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Celiac Disease Pre-Diagnosis, Testing & Symptoms

If you haven't yet been diagnosed this is the place you can discuss your symptoms and any test results that may indicate that you might have the disease.


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    • Shining My Light
      Thank you @trents! This is all sound advice. In 2022 I did have a biopsy done with the EGD: SPECIMEN: (A) DUODENUM, BIOPSY (B) GASTRIC BIOPSY(C) GASTRIC POLYP, BIOPSY(D) ESOPHAGUS BIOPSY (E) ESOPHAGUS BIOPSY This would have been when the candida was found.  If I understand right it’s the duodenum they take a biopsy of. Nothing was mentioned about Villous atrophy however they were not looking for that particularly.    Something that stumps me is the correlation between symptoms and damage. One seems to equal the other. I have yet to see damage with “silent celiac”. Not saying it doesn’t exist.  Also super curious on other symptoms that would improve based on a gluten free diet. Obviously silent celiac wouldn’t have an improvement in GI symptoms but that is all I have read any data for. No one saying things like my anxiety went away or my headaches and joint pain are gone.    I see why it would be a “gluten challenge” since eating 4-6 slices of bread daily is a challenge to do. 😳 I would replace that with cake 🍰😉 
    • xxnonamexx
      I know I haven't been tested for Celiac yet. But If I took a blood test would they be able to say what I am deficient in as far as vitamins and minerals so I can see what supplements to take or is it not that easy to figure out what is needed to balance out vitamins/minerals. 
    • trents
      All that is exactly why you should have an endoscopy with a biopsy of the small bowel lining done. It's a very simple procedure and in the US they put you under for it so there is no discomfort. You don't even have to do a cleanout like you do for a colonoscopy.  It might also be wise to wait a few months and get the tTG-IGA checked again if nothing else. If it elevated now due to some temporary infectious process, it should not remain elevated. But a biopsy would distinguish between IBD and celiac disease. And remember, the diagnosing of diseases is often not a black and white, cut and dry process. You often have to weigh all the evidence and just go with what is most likely the cause. When tTG-IGA is elevated, the most likely cause is celiac disease. And the gold standard test for diagnosing celiac disease is still the endoscopy with biopsy. But if you decide to go for further testing for celiac disease of any kind, you must not first embark on the gluten free diet.
    • knitty kitty
      I understand your exasperation.  My doctors were totally clueless.  Me?  I couldn't believe it was so simple.  I had studied nutrition before earning a degree in Microbiology because I was curious about what the vitamins were doing inside the body.  It's about giving the body the nutrients it needs to heal.  Read my blog for more of my journey...  Do take the time now to make some changes.  It's a matter of putting on your own oxygen mask first before you do anything else.  I regret I didn't do more to take care of myself first.  It's amazing how quickly ones life can unravel if in poor health. Simple things you can do immediately that will help are: Stop consuming oats, dairy, and corn. Keep a food-mood-poo'd journal so pinpointing problematic foods is easier. No alcohol. Avoid nightshades.  Do cut back on or eliminate processed gluten free facsimile foods.  These are not nutritious.  They are not enriched with vitamins and minerals like their gluten containing counterparts.  They contain saturated fats and excess fiber that can be irritating to the digestive tract.   They are high in simple carbohydrates that promote Small Intestinal Bacterial Overgrowth (SIBO). Do focus on meat, veggies, fruit and healthy Omega 3 fats (olive oil, avocado oil).   Do make stews and roasts overnight in a crockpot.  Make small batches.  Leftovers increase in histamine the longer they are left.   Do talk to your doctor about supplementing with a B Complex and Benfotiamine (a form of thiamine shown to promote intestinal healing).  There are eight essential B vitamins.  They work in concert together like an orchestra, so they need to be supplemented together.  Taking extra thiamine and Benfotiamine have been shown to be beneficial.  Weight loss can be a symptom of insufficient thiamine. I believe you mentioned you were low in some vitamins. Can you tell me  which ones?  
    • Shining My Light
      @trents - sorry, I know that didn’t make sense. I need to get better at rereading the things I write.    The people I know of that have a gluten sensitivity or intolerance have tested negative for celiac. They can’t have gluten of any kind without having a reaction. That to me isn’t helpful. If I reacted to gluten I wouldn’t eat it regardless of it being celiac or not. I’ve come to learn the real issue with celiac is the damage, not the intolerance.    Gliadin Deamidated is another test I’ve seen that I wanted to get done. Also, the genetic testing. HLA-DQ2 and HLA-DQ8. Although my liver levels are not elevated now, I went through a time when they were. I would say maybe 7 years ago. I also had major GI symptoms at that time. They had ordered a EGD then but I chickened out. This makes me even more confused. I would think that if celiac were the cause my liver numbers wouldn’t have improved. Which again makes me think more of IBD being the cause of my TTG levels being elevated.  One thing that would make me motivated above all else is the neurological aspect. I’m still trying to dive deeper into that which has me the most interested. I think GI issues are an obvious symptom, it’s the connection in the rest of the body, particularly brain function that is most intriguing.         
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