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Please Help - No Doctor Will

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I am a mother of a 21 year old daughter who has celiac. She was diagnosed at the age of 2 and has been on a strict gluten free diet since then...until she went off to college. She found that she could cheat on the diet and not feel sick - so she cheated on the diet in little ways (like eating soy sauce with wheat). Well, she started to experience issues with her arms and legs. In her left arm she has a spot above her elbow that sends out pain that travels up and down her arm. At one point it was so bad that her fingers were experiencing spasms. No one can touch her calves without severe cramping occurring, and at times she can't wear shoes because her feet are so tender - especially the top of her feet.

We have had blood tests, scans, and seen a neurologist and no one can help. We did see an acupuncturist and she saw that her problems all stem from her small intestines,but she is just giving Tiffany massages to do on her calves.

She has returned to a strict gluten free diet for about 6 months.

Has anyone experienced this?

Does anyone know what is wrong or what we need to do?


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Celiac.com Sponsor (A8):

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She has to stop cheating on the diet first of all. Even the smallest amount will keep the antibodies active. If she is on a meal plan at school do check to make sure they are able to safely feed her. If not the school may let her opt out of the meal plan and may even be able to accomodate her with living quarters where she can have her own kitchenette. My DD's school let her into senior housing her freshman year to accomodate her needs.

She may find some sublingual B12 and calcium and magnesium supplements may help with the cramping and help the nerves repair sooner.

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)

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 in time with proper diagnosis of Celiac November 2002

 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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