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Celiac.com Celiac Disease & Gluten-Free Diet Forum: In Need Of Encouragement, Stories - Celiac.com Celiac Disease & Gluten-Free Diet Forum

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In Need Of Encouragement, Stories esp. from those who healed slowly Rate Topic: -----

#1 User is offline   OliveBranch 

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Posted 18 November 2009 - 06:23 AM

Hi all,

I'm at four months gluten-free, and for the first three months I felt a steady, slow improvement in my health: my energy began to improve, rashes began to heal, my breathing improved, gas improved--all slowly but surely. However, in the last month, though I have been even more strict about my diet (having eliminated many potential problem foods, added digestive enzymes and probiotics), everything has gone downhill. It started with a period of extraordinary insomnia, though I seem to be sleeping well again now. I also have been losing weight, feeling weaker, foggier, and achier, and looking and feeling more and more malnourished (despite many gluten-free vitamin supplements).

Anyway, I'm not really looking for advice concerning my own situation, but rather stories from others who have had similar experiences, if there are any. I get discouraged when I read of people who suffered from symptoms like mine, but then were completely healed in a month or two. I was sick for two years before going gluten-free, so the damage might have been extensive, but I don't know. I'm also going to keep looking into other possible sources for my ill health, but all my symptoms seem to match celiac so well...

So, I'd love to hear from any slow-but-successful healers out there.

many thanks!
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#2 User is offline   ravenwoodglass 

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Posted 18 November 2009 - 09:47 AM

I saw some things that improved quickly but other took longer to resolve. My constant D was actually gone within a week, except for the times that I got glutened early on. Migraines were the same but arthritic pain and balance issues took much, much longer with both being better at six months but not totally resolved.
One thing I noticed was you said you were doing good until you added in the digestive enzymes and probiotics. Might I suggest that perhaps there is something in one or the other that your body doesn't want. You may want to consider dropping them and see if it helps. Also check the ingredients of your gluten-free vitamins. Some that are labeled gluten-free contain barley and or wheat grass, that really isn't safe for us even though it is considered by some to be gluten-free.
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
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#3 User is offline   OliveBranch 

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Posted 18 November 2009 - 02:55 PM

Thanks so much for your response, ravenwoodglass. It's good to hear more of your story (I have noticed your extensive signature on a number of occasions). I am leaving out the enzymes and probiotics for the moment, but I don't really think they are my problem--my downturn occurred significantly after starting both of them--but you never know. I'm keeping close watch of everything, though sometimes I think my extreme paranoia may be doing me more harm than good at this point! I am also investigating my makeup more closely (I replaced my hair products long ago)--maybe some tiny amount of gluten is slipping in there.

Anyway, I really appreciate your writing, and I hope others will share stories as well.

View Postravenwoodglass, on Nov 18 2009, 12:47 PM, said:

I saw some things that improved quickly but other took longer to resolve. My constant D was actually gone within a week, except for the times that I got glutened early on. Migraines were the same but arthritic pain and balance issues took much, much longer with both being better at six months but not totally resolved.
One thing I noticed was you said you were doing good until you added in the digestive enzymes and probiotics. Might I suggest that perhaps there is something in one or the other that your body doesn't want. You may want to consider dropping them and see if it helps. Also check the ingredients of your gluten-free vitamins. Some that are labeled gluten-free contain barley and or wheat grass, that really isn't safe for us even though it is considered by some to be gluten-free.

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