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Day 2 Gluten Free - feeling super sick?!


JenDF

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JenDF Newbie

Hi all, I'm new here and have been learning a lot from everyone.

I am in the early stages of being diagnosed, just got a positive antibody test this monday after feeling progressively terrible for the past 3 years. Some background, I have had very mild GI symptoms forever, nothing I ever bothered to see a Dr about. I wouldn't have ever thought celiac but I've been having progressively worse neurological symptoms (tingling fingers, dizzy spells, fatigue, brain fog) and my inflammation marker blood test came back super high so my Dr ran a bunch of tests thinking Lupus or something but now it looks like Celiac.

My Dr suggested I start a strict gluten free diet asap so I began yesterday morning. Felt fine all day, but now this morning I've woken up feeling truly terrible. I had very mild stomach problems before but now I'm having massive cramps and severe diarrhea. I'm incredibly dizzy and nauseated and feel like I need to lay down.

Is this normal? Should I stick with this? I'm kind of at a loss, I expected at least my stomach to feel a little better, not significantly worse!

Thanks for any advice!

 

 


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bartfull Rising Star

Is your doctor going to order a biopsy? If so you need to stay on gluten until that is done.

But to answer your question, yes it is normal to feel worse before feeling better. Gluten withdrawal is a real physical thing. Headaches, dizziness, raging hunger, mood swings, and a general uneasy feeling almost as if you are expecting something really bad to happen. That usually lasts  few weeks.

It took a long time to do the damage so it's going to take a long time to heal. You will find yourself going back and forth between feeling better and then feeling worse again for a while. It's best to stick to plain, simple whole foods at first. Cook your veggies so they are easier to digest and try to avoid gluten-free substitutes for a while. The more ingredients in a food, the better the chance of something making you feel sick, even if it IS gluten-free.

I was wondering if you could post which tests you had, the results and the ranges, so some of the folks here who are good at interpreting the tests could chime in.

And by the way, welcome to the forum! :) Go check out the Newbie 101 thread pinned to the top of the coping section. You'll learn a lot about the diet.

JenDF Newbie

Thank you bartfull! I'm at least glad to know this is normal. Also glad you posted hunger, I'm not a huge eater and just ate half a chicken... :)

I don't have the lab results yet. I see my Dr in two days, she just called to discuss my tests and said that my antibody test was positive but didn't give me hard numbers. I do know my C-reactive protein was 11.9. I'll post all my results as soon as she gives them to me on Friday.

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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. 
    • 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—
    • 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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