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My Rhummy Finally Feels It Necessary For Me To Be Tested For Celiac


jisduit

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jisduit Newbie

I am 44, have three kids 23, 17 and 3 - Diagnoised with Fibro in August 2008, extreamly low vit D - was a 6 - on mass doses now.

I am the youngest of a family of 3 kids - both of my brothers and parents have passed. My brother's children (2 boys) have both tested possitive for Celiac. My brother was never tested, but his wife was negitive - so its more than likely on my bro side of the family - which I am a part of - lol.

When I was first diagnoised with the fibro - I had to ask my doctor to check my vit D levels - he said is was very unlikely but check anyway to satisfy me I guess - well it came back a 6 - I now take 50,000 IUs 2 times a week. During my last visit with my Rhummy, I asked about being tested for Celiac - because of all my symptoms and the family history - of course I am being sent back to my family doc = who will refer me to another specialist.

I first researched celiac when my mom was so sick - there is some article about celiac and the onset of alzheimers - and then I called my sister in law. Then when I got the results of my vit D - I researched more - WOW - if I went gluten free and could actually feel my age instead of 80.

Because my vit D was so low - I insisted that my 17 year olds doc check his - his was 16 - on the same dose as me but only once a week. He suffers from MIgrains all the time (which I did as well until my 30s) - I have asked the doc about celiac and was made to feel that I am from some other planet. So I will wait till I am tested and if I am possitive will then demand he is.

My 3 year old - she just had her appendix removed - showed it was inflamed on CT but after it was removed, the pathology report came back that it was ok. She is always complaining about her tummy hurting and has displayed alot of the behavior problems that I have read about.

We eat alot of bread and pasta = I know not to change my diet until I am tested - but if this is the answer - I will be dancing in the streets.

My 23 year old asked me questions a few weeks ago about all the intestional problems he has been experiencing - he wants answers like I do -

On a possitive side, If I and any of my children are possitive, my sister in law has had her kids gluten free for years and is more than happy to help me understand the restrictions.

Cuurent meds include one for acid reflux, vit D, Ambien. Remeron, Klonopin and Morphine for pain. I have not worked since August, 2008 and have filed for SSDI - there are some days I cannot even get out of bed.

So glad I found this forum - I am sure I will have many more questions in the upcoming month. I see my PC on Thursday.

Sorry for such a long post - just wanted to let you know about me and my family

Jessie


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jisduit Newbie

112 views and no replies - HUMMMMMMMMMMMMMMMMMMM

guess thats the way message boards go.

Thanks for at least letting me post

Jessie

mushroom Proficient

If your rheumatologist really thought you should be tested for celiac, I will chalk that one up as a first. I have had three rheumatologists, and not one of them believes there is any link between the two diseases, and therefore never even thought to test me. I had to figure it out myself, and they all are still nonbelievers :huh:

OliveBranch Apprentice

Good luck with your diagnosis, Jessie! I also have low vit D requiring supplementation, and my rheumatologist also suggested I be tested for celiac (this after two years of many other doctors failing to come up with any diagnosis for my constant fatigue, brain fog, general misery). My blood test came back negative, but, by the time I received those results, I had found this forum and decided to go gluten-free no matter what the test told me. I'm seeing improvement (have only been 5 weeks gluten-free), and I've found many instances of people on this forum who respond to the diet even without official diagnosis. For peace of mind, of course, it's best to have a confirmed diagnosis, so I hope your tests will be positive. But, if not, don't lose hope!

112 views and no replies - HUMMMMMMMMMMMMMMMMMMM

guess thats the way message boards go.

Thanks for at least letting me post

Jessie

DingoGirl Enthusiast
If your rheumatologist really thought you should be tested for celiac, I will chalk that one up as a first. I have had three rheumatologists, and not one of them believes there is any link between the two diseases, and therefore never even thought to test me. I had to figure it out myself, and they all are still nonbelievers :huh:

I hate doctors. :angry:

Don't trust or listen to them - most of them. If I sound bitter, it's because I AM!!!!!!!!!

Stay on your own quest, Hopeful. You will know more than your doctor(s), soon enough.

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      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
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