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margotb

Weird Symptomsm + Anxiety

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Hi everyone,

I was diagnosed back in late March 2011 and have been gluten-free since. Overall I have been better and there a but there have been many periods of still feeling very tired and getting frequent colds. The recovery has not been straightforward. Over the last few months I have had more weird symptoms like:

-muscle weakness (feeling tired to climb stairs)

-wrist pain in my left hand and that wrist falls asleep when sleeping and is numb, and I feel like typing worsens it (bad since I need to type)

--the kind of fatigue I had before diagnosis (just wanting to close my eyes and lie down)

--exercise intolerance (it seems like a yoga class can wipe me out for days now and that was not the case before)

I am back on a Paleo diet now with no sugar or procsesed foods. It seems like cutting out sugar helps but I have not gotten to a full-on elimination diet.

My doctor has suggested that it's possible I have CFS or something else. I have to say I am getting totally freaked out that this terrible fatigue, the wrist pain, and other weakness and aches and pains are symptoms of MS or cancer or I don't even know what. I won't let myself google about disease symptoms anymore because I know the anxiety is just making it all worse.

Sometimes I don't know how to stop the cycle of anxiety about all this. There is so much to worry about all the time with the food, drugs, personal care products, etc. So then I start worrying about having something else and not believing that I will get better. Or will anyone want to be my romantic partner with all these problems and low energy?

I originally intended this post to be just about the symptoms to see if these are familiar for anyone else and I realize that the emotional/anxiety impact is also big on my health.

The big uncertainty seems to be: are these celiac symptoms or the symptoms of something else?

I don't have an immediate reaction of I get glutened. But I have heard that it can take 3 months for the intestinal damage to heal after a glutening. So is it possible that I have all these weird symptoms for three months after being glutened?

Thanks for any input you may have. . .

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Well, I don't have any answers for you other than to say I'm there, too.

I think I was glutened about 3-4 weeks ago, and probably got into gluten by cc several times over the holidays (eating out).

I don't have obvious gluten symptoms (unless my rash breaks out), but MAY have flu-like symptoms (if that's when I got badly glutened)....

I was achey, tired, my hips hurt, hands sore and a bit swollen. I thought I was having an allergy attack (sneezing, etc.) which has been known to make me feel like I have a cold/flu, so finally took some Children's Claritin and WOW. It worked. Better than it had ever worked before. Helped aches, pain, swelling, sneezing.

Now I'm wondering of its seasonal allergies or a new food allergy, or if I have RA or something else. Its a mess.

I need to email my doc and ask her to add some new blood tests to my 6 month checkup but am scared something else will come back +.

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Have you been checked for vitamin deficiency? I felt the fatique/muscle weakness/out of breath from severly deficient on vitamin D. I would almost fall asleep just walking, it was scary.

Also have you had your thyroid tested, the carpal tunnel type feeling and tiredness can also go along with hypothyroid?

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I've been stuck with this, hand numbness, on and off, for most of my adult life. It got a lot better after I went gluten free years ago, but it's a permanent feature for me. Part of it is permanent nerve damage/impingement from a combination of doing physical things, and my c-spine damage/bone spurs. The hand that I have injured in the past does not like the mouse for the keyboard, either. But the extra fatigue thing is a feature of auto immunity. It isn't going to kill you, merely annoy you to death decades from now. ;) Something else is going on w/ me, I suspect it is a combination of mild other allergens or food intolerances or cross contamination, and I think my thyroid is going downhill, altho of course when I was tested I'm not coming up with any values thought to be worth medical attention. Probably should get my antibodies tested again. If you get a thyroid test, have them do that, not just the levels.

And I'm just getting older, and I have a lot of *** to do.

I have had extra fatigue problems since poison oak and prednisone treatment for it since 2008, suspect it affected my already slower metabolism and made me even more sensitive to sugars and carbohydrates, aka insulin resistant. Also was eating something in my baking that was causing a mild but persistent reaction. Then I ate something in early Nov from a gluten-free bakery that really messed me up because I ate something I do not do well with. What I did was go back to closer to how I was eating years ago, fewer grain carbs, and FORCED myself to exercise more, to try to reset my metabolism, and it is sort of working. The weather is helping me for once - very weird winter weather here, it is dry and cool instead of wet, cold, windy and rainy, so my lack of ability to sweat enough, and cool myself down properly in the heat is not killing my ability to do outdoor stuff.

I have been exercising forever, the trick is to do alternate days of more exercise and less exercise, and then just stretch or do short, very gentle yoga or physical therapy every day, plus a short walk, and give yourself time to recover from Big Days. Do NOT eat a lot of carbycrap before exercising or you will crash and burn, eat some fat, like nuts/chocolate/dried fruit, cheese, coconut milk, avocado, olive oil whatever, and/or a fruit and a vegetable, with that protein. And drink water. Carb loading is for other people.

Take a gluten free multivitamin B complex, calcium, magnesium, and vitamin D.

I have ditched some convenience foods off my list because of this. I just don't do cereals in the morning, and I don't know if I'm going to add a flatbread or pancake at lunch back in yet, because I lost a lot of swelling, my joints are a bit better, other than my feet are messed up as usual, :P and I'm less sleepy.

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Have you been checked for vitamin deficiency? I felt the fatique/muscle weakness/out of breath from severly deficient on vitamin D. I would almost fall asleep just walking, it was scary.

Also have you had your thyroid tested, the carpal tunnel type feeling and tiredness can also go along with hypothyroid?

That's a great trip. Thanks. My TSH is in the normal range but I have heard that many functional doctors think that mainstream doctors are not measuring for wellness (just for whether the thyroid is in disease range).

My most recent TSH was 1.6 and the normal range on this test is .10 to 5.5 according to my health provider. I have socially met an alternative doctor who said that a lot of women can benefit from thyroid hormone. I wonder how to investigate this more. I will bring it up with my dr. but he might just say that my TSH is normal. I identify more with the symptoms of hypothyroidism than CFS.

Yes, it is good to hear from others who are going through similar things. It can feel so overwhelming at times. Yes, it is a mess! I hope to get answers and to feel better and I hope you do too!

Love.

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