Savannah---I have celiac disease, you have symptoms of this disease too, be it celiac disease or gluten intolerance. Fatique can be the #1 symptom for some of us, as is low iron. My sister's iron level was so low, she had to have iron transfusions every Wednesday for a time. Once they diagnosed celiac disease and she went gluten free, she has not had to have the transfusions. Celiac is the #1 autoimmune disease in the world, and the most undiagnosed. Neuropathy is another symptom.

They can do a blood work up for this disease now, as a starter. There are others here who have found going gluten free really helps them.

I have a ? about celiec. I have had severe constipation but bad stomach issues for many years. No diareah. Anyhow stomach aches like you want to stay in bed. I was tested a few times by blood work for gluten issues but it came back negative. I also read it takes awhile to get dx. Now the stomach issues were for years and then I developed rsd, pn,the eye issue,skin issue. I am trying to look out of the box I guess cause the reason behind my issues is unknown just that it happens to people.
I agree about when you want to give up with docs to have a family or friend pusher. I get annoyed with them but usually I come around. I said I would stop seeing docs about 10 docs ago. Sometimes I just need a break cause it is very draining. I don't know if that is harmful or not. Also maybe do a search on here of your area. For me patient refferals are the best. Not from another doc or random.

I also have many questions about celics disease...can you have it but have be sympton free? And do my symptoms should like Celiacs?

A year and a half ago I was treated for H-Pylori, however, when I went to see the doc about my issues, they were not the "regular" symptoms of an ulcer. The doc just checked me for H-Pylori because he had no idea what to check for...my symptoms were this - over a period of about 9 months I have noticed that when I have a b.m. I would get sick to my stomach. This continued on and off until (on 4 ocassions) I actually threw up while on the toilet having a b.m. Sorry to be so graphic...while taking the meds for H-Pylori and then for many months after I did not have this problem. However, I see it is now creeping back and always after I have a meal.

Any opinions?

Good grief, Leslie, you should see a gastroenterologist! What you describe could be the signs of a partial blockage or narrowing in the intestine, causing you to vomit when your gut can't move. No matter what the cause, you need to see a specialist. However, be forewarned, gastroenterologists and neurologists are close cousins when it comes to frustrating patients. (I had severe ulcerative colitis, had my entire colon and rectum removed, an internal reservoir known as a j-pouch constructed so I do not have to wear an ostomy bag. The medications they used either caused or accelerated my neuropathy.)

I hate to say that gastrointestinal issues are the fastest growing disease processes diagnosed today. Whether it is from reduced immune system function from all the toxins in our environment, or all the antibiotics and other drugs we have ingested throughout our lives. . . . human beings seems unable to withstand the changing environment and diet they are now experiencing.

It isn't glamorous or fun, but if you have not had a colonoscopy, it might be time. That is often the first step in diagnosing digestive disorders that can cause cramping and vomiting. But while you are doing that complete blood work-up should be undertaken too, to be sure you don't have another issue contributing to your distress.

Lefthanded -- sorry I left that out. That was my first concern...I did have a colonscopy a few weeks after the H-Pylori was found so I do know that I don't have any blockage. Only a diverticuli or two but other wise he said my colon was in good shape..

H-Pylori has been shown to cause an autoimmune type of neuropathy. Or a molecular mimicry type neuropathy. When I first got PN, the blood tests showed that I was borderline anemic (iron), and I was also having gut problems and it turned out to be helicobacter infection as well. These were my very first diagnostic tests for my PN.

Over the last 3 yaers I have read the posts of many PN'ers who describe this overwhelming fatigue with their PN. I was also one of them too. I had an autoimmune type PN. I also had autonomic instability or liability. Not necessarily autonomic neurpoathy as my autonomic testing was normal too. But I knew that something wasn't right and I had fatigue yet I was also anxious. These can very well be signs of an unstable autonomic system.

Luckily in time the fatigue went away.

The test for celiac is a upper endoscopy biopsy. I had it done this spring and it was negative although I really don't tolerate wheat and for years have keep my diet fairly gluten free.Also a low fat diet.
The reason my doctor quit is I have been tested up the WhaZoo. Actually thats a term docs use and its usually accompanied by the eye roll and a look at the nurse. Sick of it.
I'd love to give up on docs but then reality hits me and in the last few weeks I've become so exhausted I am not safe driving much less working.Remember I have NO sick leave as i work for myself!
I'm also very very pale. I look sick, strangers ask me how I'm doing. I look like I have a bad flu. I don't have MS but thats how this feels.
I understand Docs not knowing what to do but they should give me some direction as to where to go, what sort of doc to see next.
Thanks

Aussie 99
How did they decide you had auto immune PN?

I had H-pylori about 8 years ago. Now I have some sort of sensory motor polyneuopathy.

Aussie...I feel the same sort of way..very fatigued but anixous as well. I'm hoping my neuro will order more testing when I see him on Thursday.

Kelly

I apologise it took me so long to reply.

My diagnosis was really a process of elimination. Meaning I was tested for alot of things, including autonomic testing and also NCS's but everything came back normal. My ESR was always high. Through a careful history and also the progression of the illness it pointed to a monophasic generalised sensory motor neuropathy as a result of molecular mimicry. I don't have empirical evidence... but it fits. My neurologist is a small fibre/autonomic specialist.

I also aquired other vague illnesses that came and went after my onset of PN that are also considered autoimmune such as CFS,fibromyalgia,hypersensitivity, and also chemical sensetivity. I have my good days and I have my bad days. It takes 3-4 years for the human body to replace all the cells and blood. (I read this). So I reckon, another couple years I'll have been replaced twice. I should feel pretty good by then.