Question Regarding Non-gi Type Symptoms

[Guest missyflanders]

I was diagnosed with celiac last September. I was not extremely sick (although I was when I was pregnat) and had the test because my mother had been diagonosed. Doctor confirmed blood test results with a biopsy.

After going gluten-free, my GI symptoms cleared up. No gas, no more bloating and no more generally feeling like my belly hurt.

The problem is I am so tired I have a hard time functioning with my kids at night. My wrists are achy all day with some tingling at times. I have been placed on several meds for this, none of which have helped. Per the dr, I have decreased strength in my wrists/hands. I am lightheaded and feel almost dizzy most days. I even lose my balance at times. I hardly sleep at night. I have a light headache almost every day. My skin is so sensitive to the sun that I get a rash if I just play outside with my kids. I am also coping with some depression.

It is affecting my entire life. I need this to stop. My doctor and the two GI's I have seen can not tell me whether it is celiac causing this or something else. They have referred me to a neurologist, which I see on Friday. Now on top of everything else, I am terrified of what they might tell me. I know that celiac can be related to other autoimmune diseases. (FYI- I have been tested for RA, anemia, B-12, thyroid etc).

Please tell me what to expect or that it is all possibly the celiac. Does it get better, if that is the case? It is 8:30 and I have stayed up "late" to type this.

What would be your next step?

Missy - Mom to Kyle -9, Alex - 3 and Matt, 1

[gf4life]

You may have some other nutritional deficiencies that got worse when you cut certain foods out of your diet. I don't know what they haveto do to test for it but try to get them to test your mineral levels, like calcium, magnesium, potassium, etc. I have been reading a lot about minerals lately and have been checking on liquid ones that are more easily absorbed by the body. I hope that you get your energy restored soon and are able to return to better health. Let us know what the neurologist says.

God bless,

Mariann

[Karina]

Missy,

I am so sorry this is happening to you. I had many of the symptoms you described (constant headache, numbness and tingling in extremeties with weakness, clumsiness, fatigue) My doc thought maybe MS so had a MRI done, it was fine. Before I was diagnosed with celiac disease, I had come up with a theory about those symptoms. They started with me right after I gave birth to my daughter, they lasted about a year (I still have occasional tingling and I do have fatigue). I was taking a progesterone only birth control pill because I was nursing my dd, and I nursed her for about 15 mos (actually the symtoms continued to improve as I weaned her). I did some research and found that those symptoms were sometimes associated with depoprovera which is also progesterone only! I think some of it was hormonal (if not all of it) changes in my body. I also think I was in a poor state of health to be breast-feeding my dd. As she got fatter and fatter, I got skinnier and skinnier . I wanted so badly to nurse her longer but my body just couldn't take it. Now I know I have celiac disease and I can only assume many of my issues ARE associated with that. I noticed you have a little one year old . Could these be hormonally related issues for you as well?

[Guest missyflanders]

Couple more questions....

I think my mineral levels have been checked. At least those that would affect me in any way like this, per the GI saw last week.

Second - I don't think this is related to hormones. I did not breast feed my baby at all. I had trouble breastfeeding the older one and decided not to breastfeed my last baby.

Thank you all for your fast responses. Any other info people have, I would still appreciate it.

Missy