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1St Celiac Md Visit


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2 replies to this topic

#1 Hornet

 
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Posted 14 July 2012 - 03:56 PM

I saw Dr Leffler one of the big guns in Boston. Gave a list of all the symptoms I'm having. Not sure what I have. Had a systemic allergic reaction to a drug I've taken 100's of times and everything makes me itch. Have been gluten-free since May which he did not think was very long. He did several blood tests including the genes and wants me to do the camera pill to find out why I am losing iron.
Has anyone had such allergic reactions it doesn't matter what you swallow? Won't have results for a few weeks. Feeling discouraged with so many health issues and need a smarty to put the pieces of the puzzle together. Thanks in advance for any thoughts.
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#2 Lisa

 
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Posted 14 July 2012 - 05:23 PM

I saw Dr Leffler one of the big guns in Boston. Gave a list of all the symptoms I'm having. Not sure what I have. Had a systemic allergic reaction to a drug I've taken 100's of times and everything makes me itch. Have been gluten-free since May which he did not think was very long. He did several blood tests including the genes and wants me to do the camera pill to find out why I am losing iron.
Has anyone had such allergic reactions it doesn't matter what you swallow? Won't have results for a few weeks. Feeling discouraged with so many health issues and need a smarty to put the pieces of the puzzle together. Thanks in advance for any thoughts.

Well, wait and see what the Big Guns say.

Do you have specific questions?
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"Not all who wander are lost" - JRR Tolkien

#3 ravenwoodglass

 
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Posted 15 July 2012 - 04:12 PM

Your having been gluten free since May may very well effect your testing. Also be aware that if they are only checking for DQ2 or DQ8 that you can have celiac or issues with gluten even if you don't have those genes.
Does the diet seem to be helping you? It does take some time to heal so even if you have only seen a small amount of improvement do keep with the diet for a bit and read as much as you can here so you learn about cross contamination and the non-food related sources of gluten.
Ask any questions you need to and let us know how things go with your new doctor. Not all are as knowledgeable about celiac as we would like, even the experts in the field, as more and more is being learned every day.
To answer you questions about allergies before I was diagnosed I seemed to be allergic to almost everything. When tested for true allergies (gluten intolerance and celiac are not allergies) I was allergic to 98 out of 99 things tested for. My allergist said it was because celiac had my immune system in 'hyperdrive' and that many of my allergies would likely resolve. They did.
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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)




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