Tired Of Doctors! Need Diagnosis

[Kimberly1966]

I'm pretty much at my wit's end! I "think" I've actually diagnosed myself after all these (6) years! The problem is, my doctor said it wasn't celiac but would send me anyway for blood work. I didn't ask what type of test but whatever it was he said it was normal but for me to try the gluten free diet.What little research I did do, I knew a biopsy would properly diagnose me. I went to a Gastro doctor. I told him my symptoms, before I could finish, he talked over me and said I had IBS and wrote me a script and pretty much said "see yah".

I've known along it's food, but could never figure out what? I eat healthy or at least I try. Whole wheat EVERYTHING! Turkey sandwiches for lunch and I'm so sick of chicken I could puke. I did try the gluten free diet for only a week, it's all I could take. I had Anxiety so bad not to mention constipation, although I will admit it was really weird not having diarrhea, but I couldn't take the anxiety! My current symptoms are:

Excessive Hunger after meals

Nausea

Chronic diarrhea

Some days I feel like I have low blood sugar yet my sugar is normal (I've read celiac disease can mimic hypoglycemia)

Fatigue

Moody

Sometimes I have problems sleeping

After trying the diet and experiencing another whole new group a symptoms, I went back to my frosted mini wheats for breakfast and taking my compazine for nausea everyday. It's like, either way, I felt horrible. I don't know what to do now, doctors look at me like I'm crazy.

Any suggestions???

[lizajane]

you have a lot of the symptoms i had. i think you need to try it for longer than a week. and make sure you are REALLY not getting any gluten AT ALL. you may also need to give up dairy- others know more about this than i do. i had no issue with dairy. your body can go through a lot of changes when you are healing and you may just need more time to adjust.

[mushroom]

Hi Kimberley:

Yes, this diagnostic process is difficult. First of all, you need to know your blood results were correctly interpreted. There are people who post on this forum who can help you here. Get a copy of the results and post them, including the reference ranges. The fact that your doctor suggested you try gluten free would seem to indicate that the results were equivocal, if he even did all the right ones. (Yes, we are cynical here, because often they don't order the full panel.)

Certainly your symptoms are suspicious. But often once we get rid of the gluten we find that we have other intolerances as well that were being hidden by the overwhelming gluten reaction. This is why, when you go on the gluten free diet, it is best to eat very simply, eliminating most of the other known food allergens (dairy, eggs, soy, corn, e.g.) and see how you feel. I know this seems very restrictive, but it saves a lot of time having to go back and do an elimination diet later. If you start out with chicken, fish, rice, fruit, vegetables and see how you handle that, and if everything is okay you can add in things one at a time until you find something that upsets you, it saves a lot of time.

Keep us posted of your results and progress.

[Serversymptoms]

I wouldn't be surprise if there is multiple health problems, or say 3 health problems that are leading to other things as I suspect with myself. Being 17 years old, no one is really listening, it's all just really horrible... but I supposely should be having a appointment within a few days. I'm really rage.

[no-more-muffins]

Have you considered testing at www.enterolab.com? They have tests for gluten, dairy, soy, egg and yeast plus some others. A lot of people have found answers there. And you definitely need to try the diet for longer. Anxiety and gluten withdrawal symptoms are common (although annoying and uncomfortable). I read on another threat that anxiety can come from a magnesium deficiency. You may consider a supplement and see if that helps. On that thread it also says mag can help with constipation, so you could try that. I'd definitely try the diet for longer and make sure you eliminate all traces of gluten.

[Kimberly1966]

Thanks all of you so much! I have tears reading all of your replies, seriously, this is the first time/day in years that I don't feel like I'm crazy. There are actually others out there, it's not just me. I'm feeling hopeful.

I want to try the diet again, but that anxiety is one symptom that is super hard to handle. My doctor did give me .25 mil of xanex which works but I don't like taking pills. If I know the anxiety will come to end, I could make it. Does anyone have itchy skin too? I would love to my energy back and not to mention my mood. I have to force a smile it seems. I'm in the metro Detroit area, I found yet another doc to see. I'm at the point now that if another doctor talks over me and disregards my symptoms I'm simply going to get up and walk out.

Now you have me curious, I'm going to call my doc today and get my blood work results. I'll let you know when I get them. I will definelty try magnisum, you never know, something just as this may help.

I'm so glad I found this blog site! thanks again everyone!

[mushroom]

Yes, I still have itchy skin. For me it is a sign of a food intolerance. It is getting better since I no longer eat anything with potato flour in it (just giving up potatoes wasn't enough). I do think you should take that as a sign that you are intolerant to something else besides gluten. Once we give up gluten, we often start eating more of something else and you find out that's a problem too. Gluten is a real mischief maker.