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What Is "normal"?

Guest missyflanders

By Guest missyflanders
in Coping with Celiac Disease

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Guest missyflanders
Guest missyflanders
Posted

I was diagonosed with bloodwork and biopsy last September. Since then, my GI symptoms are better although not completely cleared up (I think I have IBS with constipation so I started taking fiber and it is helping). But I have a lot of joint and muscle pain. I had some vision problems which have cleared up now. I am exhausted all the time. The doctors have run every imaginable test on me - everything is normal including MRI for MS. Then they gave me antidepressents and told me that it was anxiety and depression. I have been on the meds for 2 plus months with no significant improvement. I am very careful, most of the time, with what I eat. My bloodwork now shows no celiac antibodies.

I am really beginning to believe that this may be normal for me. I HATE the thought of that. I am in school and have 3 kids. I NEED to be able to function without naps, etc. I am not sleeping well at all at night. On the other hand, I fit a lot of the criteria for fibromyalgia. I am seeing a different neurologist and a rhuematologist in August.

My mom and sister are both also celiac patients and they feel GREAT. What is wrong with me? Is this normal and I should just accept it? I hate going to doctors anymore because I feel like a nut case.2

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Pegster Apprentice
Pegster
Posted

Just a thought... Has anyone checked your thyroid levels? I got a diagnoses for hypothyroidism from my regular dr the same day I heard that I had celiac disease from my dermatologist. One of the mian symptoms of the thyroid is tiredness. These autoimmune diseses are linked. Another thought...any full time student with three childten is bound to be tired. You have some tough jobs. Good luck!

Guest jhmom
Guest jhmom
Posted

HI Missy,

I am sorry to hear you are not feeling well but glad you do not have MS. I am in the same boat at you except I am being tested for Lupus. I have been gluten-free since last Sept and only shown minor improvement. I also have htpothyroid but I do not remember experiencing the same kind of fatigue with that as I did with possible Lupus.

It is good that you are seeing a Rheumy and I suggest making a list of all of your symptoms and taking it with you on the appt. Also try your best to explain your fatigue, by telling the doc what time you go to bed, what time you get up and any naps you may have to take during the day. I told my doc I had fatigue but she did not grasp it until I really explained it to her.

I hope you begin to feel better soon, please let us know what the doctors say next month!

flagbabyds Collaborator
flagbabyds
Posted

Defenitly get your thyroid checked! I was so tired before mine was dx.

Guest missyflanders
Guest missyflanders
Posted

I had my thyroid checked and that was fine. I also was checked to see if I had the antibodies for Lupus, which I did not. Thanks for the quick responses. I will let you know what I find out. I have some days better than others. Yesterday was killer for the pain, but today is not as bad. I am sure I will be napping soon though, as soon as I get the little ones to nap.

bigapplekathleen Contributor
bigapplekathleen
Posted

HI Missy,.

Have you had your hormone levels checked? Have them check estradiol levels. Grab a copy of the book (or thumb through it at the bookstore) "IT'S MY OVARIES, STUPID" to see what the 'optimal levels' are for hormones. That has a huge effect on energy levels.

Another thought: are all of your medications gluten-free ???

Hope you get some answers soon,

Kathleen

Guest missyflanders
Guest missyflanders
Posted

I went to amazon .com to look at the book. It looks like an interesting book. It was for sale for 2.95 so I ordered it. I will review it and bring it to the doctors appointments in August. I just want to be able to be "fixed". Thanks for the advice. I will let you know what I think.

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KAthyB Newbie
KAthyB
Posted

Hi Missy, You are a carbon copy of my 18 yr.old celiac daughter. GI celiac symptoms are slightly improved by the diet but reflux, joint and muscle pain and vision are a problem. Vision problems began with a bout of conjunctivitis and she is awaiting her glasses so she can drive at night. She had 20/20 prior to the infection. She saw a Rheumatologist this week, Lupus and Rheum factor were negative but she has Ehler's Danlos Syndorme type 3 (hypermobile joints) and the doc recommended Vioxx to relieve the joint and muscle pain since she can't tolerate ibuprofin because of the reflux. I think the celiac disease is the culprit and the most notable side effect of the gluten-free diet has been reduced leg pain. I thought the vision problems were related to the celiac disease and your case strengthens my theory. Jsut wanted you to know that you are not alone.

Kathy B

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    • catnapt
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