Can Symptoms Get Dangerously Worse?

[Holly4]

It seems like all of my doctors think you have to have had symptoms for a long time in order to have celiac. I have a positive blood test and am waiting for my biopsy which is in another month. I got sick with strep then the stomach flu. My diarrhea wouldn't go away so they tested for celiac and here I am....

I feel like my symptoms keep getting worse and worse each day since I got sick last. My hands are numb most of the time now and I feel like I am floating around with a weird pounding in my head. Sounds that aren't loud are really loud to me. Im not sure this is even celiac related! I ate breadsticks yesterday and was so sick by the nighttime. I woke with super swollen hands and a bad headache and super dizzy. My concern is that I will keep getting more and more sick as I await my biopsy. My doc wants to rule out celiac for sure.

Could these symptoms get dangerously worse in a months time? Could my vitamin levels have changed that much in the last month since I first got tested? My doctor is going off of labs that were drawn a month ago. Does Celiac come on that quickly? My concern is that I will keep on my normal diet and do serious damage while I wait.

[rosetapper23]

Grrrr....I really don't like doctors sometimes. It sounds as though you may be experiencing damage to your villi. And, yes, it can get much worse. Why don't doctors "get" this??

Just from accidentally eating gluten a few years back, I lost the ability to absorb iron and had to receive it intravenously for two years afterward! Another accidental "glutening" last April caused deficiencies in both zinc and manganese, which affected the health of my tendons, making them floppy. As a result, both of my feet fractured because the tendons couldn't support them properly. Six painful months later with a walking boot on the foot with worse break, I finally figured out what caused the breakage in the first place.

So, I'm a little bit worried about you. Because you're experiencing numbness in your hands and other severe symptoms, your doctor should definitely consider allowing you to go on a gluten-free diet. If you feels lots better, why would an endoscopy be necessary? Leading celiac expert Alessio Fasano has stated at conferences recently that there is no purpose in having an endoscopy when the blood tests are positive, a person is symptomatic on gluten, and those symptoms resolve on a gluten-free diet. Due to the fact that an endoscopy oftentimes results in a false negative (because the scope may not be long enough to reach the damaged section, the surgeon misses the affected areas, or the pathologist may not be knowledgeable enough to read the results accurately), a false negative can cause a doctor to encourage a patient to continue to eat gluten because he/she feels that the patient doesn't have celiac when, in fact, that person DOES. The result is much grief for the patient.

Are you willing to risk your health for your doctor's satisfaction? Perhaps you need to present him with this information. Dr. Fasano was supposed to publish an article on this very subject in the past year, but I don't think he has yet. Still, I think your doctor needs to re-think his position on your endoscopy.

[ravenwoodglass]

You have a valid concern. You have gotten great advice from the previous poster. You have a positive blood test, the choice to stay on gluten and then get the endo done is yours alone. Even if the endo is negative you still need to do a trial on the diet. With positive blood work and good response to the diet followed strictly and a decrease in your blood antibodies after you have been on the diet for a few months your doctor should give you a diagnosis, IMHO.

[GFinDC]

Regardless of what you decide about proceeding with the testing, there is no reason you can't start upping your vitamins now. You could start taking sub-lingual B-12 and a B-complex now and it might help with the nerve issues.

[Skylark]

Celiac can come on fast and you are not a prisoner to your doctor. The treatment is diet anyway, and you are in control of it. You have the positive blood test, which is enough to diagnose celiac-caused neurological problems anyway. You are early enough in the disease that you may or may not have a positive biopsy. A recent study showed that biopsy-negative people who have positive blood tests still have the altered metabolic profile of celiac disease anyway so the myth of a biopsy as gold standard is being slowly overturned. You absolutely have the option to tell your doctor you are comfortable going gluten-free for life based on only blood (assuming you are) and get the heck off gluten.

This is an article about the recent study. You might consider printing it and taking it to your doctor. Some like to keep up on recent news and doctors are too overworked in our current broken managed care system to always read as much as they would like.

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[mommida]

The previous poasters have given very good advice.

Can Celiac Disease get dangerously worse? Yes. Celiac crisis has been listed as cause of death/contribiting factor for 2 celebrities. Joey C. who was a longtime friend of Kid Rock. He also had other illnesses. The young girl from the Poltergeist movies.