To Test Or Not To Test

[megyates]

Hello, I've been sick since September 2007, I was diagnosed in December of 07 with having food allergies, never having any kind of allergies before I thought that this was really interesting. Nevertheless I did everything I could to avoid milk, eggs, wheat, fish and shellfish. Milk and eggs being the main culprits behind my violent reactions. I never noticed a reaction specifically to wheat so I continued to eat it since it is so hard to work out of a diet. I went to an allergist finally in September 08 who told me that he didn't believe I was allergic to fish or shellfish but to abstain from wheat, milk and eggs entirely. Immediately after following his rules, my everlasting stomach ache was gone and I felt like a new person! When I went back 2 weeks later he told me that I ought to look up celiac disease and see if any of it sounds familiar or like I might have it. He told me he's not a specialist but that it sounded like that's what I have. That night I accidentally had sour cream and waited impatiently to throw up all night and I never did. I looked up celiac disease just then and realized that when all of this started I was able to take a lactaid with milk and not feel the effects and after a while it stopped helping. All of my symptoms matched those of celiac disease, my father has diabetes type 1 and my mother has thyroid disease and fibromyalgia and I have fibromyalgia, (these types of disorders are not uncommon with my family- unfortunately) my sister has been diagnosed with IBS and my dad was diagnosed in the '50's with a wheat allergy. I talked to my family practitioner (a navy doctor) and she said she didn't see any reason to put me through the pain of testing since I would have to be eating gluten in order to test accurately. Well now I am about 2 months into this gluten free diet and I've accidentally eaten gluten and I'm miserable. I obviously need to see a specialist to help me work through this but I don't know what the next step is and if I really need to test. Any advice or help would be greatly appreciated, I don't know anyone that has this disease so I'm feeling rather alone with it. Thanks so much.

Megan

[mushroom]

Hello, I've been sick since September 2007, I was diagnosed in December of 07 with having food allergies, never having any kind of allergies before I thought that this was really interesting. Nevertheless I did everything I could to avoid milk, eggs, wheat, fish and shellfish. Milk and eggs being the main culprits behind my violent reactions. I never noticed a reaction specifically to wheat so I continued to eat it since it is so hard to work out of a diet. I went to an allergist finally in September 08 who told me that he didn't believe I was allergic to fish or shellfish but to abstain from wheat, milk and eggs entirely. Immediately after following his rules, my everlasting stomach ache was gone and I felt like a new person! When I went back 2 weeks later he told me that I ought to look up celiac disease and see if any of it sounds familiar or like I might have it. He told me he's not a specialist but that it sounded like that's what I have. That night I accidentally had sour cream and waited impatiently to throw up all night and I never did. I looked up celiac disease just then and realized that when all of this started I was able to take a lactaid with milk and not feel the effects and after a while it stopped helping. All of my symptoms matched those of celiac disease, my father has diabetes type 1 and my mother has thyroid disease and fibromyalgia and I have fibromyalgia, (these types of disorders are not uncommon with my family- unfortunately) my sister has been diagnosed with IBS and my dad was diagnosed in the '50's with a wheat allergy. I talked to my family practitioner (a navy doctor) and she said she didn't see any reason to put me through the pain of testing since I would have to be eating gluten in order to test accurately. Well now I am about 2 months into this gluten free diet and I've accidentally eaten gluten and I'm miserable. I obviously need to see a specialist to help me work through this but I don't know what the next step is and if I really need to test. Any advice or help would be greatly appreciated, I don't know anyone that has this disease so I'm feeling rather alone with it. Thanks so much.

Megan

Hi Megan, and welcome to the forums.

Gluten intolerance can be a rather lonely experience and a difficult one to make decisions about. It all comes down to an individual's needs. A goodly number of the folks here, myself included, have no official diagnosis and feel no need of it, because the treatment is the same regardless--avoid gluten. Others feel they need the diagnosis or want to make sure nothing else is going on so get the testing done. But so many of us cannot bear the thought of going back to gluten consumption, especially when the testing so often turns out negative anyway (no, it is not 100% reliable, either the blood test or endoscopy). And unfortunately, when you go back to gluten after being off it, you do react more violently than before.

If you will check around the forums a bit you will find a lot of discussion on whether to test or not, and others will probably reply here too. It will all come down to what you are comfortable with and whether or not you can face going back to another three months of eating gluten to try to ensure the tests are accurate (you will already have healed a lot in the last two months, and need to be eating gluten for that long for the tests to be accurate).

Good luck with your decision-making and feel free to ask more questions.