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#1 SAHM2one

 
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Posted 19 August 2008 - 04:47 PM

Here are my symptoms.

Seizures as a child
Anemic since birth
low ferritin
low B12
intestinal bleeds until I had my gastric bypass
severe stomach pains
told I had IBS
told I had fibromyalgia
canker sores
joint pain
red blotchy face
Get sick very easy
always tired
leg cramps
irritable
depression
headaches
can't sleep

I had both my gall bladder and appendix removed because of severe stomach pains. I have had an intestinal blockage and a gastric bypass also.

i was tested today for celiac disease by my request and will be going to Duke Hospital in NC on Thursday to see a Hematologist because of the anemia.

In your opinion does this sound like it could be celiac disease to you??
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#2 darlindeb25

 
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Posted 20 August 2008 - 02:04 AM

Your symptoms fit, it's great you have been tested, you will soon know for sure. Celiac's are foten diagnosed with several other issues before the link to celiac is even thought about. I wish they would think of it first, rule it out, then go on...that would make things so much easier.

Good luck with your tests!
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#3 ravenwoodglass

 
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Posted 20 August 2008 - 03:49 AM

Sounds like a good possibility. Do remember that AFTER you have done all the testing you desire to do that no matter what the results you should do a dietary trial of the diet to see if it helps. This should be done no matter what the test results say, there are many false negatives on testing so do give the diet a shot. Just be sure to wait until after testing is done to try as the gluten-free diet will impact the testing results. The diet will not effect test results for any disorders other than celiac so if they tell you the celiac tests were negative you have nothing to lose with the trial but the pain.
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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)

#4 SAHM2one

 
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Posted 20 August 2008 - 04:59 AM

Thank you. I have started to already look into a gluten free diet. Once I have been tested ,and if I am positive my son has been tested, then my family is going gluten free no matter what.

I just ate a bagel and 5 minutes after I ate I was in the bathroom. Since I started to pay attention to what I eat, I notice that this happens a lot after I eat foods that are high in gluten.

Should have my blood results back tomorrow or Friday.
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#5 floral

 
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Posted 27 November 2012 - 01:15 AM

Just an FYI...only 30 percent of people with celiac get a positive test. Dr. Peter Green states this in CELIAC DISEASE A HIDDEN EPIDEMIC. Granted the book is twenty years old but I don't think things have changed much. People thought that Celiac disease was a rare disease but I think it's just rarely diagnosed. I recently went to a dinner and three people sitting at my table alone all had Celiac disease. What are the odds of that? I believe it's really gotten to epidemic proprotions but I guess that's another subject altogether.
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#6 kareng

 
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Posted 27 November 2012 - 05:29 AM

Just an FYI...only 30 percent of people with celiac get a positive test. Dr. Peter Green states this in CELIAC DISEASE A HIDDEN EPIDEMIC. Granted the book is twenty years old but I don't think things have changed much. People thought that Celiac disease was a rare disease but I think it's just rarely diagnosed. I recently went to a dinner and three people sitting at my table alone all had Celiac disease. What are the odds of that? I believe it's really gotten to epidemic proprotions but I guess that's another subject altogether.


FYI, The Op hasn't been on this forum in 3 years
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