No Diagnosis

[PetaC]

I am hoping that someone can give me some much needed advice on what i should do next. I have been sick for about 3 years, I am 25 years old. Previously I was a very fit, healthy and energetic person. Now I suffer from extreme fatigue, constant nausea, vomiting, bloating, gas, constipation, dizziness, etc. I also regularly get mouth ulcers (when I am most down) and I have been diagnosed with Perncious Anemia. The doctor thought that the anemia was causing all these symptoms and assured me that they would go away once my B12 was back on track - that was two years ago and my new doctor really thinks that it is not possible that it is causing the sympotoms because I am having needles every 3 months. I must add that I changed doctors after 2 years because the old decided that I must have depression because all my blood tests came back normal - she did not once refer me to a specialist - every appointment she hinted that perhaps i didnt know i was depressed! I changed doctors and my new one is great and she did many many tests and they all came back normal, she referred me to a specialist and he feels very strongly that i have celiacs because of my anemia and my symptoms. So... I had a blood test for it and it came back negative and he suggested that i had two options, try the diet or have a gastroscopy, I opted for the gastroscopy because he felt so strongly that I had this - wanted to know for sure. Was absoloutely heartbroken today when I found out that my biopsies were all normal - I really am very upset, I know that sounds wierd, that i would want to be diagnosed with this disease, I guess I am just so over tests coming back indicating that I am perfectly fine - starting to feel like its all in my head, I just want to know what is making me so sick. I have been reading that gastroscopies arent even 100% accurate because the surgeon may not take biopsies from the damaged area - just luck of the draw! Can someone please help me, should I try the diet or go back to the specialist (have to wait 2 months to see him again - that feels like forever away when I am feeling so sick). Is there anyone out there who has had the testing come back negative but still tried the diet. What should I do??

[i canary]

There is no harm in trying to go gluten free. I would give it a try for several months. If you feel better without gluten then I would stick with it. If you don't then you need to look for other options.

I didn't have a biopsy, but my bloodwork said I was celiac disease. Some of the doctors I've seen since then don't think much of my diagnosis. Since I feel much much better without gluten, there is nothing in this world that would tempt me back to eating it. (I changed doctors again and again until I found one that wasn't such a fool.)

I hope I've been helpful.

[PetaC]

Thank you for your advice, i really think i will have to try it, the surgeon suggested a colonoscopy to look for other things but I just dont think i could handle something coming back negative again, besides my specialist really thought that my symptoms were celiacs. Thanks again

[Guest cassidy]

Definitly try the diet. If your blood work was negative then your biopsy was likely to be negative as well. You may have gluten intolerance instead of celiac, and the tests are only about 50% accurate anyway.

Your symptoms sound very familiar, especially about not knowing you are depressed. I was put on an antidepressant for my stomach pain because they couldn't figure out why I was always in pain. It didn't help at all, 5 years later I got tested for celiac and my blood work was negative and after two weeks on the diet I had days when I felt like a new person.

It can be a rollercoaster in the beginning. There is hidden gluten in many things and it isn't impossible to find it all but there is a learning curve. I would give the diet your best effort and hopefully it will work for you.

I understand what you mean about being upset when the tests came back negative. I went gluten-free the day I got my blood test and I was feeling better by the time I got the results, which were negative. I was shocked. I knew I wasn't imagining that I was better but then I was questioning how I could be better if the test was negative. Obviously, I have learned the tests don't catch everyone, but after years and years of doctors saying everything was in my head it would have been nice to have a neat, normal diagnosis.

Sorry you have been through so much and I hope this makes you feel better.

[darlindeb25]

I agree--try gluten free, give it a long enough chance too--none of us truly know how long it will take for any one person to heal inside. Do not stop the B12 either, I am sure B12 will be something you will need to continue forever. I have never taken the shots for B12, yet daily I take 2400 mcg of B12 daily. Because of undiagnosed celiacs, I now have periphreal neuropathy also. Give gluten-free a chance--there are WAY too many false negatives out there in the world.

I just read an article from the Celiac Symposium that states doctors now believe the gluten intolerant count has changed from 1/133 people to 1/88. 1/250 infants in the world are born gluten intolerant--now that's some odds.

[PetaC]

Thank you both so much for your input - it really is a great help, i guess i just want reassurance from people who understand - no one i know has these problems or even really knows much about the whole celiacs thing so i guess i have been feeling really lost - it is really hard when doctors dont have the answers - the thing is, they dont tell you that the gastroscopy isnt completely accurate - that is something i had to learn myself from researching. It really is frustrating isnt it - i feel better knowing that there are others that have had negative blood tests and biopsies but have benefited from the gluten free diet. Thank you so much

[aikiducky]

Hi Peta, just wanted to add one more "me too". I'm gluten free without positive tests as well. I feel so much better that I refuse to go back on gluten in order to get tested.

Remember, the gluten free diet is mostly just a hassle, it's inconvenient, but that's all, otherwise it's a very healthy way of eating. So you can't do yourself harm by trying it, and if it helps and you start to feel better, it's soooo worth it.

Pauliina

[Guest nini]

I also suggest just trying the diet now. You've already had your testing, which is only definite if it's positive, if it's negative, it just means, we can't find anything yet... My daughter was sick from birth, had a lot of the same symptoms I had since I was a baby, I was dx'ed with Celiac when she was 3, her tests were negative, but when I put her on the diet it was obvious that gluten was the culprit, especially when after a few months she got a hold of an oreo cookie at daycare and was sick for a week. Several of the experts that I have spoken with personally feel that the "biopsy as gold standard" for dx, is quickly going by the wayside in favor of positive dietary response. Positive dietary response is THE MOST VALID diagnostic tool, and my guess is that if you were previously very healthy, you've only recently had something trigger this, and your body just may not be producing enough antibodies to gluten to show up on any testing yet. This is a good thing, if gluten is your problem you should start to feel better fairly quickly on the gluten-free diet, well once you get past the gluten withdrawals that is!

[jerseyangel]

Hi Peta,

I also feel that you should try the gluten-free diet for a minimum of 6 months. You're still relatively young--and may have caught a problem before it had a chance to show up on a test.

The biopsy has to be done correctly (8-10 samples) and read by a radiologist with experience. There is considerable room for error there.

Please do the diet 100% to give it a fair chance. I'm sure that by reading here, you know to check everything you put into your mouth or use on your body. Make sure your kitchen is safe, too. We can help you with all of that--just ask anything, anytime

[daffadilly]

I agree that Postive dietary Response is the final diagnosis for celiac/gluten intolerance. If you really want to know what is going on, you can test thru Enterolab.com, no doctors orders needed. You can also get your genes tested there. If you do test with them, please let us know the results. My family has DQ1, so far we all have two each, which is awful. I would be interested to know if you have DQ1.

also, be sure to get a copy of the blood test that they ran with the results. Never just take the doc word for it that you are negative...