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Could This Really Be Celiac?

9na

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9na Rookie
9na
Posted

Hi! I've been reading ehre for a bit, and you all seem so nice and wise that I decided to register, to maybe get some good answers or useful thoughts ;)

I'm struggling quite a lot of symptoms, some constantly, others vary from day to day (or even hour to hour...). I first saw the doctor about a year ago, not much have happened. Dozens of blood-tests have been taken, the only thing found was Vitamin d deficiency (I've supplemented and am now in good levels). Next is biopsy to check for celiac (blood test was fine, but I hear they can be).

Well, I'm getting scared with new symptoms (and the 'old' ones...), and now I just want to list my symptoms (and describe them very shortly), and ask you guys - could this all really be celiac?

I'll list the symptoms in the order they appeared:

1) Giving birth (haha!- but it all started some months after my youngest was born, so I guess that could have started it all?)

2) Chest pain/pressure. Shortness of breath when exhausted.

3) Fatigue

4) Scalp pain/burning, mainly right side. My skin in the scalp is fine (or not - very dry, because of my thick and long hair... but the skin is not the problem..). It started as little 'dots' that was painful to the touch, now it is a bigger area. Changes a bit. I also have a heavy head/headaches from time to time, but nothing too horrible.

5) Tingling in fingers and toes. Also numbness, mainly left hand and fingers.

6) Bowel trouble. Most of the time I have bowel movements minimum twice daily (I never used to), sometimes as much as 3-4-5. Not lots of pain, but some from time to time.

7) Joint pain

8) Dry eyes - severely. My eye doctor also found that I have too little tear-production. Worst in right eye.

9) Dizzy spells

10) Nausea

11) Ears ache, and in periods they are 'clogged' very easily. This started a short time after I started wearing glasses (because I could no longer wear contacts), so I wonder if that is causing it? I hurt both in and behind the ears.

12) Neck and shoulder pain, neck feels stiff, a bit more tender to turn the head to the right than to the left. Muscles are sore.

13) Back pain, but that might be from all my sitting around...since I often can't manage to do much...

14) Burping. I burp a lot many days. Often after I eat, but sometimes even as I get up in the morning etc.

15) 'Cramps' on my left side, just below the ribs. This went on for a while, then disappeared.

16) Cold sensation - or what should I call it? Like shooting cold across my scalp, or through my thighs or from the neck down. Very unpleasant. But I've started taking B12, and there have been less of this lately - hoping it means the vitamins are helping.

17) Oh, and of course the Vitamin D deficiency. I was at about 12 when first tested (october), retest in March showed a level of 56, so that should be well on its way of recovery...

I probably forgot something, but these are at least many of my symptoms.

Some days I'm pretty good. Others are horrible. I also get really really scared often when I'm bad. I fear I have a brain tumor and can't seem to cope... I've been to a neurologist (on a good day...), she found nothing to worry about from her side.

My GP also says this does not seem dangerous. But I'm eager to know WHAT IT IS! I'm sick and tired and depressed from the fair and the not knowing anything..

Oh, and I think that I often get worse around my period (before or during), but not always. I also have believed that weather changes are bad for me (when it gets gray/rainy, for example). But it could be coinsidential...

Well, I could write for days, but I'm actually impressed if any of you have read all that I've written so far, so I'll end it here...

Thank you! :)

9na

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9na Rookie
9na
Posted
  • Author

Oh, and I forgot to mention that I have really bad skin. Around my eyes and at the 'root' of my nose I have red, dry skin. And I have looots of acne on my back and shoulders - never had this before!

And I didn't mention that I did about a months of gluten free (not 'hard-core', but a careful attempt...) before my last doctors visit. By bowel seemed to getter better then, and I did have several good days - but also some really bad. But I guess it takes a while for symptoms to improve, and as I said I didn't do 'the real thing' - I bet I ate chocolate with gluten in it, I went to a party and probably ahd some sauce with gluten etc etc. Anyway, now I have to stay on gluten until the biopsy is done, so I can't experiment anymore, unfortunately.

Just read through my post and realized that I missed some things out ;)

MissBonnie Apprentice
MissBonnie
Posted

yes it could absolutely be celiac... you need a biopsy though. just get one asap and put your mind at ease!

9na Rookie
9na
Posted
  • Author

yes it could absolutely be celiac... you need a biopsy though. just get one asap and put your mind at ease!

I am getting one - my doctor has ordered one, but there's a long wait. Hope to get an appointment sometime in June.

mushroom Proficient
mushroom
Posted

Yes, it sounds awfully like celiac to me. But even if you test negative you still should try the gluten free diet because gluten can give you those symptoms even if you don't actually have celiac disease.

9na Rookie
9na
Posted
  • Author

Yes, it sounds awfully like celiac to me. But even if you test negative you still should try the gluten free diet because gluten can give you those symptoms even if you don't actually have celiac disease.

Thank you for your thoughts! :)

Yes, I'm definitely going gluten free after the test either way! Can't wait, really - as weird as it might sound ;)

If the test is fine but gluten is the problem, then it's called gluten intolerence rather than celiac, isn't that correct?

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