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Not Getting Better Please Help

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Posted 21 November 2012 - 10:58 PM

i have been eating gluten free for 9 months now and i am very strict , i have not got better and i am literately going insane , i dont mean to sound like im whinning but i cant take it anymore. i have pain in my stomach everyday. has anyone else experienced this
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Posted 22 November 2012 - 05:18 AM

Welcome James. Some of us have other intolerances. For me stomach pain is linked to soy and is releived with Pepto Bismal liquid. Might not be the case for you though.
Have you spoken with the doctor who diagnosed you about your continued problems? There may be other things in addition to celiac that need to be ruled out. Are you taking all the precautions we need to take with our food? We have to be very careful about cross contamination and make sure we are not doing things like sharing toasters, butters, condiments etc with gluten eaters. We need to replace strainers, wooden utensils, toaster and need to be very careful to make sure that if we eat out we are eating from a gluten free menu at a place that knows to take all the precautions we need to take.
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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)

#3 dilettantesteph


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Posted 22 November 2012 - 05:21 AM

What do you mean by very strict? Are you eating a lot of processed foods? You could try a produce and unprocessed meat only diet. Are you still eating dairy? You may have lactose intolerance, many do especially at the beginning.

I didn't get better eating gluten free initially either. I tried eating only processed foods made in dedicated facilities and that helped quite a bit. I did better still when I eliminated all of that and went to produce and meat only. I was able to add back dairy. Now I need to be even more careful than that about cc. I am a super sensitive celiac, sensitive to very low levels of gluten.

I keep careful track of what I eat and what symptoms I get with a food/symptom journal. That way I have found foods which I can eat which don't give me any symptoms.

Have you been to the doctor? There are other conditions which you could have and your doctor could advise you about that.
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#4 cavernio


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Posted 22 November 2012 - 07:20 AM

Dairy is definitely a thing to stop if you haven't already, seeing as you have pain in your stomach and that's a standard symptom of lactose intolerance. If that doesn't remedy it within a week or so, I would go to a doctor. There's a lot more than just celiac that causes stomach pain.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy




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Posted 23 November 2012 - 08:40 AM

If you are certain that you've eliminated cc, you could look to other causes for your pain. Crohns, colitis, and hashimoto's can cause stomach issues, as can more rare AI disorders. It could be something to check into.

Best wishes. :( I hope you feel better soon.
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ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012


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