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Help -- Newly Diagnosed


Jim2616

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Jim2616 Newbie

I an 54 and was diagnosed with celiac disease about one month ago after years and years and years of stomach problems. My question is how long until you guys started feeling 'normal' ..... whatever that is?!?!? The diet is helping and I think I've been very very careful. But, I still have bad days although more good days than bad days. I keep telling myself that this is a long healing process and the good days will happen more and more often. Thanks for your thoughts and help. Jim


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Lisa Mentor

Hi Jim and Welcome!!

Healing time can vary depending on the extent of damage, length of time undiagnosed and diligence to the diet. We all are different.

I have found that I reacted to every food, gluten free or not, until some healing was allowed to take place. Your response to the diet can take several days, several weeks or even several months. It CAN take up to a couple of years for a complete recovery.

As you know, the diet can be tricky and the learning curve is steep. If you need help dealing with this new lifestyle, please feel free to ask. This is a great site. Take a walk around.

Soon, this will become second nature.

ShayFL Enthusiast

In a month's time on the diet, your experience sounds similar to many on here. You are on the right track. Stay the course and over time hopefully you will not even remember what those "bad days" were like. :)

ang1e0251 Contributor

Welcome, Jim. I am 50 years old and can relate. I'm coming into my first year anniversery gluten-free. I found dramatic improvements very quickly on the gluten-free diet. Some symptoms tooks weeks/months to clear up, though. It will keep getting better and better. I noticed my bad days were my own fault, being too lazy to read a label, assuming that food is ok because the brand I use at home is. When you feel bad, look back at your food & try to locate the culprit. A food/symptom diary is helpful for awhile.

Green Eyes Rookie

Hello Jim and welcome to the gluten free world.

I have found the best defense is a good offense. Take time to read as much as you can. There is good information on this site as well as good food ideas.

My issues in the beginning were making sure all my medication and vitamins were gluten free.

Jennifer

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    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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