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carnesfamily9

More Painful Tests

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I'm 36 years old and I'm very frustrated. When my eldest daughter was 2, she had severe constipation and abdominal pain. After taking her to a pediatric GI, she was diagnosed with all the DNA markers for celiac, but her villi were normal. He said just watch her for any GI signs in the future. No need to change her diet. Her constipation resolved with Miralax and she's been fine for 7 years. Three weeks ago, more severe constipation and belly pain. Abdominal xray showed significant constipation. More Miralax. With all the literature I've been reading about possible cancers and other sequalae, we've decided to put her on the diet today. I'm very hopeful she will have complete relief and decrease chances of anything terrible in the future.

Now...no one ever suggested my husband and I be tested or my other children. But since my last child was born 6 years ago, I've had a myriad of symptoms that now I'm beginning to believe my be celiac disease. Joint pain, muscle pain, pain with any deep pressure, fatigue, intermittent numbness in my arms, migraines, a persistent visual disturbance in the left lower field of my left eye, irregular periods, abdominal pain accompanied by nasty diarrhea and gas, insomnia, and dizziness. I've seen my GP, a rheumatologist, an opthamologist, and two separate neurologists. I've had blood tests, evoked potentials, EMGs, MRIs, CTs..blah,blah,blah. Even looking at my list, I think I'm crazy!

Today I saw a new neurologist who just might be able to help me. He's ordered a ton of blood work, including celiac stuff, but still wants me to have another EMG for my intermittent numbness. He thinks I may have MS. I don't believe that, but he's the doc, right?

Also, my 30 year old sister was diagnosed with lupus about three years ago, but has many other symptoms not related to lupus; unexplained anemia, joint pain, muscle pain, deep pressure pain, constipation and diarrhea, premature deliveries, migraines, painful rashes on her skin, Raynaud's phenomenon, and recurrent urinary tract infections. I've read that lupus can often co-exist with celiac disease. Should she also be tested and will any of our symptoms improve on the diet?

You know, we grew up healthy and we're not hypochondriacs. Why am I so afraid being treated like I'm nuts? Why is the medical community so cold and dehumanizing?

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Because they are not taught about celiac and our medicine is controlled by the pharmacutical houses and celiac is controlled by diet not by expensive meds. IMHO before you go through more of the tests they are wanting to put you through, and I have had all and know they are no fun, you should try the gluten-free diet for your family. Why a doctor would tell you to keep feeding your child gluten until they get sick enough to have damage is beyond me. They way the doc put it with my DD was, "she does not have significant damage yet, you could have her keep eating gluten until she does or you can put her on the diet now and avoid the damage". We choose the second option. I hope you do also.


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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Joint pain, muscle pain, pain with any deep pressure, fatigue, intermittent numbness in my arms, migraines, a persistent visual disturbance in the left lower field of my left eye, irregular periods, abdominal pain accompanied by nasty diarrhea and gas, insomnia, and dizziness. I've seen my GP, a rheumatologist, an opthamologist, and two separate neurologists. I've had blood tests, evoked potentials, EMGs, MRIs, CTs..blah,blah,blah. Even looking at my list, I think I'm crazy!

Hey cool! Me too! Except I've seen two rheumatologists and one neuro. gluten-free helped the muscle pain and headaches. The numbness is going away. I've started taking lots of calcium and vitamin D to deal with muscle cramps (too early to know if it's helping). And I'm still working on the period thing.

It's know it's really frustrating. Hang in there.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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