Symptoms...not Diagnosed Yet...please Help?

[sweetm79]

Hello. I am hoping maybe you guys could help me figure out what may be going on with me. Ok...here are my symptoms and history. I will try to be as brief as possible.

Current symptoms:

Joint pain

B12, magnesium, and iron deficiencies

Cramps in feet and legs

Itchy dry skin on cheeks and nose

Sores in mouth/tongue

Fatigue/exhaustion

Abdominal pain/swelling

Headache

Unable to concentrate

Insomnia

Hot flashes/chills

Dizziness

Lightheaded

Filmy/mucous stuff in eyes

Hair loss

Vision/mental?-don't know how to explain this...but sometimes when looking at normal everyday things around the house...i can see them just fine...but can't figure out what they are...either they appear to be something different for a moment or i just don't know what they are...then all of a sudden i figure out what it is...it is weird because i should not have problems identifying them.

Have had all of the symptoms above for about 2 months. But for the past 6 years I have had extreme fatigue. (I am 26 yrs old.) Also, about 6 years ago I gained about 50 lbs...not sure why. I was very active and thin previously. About 2 years ago I lost about 30 lbs...again not sure why....no change in diet or exercise. I have also been sick a lot during the past 6 years....frequent uti, flu, strep, colds, etc.

I was diagnosed with small bowel dysmotility about 9 years ago. I was taking domperidone to treat it until last November. I stopped taking it because it was causing extremely high prolactin level.

I was also bitten by a tick about 2 months ago...about a week before all of the above symptoms started. I was tested for lyme and other tick related illnesses and was negative.

I saw my GI doctor and he did an endoscopy today because he suspects that I may have celiac disease. He said that everything looked normal but he did some biopsies and would have the results in a couple of weeks.

He said that my blood work did not show anything that indicated celiac...and he also did ANA and said that I did not appear to have anything inflammatory.

So...does this sound like Celiac? Or does it maybe sound like something else? I am just so tired of feeling bad and I don't want this to take forever to diagnose. I have been misdiagnosed before and almost died because of it. Don't want to go through that again.

Please help?!? I would appreciate any advice you can give me. Sorry this was so long. Thanks for listening.

[mommida]

I just wanted to post to bump this up.

You might want to look into Selective IgA Defiency. It can explain why some Celiac screening comes back negative, when it is Celiac Disease. Gluten sensitivity is seemingly harder to diagnose. Gluten Ataxia can cause more neurological disturbances like you describe, and so can a yeast overgrowth. Many people here are more informed than I am and will try and help you the best that this collective group can.

L.

[sweetm79]

I just wanted to post to bump this up.

You might want to look into Selective IgA Defiency. It can explain why some Celiac screening comes back negative, when it is Celiac Disease. Gluten sensitivity is seemingly harder to diagnose. Gluten Ataxia can cause more neurological disturbances like you describe, and so can a yeast overgrowth. Many people here are more informed than I am and will try and help you the best that this collective group can.

L.

Thanks for your response Mommida! I will look into selective IGA deficiency, gluten ataxia, and yeast overgrowth.

[mommida]

When you are done testing, whatever the results are, I would would try the gluten free diet. What are you doing for the vitamin defiencies? Some of the symptoms are associated with the defiencies.

L.

[sweetm79]

When you are done testing, whatever the results are, I would would try the gluten free diet. What are you doing for the vitamin defiencies? Some of the symptoms are associated with the defiencies.

L.

I have been taking slow release iron (100 mg), B12 (1000 mcg), magnesium (500 mg) for about a month and a half (in addition to my normal multivitamin). I had blood work done to check my levels on Monday and there has been no improvement in the deficiencies. My GI dr. is going to check again in 3 weeks and if there is still no improvement he is going to start B12 shots. I am definitely going to try the gluten free diet when all this testing is done to see if it will help.

[Nancym]

I was also bitten by a tick about 2 months ago...about a week before all of the above symptoms started. I was tested for lyme and other tick related illnesses and was negative.

Just saw an episode of Mystery Diagnosis where a girl that had an enormous list of symptoms of Lyme's disease had a test and came out with a false negative. Poor thing, she got very, very sick and doctors couldn't find anything, eventually they said it was all in her head. Finally she came across another sort of doctor that used a different sort of test and he was able to diagnose it. So don't take the negative as being 100% accurate, on anything really. Doctors treat blood test results as gospel. They're not infallible and not always able to detect things.

Put in "Lyme disease false negative" into google and just see.

[mommida]

You might have better results if you take a liquid form of vitamins. There was a post recently about sublingual B12 being just as effective as the injections (in think it was cases of Perncosios Anemia [spelling is probably wrong]).

I agree with the other poster, I wouldn't rule out any chance of false negatives.

L.

[jerseyangel]

I wanted to weigh in on the tick angle--recently, I noticed a red bite-looking mark on my husband's arm. It had a perfect circle that looked like the outline of a bruise around it. He was supposed to go out of town in 2 days, and I strongly urged him to show it to his doctor before he went--it looked like it could be Lyme. He was also having headaches, stiff neck and extreme fatigue (which is rare for him)--just not feeling well. The doctor took blood, but told him there are a lot of *false negatives*--so based on symptoms, he was put on 3 weeks of antibiotics. During the first week of treatment he was still very tired, but just finished up the prescription, and is feeling back to normal. The blood test came back negative, but the doctors (2 of them) agreed that he should continue with the treatment. I did some research on this--when treatment is given in the early stages, the vast majority of people have no further problems. Just thought I'd share--good luck with everything, and I hope you get to the bottom of it all soon!