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Me And Sister Feel Absolutely Terrible


Chalula88

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Chalula88 Apprentice

Ordinarily, I don't eat any pre-packaged food that has any dyes, preservatives or more than 3 ingredients. The three days I posted are just the days without dairy where I had to find something else to eat and those were the things I had. That is not at all my typical diet.

I don't eat pre-packaged gluten free foods, except very occasionally bread and crackers. Otherwise, the only prepackaged foods I eat are taco shells and they only have three ingredients (corn, water, lime). I didn't think there was any risk with those things, but I will cut them out for a while just in case.

Also, me and my sister are both 5'3" and 105 pounds. The doctor decided today to put my sister on a formula so that she'll get more calories. We've both struggled to get enough calories, everything gluten-free seems to also be super low calorie and neither of us eats more than a serving of meat per week. Since we've both decided to go dairy free, I'm afraid we're both going to end up underweight.

Since I only drink water, I don't think dehydration is the problem. While I have not been tested for auto-immune disorders, my sister was tested and had no indicators at all and we have the same symptoms.

I'm not sure what to eat besides veggies and rice. I am interested in the paleo diet, but I really don't want to eat that much meat, but if it's what I have to do, it's what I'll do.

Thanks again!


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YoloGx Rookie

You could try a semi macrobiotic diet. Of course it includes a lot of rice. Hopefully that won't be a problem. If it is, then the paleo diet may be for you. You can add in some squash and roots for the carbs instead of rice etc.

Still consider you might have candida overgrowth. Signs of it are excessive tiredness, making bad smells, a white tongue (though salicylate sensitivity can do this last one too), brain fog, craving sweets and/or carbs, a puffy belly, possible fungus on your toenails or crotch rot, vaginitis (though my bad puffy flaky skin there was actually psoriasis--which responds well to dandelion et al and going off salicylates). Anything else guys??

If you do think you might have it, when you go off enough carbs and sugary foods you will likely go through some unpleasant symptoms. If you don't experience the symptoms, its unlikely you have candida overgrowth.

When the candida is dying off it sends out chemicals that makes you crave sweets or at least very carby food and makes you feel mean and nasty. Its a good time to become a cave dweller and see as few people as possible. I got terrible headaches and burning eyes. Resist the urge to indulge. After 5 or 6 days you will have already gone through the hardest part. After that it gets easier.

Pao de arco is one of the good herbs to use to counteract a candida infection. So is garlic. Oregano oil capsules often are quite effective (as long again as you don't have a salicylate problem) as is olive leaf tea or capsules. There are many others, however these are fairly safe ones to start with.

frieze Community Regular

Obviously there are multiple factors going on here. I would suggest getting a 3-5 hour glucose tolerance test, and FASTING INSULIN testing. And adding small amounts of meat more frequemtly. good luck

Chalula88 Apprentice

I think my recent terrible symptoms are related to casein withdrawal. I'm starting to feel better again and my sister is doing great without milk. We're going to give that a while and keep food journals to try to catch anything else that comes up.

YoloGx Rookie

I think my recent terrible symptoms are related to casein withdrawal. I'm starting to feel better again and my sister is doing great without milk. We're going to give that a while and keep food journals to try to catch anything else that comes up.

I'm happy to hear you and your sister are starting to feel better being off the cheese etc. This is really great news!

At some point you might want to figure out whether or not it is the lactose or the casein or both. If it is just the lactose, you can have things like that plain home made 24 hour yogurt I mentioned. But this is for later on. For now just let your body heal.

It is also just possible that you will heal enough after six months to a year or so to be able to have plain milk again. I didn't, but many do. Milk molecules for some reason are some of the first to go through the leaky gut (i.e., the intestinal wall becomes more permeable) we get from the villi being impaired.

Work on healing the villi. Thus the bromelain/papain if nothing else--or its food equivalents: pineapple and papaya.

I would remain alert about the sugar and high carbs.

Good luck!

Bea

ciamarie Rookie

I think my recent terrible symptoms are related to casein withdrawal. I'm starting to feel better again and my sister is doing great without milk. We're going to give that a while and keep food journals to try to catch anything else that comes up.

Glad to hear it! And thanks for the update.

YoloGx Rookie

So how are you guys doing off the milk products now that its a few days later. A lot better I hope!

Bea


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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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