Diagnosed By Biopsy And Labs

[Paula Wallah]

I am new to this forum and am in hopes of learning more about the new life I have found myself in. I have been very ill for nearly 5 years and was totally debilitated for 2 of the 5 years. Last spring, out of desperation, I went to the Mayo Clinic and based upon labs, the doctor told me that I have Celiac Disease. I went gluten-free immediately, (that was April, 2010) and got sicker instead of better. In December, 2010, I underwent an upper scope and was diagnosed by biopsy with Celiac Disease. My symptoms still persist, and unless someone else here tells me they have the same (or have had the same) symptoms, I am beginning to think that Celiac Disease is not my only problem. Here are my symptoms:

1.) I call it "head-weirdness" - I am not dizzy, but feel like I'm not getting enough of what my brain needs or something.....it seems when it happens (which is most of the time), I can hardly hold my head up.

2.) Ears ring loudly constantly (yes, this drives me nuts!)

3.) Feet/toes twitch (visibly) and this gets worse with exertion

4.) Weakness ("jelly" legs, which keeps me from walking much for fear they will fold)

5.) right-sided pain in the area of my rib cage

6.) fullness in left side of my neck that makes my ear and left side of my head feel like they might explode

7.) cramping upon eating (75% of the time)

8.) as soon as I begin eating, I feel like I could fall asleep

9.) white coating on my tongue

10) irregular bowel habits (it is either one way or the other, never normal, but usually constipation)

11) often feel nauseated during meals/snacks

Thank you for reading and responding. I appreciate it very much.

Paula Wallah

[ravenwoodglass]

What are you eating? It is best to go with whole unprocessed foods as much as possible. Did you get a new dedicated toaster, cutting boards and replace scratched pans? Have you checked all supplements, OTC and script meds? Some supplements may say gluten-free but still contain wheat and barley grass, you don't want those. Many of us also avoid gluten ingredients in topicals and find that baking with wheat flour for others can be a problem. Have you had your blood tests rerun to see if you antibody levels have gone down? That would be a good idea and also have them do vitamin and mineral levels. Many of us also have other intolerances, the most common being soy and dairy but it does sound like gluten is slipping in somewhere.

[frieze]

I am new to this forum and am in hopes of learning more about the new life I have found myself in. I have been very ill for nearly 5 years and was totally debilitated for 2 of the 5 years. Last spring, out of desperation, I went to the Mayo Clinic and based upon labs, the doctor told me that I have Celiac Disease. I went gluten-free immediately, (that was April, 2010) and got sicker instead of better. In December, 2010, I underwent an upper scope and was diagnosed by biopsy with Celiac Disease. My symptoms still persist, and unless someone else here tells me they have the same (or have had the same) symptoms, I am beginning to think that Celiac Disease is not my only problem. Here are my symptoms:

1.) I call it "head-weirdness" - I am not dizzy, but feel like I'm not getting enough of what my brain needs or something.....it seems when it happens (which is most of the time), I can hardly hold my head up.

2.) Ears ring loudly constantly (yes, this drives me nuts!)

3.) Feet/toes twitch (visibly) and this gets worse with exertion

4.) Weakness ("jelly" legs, which keeps me from walking much for fear they will fold)

5.) right-sided pain in the area of my rib cage

6.) fullness in left side of my neck that makes my ear and left side of my head feel like they might explode

7.) cramping upon eating (75% of the time)

8.) as soon as I begin eating, I feel like I could fall asleep

9.) white coating on my tongue

10) irregular bowel habits (it is either one way or the other, never normal, but usually constipation)

11) often feel nauseated during meals/snacks

Thank you for reading and responding. I appreciate it very much.

Paula Wallah

1-4 vitamin deficiency..more than likely.

5 ?pancreatic issues.

7+8+10+11 question whether you are truly gluten free, this includes personal care items and cross contamination.

9 sounds like thrush to me, probiotics and nystatin swish and swallow ( if that is gluten free!)

also have to wonder about over growth of unhelpful bacteria in the gut....good luck

[Paula Wallah]

I am eating gluten-free products (Udi's, Enjoy Life, etc) when I eat breads or pastas. I check everything out before I even think of eating it! I am so desperate to get well or at least improve. If I even suspect it has gluten, I do not consume it.

I was found to be B12 deficient, D3 deficient, magnesium deficient. I also have thyroid issues (hypothyroid for over 20 years, but stable.....then when I got sick, well....it has been a thyroid nightmare since then, never regulated). Those deficiencies have been corrected. Mayo Clinic also discovered that I have osteoporosis (mild), so I supplement calcium every day (gluten-free, of course).

I just wondered if anyone else experiences or experienced the same symptoms as I have. Seems to me with nearly a year of eating gluten-free, I would improve and I have not. If anything, I feel like I have gotten worse.

[ravenwoodglass]

I am eating gluten-free products (Udi's, Enjoy Life, etc) when I eat breads or pastas. I check everything out before I even think of eating it! I am so desperate to get well or at least improve. If I even suspect it has gluten, I do not consume it.

I was found to be B12 deficient, D3 deficient, magnesium deficient. I also have thyroid issues (hypothyroid for over 20 years, but stable.....then when I got sick, well....it has been a thyroid nightmare since then, never regulated). Those deficiencies have been corrected. Mayo Clinic also discovered that I have osteoporosis (mild), so I supplement calcium every day (gluten-free, of course).

I just wondered if anyone else experiences or experienced the same symptoms as I have. Seems to me with nearly a year of eating gluten-free, I would improve and I have not. If anything, I feel like I have gotten worse.

Have you tried eliminating dairy and soy? Quite a few of us have issues with those. I didn't heal fully until I eliminated soy.