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How Long Are You Binned After A Glutening?


Leper Messiah

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bridgetm Enthusiast

I've been having those carb cravings this week. Last week I was hit by cross-contamination probably everyday thanks to the cafeteria <_< and was in pain. This week it was constipation (I don't get D often either) and constant hunger pangs. I've been eating a lot of cereal, trail mix bars and wafer cookies. Today I finally feel like my system is moving just a little bit.


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Leper Messiah Apprentice

You know, I used to have the brain fog constantly, but now I don't notice it as much when I take an accidental hit. I think that for me it was a cumulative effect. A small hit is enough to pull up the more physical symptoms but doesn't take down the whole brain with it. I wonder about the carb hunger. I remember being hungry ALL the time pre-gluten-free, and I would go and pour myself another bowl of mini-wheats cereal. (sigh) I don't really crave carbs anymore. In fact, if I eat too much sugar or starch, my blood sugar goes wonky. I used to crave them a lot, though.

How long you been gluten-free i-geek?

bridgetm Enthusiast

Just an update: Those symptoms that I thought were a second wave after that week of recurring CC were actually a seperate reaction... to Dermatone sunblock. I thought the break out on my face, neck and arms was an allergic reaction that I've experienced before to various sunscreens, but I finally took a closer look at the label last night and guess what I found? Tocopheryl acetate. The rash must have been DH. That tube of my favorite sunblock ever is now in the trash.

i-geek Rookie

How long you been gluten-free i-geek?

Four months this weekend.

Shannonlass Apprentice

Wow guys. I really feel for you all. Maybe because I am a newby (9 weeks gluten free today!) but I don't seem to be taking a reaction at all (see my other thread) It kind of has me worried though. I'm afraid I am not doing the diet properly at all and the first I will know of it will be when I get my antibodies checked in June :(

Mskedi Newbie

are you all completely down for the count for this long or are you still making it to work during this time?

I'm useless for a good four to twenty-four hours. Because of that, I've gotten into the habit of only taking risks like eating out at a new place or eating something a friend prepared on Friday nights. That way I won't miss work. I got hit pretty bad this past Friday night, actually, and Saturday morning was no fun. It's still messing with me now, but I'm functional.

Skylark Collaborator

I get a day of GI symptoms and starting about 24 hours later a couple days of brain fog, anxiety, and depression. Not pleasant at all.


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    • trents
      Welcome to the forum, @Trish G! "Gluten free" does not necessarily equate to "no gluten". According to FDA standards it actually means that a food product contains no more than 20ppm of gluten. This is safe for most celiacs but would not be for those who are on the more sensitive end of the spectrum. So, it would depend on the individual celiac and their level of sensitivity to minor amounts of gluten. That's the long and nuanced answer. The short answer is that it is a product derived from wheat and so you can be certain it will contain some residual amounts of gluten. No gluten removal process is 100% effective. So, to be absolutely certain, stay away from it. Have you tried chia seeds? Very high in fiber and quickly turns into a gel when added to water. Make sure you get seeds that are gluten free if you decide to try it.
    • Trish G
      I was taking Benefiber for my IBS-C before my celiac diagnosis. It does say Gluten Free but lists Wheat Dextrin on the label. I really dont like psyllium fiber, so is there anything else I can take or is the Benefiber really ok for someone with Celiac disease?  Thanks!!!
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      @Rejoicephd, I'm not a doctor, but I experienced severe thiamine deficiency.  Your symptoms seem really familiar.  Malabsorption is a real thing that happens with Celiac.  A multivitamin is not going to prevent nor correct nutritional deficiencies.    Doctors do not recognize nutritional deficiency symptoms.  Gastrointestinal Beriberi is not recognized often.  Caused by thiamine deficiency, high dose thiamine supplements or IV administration with other vitamins, minerals and glucose under doctor's care is needed.   Thiamine deficiency is found in anemia.  Thiamine deficiency in the kidneys can result in electrolyte imbalances and cloudy urine.  Thiamine deficiency can cause high blood sugar which can cause cloudy urine.  Dehydration can cause cloudy urine.   I'm linking some PubMed articles.  You see if your symptoms match.  Discuss the possibility of Gastrointestinal Beriberi with one of your specialists soon!  Just to rule it out.  I'm very concerned.   I'm linking some PubMed articles.  You see if your symptoms match.   Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/#ref3 From Section 3: "In conclusion, TD limited to the gastrointestinal system may be an overlooked and underdiagnosed cause of the increasingly common gastrointestinal disorders encountered in modern medical settings. Left unattended, it may progress to wet or dry beriberi, most often observed as Wernicke encephalopathy.". . And... Refeeding Syndrome https://www.ncbi.nlm.nih.gov/books/NBK564513/
    • trents
      What are your symptoms? What has brought you to the point where you sought celiac disease testing?
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