Need Advice I Am Getting Scared

[mhansen]

I got a recommendation from my PA about possible gluten allergy which I then self diagnosed a gluten intolerance after my blood test was negative. As long as I stay off gluten my symptoms are gone and I feel healed. So I went to my primary to see if I needed to do anything else and he wanted to give me IBS prescriptions telling me I wasn't gluten intolerant and it might all be in my head. So I fired him.

My question is do I need a Doctor? I went to see a great dietitian - very informed about GI disorders. Both doctors wanted to send me to a GI specialist for colonoscopies but if I educate myself and heal myself do I need a doctor?

My dad died of "unknown intestinal cancer" and now his sister has the same. We all think it is related to gluten. No doctor will confirm that though.

I am scared the doctors will make it worse

I have received so much support just reading this site I so appreciate it exists.

Thanks

[Ursa Major]

Everybody needs a family doctor for emergencies, and to get referrals to specialists if needed. Other than that, I see no good reason to have a doctor telling you that you need things you don't. If you feel well off gluten, and sick eating it, you don't need a doctor telling you how to handle gluten intolerance, because you already know what to do.

I agree that your dad and aunt probably got intestinal cancers because of undiagnosed celiac disease, even if you can't prove it. Because eventually all people with undiagnosed celiac disease will get cancer somewhere in the digestive tract. My grandmother (who I never knew) died of stomach cancer, and my mother (who had all the same symptoms as me) died of liver cancer.

If you stay away from gluten, you will likely escape that fate. After five years of being gluten-free, your chances of developing cancer of the intestinal tract will be the same as everybody else's.

I wished I could just fire my doctor, but there are no doctors to be had around here. And specialists in Canada refuse to see you if you don't have a referral from a family doctor!

[SunnyDyRain]

If you feel better off gluten, don't eat it. No doctor can make you eat it.

Going to a GI may be helpful just to get a good look around, check for polyps - always worry about cancer. If they only do the routine colonosopy, they are not going to see any celiac damage. It's all in the small intestine. If you have been off gluten, they may not even see damage there.

I'd suggest going in and being firm. " I am gluten intolerant, i know this from results of the diet. I am not interested in changing my diet, can you just look around and see if there are any addtional issues with my GI tract i need to worry about." I'd even ask people in your area on here or a local GIG chapter who other members go to that are celiac friendly.

Just my 2 cents.

[ravenwoodglass]

The key is in your first two sentences. The gluten-free diet is not a script, you don't need the doctors permission to be on it. However you should find at least a GP for other medical stuff. If you feel you need a diagnosis Enterolab does stool and gene testing, this would be valuable to do at some point if only to help speed diagnosis in other struggling family members or children. You have found a great place for info and support, any questions just ask and someone here will most likely be able to guide you to an answer.

[EBsMom]

My question is do I need a Doctor?

You don't need a doctor to tell you that you're better without gluten in your diet - you already know that. I'm self-diagnosed, based on my reaction to eating gluten-free for a month, then heavily glutening myself and getting really sick. I did the Enterolab fecal test for confirmation, just because I wanted a bit more info. Even the Enterolab test wasn't *necessary*, though. Dietary response gave me my real answers.

I've gone to see a doctor after the fact. I needed a new GP, anyway. I told him about my history with gluten, my dd's celiac disease, my mom's probable gluten intolerance (she has several autoimmune conditions.) I also showed him the Enterolab results, but he seemed more interested in my actual experience. I have no idea what he actually wrote in my chart, but he was amenable when I told him that I was planning to be gluten-free for life. I was prepared for him to push for me to have a full workup with a GI, just to "be sure", but he didn't, and I was relieved. There are some reasonable docs out there, I guess.

Anyway....if you feel better off gluten, there's your answer. If you have additional problems crop up in the future, you can judge at that point whether you need medical help. That's my opinion, and the way I'm approaching it personally.

Rho

[PatBrown]

I really think that you should get a proper diagnosis. The cancer thing could very well be associated with Celiacs. Go to a specialist. The bowel symptoms are not the only thing affected by Celiacs.

[sfm]

I really think that you should get a proper diagnosis. The cancer thing could very well be associated with Celiacs. Go to a specialist. The bowel symptoms are not the only thing affected by Celiacs.

Unfortunately, even specialists misdiagnose celiac frequently. There's still so little knowledge in the medical community. I also self-diagnosed myself through dietary response, but followed up with Enterolab, which confirmed my thoughts.

However, having said that, I recently did have a full workup by a GI, just to rule any other conditions out. Just because you are gluten intolerant does not mean there's nothing else going on, you know? Luckily for me, the colonoscopy checked out fine. Not so luckily, the upper endoscopy showed two ulcers and inflammation in my small bowel (after being gluten free for 9 months). So it's best to go ahead with the tests, I think. I never suspected I had ulcers because the pain in my stomach was NOTHING compared to what I feel/felt when I ingest gluten. Now, in restrospect, I realize I have been walking around with what I call "mild" burning pain in my stomach for months!

Just remember going in that you know you are gluten intolerant, no matter what any tests show - I kept that attitude going in. My GI said that if the upper came back negative, he wanted to put me on IBS meds and have me eat gluten. I just smiled, thinking, No freaking way am I going to voluntarily eat gluten!

Sheryll