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waitingtopounce

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waitingtopounce Rookie
waitingtopounce
Posted

I am new to this site and new to the concept that I have celiac disease. If that is actually what I have. Which I pretty much am convinced it is because it explains my ENTIRE childhood, adolescence and adulthood. A normal person doesn't go to the doctor with "nothing wrong" that many times...

Anyway. I am dropping weight like crazy (without trying), passed a white stool and have been passing really light colored stools lately, have severe constipation, really bad stomach cramping and i'm only halfway through my 2 week gluten free test. The gluten free diet made a drastic impact on my brain function and fatigue, but as far as the rest of the symptoms and my malnutrition not going away... I feel like they should be doing something...or watching be closer, especially since i'm still dropping weight and the white stool is a new symptom.

I don't know what to do to have them land on a diagnosis and take this seriously. I feel like crap and i'm worried that I've done permanent damage to something in there. I need a referral to a specialist but my normal docs don't seem to think any of this is a big deal.

I don't see how just eliminating gluten from my diet is going to fix things malnutrition wise. Shouldn't they be doing something else?????

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ravenwoodglass Mentor
ravenwoodglass
Posted

Please contact your doctor immediately and tell them that you are passing white stool. It can be a sign that you have a serious issue. As to the gluten free diet helping with malabsorption issues... After your body has some time to heal it will start absorbing nutrients from your food again. Please be aware that if you are on the gluten-free diet that you can not be tested for celiac. You need to continue eating gluten until your tests are done. That said testing does have false negatives so after your testing is finished do give the diet a good strict try for a couple of months to see if it helps.

Jestgar Rising Star
Jestgar
Posted

Please contact your doctor immediately and tell them that you are passing white stool.

I agree with this. Call the office now, it could be a sign of something really bad.

waitingtopounce Rookie
waitingtopounce
Posted
  • Author

Please contact your doctor immediately and tell them that you are passing white stool. It can be a sign that you have a serious issue. As to the gluten free diet helping with malabsorption issues... After your body has some time to heal it will start absorbing nutrients from your food again. Please be aware that if you are on the gluten-free diet that you can not be tested for celiac. You need to continue eating gluten until your tests are done. That said testing does have false negatives so after your testing is finished do give the diet a good strict try for a couple of months to see if it helps.

Thank you for responding ravenwoodglass!

I called them this morning about it and they discussed, put me on hold, said they'd call back. I called back asking if I should make an appointment, they then said yes you need to be seen today.

I am sitting here waiting to go to my doctor's appointment.

I really wish I would have just gone in to the hospital. I think I want new tests done. Cause she wasn't looking for celiac when this whole thing started. I had vitamin D deficiency and mono. I was still tired and fatigued after 8 weeks of vit D treatment so did a full blood panel to check for anything she could think of. I still HAD mono and I still had no appetite so i was eating basically nothing. The test came back negative for gluten intolerance (big surprise) but i still never got better. She decided to see how i felt by going on a 2 week gluten free diet. Everything I've read says that she's doing everything wrong. And with me losing weight the way I am I really want to just say "ok, i have celiac, now lets focus on confirming malabsorption so you can figure out exactly how deficient I am in everything right now so we can fix it."

I just want to fix it. I can't keep taking time off of work to be going through medical tests.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you for responding ravenwoodglass!

I called them this morning about it and they discussed, put me on hold, said they'd call back. I called back asking if I should make an appointment, they then said yes you need to be seen today.

I am sitting here waiting to go to my doctor's appointment.

I really wish I would have just gone in to the hospital. I think I want new tests done. Cause she wasn't looking for celiac when this whole thing started. I had vitamin D deficiency and mono. I was still tired and fatigued after 8 weeks of vit D treatment so did a full blood panel to check for anything she could think of. I still HAD mono and I still had no appetite so i was eating basically nothing. The test came back negative for gluten intolerance (big surprise) but i still never got better. She decided to see how i felt by going on a 2 week gluten free diet. Everything I've read says that she's doing everything wrong. And with me losing weight the way I am I really want to just say "ok, i have celiac, now lets focus on confirming malabsorption so you can figure out exactly how deficient I am in everything right now so we can fix it."

I just want to fix it. I can't keep taking time off of work to be going through medical tests.

I am glad they got you right in. I had a feeling they would. Calling your doctor was the best thing to do with something like this. Going to the ER would have just had you referred back to your doctor in most cases.

With false negatives for celiac being common if you had a negative test and she then told you to try the diet she was giving you good advice. The only time that would not be good advice is if you were planning on having an endoscopic exam. Even then there would be a chance of a false negative. I do so understand your wanting to get a diagnosis but sometimes response to the diet is the most diagnosis we can get. That you have already seen some relief on the diet is a good sign. It does take us some time to heal though.

Please keep us posted on how things turn out today. I expect you will be having more blood drawn and perhaps some other tests. You may want to ask her about temporary disability if you are too ill to work at this point. I hope your feeling better soon.

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