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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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    • knitty kitty
      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
    • Scatterbrain
      I am taking a multivitamin which is pretty bolstered with B’s.  Additional Calcium, D3, Magnesium, Vit C, and Ubiquinol.  Started Creapure creatine monohydrate in June for athletic recovery and brain fog.  I have been working with a Nutritionist along side my Dr. since February.  My TTG IGA levels in January were 52.8 and my DGP IGA was >250 (I don’t know the exact number since it was so high).  All my other labs were normal except Sodium and Chloride which were low.  I have more labs coming up in Dec.  I make my own bread, and don’t eat a lot of processed gluten-free snacks.
    • knitty kitty
      @Scatterbrain, What supplements are you taking? I agree that the problem may be nutritional deficiencies.  It's worth talking to a dietician or nutritionist about.   Did you get a Marsh score at your diagnosis?  Was your tTg IgA level very high?  These can indicate more intestinal damage and poorer absorption of nutrients.   Are you eating processed gluten free food stuffs?  Have you looked into the Autoimmune Protocol Diet?  
    • knitty kitty
      Vitamin and mineral deficiencies can make TMJ worse.  Vitamins like B12 , Thiamine B1, and Pyridoxine B6 help relieve pain.  Half of the patients in one study were deficient in these three vitamins in one study below. Malabsorption of vitamins and minerals is common in celiac disease.  It's important to eat healthy nutrient dense diets like the Autoimmune Protocol Diet, a Paleo diet that has similarities to the Mediterranean diet mentioned in one of the studies.   Is there a link between diet and painful temporomandibular disorders? A cross-sectional study https://pmc.ncbi.nlm.nih.gov/articles/PMC12442269/   Nutritional Strategies for Chronic Craniofacial Pain and Temporomandibular Disorders: Current Clinical and Preclinical Insights https://pmc.ncbi.nlm.nih.gov/articles/PMC11397166/   Serum nutrient deficiencies in the patient with complex temporomandibular joint problems https://pmc.ncbi.nlm.nih.gov/articles/PMC2446412/  
    • Iam
      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
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