A New Doctor Or Go Gluten Free?

[kerouac]

Hi all,

First time here on the boards. Definitely a real wealth of information to get through here, so apologies if this is covered elsewhere in one form or another or is in the wrong section. I have been dealing with digestive issues for a good 7 years now (I am 32),things such as bloating, diarreah, sore stomach, are fairly common. I used to chalk it up to lactose intolerance, as I can't drink more than a glass of milk without ending up on the toilet for the rest of the day (sorry if that was too graphic ), but I find that even if I avoid dairy I still get sick more often than not. I am at the point where I generally carry Immodium with me when I go out to eat, and am often nervous to eat anywhere but home. I have also been suffering from depression and anxiety for the last ten years, and am often tired. I found alot of this improved when I went on a low carb diet, and was eating mainly vegetables and protein.

I finally decided to bring these issues up with a new doctor of mine during a physical, and he sent me for a celiac blood test. The test came back 80% negative with only a 20% chance for celiac. The only number I remember, was that my IgG was 70, everything else was normal. I also showed a vitamin D deficiency and high cholesterol. Based on this, the doc says I don't have celiac, and he pretty much said I have IBS, which he thinks is caused by my anxiety. I have a real hard time buying that though, as something just does not feel right. Just this morning, I ate some ceral (wheat biscuits) and immeadiatly went to the bathroom and felt very tired afterward. My wife and I also just came back from dinner out, and we ate pretty much the same things, and she feels fine, where I feel tired, bloated and grumpy. Obviously something is up.

So my question, after that long spiel is this: should I go back to this doctor and insist on seeing a specialist, or should I just try a gluten free diet for a while? I am just really tired of feeling the way I do most of the time, and I get the vibe that my doc doesn't take it all that seriously (I'm actually kind of offended that he insinuated that it was all mental) I live in Canada, and it's kind of hard finding another doc, as there is a bit of a shortage in my area right now, so I am at a loss as to what to do...just want to feel like a healthy young man, know what I mean? Thanks a bunch for any help you can offer.

[mushroom]

Hi all,

First time here on the boards. Definitely a real wealth of information to get through here, so apologies if this is covered elsewhere in one form or another or is in the wrong section. I have been dealing with digestive issues for a good 7 years now (I am 32),things such as bloating, diarreah, sore stomach, are fairly common. I used to chalk it up to lactose intolerance, as I can't drink more than a glass of milk without ending up on the toilet for the rest of the day (sorry if that was too graphic ), but I find that even if I avoid dairy I still get sick more often than not. I am at the point where I generally carry Immodium with me when I go out to eat, and am often nervous to eat anywhere but home. I have also been suffering from depression and anxiety for the last ten years, and am often tired. I found alot of this improved when I went on a low carb diet, and was eating mainly vegetables and protein.

I finally decided to bring these issues up with a new doctor of mine during a physical, and he sent me for a celiac blood test. The test came back 80% negative with only a 20% chance for celiac. The only number I remember, was that my IgG was 70, everything else was normal. I also showed a vitamin D deficiency and high cholesterol. Based on this, the doc says I don't have celiac, and he pretty much said I have IBS, which he thinks is caused by my anxiety. I have a real hard time buying that though, as something just does not feel right. Just this morning, I ate some ceral (wheat biscuits) and immeadiatly went to the bathroom and felt very tired afterward. My wife and I also just came back from dinner out, and we ate pretty much the same things, and she feels fine, where I feel tired, bloated and grumpy. Obviously something is up.

So my question, after that long spiel is this: should I go back to this doctor and insist on seeing a specialist, or should I just try a gluten free diet for a while? I am just really tired of feeling the way I do most of the time, and I get the vibe that my doc doesn't take it all that seriously (I'm actually kind of offended that he insinuated that it was all mental) I live in Canada, and it's kind of hard finding another doc, as there is a bit of a shortage in my area right now, so I am at a loss as to what to do...just want to feel like a healthy young man, know what I mean? Thanks a bunch for any help you can offer.

Hi Kerouac, and welcome.

Can you get a copy of your test results with the reference ranges and post them here so our "experts" can take a look at them? Often what doctors call "normal" or "borderline" or "chance" does not mean a lot. The results themselves are what count. You are in a rather large group of people who have celiac or gluten intolerance who have been told that their symptoms are all in their head. If you are non-celiac gluten intolerant, rather than diagnosable celiac, your symptoms can be the same and the treatment is the same, a gluten free diet. For many doctors non-celiac gluten intolerance flies under the radar, so to speak.

[kerouac]

Hey Mushroom, thanks for the reply. I am going in to see him next Friday, so I will see if I can grab those numbers. Believe it or not, it was like pulling teeth to grab my cholesterol numbers the last time I called in. I was told it was confidential and not available to the patient without a charge...go figure. Might be different if I am in an appointment with him, so I will see. I do recall seeing a 20 for one of the antibodies when I glanced at the sheet, but that's probably not much help

Some additional info if it helps: I seem to have alot of allergies on top of the above, that I can't pin point. I get the sniffles, sneezing and runny nose when I eat out, and I also noticed it when I drink V8 vegetable juice and eat grapes. Yeah, I'm a wreck (or a crazy) it seems

[Lisa]

I was told it was confidential and not available to the patient without a charge...go figure.

This statement made me so angry! These are YOUR records, and you paid for them. DEMAND your results!

OK, I'm calm now........

If you don't get satisfaction from your doctor, try the diet for a month or two. It might just surprise you.

[mamaw]

I agree with Lisa- you have every right to obtain copies of all your testing results... I do know that if you are in a lawsuit or workmens comp the offices will charge for records but not to an individual person. For that reason alone I would try one more time & it they hassle you I would find a new doc.

Honestly , no one has ever died from lack of eating wheat... if you can't find a doctor or you are tired of the hassles try the gluten-free for at least three months & see how you feel at that time. But you do need to remain very strict about the no wheat, rye , barley to get a good picture if the diet can help you. You could be gluten intolerant & not have any villi damage. A good thing... After the three months then you can choose if you continue on the gluten-free diet yourself. No doctor can force you to eat what you do not care to eat!

You also mention milk or dairy.... did you know the casein( protein) in milk is also broken down at the tips of the villi... lactose is the sugar in milk..

It would help to post your lab results to see if all the testing took place.

[kareng]

Hey Mushroom, thanks for the reply. I am going in to see him next Friday, so I will see if I can grab those numbers. Believe it or not, it was like pulling teeth to grab my cholesterol numbers the last time I called in. I was told it was confidential and not available to the patient without a charge...go figure. Might be different if I am in an appointment with him, so I will see.

In the US the info contained in a medical record is yours but... a hospital or md has the right to charge you for the "costs" to get a person to copy them for you. I've been out of this for a while but I know that several courts upheld that a fee of $15 plus $1 per page was valid. Sent directly to another MD for care is free.

I'm not sure of the rules in Canada. The health system is different. Your best bet of getting the info may be during an appointment. I wouldn't mention that other people will be analyzing the numbers. Maybe just that you like to keep this stuff for your records.

[Lisa]

Thanks for the clarification. But she should never be denied her records, even with a minimal fee, as she was told it was "confidential".

[kareng]

Actually, I never allowed my hospital to give info to anyone who called in. It is the responsibility of the MD or hospital to protect the info. I can't be sure who is really calling & found a lot of people who were not who they said they were. We would call back to that hospital or the home number & find they knew nothing about wanting info. If the office calls the patient at the number that was given at the appointment or you are standing in front of them with ID or they know you, then they can give you the info.

I am currently having issues with my doctor that doesn't think the info in my med rec would mean anything to me. The nurse is more helpful.

[Darn210]

So my question, after that long spiel is this: should I go back to this doctor and insist on seeing a specialist, or should I just try a gluten free diet for a while?

I will answer your question with a question back at you . . . what would you need in order to maintain a gluten free diet? Do you need a doctor's diagnosis? Or will you be able to maintain it because you feel better. A trial diet will probably answer your question on whether gluten is a problem for you. However, any testing needs to be done before you go gluten free. If you decide after your trial diet that you really want a diagnosis, you'll have to go back to eating gluten daily for a couple of months.

Also, just wanted to clarify what mamaw was trying to tell you (and maybe you understood but perhaps not all readers of this thread did). . . you may be able to add dairy back to your diet if indeed you have damage in your gut from ingesting gluten. Once your gut heals, you may be able to process dairy again.

[momxyz]

Kerouac, my daughter had been having problems with constipation for quite some time. Then last spring she began experiencing insomnia, anxiety and depression. I was loathe to put her on anti-depressants right away. As luck would have it, although she began seeing a counselor right away, the referreal to the psychiatrist took quite some time, giving me the chance to do some research. (I had a lot of help from the folks on this board - thank you to all!)

I very quickly found connections between gluten and her issues..... which was very interesting,conidering that 6 years prior she had been tested for Celiac's, due to the fact that she had fallen off her growth rate, was having occasional bouts of tummy aches and diarrhea. She had one antibody that was slightly elevated, that was it, all her GI series (upper and lower) were normal. So they told us she didn't have to avoid wheat.

Well, after considering all this, I suggested to her care providers that gluten might be contributing to her current problems. This idea did not get much consideration from them....

I suggested to my daughter that she might try a gluten free diet while she was waiting to see the psychiatrist (who would be the one to prescribe the meds.) The appointment wasn't for another 5 weeks so we had time to objectively observe the effects.

The first thing to improve was the insomnia, followed by the constipation. The improvement in the depression was more gradual, but she was beginning to feel better, and those of us around her noticed a considerable lightening of moods. She did end up on medication for anxiety, but only required a very lo dose. while the gluten free diet may have not represented a complete cure, she felt it certainly made a big difference. Being a teenager, she was prone to an occasional "cheat" the first few weeks.... but she did experience reactions - stomache cramps, diarrhea, or a complete downturn in mood.... She herself saw the cause and effect in this and so has been self motivated to maintain the gluten-free eating style.

Going forward I am not sure what she or I will say to our physicians. Regardless of their opinions, we have ours. Having "MD" behind your name does not necessarily make your opinions more valid.

[kerouac]

Hey all,

Thanks for all the replies, they are greatly appreciated. With regard to the medical records, things work a bit different here in Canada since our healthcare is covered. I do think the medical secretary was being a bit difficult, so I will see what the doctor says. I was not expecting her to give me the info over the phone; I simply wanted to know if I could pick up a photocopy, so it shouldn't have been much of an issue with regards to confidentiality, but who knows.

As to what I need to live a gluten free life? Sometimes I don't think I need a doctors diagnoses, as it seems I would just be spinning my wheels and wasting more time. I am really eager to just start something that I hope will make me feel good for once in my life... but then, I start thinking it would be crazy to make such a huge dietary change without knowing for certain. So yeah, I am really confused, as you can probably tell.

[kerouac]

**edited*