New And Frustrated

[Marlene]

Hello everyone:

I have been reading most of the posts on these forums and have learned tons in the last few weeks. My story sounds the same as most peoples -- symptoms for the last 20 years including gas, bloating, diahrea, constipation, gross floating stools, pain, headaches, brain fog, tingling and numbness in my legs, lactose intolerance, depression and a few more that I can't think of right now (brain fog). My symptoms intensified about 3 years ago to the point where my life was controlled by BM's and the next bathroom visit. I went to my GP and was told it was stress, I have a nervous tummy (why don't you take the afternoon off?), and my personal favourite -- lots of people have diahrea every day. I have been going to a GI for the last 3 years and have had every test EXCEPT a small intestinal scope and biopsy (he didn't figure it was necessary). Finally he said it was my gall bladder. I was ecstatic thinking I was going to get better. Hah!! I got a lot worse and the diahrea kicked into high gear. Plus I developed this pain under and behind my ribs. I lost a lot of weight and always had a grey colour to my face. One day my boss walks in and says "I know what you have -- Celiac." I looked it up on the web and just about passed out. It describes me to a T. I called my GI and begged for a blood test. Came back negative. Now I know that this is not unusual but I did not realize it then. Meanwhile, as soon as I got the blood test done I started the diet and some of my symptoms disappeared within a few days. Others are going away slowly but surely although I still have off days. I was so ticked off with my GI for putting me through this misery all these years so i went to a different one recommended by a friend who works in Gastroenterology in a teaching hospital. I figured this guy teaches student doctors so he should know something, right? WRONG!! He told me I have IBS. I almost started crying. That is exactly what a doctor told me 18 years ago. He said there is no way I have Celiac because the blood test was negative (1gA - 3). I asked him about gluten intolerance. He said there is no such thing!! I asked him why I am doing better on the diet and he said "It might help some people a little but it's very expensive, I don't recommend it". Then he suggested putting me on some medication to which I said NO!! He did a whole slew of blood tests which i have not gotten back yet. He is testing for Celiac again which I told him would be useless because I have been on the gluten-free diet for 7 weeks. He told me it would be useless anyway because I definitely do not have Celiac (his words). So now he wants to do a CT scan. As if that is going to show anything. I don't know whether to go back to my original GI who was not as bad as this jerk and beg for an intestinal biopsy. It might be too late for that since I have been on the diet. I have the package from Enterolab sitting in my room waiting for me to have a BM at the right time:) I can't imagine bringing the whole contraption to work even though that is when I usually have to go. I think Enterolab is going to be my last hope for getting any kind of dx. Mostly I want a dx so I know if my 4 kids need to get tested for Celiac. Also, it would get certain family members off my back who think I am off my rocker. Sorry this ended up being such a long post for my first one. You guys have no idea what an encouragement it has been for me to read different posts and realize that I am not crazy after all. You have helped me more than you realize!!

[queenofhearts]

Welcome to the board & to the gluten-free world! Yes, doctors can be so frustrating, but the good news is, you don't need a doctor to authorize you to do the gluten-free diet. If worse comes to worst, you can just do it yourself with nobody's permission. I understand the psychological need to be certain, & to convince skeptical friends & family members, but if you stick to your guns long enough to get well, they'll have the evidence before their eyes. Meanwhile, at least you'll have support at work-- You have one smart boss!

Have you got Nini's newbie kit yet?

Open Original Shared Link

(scroll to the bottom for the link)

Feel free to vent whenever you like, & we'll be here for you!

Leah

[mamaw]

welcome to the world of celiacs where doctors (most of them) have no clue about this.. again its a choice that alot of people make on their own ,because doctors just don't realize this is an illness that causes big problems for some.I think I would find a support group near you and ask what doctor most of them go to . I think then you might get an understanding one. I don't say that last sentence with holding out for much hope tho!!!!

If you feel so much better on the diet then I would continue as no one knows better than yourself how you feel.It is hard not knowing about whether or not to test your children.The diet will not hurt them in fact I know many professional people now who have no problems with gluten but they said it is not fit for anyone to eat. DO your children have any issues when they eat it? tons of people have no symptons at all so damage could be silent also.

You will find alot of us have been through the same crap the doctors are putting you through now. Sometimes you must take health into your own hands and do what makes you feel better..

I finally have had all the bloodwork done, an endo & colonoscopy, and after a four month fight the DNA testing..... don't give up

blessings

mamaw

[eKatherine]

Seriously, it sounds like this doctor's not going to stop running tests until the insurance company pulls the plug. Has anybody ever asked a doctor what they mean when they say the diet is expensive/costly/prohibitive? How expensive can it be compared to the testing he's put you through?

[Guest nini]

the diet is not expensive if you stick to a diet of foods that are naturally gluten-free, too many Dr.s are misguided and misinformed when it comes to Celiac/Gluten Intolerance. They have their heads in the sand as far as I'm concerned. Celiac is just ONE manifestation of gluten intolerance, and if going gluten-free makes you feel better, that is ALL you need to know. I speak from experience.

7 years ago a friend of mine told me about Celiac and that she thought I had it, I started researching it after having several miscarriages that the Dr.s couldn't explain. I then found myself pregnant with my daughter. I stayed gluten-free during the critical first trimester and then my idiot ob/gyn told me that the gluten-free diet was unhealthy for the baby and that I needed to eat some bread. Seriously. I then ended up having a dangerously complicated pregnancy, very nearly died, very nearly lost my baby and ended up with a premature infant with lots of health issues. It wasn't until my daughter was 3 that we were both finally correctly dx'ed with Celiac (which lo and behold was what I had thought, but had let Dr.s talk me out of it)...

You do not need medical confirmation AT ALL. Stick to your guns, stay gluten-free and just get healthy. Forget anymore testing and let the positive dietary response be your proof. That is the most valid diagnostic tool anyway as far as I'm concerned.

[Marlene]

Thanks to all of you for your responses! As far as my kids goes, I have 2 who seem to have GI symptoms. My one son is 17 and refuses to even consider the possibility that he might not be able to eat whatever he wants -- even though it would make him better. That's why I guess I was hoping for a positive dx. It might make him reconsider. I have told him that if it is Celiac he would be better off knowing and dealing with it while he is still young before it turns into some Lymphoma or intestinal cancer. My youngest is 11 and in the last few months has developed problems with gas and diahrea. Part of me wants to take her to the doctor to get checked out (it could be a parasite) but I don't want her to go through what I have with test after test. Meanwhile, I will continue with my gluten free, dairy free diet. BTW, I tried downloading the Newbie kit but it didn't work. I should try again. As far as the testing goes, I live in Ontario, Canada, so the government covers the cost of most of the testing. Thank God for that.

[queenofhearts]

Thanks to all of you for your responses! As far as my kids goes, I have 2 who seem to have GI symptoms. My one son is 17 and refuses to even consider the possibility that he might not be able to eat whatever he wants -- even though it would make him better. That's why I guess I was hoping for a positive dx. It might make him reconsider. I have told him that if it is Celiac he would be better off knowing and dealing with it while he is still young before it turns into some Lymphoma or intestinal cancer. My youngest is 11 and in the last few months has developed problems with gas and diahrea. Part of me wants to take her to the doctor to get checked out (it could be a parasite) but I don't want her to go through what I have with test after test. Meanwhile, I will continue with my gluten free, dairy free diet. BTW, I tried downloading the Newbie kit but it didn't work. I should try again. As far as the testing goes, I live in Ontario, Canada, so the government covers the cost of most of the testing. Thank God for that.

I was positively diagnosed by biopsy but my 19 year old sons still won't listen to my gluten-free suggestions either. I've decided just to focus on my own health & when they see me getting healthier they can draw their own conclusions. As to your 11 yo, you have a bit more control... have you tried the gluten-free diet with her?

[gfp]

Seriously, it sounds like this doctor's not going to stop running tests until the insurance company pulls the plug. Has anybody ever asked a doctor what they mean when they say the diet is expensive/costly/prohibitive? How expensive can it be compared to the testing he's put you through?

First this made me LOL ... then the more i think about it the more your simple statement seems even truer.