Hoping to survive til appt

[randm0607]

Hi all. I've got a GI appointment coming up in 11 days and I'm really starting to panic and wonder if I'll survive until then. I've been dealing with persistent diarrhea for nearly 9 weeks now, along with worsening abdominal pain, bloating, gas, dizziness, and more. I've dropped 14 pounds without even trying, and after having struggled with my weight my whole life, this is one of the most surprising things to me (I'm nearly 41 and mom of 4).

So far, I've been to the doctor 3 times and the ER once for my symptoms. My regular doctor didn't seem concerned, as standard blood work, urinalysis, and stool samples (both bacterial and parasite tests) have all come back normal. His instructions were simply to stay hydrated and to "let me know if it gets worse." The ER doctor said my CT scan looked great and prescribed a laxative (?!?!?!).

So I've taken matters into my own hands and insisted on a GI referral. Fortunately my regular doc and insurance approved, but appointments with the GI I wanted were pretty far out.

I'm now counting down the days til I get to see him and hopefully figure out what has been wrong with me. Unfortunately this has made me very anxious and I'm getting scared to eat at all. I keep thinking about things like cancer and worrying I'll never feel normal again. I'm also wondering if it would be worthwhile to ask my regular doctor to do a celiac panel just to jumpstart the process - though I'm terrified of that coming back negative too, at this point.

Anyway, just wanted to share and hopefully I'll make it until Dec 1 without my symptoms getting too much worse. Being housebound is absolutely no fun at all, and I really need to get back to being a good mom again.

[trents]

How quickly could you get an appointment scheduled with your PCP? If you could see him the first part of next week and he was willing to do a blood draw and order a celiac panel it would expedite things by about 1 week. Then the GI doc you are seeing on Dec. 1 might decide to move ahead with the endoscopy/biopsy for confirmation. Hang in there and don't let yourself run out of wet wipes.

 

[Scott Adams]

Welcome to the forum. Be sure that you continue eating gluten daily until all tests are done for celiac disease, otherwise you may end up with false negatives. You could also get a Mail order test for around $100 if you wanted to do this outside of your insurance and doctors. The advantage would be that it could be done far more quickly.

[randm0607]

Update - the GI appointment on Wednesday was a complete waste of my life. I waited a whole month for a rushed, 5 minute appointment with a doctor who was handing out colonoscopy orders to every single human being who walked in the office, including me. Wasn't interested in the bloating, weight loss, or the length of time I've had diarrhea (over 10 weeks now). He wasn't interested in my lifelong history of weekly bouts of severe stomach cramps, diarrhea, and vomiting. He literally asked if I'd tried immodium, handed me a copy-of-a-copy-of-a-copy paper with some low-FODMAP info on it, told me I needed a colonoscopy, and ran out of the room to the next patient. Even the emergency room doctor I saw last month spent more time trying to figure out what was wrong (the one who prescribed a laxative, lol). I literally cried after leaving the office.

Anyway, I called my PCP back Thursday and straight-up asked for the celiac blood test before I start the low-FODMAP diet, since part of it is eliminating wheat products. Thankfully, he agreed (ordered three different tests from what I could tell) and I got that done this morning. I've decided I'm not waiting for the results (and not waiting to schedule and have an endoscopy done either - I'm more interested in feeling better than an official diagnosis at this point - and I started the low-FODMAP diet today, including elimination of all gluten. The blood test results will be enough for me (whether positive or neg), and I'll know with time if the diet is improving my symptoms.

[trents]

Under the circumstances, I agree with your decision. The proof is in the pudding anyway. If eliminating gluten from your diet causes significant improvement in your symptoms you have all the answers you need. I just want to forewarn you that truly eating gluten free is much more of a challenge than most people realize as how gluten shows up in the food supply through confusing terminology and cross contamination and false advertising is daunting. There is quite an education curve involved. This may help:

 

[randm0607]

Thank you for the info and forewarning! Yes, I realize that if the results do, indeed, come back positive (which I'm doubtful at this point since literally every other test I've had has been "normal,") I'll have to be much, much more careful and strict that I would if I just need to follow the low-fodmap diet for IBS. But I'm at a point where I don't have much of a life anymore with the constant pain and all the other symptoms. A diagnosis, at this point, will be both blessing and curse.

[trents]

Get back to us when you have test results.

It is disgusting how we get blown off by so many in the medical community. I know they are under pressure from the insurance companies and government to minimize healthcare costs and increase patient volumes in a way that the previous generation of physicians did not have to cope with but still . . .