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razberrykisses Newbie
razberrykisses
Posted

So after my mother being diagnosed celiac 2 years ago we all wondered if my sister and i have it as well. I do not know why i waited so long to figure things out. I guess mostly because i had no symptoms. that was until i was pregnant. I was diagnosed with a sludge filled gallbladder at the age of 20. I had it removed soon after. I was told that it would take up to 6 months for my diarrhea to ease off. It has been a year and a half and things have just gotten worse. I Have oily yukky poops and am at the point where i have horrible hemroids because of it....at the age of 22. I have also randomly developed arthritic like symptoms and eczema which i have never had before. I also am always tired and have experienced multiple miscarriages recently, and have lost about 10 lbs in 2 months....and diagnosed lactose intollerant. If this isnt celiac disease i think i am just dieing.

My OBGYN thinks that i do have celiacs or another auto immune disease, and wants to run blood tests in two months. Today i just got fed up with the pain and the crap so i started a gluten free diet. My doctor doesnt believe that the gluten tests that my insurance will cover are very accurate and has told me to try the elimination diet. at this point i dont know if i should just go gluten free and see how i feel or what. So tired, and frustrated.

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mushroom Proficient
mushroom
Posted
So after my mother being diagnosed celiac 2 years ago we all wondered if my sister and i have it as well. I do not know why i waited so long to figure things out. I guess mostly because i had no symptoms. that was until i was pregnant. I was diagnosed with a sludge filled gallbladder at the age of 20. I had it removed soon after. I was told that it would take up to 6 months for my diarrhea to ease off. It has been a year and a half and things have just gotten worse. I Have oily yukky poops and am at the point where i have horrible hemroids because of it....at the age of 22. I have also randomly developed arthritic like symptoms and eczema which i have never had before. I also am always tired and have experienced multiple miscarriages recently, and have lost about 10 lbs in 2 months....and diagnosed lactose intollerant. If this isnt celiac disease i think i am just dieing.

My OBGYN thinks that i do have celiacs or another auto immune disease, and wants to run blood tests in two months. Today i just got fed up with the pain and the crap so i started a gluten free diet. My doctor doesnt believe that the gluten tests that my insurance will cover are very accurate and has told me to try the elimination diet. at this point i dont know if i should just go gluten free and see how i feel or what. So tired, and frustrated.

Hi, and welcome to the forum.

It sure sounds like you are in the right place--your symptoms are littered all over this forum. Why on earth won't he do the blood tests now, instead of in two months. This is your life that is passing you by while you are suffering. Sure, it's no skin off his nose, but come on--just ask him to order the complete celiac panel now so you don't have to guess. What tests won't your insurance cover? And would it be worth your peace of mind to pay for the rest yourself? If you go off gluten now, you can't be tested because you will already have started to heal and the tests will probably come back negative.

Now the tests may not be important to you--there is a lot of discussion on here about testing or just starting the diet. Myself, I just cut out the gluten, but in doing so precluded any chance of being diagnosed, because I would never intentionally gluten myself just to get tested. And it requires 2-3 months of gluten eating for the blood testing and biopsy to be valid. And then there's that nasty little fact that for most, once they have been gluten free they react more strongly to gluten than before....

So you will have to make up your mind. On the other hand, lots of tests do come back negative but the patient's symptoms clear up on the diet anyway. In oher words, there are many false negatives with the test, which is perhaps what your doc was indicating. If he can't do the full panel then the chances of a negative are much higher.

By the way, pregnancy is often a trigger for the development of celiac, and miscarriages are common in celiacs.

Anyway, come back if you have more questions you want answered, or if you have answers to some of mine. Ask your OBGYN what tests your insurance will cover and see if you can find out the cost of those it will not and decide if it is worth it to you personally to have the full testing.

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