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Frustrated! Should I Test Or Not?

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Posted 25 February 2009 - 09:19 AM


I went gluten-free about 5 months ago and had an immediate and profound relief from my symptoms, which included almost daily migraines, GI symptoms, and extreme stomach pain.

I identify myself as 'gluten intolorant' and am fine with the dietary restrictions.
A majority of my mother's side of the family have definitive diagnoses of Celiac.
My mother has symptoms that respond to diet, but was negative on the blood test.

People keep telling me I should get tested. My husband's gastroenterologist (DH has Crohns' and for some reason decided to tell his doc my story) insists I go back on gluten and get tested. Friends of ours are all on my case about testing, and now my husband is bugging me about it! Ironically, it was his idea that I 'try the diet' instead of getting tested way back when I first suspected gluten and talked to him about my options - to test or not.

Everyone is driving me nuts and making me feel like I'm not taking care of myself! My thinking is: WHAT will I gain from going through the misery and getting tested? I refuse to do it just to stop the nagging, but it's getting really depressing having people I care about disapprove of my decision. Truthfully, if I tested and it was negative, I would still go back on the diet! I feel like all I will gain by being tested is a new pre-existing condition I can be descriminated against with.

Please tell me what I should do!
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Posted 25 February 2009 - 09:21 AM

WHAT will I gain from going through the misery and getting tested?

Answer this question for yourself. What would you gain?
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Posted 25 February 2009 - 09:52 AM

It really is kind of an individual thing I think, weather to go for the full diagnosis or not. I had been off gluten for 4 months when I finally got to see a Dr. that specializes in it. I wrote down my symptoms before hand and he read them over and said it sounded like celiac to him. I was considering going back on gluten to do the biopsy testing but decided against it. I was feeling so much better off the gluten that I didn't really need any other "evidence" to convince me. Plus the history of other family members with GI diseases and related conditions. It is kind of silly if you think about it. Make yourself miserable for a couple months just so you can be told not to eat something you already know is hurting you. That is assuming you know that already.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul



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Posted 25 February 2009 - 12:16 PM

Of course they think you should do a challenge, they are not the one's who would have to deal with the pain, the D, the fatigue and the risk to a system that has already shown how much it does not like gluten and how much better it feels without it.
It is your body and your decision. You could consider a short 'until I react' challenge if you haven't had enough of them already through cross contamination and the slip ups we all make in the beginning. Your response might be enough to at least get DH on your side.
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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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Posted 25 February 2009 - 12:49 PM

Some questions to ask yourself:
1. What would you do if you got a positive diagnosis? Would it change anything in your life?
2. What would you do if you got a negative diagnosis (because a negative is likely after 5 months gluten-free)? Would you go back to eating gluten or not?
3. Are the answers to questions 1 & 2 worth going back on gluten for?
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Gluten-Free since September 15, 2005.
Peanut-Free since July 2006.

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