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Celiacs without Gut Pain


Blvr

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Blvr Rookie

I'd like to hear from those who don't feel bad when they eat gluten.  I have had a positive biopsy and blood test for Celiac Sprue.  My only symptom was anemia for which I now take iron.  I find it very difficult to follow a gluten free diet.  I am a senior citizen and think about the quality of life that I have left.


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pikakegirl Enthusiast

I am 50 and was diagnosed 11 years ago as Silent Celiac. Fisrt i watched my undiagnosed father suffer from all the multisystem diseases that happen when eating gluten with Celiac. He passed of cardiac arrest at 62. I must say that it was hard to change my eating i  our culture. That said my health is better than i can recall. I did not have bad GI effects but it manifested in malnutrition with obesity, high cholesterol, high CRP, sclerosis of my aorta, skin issues, sinus infections, fibromyalgia like muscle pain, gallbladder failure, adrenal fatigue, thyroid damage and kidney stones. Things were never tied together before my diagnosis. I do not suffer any of those things now that i eat organic, non processed food. I am not a good cook and i have found quick easy one ingredient recipies. I keep food frozen and in my frig at all times so there is always something to grab. Also always carry freeze dried fruit and gluten-free nuts with me. Its about how i age and how imcan stay off all the meds my dad was in and out of the hospital tha drives me. I wish you well with this life changing challenge.

cyclinglady Grand Master

I was diagnosed five years ago.  I did not have GI issues, but had anemia which resolved on a gluten free diet.  

Is the diet worth it?  Yes, I actually feel much better.  Things I attributed to age have resolved.  If I had been diagnosed earlier, I might have prevented my other autoimmune disorders from developing.  I might have prevented my vertebrae fractures from osteoporosis at the age of 50.  Please ask your doctor for a bone scan!  

The diet just takes time to learn and adjust.  You can do it!  

Celiac disease damages you systemically and that is a fact.  I think you will be surprised how much better you can feel on a gluten free diet.  I know I want to retire and enjoy myself!  

tessa25 Rising Star

What foods do you need gluten free equivalents for?

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    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
    • trents
      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 
    • Gigi2025
      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
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