New And Confused

[EnviroChick]

Hey,

So I will start off quickly to make this easy. I have been having stomach issues since I was a teenager. Things got worse when I turned 19, I was in university and working a lot. 1 year later I had gained 30 pounds in 3 months and was sleeping for 13 hrs a day, was diagnosed with hypothyroidism (I don't know why I have it, apparently it is not Hashimoto's but I don't think I was ever tested for that). At that same time, my stomach issues sky rocketed. I was going to the bathroom 10+ a day (always D). Cramping and pains were so bad I would be doubled over. I get A LOT of mucuous when I have a BM, and a lot of the time i just musous (GROSS I KNOW!!!). My BM's (when the meds aren't working or I skip them) float and are frothy-ish and thin (sorry for the TMI).

I have always had issues with my knees, and was told I would have arthitis by the time I'm 30 (now 23). I know i'm anemic, don't know what type, and that my red blood cells are not properly shaped (have no idea what that means and my doctor seems to not know).

At 21, I was somewhat diagnosed with IBS, given Imodium and Buscopan to take 3 each, 3 times a day. I have been doing that for 2 years now. I get by, but I still have terrible bloating and gas, D about 2-5 times a week and cramps. I also have started with a new pain, a dull ache ALWAYS in the same spot on my lower right stomach (doctors didn't care about that either).

Testing I have had done - 2x full panel celiacs blood work and sigmoidoscopy with 4 biopsies (haven't gotten the results back but I know they will be negative). Both my celiacs blood results I have been told were negative and I'm "fine".

I am at a loss. I just started my career, got engaged and am getting married in 14 months. I have anxiety and I don't go out a lot unless its with my fiance or a close friend that knows that I need a bathroom nearby. My job requires me to go out and work in the wild often and travel sometimes and I literally have to take 6 Imodium and 4 Buscopan a DAY to make it through safely.

I don' t think this is a way to live and I'm on my last few threads. My GP tells me its IBS, deal with it. Go to a GI, tells me I have IBS after only doing the blood test and sigmoid scope-does that even make sense? I thought it was a process of elimination to get to a IBS diagnosis.

I'm extremely frustrated with my life and I just want answers, I know I can't go on like this, living day to day stuffing me full of pills.

I just started going gluten and dairy free yesterday. I made a promise to my fiance to do it for at least a month and see how it goes. If I feel better, I'm going back to my GI and asking for more help.

How hard is it to get help from a doctor? I thought they were there to cure the sick and heal the hurting??

I just don't know where to go and the more and more I read about Celiacs, the more and more I think I have it.

Sorry for the life story, but I just need someone to tell me that something will help me!!!

[badgerette]

I have been skipping the doctor for now and taking matters into my own hands. It sounds like people have had some trouble w/official diagnoses, and I just can't really afford it right now anyway. I am finishing up my first gluten-free-trial. I have been told you need to go 6 weeks before you really feel better, and I have found that it's true. Good luck to you and hang in there.

[mushroom]

Welcome to the board, EnviroChick. I am sorry to hear that you are going through the gluten intolerance doctor dance Unfortunately, this dance is quite prevalent and I am not being facetious here. Many of us here have been in shoes like yours and done the symptom, doctor, testing shuffle, with nought to show for it but a lot of medical bills, misdiagnoses and scrips for countless meds that may or may not help with the symptoms but do nothing for the underlying cause.

One of the problems is that so few doctors know much about celiac disease and its symptoms and diagnosis. Another is that doctors are trained to treat things with medications, and celiac cannot be treated with medication. Another is that celiac presents in so many different ways and combinations of symptoms.

Now to get specifically to you, have you ever had an endoscopy (going through the esophagous to examine the small intestine) with biopsies done. This is generally regarded as the gold standard test for celiac disease. Colonoscopies (not sigmoidoscopies) are the proper procedure to rule out Crohn's and microscopic colitis. Endoscopies are generally done following a positive blood test for celiac but some doctors will do them even with negative blood work because there is at least a 20% false negative rate on blood work. There are also several different tests that make up the "celiac panel" of blood tests and some doctors only do one or two, or fail to test total serum IgA which is necessary to validate the other tests.

Even supposing you have a doctor who does all the correct blood tests, does the endoscopy and takes enough biopsies from the right places, it is still possible for you to be intolerant of gluten and yet test negative for celiac disease. It is starting to be recognized that celiac may be only one form of gluten intolerance, and that there are others that no test has yet been devised for. The celiac tests are looking specifically for intestinal damage and antibodies while the damage may manifest as neurological damage, or attack the gallbladder or pancreas or thyroid long before you will test positive for celiac (if indeed you ever do).

So sometimes, despite our (and sometimes our doctors') best efforts to diagnose, we are left where you find yourself, eliminating gluten (and usually lactose) from our diets to see if that makes us feel better.

I know this is not the answer you wanted to hear and I send {{{{{hugs}}}}} to you for what you are going through. But unfortunately I don't really have a lot to offer you apart from the endoscopy, if you have not already had it. And by the way, if you want to have it you do need to keep eating gluten until the day it is done.

[starrytrekchic]

I was also going to ask about Crohn's as it most often shows up on the lower right side (where the small and large intestines connect). You would need a colonoscopy to check for that, and as said above, an endoscopy to check for Celiac.

Once you go gluten free, further tests will be invalid for celiac, so if you want the endoscopy, you'll need that done sooner rather than later. You could also do genetic testing at any time to see if you have the genes that predispose you for celiac.

But if you don't want to push for further testing, then a test drive of the gluten free diet is best. Keep in mind it can be very up and down the first few months!

[EnviroChick]

Thank you for all your feedback! Much appreciated!

I have not had a endoscopy or even a colonoscopy. My GI doesn't seem to think I need one. I also know that he did test the serum IgA, and from what the nurse sand on the phone last week, all my tets were "fine". I have another appointment with a different GI in January (so far away!) but I want to see what she says, I have been on her waiting list to get in to see her for over a year now!

I had all the antibody and sed rate tests done 1.5 years ago, and they came back normal, so I think thats why my doctor didn't want to further the coloscopy since the blood test showed no inflammation. Again, this was before my right side pain really started to show up, so who knows.

Also, I have been for 2 ultrasounds on my gallbladder because gallbladder issues run high in my family and I have had 3 "attacks" (meaning I was doubled over in bilary colic pain for 5 hours each time, burping a lot, and had reflux), which showed no gallstones, and I know that is not the only thing that causes gallbladder problems but yet again my doctor doesn't know that I believe.

Since I moved to a new part of the city last year, I'm trying to find a new GP in my area so I don't have to drive 30 minutes to see my current one. Thus, finding a new doctor would give me a full physical and check everything. My current doctor only checks a few things once a year, including my thyriod levels which are still not completely stable.

I know this whole process is going to be long and tiring but in order for me to go on a honeymoon and actually have fun, I really need to figure something out! I HATE popping pills every 3 hrs and worrying about everything I eat.