I Guess I'm Done, Sort Of...

[moonunit]

Okay, after my primary care handed me positive (but incomplete) blood work and said it was borderline, and my gastro did an endoscopy and biopsied only two pieces, which were negative, both doctors said I do not have celiac disease and to stop looking in that direction.

So I made an appointment with a doctor who specializes in celiac disease for a second opinion, just to be sure. Told him about my 35 days gluten-free and how I had lost weight (a good thing in my case) and my family said I looked much healthier, etc., and told him about my aunt who was diagnosed celiac and my list of symptoms a mile long that are ALL on the celiac list...

...and he said no, I don't have celiac disease, I have Crohn's disease. My bowel resection in 1993 caused the D and that's how I will remain because I'm missing pieces of intestine that are required to make things normal. He wrote me a prescription for some medication that should help with it.

To be honest, I'm shocked. A diagnosis of celiac would explain pretty much every health problem I've had in the last 15 years, and though I guess my results of doing the gluten-free diet would be "inconclusive" right now (I'm not 100% better but I do have really good days and really bad days that I don't know whether are caused by food or what)... I said I would trust the expert, and he's an expert and he says I don't have it.

He also told me to go off the gluten-free diet now, and that whole grains are recommended as part of a healthy diet. I figured he'd want me to go ahead and finish the three-month experiment to see what happened, or at least say there was no harm in trying it to see. But he said to stop.

I have cupboards full of gluten-free food and have been coming to terms with this being my new life for over a month now. I do feel better, most of the time, so I think I will keep experimenting at least until the gluten-free food runs out (my husband's suggestion) or maybe till the three months are up (a friend's suggestion). But I feel really dumb for being so sure that this was the answer, and this guy just told me it wasn't. He didn't look at the imaging from my endoscopy (I called to confirm it had been sent to them and they said it was but it was not) and he didn't see the biopsy paperwork, which was also missing from the packet, but he sees celiac patients all the time and knows his stuff, apparently.

I will remain an advocate for publicity of course, because this is still very important to me even though I am not a part of your population after all. It makes me sad, not because I wanted this disease, but because this means that all those symptoms that I thought would go away are now part of me again and not going to be fixed. And with Crohn's, many of my risks that I thought would go away with a gluten-free diet will remain a reality for me no matter what I do. I thought I had an answer at last, but all I have is a gigantic laundry list of health problems that must each be solved individually. The drug companies will be sitting pretty when I am done.

Anyway, I wanted to let you know that I suppose sometimes it can look and feel just like celiac, and you can have risk factors and relatives with it and parental genes and symptoms all over the place, but that doesn't necessarily mean you do have it. Dr. Arrogant-pants (my old gastro) is still a jerk, but it looks like he was right all along. Go figure.

[lonewolf]

I'm sorry for all the hassle you've gone through. Maybe you don't have Celiac, but maybe you do have a problem with gluten. (I've never been diagnosed and probably have Non-Celiac Gluten Intolerance.) You've felt better, lost weight and look better gluten-free, doesn't this tell you something? You seem to be a very intelligent person, please trust your body and what it's telling you. Why don't you finish your 3 month experiment and then try a gluten challenge and see how you feel? Whole grain wheat might be healthy for some people, but brown rice, millet, quinoa, and other grains are also healthy. A large part of the world does very well without wheat, so it's not essential to life. Okay, sorry to be preachy, but I'd hate for you to give up something that seems to be helping you - I've had doctors tell me to "eat whatever you want" and "just take this medication" and I think I'd either be dead or non-functional if I had followed their advice. Sometimes you DO know more than the doctors.

[Mango04]

I hope you get some definitive answers soon. Even if you don't have Celiac Disease, you could still have gluten intolerance (and/or other food intolerances). That's something most doctor's won't acknowledge. If you find you feel better on the gluten-free diet, stay gluten-free! If not, I hope you find the answers that best for you.....

[Guest nini]

Just because a Dr. appears to be an "expert" doesn't mean that they really are.

Trust your gut instincts... They did not take enough samples to get a true readiing for a biopsy and while a positive biopsy can confirm a diagnosis of Celiac it can NEVER EVER completely rule it out, and any so called "expert" that says it can is full of it. I ran into this with my daughters GI... he said she absolutely did not have Celiac even though I (her mother) have it and all her symptoms fit AND all her symptoms completely went away on the gluten-free diet. He also said she just has IBS and to feed her more whole wheat! (the child has violent reactions to wheat and I am NOT going to feed it to her arrogant jerk!) And this particular ped GI was also a so called "expert" on celiac and supposedly sees a lot of Celiac patients.

I've seen way too many people get the run around from arrogant so called "experts" and I just want to caution you from putting too much faith in an arrogant Dr.

OK so it may not technically be celiac, BUT you very well may be gluten intolerant and with your family background very likely to develop celiac.

[mamaw]

Gee I heard some say that the gluten-free diet has helped their Crohn's!!!! I agree with Nini the hell with what the doctor says if you feel better on the diet I would stay on the diet. I never heard of this diet killing anyone...Actually I think with the diet we are avoiding alot of things we shouldn't be eating anyway. Gluten intolerant or an allergy to gluten maybe wouldn't jump out & bite the doctor. And look how many people have no outward signs or intestinal signs of this disease...

If you stop the diet maybe you can throw a gluten-free party to use up your food ......

good luck with whichever way you go....follow your gut....

mamaw

[GreySaber]

I agree with Nini about the trouble with Doctors, but on the other hand I must say that under the above condisions, how would you ever know if you don't have it?

[moonunit]

That's a tough thing for me right now... so many times we have been told not to necessarily trust that the doctor knows best, but at what point do you stop asking and just accept the answer? I'm doing the Enterolab testing, mostly for the genetics to find out whether it's necessary to test my kids, but since the other tests are available at a discount I might as well do them at the same time. I am doing the Crohn's one from them as well.

So at what point do you trust the answer you're getting? I'm sure I could keep going until SOMEone SOMEwhere said I had this, or I could stop at any one of the people who said no. Without being truly sure in either direction, it's just pure chance whether I stop on the right answer or the wrong one, it seems.

Incidentally, I find it interesting that no doctor at any time has suggested the possibility that I might have Crohn's AND celiac disease. They have said "you don't have celiac because you have Crohn's." Are the two mutually exclusive? Maybe so... I'd think it would have come up by now.

Thank you all so much for your support! I am going to just see what happens and try not to think too much about it for the time being. I can keep the diet going for a while on auto-pilot (I'm getting to where it's not so hard to do) and maybe I will improve and maybe I won't. There's only so much energy I can put into trying to get better... if this is how my life is, this is how it is. I lived with these problems for a lot of years before building up hope that there was a magic bullet that would fix it all, and I can live with them again.

[Guest nini]

at what point? I think you just have to listen to your own body, do your own research, and if the Dr.s are telling you things that don't agree with what YOU feel to be true, then you keep questioning... Sure there are some good even great Dr.s out there that are trying to help people and really know what they are talking about, it's the ones that are arrogant and dismissive of the patient that really get my gall up. You know the ones that are so smug and say "it can't POSSIBLY be this..." and refuse to consider anything other than the initial hypothesis that they came up with.

Chron's and Celiac are not mutually exclusive... does one aggravate the other? does one cause the other? Don't know, not enough research has been done in this area, but it has been shown that people with Chron's benefit from the gluten free diet, so while they may not technically have Celiac, gluten is still obviously a problem.

There aren't any tests (other than dietary response) that can definitively tell you if you have gluten intolerance... the only way you can figure this out is by diet. And I have to caution any newbies out there, the diet itself does not immediately miraculously make everything all better. It takes an average of two years for most people to sufficiently heal from Celiac, BUT that doesn't take into account the years that it will take your body to recover from the other health issues that crop up because of your body having gone deprived of nutrients for so long. You do not need a Dr.s permission to go on the diet, and once you've had all the tests specifically for Celiac, there is no reason to keep gluten in your diet. So what is the harm in trying the diet? You can have a very healthy high fiber gluten-free diet. Just stay away from all the processed junk and replacement products. Stick with foods that are naturally gluten-free. Give your body time to heal, and if you still do not get completely better BUT see improvement, you can continue to pursue medical testing for other health issues, but be careful about letting Dr.s talk down to you and tell you that this is all in your head and to go off the diet. If the diet helps, even if it doesn't completely make you 100% well, why not stay on it?

Years before my actual dx, I let a Dr. talk me out of the diet and let him tell me it was all in my head and it very nearly killed me and my unborn baby. Yeah... HE WAS WRONG... 3 years later I was finally sick enough for someone to take me seriously and accurately dx me. My blood work was so high there was NO DOUBT that celiac was the cause. Three years later I'm a lot better, but, I'm not 100% well either. If I let the Dr.s tell me that the diet hadn't made me completely well, therefore it was a mistake, I would be a fool. that's just me.

[KaitiUSA]

I hate these clueless doctors. Seriously, your bloodwork was slightly high for a reason and your body knows better than any doctor. Biopsies can rule celiac in but not out. I think if you saw positive results from being gluten free then you have your answer right there..it was obviously a problem so screw those people telling you otherwise

[ianm]

Listen to your body. I don't have a formal diagnosis but the way my life has changed for the better since I stopped eating gluten is diagnosis enough. Doctors are really clueless about celiac so they are of little help or value.

[Carriefaith]

Don't go off the gluten-free diet yet! The specific carbohydrate diet (similar to the gluten free diet) is supposed to help put Chron's disease into remission. I suggest reading some testimonies in Breaking the Vicious Cycle or here:

Open Original Shared Link

Open Original Shared Link

If the diet works, then you won't need drugs

[shayesmom]

That's a tough thing for me right now... so many times we have been told not to necessarily trust that the doctor knows best, but at what point do you stop asking and just accept the answer? I'm doing the Enterolab testing, mostly for the genetics to find out whether it's necessary to test my kids, but since the other tests are available at a discount I might as well do them at the same time. I am doing the Crohn's one from them as well.

So at what point do you trust the answer you're getting? I'm sure I could keep going until SOMEone SOMEwhere said I had this, or I could stop at any one of the people who said no. Without being truly sure in either direction, it's just pure chance whether I stop on the right answer or the wrong one, it seems.

Incidentally, I find it interesting that no doctor at any time has suggested the possibility that I might have Crohn's AND celiac disease. They have said "you don't have celiac because you have Crohn's." Are the two mutually exclusive? Maybe so... I'd think it would have come up by now.

Thank you all so much for your support! I am going to just see what happens and try not to think too much about it for the time being. I can keep the diet going for a while on auto-pilot (I'm getting to where it's not so hard to do) and maybe I will improve and maybe I won't. There's only so much energy I can put into trying to get better... if this is how my life is, this is how it is. I lived with these problems for a lot of years before building up hope that there was a magic bullet that would fix it all, and I can live with them again.

At what point do you trust the answer you're getting??? Hmmm.....perhaps at the point where the answer actually produces positive results and a difference is felt by YOU.

I'm sorry, but I truly believe that you need to re-focus and take charge of your health. Perhaps you don't have Celiac and you do have Crohn's. Perhaps you have both, maybe neither. But at what point are you going to trust yourself and stop listening to doctors who are telling you what you are supposedly feeling? I'm sure that they are very good at reading tests but they cannot possibly know how it feels to live with your symptoms and therefore, they really aren't as likely to follow through with this to the end.....which may mean going gluten-free for several months.

If a gluten-free diet helps, who the heck is any doctor to jump in and tell you that you can't do it? "Whole grains are good for you"......yeah, I've heard that one before and yet my entire family does better off of them....and NONE of us are diagnosed Celiac. Correction...my aunt was diagnosed via biopsy after 5 years of searching for answers through her doctors and after hearing of us doing the gluten-free diet with positive response.

We avoid gluten, dairy, soy, artificial sweeteners and colorings (as well as GMO corn). Why? It sure isn't because the doctors recommended it! It's because that is what works for us and in particular my dd and I. Our pedi was totally against going gluten and dairy-free with my dd (who had failure to thrive and had negative blood work in her Celiac panel). Guess what? I did the diet anyway (as it truly couldn't hurt with a little bit of background in nutrition) and the response was incredible. A positive dietary response to me is much more valid than the testing done in this country where it is estimated the average celiac case takes ELEVEN YEARS to diagnose. Yeah. Way to go "experts"! Perhaps when the diagnosis of Celiac is down to 3 weeks (as it is in Italy), these doctors can then call themselves "experts" and be worth listening to. Until then, I would highly recommend that you continue with an elimination diet and trust yourself in this more than you do the doctors. JMO

[loraleena]

If you do start eating gluten and you feel like crap thats all the answer you need!!