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Frustrated!


JessieFree

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JessieFree Apprentice

I had a positive biopsy and am still waiting on the blood test My GI wants me to go gluten-free for 3 months to see if I get better before he diagnoses me even if the test is negative. I've been gluten-free for 2 wks. I thought I was feeling better but I still look pregnant and the gas hasn't let up at all. My stomach went down for a day or 2 (like it has before) but that didn't last. I've been eating the same gluten-free stuff the last 2 weeks. Am I doing this for nothing? I would think these things would have improved by now. Do I have to wait three months to find out if it's something else?


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Guest j_mommy

sometimes it does take awhile to get back to "normal". Are you sure you're not getting cross contaminated or eating a hidden gluten???? Especially if you've been eating them same things and you haven't felt at all better!

Why is your DR waiting for blood tests if you've already had a positive biopsy???? That's usually the "gold standard" for diagnosing.

It took me a couple of weeks to feel better....but now I've felt liek I never have before. THe results are worth the wait!!!

Good luck and I hope you feel better soon!

aikiducky Apprentice

Jessie, it can take adults up to two years for their intestines to heal completely. Two weeks is really a very very short time! If you had a positive biopsy there is little doubt that you have celiac.

I had bloating on and off for the first few months, sometimes it would go down, then I'd balloon up again. I've now found out that I also shouldn't have milk in any shape or form, and nightshades vegetables and legumes also bloat me, though they don't make me as sick as gluten or milk will. I'm feeling really really well right now, after being gluten etc. free for two and a half years.

It's quite possible that you haven't found all the hidden gluten sources in your life...and in the beginning foods that you normally wouldn't have trouble with can be hard to digest for your poor digestive system. Remember a positive biopsy means there was some damage to your intestine, it's no wonder if you get bloated! It takes time to heal.

Don't throw in the towel just yet, ok?

Pauliina

LisaJ Apprentice

Jessie,

If you have a positive biopsy, you DO have celiac disease. Hang in there, it will take a while for you to heal.

And ditto what Paulina said about dairy. Many celiacs are lactose intolerant when first diagnosed. I had the same problem - I was still getting sick and bloated after being gluten free for 2 months, then I finally realized it was the dairy. I was gluten free for about 6 months before I could tolerate dairy again.

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    • 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. 
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      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—
    • trents
      @GlorietaKaro, your respiratory reactions to gluten make me wonder if there might also be an allergic (anaphylaxis) component at work here.
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