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Celiac.com Celiac Disease & Gluten-Free Diet Forum: Im Worried About My Mom - Celiac.com Celiac Disease & Gluten-Free Diet Forum

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#1 User is offline   HelpinOhio 

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Posted 08 March 2009 - 02:27 PM

Im 18 years old and suspect that I have Celiac.

About a year ago my mom told me that she was diagnosed with Celiac Disease when she was younger. Possibly around 25 years ago. Her main problem was just the stereotypical Celiac Disease symptoms, Diarrhea whenever she ate gluten and stomach pains.

When my mom got older she started eating gluten again because it didnt bother her stomach anymore. Supposedly her doctor said she can stop with the gluten free diet if it doesnt cause any symptoms. Based on what I have learned about Celiac Disease, this doctor was very stupid for saying that. I heard that your supposed to go gluten free for life. Even if it doesnt cause any noticeable symptoms it can still damage your intestine and increase your risk of getting cancer a lot. My mom has problems with her tooth enamel, headaches, dry skin, her hair barely grows. She lives a normal life but is not completely together mentally. She also has hypoglycemia and thyroid disease. I believe that all of that is caused or worsened by her eating gluten. Im worried about her. Personally I think that she should not be eating any gluten at all.

What are your thoughts on this?
and what should I do?
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#2 User is offline   ravenwoodglass 

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Posted 08 March 2009 - 03:04 PM

Your right, she does need to go back on the diet. A lot of the issues she is having could well be related to celiac. It used to be thought that people outgrew celiac but that is not the case. While you can't force her back on the diet you can try and educate her. Can you encourage her to come here? There is also a lot out there on the web. The NIH has a lot info. As does the celiac sprue association and the homepage here. Here are a couple links-

Celiac Sprue Association=

http://www.csaceliac...c_treatment.php

National Institute of Health Celiac Awareness Campaign-

http://www.celiac.nih.gov/
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   Gfresh404 

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Posted 08 May 2009 - 12:22 AM

Ravenwood is right, your mom really needs to go back on the diet. Also, explain to your mother that just because she is not experiencing any GI symptoms does not mean that damage is not being done. Many people with Celiac Disease are actually asymptomatic or only have minor annoyances.

She may not ever experience any symptoms but she very well could develop a serious complication from untreated Celiac such as cancer.
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#4 User is offline   lovegrov 

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Posted 08 May 2009 - 05:51 PM

You can't quit the diet when you have celiac. Celiac is for life.

richard
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#5 User is offline   psawyer 

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Posted 08 May 2009 - 06:31 PM

Celiac disease requires a completely gluten-free diet for life. It does not "go away." You can not "grow out of it." If a person has celiac disease, gluten causes damage to the body, even if observable symptoms do not present themselves.
Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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