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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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      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
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