to my children and friends. Today is my first day back on and it's a struggle. I need to get my life back and relationships. Sorry having a HUGE pity party today. I hate withdrawal. The hard part with the gluten free diet for me is I LOVE gluten, and am a vegitarian who is a picky eatter. Sigh.......

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Sometimes I wish we could all be put into an induced coma until the withdrawal passes. (It would work for smoking too.)

Hang in there and when you need to vent, this is the place. :)

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The good news is, it will pass and soon, you will feel great again!

Hang in there and if you have a craving, make yourself some gluten-free muffins or something to take the edge off.

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Thanks everyone! Its been about 4 days now, I'm feeling LOTS better. My attitude has improved, and my head is much better. Along with a ton of other things. I'm also down 2.2 pounds! Whahoo! Stupid GLUTEN. I hate how it draws me in. I need to not cave anymore!

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Think of it the same way I do: RAT POISON. ANTHRAX. CYANIDE. MAGGOTS. :lol:

Should I continue??

Welcome back to "clear head central"!!

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The brain fog is so powerful a motivator for me, I know I'll never knowingly ingest gluten again.

I think of it like Irish as well, poison.

I've heard drug addicts tell me how glorious a cocaine binge can be, and I've never been tempted because I know where that goes for so many people. Gluten is just as dangerous for me.

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Think of it the same way I do: RAT POISON. ANTHRAX. CYANIDE. MAGGOTS. :lol:

Should I continue??

Welcome back to "clear head central"!!

I couldn't agree more, that's exactly how you have to think about it! Good luck!!😃

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Personally, I think the people who don't think of gluten as POISON are the ones who struggle the most....are the most tempted...have the most doubt. Even when they've proven what gluten was doing to them...

Somebody should make a Gluten Scared Straight video...with the sickest among us being interviewed... It should be required viewing in medical school, too. IMO

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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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