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upwitht21

By upwitht21
in Coping with Celiac Disease

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upwitht21 Rookie
upwitht21
Posted

Hi everyone!

I have been lurking and reading everyone's posts and decided it was time to finally introduce myself. I was diagnosed about a month ago with celiacs by blood test, I opted not to do the biopsy as my levels were high enough that I was convinced. I am still in a bit of shock over it as I have family members with it and I'm don't even have close to the same symptoms. (totally clueless how many symptoms there are) my biggest complaint was I had chronic bone pain, a day didn't go bye that I didn't hurt after diagnosis I started reading and realized I have loads of symptoms! From fertility problems to brain fog....geez who knew!

My oldest child (he's 9 and has down syndrome) was also diagnosed with in a week of me so the changes in our house were quite dramatic. This site has been such a huge blessing and the information here is amazing.

I'm learning knew things every day so if anyone has any tips or just general advice I would greatly appreciate it.

Thanks so much

Jessica

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AVR1962 Collaborator
AVR1962
Posted

Welcome! I think you will be amazed what all you will connect with celiac as you start to aliminate it from your diet. The more you read, the more you will realize that this has been the root of many of your health issues for quite sometime. I know it really changed my reality, the way I looked at the past and even my future. However, you will start to feeling better and you will finally be able to enjoy a life that you have been denied from the past. There is a great deal of knowledge here, don't be afraid to ask questions. We're all a little different just like you mentioned about your own family but someone here is going to know what you are dealing with. Best to you and the family.

MenHen Rookie
MenHen
Posted

Welcome! I am a newbie, too! Congratulations on finding out what was causing you problems. Good luck with your new life! My biggest piece of advice is to always have something easy and on hand to eat, whether at home or away from home. That helps you cope with it so much better.

upwitht21 Rookie
upwitht21
Posted
  • Author

Thanks for the warm welcome! I feel so lucky that there is such awesome support.

Roda Rising Star
Roda
Posted

Welcome. It is a big change, but with time you and your son will feeling well. I was wondering if your doctors did any vitamin and mineral lab tests? Too often we are deficient in quite a few. If there is concern for bone loss(due to not absorbing vitamin d) a bone mineral density test is requested.

upwitht21 Rookie
upwitht21
Posted
  • Author

Other then telling me I had celiacs and to go on a gluten free diet my doctor didn't say to do anything else. We live In a very rural area and the medical care is far from stellar. It took me over 2 years to get diagnosed, I asked numerous doctors if I should get tested and they said I didn't have any of the "right" symptoms even though I have 4 cousins who have it. Just kept wanting me to take narcotics for the pain which I flat out refused.

What are things I should be doing? Both for me and my child....

Thanks so much!

quincy Contributor
quincy
Posted

Other then telling me I had celiacs and to go on a gluten free diet my doctor didn't say to do anything else. We live In a very rural area and the medical care is far from stellar. It took me over 2 years to get diagnosed, I asked numerous doctors if I should get tested and they said I didn't have any of the "right" symptoms even though I have 4 cousins who have it. Just kept wanting me to take narcotics for the pain which I flat out refused.

What are things I should be doing? Both for me and my child....

Thanks so much!

glad you were finally diagnosed (dx'd). I was dx'd in april 2010 and I had bone pain in my ribs, lumbar spine and hip and it turns out I had bone density loss in all of those areas. I would advise you find a GI doctor to test you for vitamin definciencies. If you are experiencing bone pain, I would recommend a bone density scan, but if that is not feasible then begin a regimen of vitamin D3 with calcium every day. Taking a good multivitamin is a good start as well. Just make sure its gluten free. many of the major brands are gluten free such as Nature Made

My brother had to lie to his doctor in order to have a celiac panel run and my sister's doctor told her it wasn't necessary because she didn't have diarrhea!!

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upwitht21 Rookie
upwitht21
Posted
  • Author

Thanks for the input I will look into a gi specialists after the new year. I already take vitamin D along with a prenatal vitamin, my diagnose actually was made because my doctor (who left our clinic and then came back) made the connection with it and us not being able to get pregnant after 2 years of trying and I don't even know how many cycles of fertility meds. My bone pain has gradually gotten better as the weeks have gone by eating gluten free. I've started doing yoga instead of weight lifting hoping to not tax myself quite as much.

I think my family is still a little numb to the whole it's forever thing lol!

Thanks!

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