Would You Get Tested?
Posted 08 May 2008 - 04:58 AM
Should I do it? Is it even worth it at this point? Has anyone ever had a 'verbal' diagnosis from a very understanding doctor? Am I ignoring another horrible possible disase?
Or should I just LIE to all of those well-meaning folks and say I've been diagnosed so that they'll leave me alone?
Posted 08 May 2008 - 05:08 AM
Now you could find a doctor who knows about Celiac and Gluten Intolerance and he/she might just diagnose you from the diet reactions.
Gluten sensitive discovered by diet change,April 2006.
Posted 08 May 2008 - 03:59 PM
Posted 08 May 2008 - 04:33 PM
You might also consider being tested by Enterolab, they do fecal antibody testing and can also do genetic testing for the celiac genes. You doctor might diagnose based on the results of those tests and dietary response.
"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)
Posted 08 May 2008 - 05:50 PM
I feel so wonderful right now that I can't even imagine having to go through that. I think I'll take your advice about telling my doctor and maybe save a few people after me from the 'metamucil' prescription. ugh.
I will check out Enterolab too, so I can blame the parents later!
Posted 08 May 2008 - 06:15 PM
I was never officially diagnosed, but know that gluten is terrible for me. I am a very blunt person, beating around the bush is foreign to me. So, I tell people straight out that I can't eat anything containing gluten, and will not eat anything questionable.
I have no qualms when it comes to asking relatives to let me look at the ingredients of whatever spices, sauces etc. they have put into their cooking. If it is not safe, I won't eat whatever the questionable food is. I couldn't care less who might be offended. I refuse to be made sick by anybody's cooking.
Why do your friends and family want you to get tested? Who's body is it? Tell them that you are finally well, after being quite sick for a long time. You have no intentions of getting sick again only to confirm what you already know, namely that gluten makes you ill.
Your doctor had her chance of figuring it out and blew it. Why do people think that you have to be diagnosed by one of those doctors to justify being on the gluten-free diet? I think common sense is better than most doctors, especially when it comes to intolerances and diet. Doctors know precious little about nutrition and intolerances because very little time is spent on those subjects in medical schools.
The pharmaceutical companies control the medical schools, and they don't want people to be diagnosed with illnesses that don't require medication.
Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.
Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma
Posted 08 May 2008 - 06:31 PM
Very well said, Tom. I'm beginning to feel much the same way as you-that if you feel better eliminating gluten it makes sense to just pay attention to how your body responds. I am very weary of the unending search for a doctor that "gets it". Wish I could pin point what hidden food additives-especially at restaurants cause reactions. Any thoughts?
Unfortunately I still believe the majority of the doctors out there don't understand the cause/effect of gluten intolerance enough to make a diagnosis based on diet response. That said I for one would like to have known that a diet change was a possibility for my years of symptoms. Even if I might not have gone or stayed on the diet at least I would have known the doctor was thinking it (Celiac) was a possibility. The only way I think real progress will be made as far as early diagnosis and treatment is if more people like yourself prove through diet response that your problem is related to something yhou are eating. I for one applaud anyone who has the knowledge and willpower to give the diet a chance and if successful be satisfied with the results and get on with their life. Whether you spend a lot of money on testing or "figure" it out for yourself the treatment is still the same. Good luck.
Posted 09 May 2008 - 06:22 AM
Gluten free 3/08
Negative blood work/positive endoscopy
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