Ugh. Okay, SO. Here's where we stand right now. My RAST numbers came back completely negative. Like, zero. I went for a second opinion... The second doc re-tested me via skin prick and added all the foods I've had problems with. ALL negative. So that's great! Back to square one, though... And I'm congested like woah. (Ugh--sorry for the teen speak. I need a little coffee.) So I "get" to go have a CT of my head, specifically to check my sinuses. The second doctor wasn't quite sure why I'd not been referred to one by the previous doctor (no names given here, obviously), and why I'd not been referred to a GI specialist... which is my second stop. To probably be re-tested for celiac and other related conditions. For now, I'm cleared to use dairy since it doesn't give me GI symptoms (no lactose-intolerance here), but to stay away from gluten like the plague since it makes me feel so horrible.
Also, the negative results just mean that I don't have IgE responses to food, not that I have no responses or intolerances to anything. At least that means the reactions really aren't life-threatening. (I'm incredibly relieved.)
/vent
But you know, I feel SO much better with gluten completely out of my life, that even if my intolerance isn't something like celiac there's no way in hell I'm going back to eating wheat. Migraines, fibromyalgia flares, fatigue, eczema, and GI distress. Not worth it. SO not worth it.
Anyhow, for now I am going to have a lot less anxiety now that I have consistent skin AND bloodwork results. Even if I can't breathe through my nose and my ears are fluid-filled all the time.
Even if I do feel like kind of an idiot.
--
In other medical news, since I'm over-sharing already, I had my follow up mammogram and ultrasound yesterday from that scary issue last summer. NO CHANGES. Completely negative. I go back now for yearly exams, even now at 28, because of the family history.
Great news all around, eh? Except for maybe that I am insane.
I was tested twice for coeliac disease, the first time negative but a new specialist insisted that I get tested again and sure enough he was right, I tested positive. I still don't completely understand but I'm just glad to have a final answer to clarify things.
ReplyDeleteThanks for sharing your experience! I've had the basic blood work done twice, but by non-GI docs (rheumatologist and my GP). I have a feeling I'll be tested again, though I'm not looking forward to eating wheat again for the tests. It's so frustrating not knowing. I've tried to get answers as to why I feel horrible for almost 10 years now. Hopefully soon!
ReplyDeleteCongrats on the all clear! Removing wheat from your diet sure made a big difference, even if Celiac wasn't the issue. I wonder what else might have symptoms similar to Celiac? (Maybe I've been watching House too much)
ReplyDeleteGreat news on the all clear!
ReplyDeleteAh, House. The medical detective. :) I've got a consult with a GI specialist next week, so we'll see what she says!
ReplyDeleteFirst, *huge* sigh of relief on your follow-up news to last summer's scare. I'm in the same boat and know how you feel. Second, at least you don't have life-threatening allergies to any of these foods! My niece, who has at least 5 severe food allergies that I can think of off the top of my head, is in the hospital more than she is out.
ReplyDeleteI've been there with the horrible congestion/head full of fluid/GI distress - ugh. They ended up diagnosing me with ulcerative colitis and I had polyps in my nasal sinuses because my immune system had been over-reacting for YEARS. But cutting out wheat, dairy and sugar - over a longish period of time - did the trick. Wishing you lots of luck in getting this figured out as quickly as possible!
U of VA Division of Gastroenterology has some great resources for gastro disorders including great info sheets, like this excellent one:
ReplyDeletehttp://www.medicine.virginia.edu/clinical/departments/medicine/divisions/digestive-health/nutrition-support-team/copy_of_nutritionarticles/dennisarticleapril.pdf
Specialists:
http://www.medicine.virginia.edu/clinical/departments/medicine/divisions/digestive-health/patients/conditions
Women's Clinic:
http://www.medicine.virginia.edu/clinical/departments/medicine/divisions/digestive-health/patients/clinics/women/?searchterm=Sheila%20Crowe,%20MD
and support groups, etc.
Just Google site:virginia.edu +"celiac disease"
Maybe they can help you...?
Your blog is fantastic, very helpful...love your recipes!
Hang in there! All the best to you!