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razberrykisses

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razberrykisses Newbie

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
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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    • trents
      I would say two things and then I'm done. Many celiacs have been misdiagnosed for years with IBS. Testing for celiac disease requires regular and significant consumption of gluten for weeks/months in order to be valid.
    • RMJ
      Can the rest of your household eat the food with gluten instead of getting rid of it? Can you create one shelf, or partial shelf, for your new food in the pantry, in the fridge and in the cabinets as a start? My husband is not gluten free so we each have a cabinet, and separate shelves in the fridge. If we have to share space the gluten free foods go on the upper shelves so crumbs with gluten can’t fall onto them. Good luck!
    • The Logician
      Thanks for the advice, if my sensitivity comes back i’ll do that but I am 74, in good health for my age and probably have been sensitive to gluten for over 30 years the beginning of which I didn’t even know or suspect It was gluten. I’m seen by my doctor every three months with fasting labs, he knows I avoid gluten and has never suggested I should be concerned. It is quite possible a doctor did those tests on me 30 years ago, I just don’t remember, if they did and they were negative that’s why I wouldn’t remember. If you are interested I’ll keep you posted, but from what i’ve read there is no cure for genetic celiac disease and right now I’ve never felt worse than diarrhea eating wheat or better than I do now eating wheat. If there is no cure I doubt my episode with an antibiotic is the cure which means I don’t have celiac. This antibiotic may be a cure for sensitivity however….i hope.
    • trents
      Diarrhea is a classic symptom of celiac disease and may be the only symptom many people experience until damage to the small bowel lining becomes severe enough to spinoff other health issues. There are many with what we call "silent" celiac disease whose symptoms are so minor or occasional like yours that they blow them off. The only way to distinguish between celiac disease and NCGS (Non Celiac Gluten Sensitivity) is to get tested. I strongly recommend that you request your doctor to run these two blood antibody tests: total IGA and tTG-IGA. The antibiotic seems to have put you into some kind of remission at the present time but that may not last.
    • The Logician
      Not that I can remember but my reaction has never been more than diarrhea and I probably ate a lot of wheat products for years not knowing I was sensitive to it. Dr. never tested me because he attributed it to IBS. 
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