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You've Got That Burning Feeling...

GFNoob

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GFNoob Newbie
GFNoob
Posted

Here's my first post...which is probably in the wrong place. (Dear Moderator...please feel free to move at your whim...I am at your mercy) :) Bear with me while I get all this out...I promise my next post won't be so burdened (if you'll all put up with me for a second post) ;). Yes...I am using humor to get me through this...feel free to laugh with me...or at me if need be :)

I've always had complaints about food. "It hurts my stomach" was my mantra at the dinner table. I managed through the aches and pains as we do. Years later I was tested for allergens. Low and behold most of the things I recall making my stomach upset are those that I'm allergic to. They range from the traditional (sesame, soy, egg yolk, crab, a few nut varieties) to the downright puzzling (watermelon, every blade of grass imaginable and lake perch). So, I avoided some foods and ate others in very small doses. Overall, I felt better. Fast forward a few years to pretty much overnight I realized "something isn't right...and it doesn't feel like it ever will be". That wasn't a fun realization to have. I didn't realize until recently, in reading over the tests, that gluten and dairy were not tested for.

Back in April, after six years of chronically feeling "not so hot", I finally went to see a doctor about all this brewhaha with my insides. My cheif complaint? "It feels like my abdomen is on fire all the time...like menstrual cramps but not as sharp or pinchy/grabby...just a dull slow burn that never fades. So hot it can feel cold and numbing at times". It's purely a surface feeling, there's no "depth" to it...it simply radiates (that makes sense to someone out there...right?). Apparently, these symptoms are not unusual (?). Adding to that the lethargy and insomnia, the incredible ease with which I bruise, the bloating, one medium sized sandpaper like skin patch and the general malaise one gets with all this dietary fun...it was time to bring out the vials.

Full blood panel showed there were antibodies present in very, very low numbers. Doc was concerned by that. Given a strong family history of GI issues, including Crohn's, Colitis and Colon Cancer, Doc sent me to a Gastro. Gastro read the tests and said scheduled me for the fun stuff.

I had an upper endo and coloscopy on Wednesday morning (can I just say, I haven't slept that well in years!). Since coming out of it, the abdominal burning is horrible. HORRRIBLE. It has not stopped since I woke up from my oh so welcome sedative induced slumber on Wednesday. I'm eating 100% gluten-free and DF and it is just NOT backing down in the least! Has anyone else had this happen after upper/lower? I don't want to call the doctor until I've gotten a feel for "this is normal..." or "that's not right" from those in the know (all you folks). I've somewhat convinced myself that it's because there was nothing in there and now all this food reintroduction is making my insides irritated and flare up because...well, because there was nothing in there!

Can anyone sooth my mind on this one? Or should I pick up the phone and call the Doc and get some help on this?

Thanks a thousand times over in advance for your feedback!

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Marz Enthusiast
Marz
Posted

Can anyone sooth my mind on this one? Or should I pick up the phone and call the Doc and get some help on this?

After my upper/lower I had a bit of pain... Ah, going to bathroom was seriously painful, burning pain... My throat was also incredibly raw, and I figured if my throat felt like that, I imagine my intestine was not happy at all. And I'm guessing they use air to inflate your intestine for the colonoscopy, are you feeling bloated and windy as well? Does lying down, on your side, help ease the pain? Ibuprofen?

But if it's seriously painful, you might just want to give the doc a call and check, you shouldn't have to suffer through it :(

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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