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Newly Diagnosed....mayber

nmelf

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nmelf Newbie
nmelf
Posted

Hi there, I am brand new to this. I was diagnosed with Fibromyalgia in 1993. Diagnosed with IBS in 2004. Had migrains since early childhood. Suffer chronic pain, chronic fatigue, "fibro fog", depression, irritability, bloating, transient light headedness. Most of the fun things associated with Fibromyalgia.

Saw my cardiologist's nurse practioner who said, " you don't have fibro and IBS you have Celiac disease." Told me to ask my doc to run the "blood tests". Doc agreed...tests came back "positive". I have no idea what was positive about them. Have no idea what I should be even asking about. Any guidance in this would be MOST appreciated.

I have done my best to go on a gluten-free diet. Have done a pretty fair job except for hidden things. I would like the biopsy to evaluate the severity of the condition but doc is resistant to it. Again, any help I receive would be really appreciated.

47 y/o. feels like 147!

nmelf :(

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tarnalberry Community Regular
tarnalberry
Posted

If you've gone gluten free, a biopsy may give you a false negative at this point. I would encourage you to continue reading this site, continue learning more about what you need to avoid to stay gluten free, and learning as much as you can.

There's a steep learning curve to going gluten free, and it takes time to do it. And it takes time to make the transition in life - it's easier for some and harder for others in the social realm. We're here to help with whatever we can (though we all certainly have our own style ;) ).

The good news is that you may see many of your symptoms improve. I'm (sometimes excessively) a realist, however, and would encourage you not to get your hopes up that all your symptoms will go away. Some people may have migraines and fibro at the same time as celiac (I was diagnosed with both after I had been on a gluten free diet for two years and five years, respectively), but many people find they were misdiagnosed, and properly treating their celiac disease (and sometimes additional food intolerances) does deal with the majority of their problems.

Anyway, welcome. It's a tough journey, and it may take time to feel better, but you're already on your way!

ravenwoodglass Mentor
ravenwoodglass
Posted

You have a good doctor who is not going to subject you to needless dangerous procedures to confirm something he already knows. That is fantastic news. Maybe they are learning.

You have found a great place for information and support. Welcome. Read as much as you can on this board and another good place for info is this site, the celiac sprue association's

Open Original Shared Link

This board has a lot of very knowledgable folks on it so feel free to ask any questions you need to. Nothing is off limits. I hope you heal quickly but often the first couple of months are touch and go. With all the CC issues with processed food you can take that literally. :D There is a learning curve to the diet, it is really more of a lifestyle change for many of us, but it is very doable once you get used to it.

GlutenWrangler Contributor
GlutenWrangler
Posted

I would take your doctor's word for it. A biopsy may or may not show damage at this point, and it probably wouldn't change your doctor's mind if it didn't show anything. The point is that celiac antibodies are present in your blood, and the blood tests are very specific to celiac disease. I know that it can be confusing, but if you can get the results from your doctor, you could post them on this site, and we could interpret them for you. We're all here to help, so if you have any questions, don't hesitate to ask! Good luck!

-Brian

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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