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When To Expect What


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10 replies to this topic

#1 Em314

 
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Posted 11 December 2012 - 04:51 AM

Only about a week and a half in with going gluten-free. Still having some stomach upset; I feel like it's already a little bit better but I may be imagining it. GI symptoms (including/especially pain) have been one of my primary issues.

Anyway, my question is at what point should I switch from being patient to starting to suspect there's still gluten in my diet somewhere? I understand healing takes a long time but also don't want to ignore a problem if there is one.

Seems like some people have dramatic results almost instantly, but I'm not sure if that's the norm. Seems a little unrealistic for that to happen for me because there is definitely damage to my intestines (biopsy confirms this), which my doc thinks will take at least half a year to fully heal.
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Diagnosed celiac December 2012 (bloodwork + endoscopy). Gluten-free since.

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#2 love2travel

 
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Posted 11 December 2012 - 01:02 PM

My doctor told me it would take up to two YEARS for full healing. That was 1.5 years ago (time has flown!). After eating gluten I never did feel sick at all. I am not about to cheat now to see what happens, that is for certain. Many people, upon accidental glutening, feel worse than they did before. It seems with many that the longer one is gluten free the worse the reactions become. Each person heals at a different rate. Some do feel far better very quickly; some take ages so it varies widely. Hopefully you are not imagining feeling better! It is possible that you really are. Sure, healing can be slow, but many symptoms can improve quickly. Hope that is the case with you! :)
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#3 Em314

 
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Posted 11 December 2012 - 04:16 PM

Thanks love2travel. That's about what I thought, and I do think I am already noticing a little difference, anyway. I have not (knock wood) yet had really extreme pain since going gluten-free, and prior it was happening at least once a week. So even if that's the only major difference for awhile, that would still be a pretty big deal for me. :)
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Diagnosed celiac December 2012 (bloodwork + endoscopy). Gluten-free since.

#4 1desperateladysaved

 
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Posted 15 December 2012 - 06:41 AM

I am 6 months gluten free. I felt immedietly better upon going gluten free. Then I began suffering incidents of cross contamination, mistakes and possibly withdrawl symptoms. I discovered other food intolerances and nutrient absorption problems. I haven't had just a picnic, but my highs seem higher. One doesn't always have a smooth course of a hill, but if you stay headed in the right direction, you should go up.

Get well, stay well, as soon as you can.*** If you it any snags, just ask.

Diana
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#5 nvsmom

 
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Posted 15 December 2012 - 08:47 AM

I found my reaction to lactose became more obvious after going gluten-free. It caused me the same sort of pain... could it be another food sensitivity like milk causing the problem?

Good luck! I hope you feel better soon.
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#6 DavinaRN

 
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Posted 18 December 2012 - 08:21 AM

I'm eight weeks gluten free, except for accidents, the change I noticed immediately was I was no longer sicker after eating than before I ate. Looking back over the eight weeks, I see less body aches and headaches, more regular bowel patterns, a little more energy. Hoping that energy level continues to improve :)
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Endocrinologist offered referral to GI if I needed formal diagnosis to follow the diet, otherwise just pass on wheat, barley & rye
and save my money

#7 GFreeMO

 
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Posted 18 December 2012 - 08:56 AM

Em314 - I have been gluten free for about the same time as you and am feeling the same way. I think that it's just going to take us several months to feel better. I could have written any of the above responses myself.
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#8 shadowicewolf

 
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Posted 18 December 2012 - 09:21 AM

1.5ish years later and i'm healthy as a horse when i don't catch a cold :)
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#9 Em314

 
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Posted 22 December 2012 - 12:19 PM

Thanks guys.

I think I'm noticing some little improvements here and there- energy, pain, bloating- but there's a ton of room for improvement. I strongly suspect stress and acidic food are keeping these "symptoms" more present than they'd be otherwise. (I can fix the acid issue/WIP; stress I do the best I can to minimize but have a bit less control over; I suspect it will be reduced when the holidays are over with.)

One thing I can't seem to easily find (and I have looked) is info on which of the celiac symptoms are caused by gluten (in which case, I'd expect an immediate improvement), vs. which are caused by having a damaged digestive system (in which case, I'd expect a more gradual improvement over time). I know everyone's body is different and even having that knowledge won't tell me how I'm going to feel on what timeline, but I would like to know what info is out there. I may start a thread about it if nobody replies in this one. EDIT: I went ahead and made a separate thread for this question.
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Diagnosed celiac December 2012 (bloodwork + endoscopy). Gluten-free since.

#10 Em314

 
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Posted 12 January 2013 - 11:33 AM

One month later- energy overall better, head clearer, but stomach issues are... improving, but still there. I'm as sure as it's possible to be that it's not gluten... I think I'm in that fun phase where I find out what my stomach is sensitive to other than gluten. And I'm pretty sure some of it is that I did come back as having intenstinal damage, but I'm not sure how much. It's frustrating.
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Diagnosed celiac December 2012 (bloodwork + endoscopy). Gluten-free since.

#11 Em314

 
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Posted 29 March 2013 - 08:57 PM

Frustrated again.  I had whole week straight pain-free in early feb.  A little pain popped up, then over a month almost entirely pain-free.  Thought I was in the clear.

 

This entire week:  Increasing pain, especially later in the day, worse as the week as progressed.  And bloating.  Also, headaches, which I've never been prone to.  Pain is in my stomach and creeping up my damn throat right now.

 

Not only are there no sources of potential gluten I can think of, there's also nothing NEW in my diet, to boot (I've tried thinking of anything and everything- nothing's changed this week, or immediately before it- I keep a food diary, I would know- only things that flux are timing and quantity).  I am eating the same stuff I was eating when I had that good long chunk of not-pain.

 

Other possible culprits:  Stress (which has indeed increased), increasing sensitivity to sweeteners as my insides heal up, earting too close to sleep.  Dehydration?  God, I don't know.  I am back in that frantic place of not knowing and desperately needing to.

 

I had ongoing issues with energy up and down; my guess continues to be low blood sugar, for that.  Has some slight issues with nausea, before this week- very mild, just someties would feel sort of queasy.

 

WHAT THE FRICK??????  I thought I was DONE with this.  =(


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Diagnosed celiac December 2012 (bloodwork + endoscopy). Gluten-free since.




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