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super surfer

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super surfer Newbie

Hello all, after reading this forum, I was stunned with the "Oh this is me" epiphany so many times. I was a Celiac baby, and although a skinny kid, grew up with a normal diet. I am now in my fifties, and have chronic joint aches, constipation with alternate diarrhea, skin rash, but none of the extreme stomach pain that I've read about. I have also had a bowel resection, and diagnosed with diverticulitis. Can I relate any of this to my childhood Celiac problems. After reading this forum, I have been on a gluten free diet for about 3 days now, and hope for the best. Thanks in advance for all your input.


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Takala Enthusiast

Welcome.

They used to think that children outgrew this. They don't. :(

super surfer Newbie

Welcome.

They used to think that children outgrew this. They don't. :(

I have been a quasi vegaterian most of my life, and never really ate much bread, so eliminating grains ect. is not that difficult for me. It dosen't seem like much of a change. what other dietary changes could I make, or life style changes, I'm active / exercise, and want to feel better than I usually do. Thanks again

roxieb73 Contributor

Welcome..... I also had that moment here many times. I was a Failure to thrive infant and my mom was told I would not surive. I was a fighter then and I am still fighting. This place is wonderful there are so many wonderful people with great advice. I am sure We will both learn a lot! Good luck.

Roxie

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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!!!
    • kpf
      Abdominal pain and an itchy stomach were the symptoms I asked to see a GI about. Now I’ve learned these other symptoms—that I have but attributed to other issues—could also be related to celiac disease:  fatigue joint pain canker sores numbness or tingling in hands or feet difficulty with coordination anemia headaches neutropenia I never dreamed in a million years she would consider celiac disease. It was a shock to me. It’s definitely not what I went to her for. 
    • knitty kitty
      @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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