Should I Have Waited?

[sobeit]

Hi guys. I need some advice and need to vent at the same time.

I have most of the symptoms for a gluten intolerance including constipation, diarrhea, bloating, mental fogginess, fatigue, headaches, dizziness, and tingling in my hands and legs that have gotten progressively worse. I also lost about 20 pounds in about 10 months.

I've been to all kinds of doctors and have been ruled out for other major medical issues which led me to suspect that I have a gluten intolerance. My doctor sent me to a GI specialist who just completely dismissed the idea of a gluten problem without any investigation. I explained all my symptoms to him and he basically said he doubts it is a gluten issue without running any tests or probing for more answers. He did perform an upper endoscopy three weeks ago and did not take any biopsies because he "didn't see anything that indicated a Celiac problem" while performing the endoscopy. He said he didn't even think there was a point in the endo but did it because of my weight loss.

I was pretty much fed up with doctors and waiting forever to not get an answer, so I decided to go gluten free starting on 9/6 (two weeks ago). After about a week, I have been going to the bathroom everyday and my stools seem much more normal in consistency. The bloating has been better, although all the other symptoms remain the same. I think I'm starting to question myself since I don't have an official diagnosis and am being impatient. Not seeing improvements in other areas is kind of bumming me out.

I'm actually scheduled to have a colonoscopy on Oct 1 (10 days from now) and am wondering if there will be an impact on the test in anyway since I went gluten free for two weeks. Should I have waited to go gluten free? And why is it so hard to find a good doctor? Is it just me? Argh!

[eatmeat4good]

I really don't know why it is so hard to find a Dr. that "believes" gluten is a problem. That is ridiculous that they did an endoscopy but no biopsy because it didn't "look" like you needed one? I thought it was microscopic damage they look for to diagnose Celiac. Going gluten free will not effect the colonoscopy. However if you want to ask them to do anothe endo WITH biopsy at the same time, you might be able to have it done at the same time. Then you would want to keep eating gluten until the test. However, if you are fed up with the Dr. and the tests, you can just go gluten free.

For some reason I think the publicity of the Gluten Free Diet has unfortunately caused Dr.'s to look at it like it is a fad rather than the undiagnosed medical epidemic that it is.

It is a travesty that they do not suspect, recognize, or diagnose Celiac/Gluten Intolerance.

The only thing you can do it a good trial of the diet to see if it resolves your symptoms. I'm not surprised the other things haven't resolved yet. It takes a while to get healing. Some people have immediate relief and others take weeks or months to see the symptoms resolve. At least you already have some relief in stomach and digestive areas.

Have you been checked for vitamin deficiencies?

Might be a good idea.

Then you would know more about what supplements you need.

[AVR1962]

Your not alone in this journey. As you read people's posts most of us have had problems with docs. I too reached the point, like you going thru test after test, to try going off glutens and that's when I started feeling better. Once I told doc what I did, he then tested me for Celiac but I was already on a restricted diet so the results were negative. They then wanted me to go back on glutens for 2 months.....made it to day 12 which now seems amazing to me, I was so sick!

Sounds to me like you have a vitamin deficiency going on. Bad thing you might not be able to get answers from doc about is where all your vitamins levels are. If he is not listening to you he may not be willing to run blood work. If you do get lab work make sure you request a copy. I had work done and doc never said a word to me about all my defiencies. I was sent to an endocrinologist and had to have my lab work and that's how I started figuring this out for myself. I have bone loss in bone my spine and legs. I was a mess.

I read up on every symptom I was having and linked it to a vitamin deficiency....mostly D, B's, magnesium and potassium.

Basically right now you want to concentrate on healing your system. A low acidic diet helps. I also went off dairy for 2 months. At this point I have been gluten free for 5 months and still avoid spice and all processed foods, can foods, boxed foods, frozen meals. Read, read, read labels.....you would be surpised what has glutens in it.

If you are interested in what I had to do as far as supplements let me know, I am more than willing to share.

[ravenwoodglass]

Many doctors are very misinformed where it comes to celiac disease. It sounds like the diet is helping and in the long run that is what is most important. There are quite a few folks on the board who have dealt with doctors like yours and had to resort to simply dropping gluten to see if it helps. At this point you would have to go back on gluten to get any celiac testing. If testing is important for you go back on gluten and request a referral to another GI doctor. A good doctor will give you one. A bad doctor will get offended. If your doctor is the latter I would think hard about having him do another procedure on you, especially if the diet is helping the GI symptoms. It does take some time to heal so I am not surprised that you still have other issues as the GI symptoms are often the first ones to resolve.

Glad to hear your starting to feel better. Sorry you have such an ignorant doctor.

[sobeit]

Thanks for the words of encouragement. It does a lot to lift my spirits. I guess I'm just anxious to see if there are any improvements because I don't know what else it could be if it's not a gluten issue. I guess I just have to be patient!

Eatmeat4good, I really don't think he will do an Endoscopy at the same time. He didn't even really want to do it the first time. And he knew of my symptoms beforehand but said everything looked fine. I suspect that I may have some sort of vitamin deficiencies as well, but am not sure what they would be or how I would go about finding out. At this point, I don't really want to ask any of my doctors for anything else. Any advice would be great.

AVR1962, Any advice on the vitamin deficiencies would be greatly appreciated as well. Info on what helped you would be great too. Since starting the diet, everything I've eaten has been cooked personally by me. The only things I've used that are already prepared have been sauces. I've been so cautious that I actually prepare and bring with me a breakfast, 2 lunches (I'm always starving), and a few snacks every day. Then I prepare my own dinner. As for purchasing items, I haven't purchased anything unless it says gluten free or is verified on a gluten free list.

Ravenwoodglass, I guess at this point I'll just stick with the diet and see how it goes. I read that you need to be on gluten for an accurate Endoscopy biopsy result, but wasn't sure if it would have any effect on the colonoscopy. In terms of changing my doctor, I think I've had enough of waiting and doctors for a while. I don't want to go through the hassle of finding a new doctor who would possibly just dismiss the idea too. I guess I'm just jaded with doctors.

Do you guys/gals have any thoughts regarding the colonoscopy? I'm kind of dreading the whole process and idea of getting one. It's already scheduled though, so should I just go ahead with it? I just don't know how I feel about my GI doctor.

Like you mentioned previously, I suspect that I may have vitamin deficiencies (i see undigested food in my stools). I also suspect that I may have other intolerances and possibly a candida issue. I was on a highly processed, fast food, junk food, sweet drinks, and no fruit and vegetable (literally none) diet for years so I wouldn't be surprised if it's messed up in my stomach. Did anyone have these issues as well? I don't even know what order I should tackle these items or how to begin going about it.

Thanks for all your help. It's realty appreciated

[ravenwoodglass]

Do you guys/gals have any thoughts regarding the colonoscopy? I'm kind of dreading the whole process and idea of getting one. It's already scheduled though, so should I just go ahead with it? I just don't know how I feel about my GI doctor.

If your over 50 or have colon cancer in your family history then you could go ahead and get the screening done if you want to. If the whole purpose of the colonoscopy is diagnostic, ie the doctor wants to rule out Chrons or IBD you could wait until you have been on the diet for a bit and see if symptoms resolve and then if they don't you could scedule one. The choice is one only you can make.

If your GP will do vitamin and mineral panels that could be helpful but if he won't then go ahead and get some good for sure gluten free vitamins. We are often low in D, the B's (B12 supplements need to be sublingual) and at times iron. DO not supplement iron unless your doctor says you are low as that can be toxic when taken if you don't need it. We also can benefit from supplements for calcium and magnesium as malabsorption can make us low in those also. If you are seeing undigested food in your stool, other than corn, a good digestive enzyme may help you short term.

[Bubba's Mom]

I'm so sorry the Dr.s you've seen are such jerks! I've been having Dr issues too. My new PCP doubts the DX the gI gave me. It's maddening.

It wouldn't hurt to ask your Dr for blood tests to see where your vitamin/mineral levels are. Nothing ventured..nothing gained? I know the insurance companies make them justify any tests they order, but I would think your symptoms would be enough of a reason to run them?

I recommend a good gluten free multi vitamin, calcium/magnesium, D, folic acid, and fish oil to start. Fish oil is an anti-inflamatory and really good for you. CoQ10 is good too, but it's pricey. It helps with new cell generation and helps healing.

I wish these Dr.s would get up to speed on this disease! It's rediculous how little they know.