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Confused And Lost...

Courtney101

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Courtney101 Rookie
Courtney101
Posted

hi everyone,

This is my first time posting, but I just wanted to say that I've spent a LOT of time around the forums and have learnt a lot, so thanks for inadvertently helping me :) haha! I really would like to share my story though, and would love any incite you may have...

About a week ago I went to the doctor with problems that have been troubling me for some time, including...

-digestive issues (bloating, constipation, gas etc),

-tiredness and general lack of energy - even a small amount of exercise really takes it out of me (and I'm 20yrs old, slim and reasonably fit),

-muscle aches/tingling - especially in my calves,

-sinus problems,

-moodiness and irritability,

-Very low Vitamin D levels,

-Very low iron levels,

-headaches,

-occasional sensation that I can't take a deep enough breath (possibly related to the low iron?),

-teeth problems (root canal and 2 fillings when I saw the dentist a couple of months ago),

-and recent weight gain in the last few months (as I haven't changed weight since I was 15, this was a slight shock to me)

-A white coated tongue

So my doctor almost instantly jumped to celiac disease. She ordered blood tests which I've just ound out were negative. I was so sure that I fit the description, it's left me feeling a little bit lost. She just said I may have an intolerance to wheat but not full blown celiac, and can try a gluten free diet if I want. I also happen to have other food allergies (such as nuts, eggs and seafood) and am having re-testing for those soon. My question is... can they test for the gluten intolerance, or only actual celiac disease? My Doc said to talk to the allergist about it (she seems pretty unsure about the whole thing to be honest - although she did suggest I ask for lactose intolerance testing too).

I would love some advice on where to go from here, and if you've read this far thank you! :)

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Dixiebell Contributor
Dixiebell
Posted

Welcome!

It's good to hear your Dr. knows something about celiac, so many don't. The celiac blood tests are not 100%. You can have false negatives. I have also read that there may not be enough damage yet for the test to be positive. I believe the allergist would only be able to test for an allergy. I think gluten intolerant is when you have all the symptoms, all the tests are negative, but you improve on the gluten-free diet.

Did she happen to test your Vit. B levels? From what I understand low B can cause tingling. Low D can cause a lot of problems like muscle aches, and fatigue.

You can have an endoscopy/biopsy to check for damage from celiac or if something else is going on. If you decide to do this, continue to eat a full gluten diet, if you stop and go gluten-free you may start to heal. Some Dr.s will diagnose based on symptoms resolving on the gluten-free diet, you could ask her about this.

SGWhiskers Collaborator
SGWhiskers
Posted

Dixi said it all. Good luck with your gluten free trial and I hope it works for you.

Emilushka Contributor
Emilushka
Posted

I agree completely with the smarties who already spoke up. I'm just popping in to say I hope you feel better soon. The diet is hard to adjust to, but if it's what makes the difference for you then it's totally worth it.

Courtney101 Rookie
Courtney101
Posted
  • Author

Thanks for the information and warm welcome everyone, and I really appreciate the advice! It's just nice to talk to others in the same kind of situation. :)

No I didn't get vitamin B testing, but I think it's worth noting for next time, so thanks for mentioning it. The other thing I forgot to mention is that I got the same vitamin testing about a year ago, and compared to my tests then, my vitamin D and iron levels have dropped between 10-15 points each. My Doctor said that was fairly dramatic. I haven't changed my diet or habits (like the amount of sun I get) so I thought perhaps I'm just not absorbing nutrients very well.

My doctor seems sort of hesitant to run any more tests which is a little frustrating. I'm definately interested in trialing the gluten free diet to see if it helps, but I'll have to wait for a few more weeks before I can start (cause of allergy testing - I don't want to ruin it by cutting things out of my diet before). Just curious, how quickly did you guys notice a difference after starting the diet?

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      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
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    • knitty kitty
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      By knitty kitty · Posted

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