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Question Regarding Non-gi Type Symptoms

Guest missyflanders

By Guest missyflanders
in Post Diagnosis, Recovery & Treatment of Celiac Disease

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Guest missyflanders
Guest missyflanders
Posted

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

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gf4life Enthusiast
gf4life
Posted

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 Explorer
Karina
Posted

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 :blink: . 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
Guest missyflanders
Posted

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

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