So Confused, Waiting To Be Tested Next Week. Help?

[jillstarr21]

I am so confused and don't know where to begin. 

Next week I have an appointment with an allergist. Diagnosed in the past with, Fibro 2005, possible IBS 2005, Was diagnosed as a teenager with atopic eczema (I am now 49) contracted Mono in 2003 form my niece, constipation and unknown weight gain. I gained over 80 lbs in less than 1 year

2 years ago. I don't eat very much, so it is unknown to me, chalked it up to get older. Have not gone through the change symptoms except periods up and stopped other things I do have not diagnosed .Anxiety, tired all the time, depression comes and goes. I did have 1 Doctor who felt there was something underlying hiding undetected.

 

My symptoms are: (Was tested in Arizona for any out door allergies and was negative in 2006, I was living in Az at the time the below happened)

 

Started with itchy in 2012 like hive type itchiness. (Was diagnosed as a teenager with atopic eczema) I had swelling as if headed towards 

Anaphylaxis shock. Tongue swelling, throat swelling, foggy headed, felt like I also hay fever type symptoms and swelling in places like fingers, have always had hip pain and lower back pain, one knee has popped for years. Was put on 60Mg Prednisone with step down Mg's and did better as far as facial swelling and itchiness. Swelling never completely went away fingers you could see swelling, same problems with hips and the one knee. Before all this happened I was in constant battle with hay fever type allergies. After this had come and gone, I have gas, bloating and even can have leakage (sorry that is very embarrassing.)

 

Moved to Nevada and 10 weeks ago,

Had all same as above but felt the hay fever come on before skin problems, redness of skin in spots where atopic eczema is usually, then had fogginess and hay fever or sinus infection symptoms. My Nurse practitioner said my face and sinuses were swollen. Gave me an ant-biotic did not do good, thought it would because I had spiking fevers. But there again since I had Mono in 2003, I often get spiking fevers. She has me now on 40 MG of Prednisone and I am so weak. Hard to even get around my house without a break. Blood test I took about 4-5 months ago showed I was a extremely low for Vitamin D. Taking Vitamin D and not sure if doing any good.

 

My daughter in law mentioned Celiacs to me, so I checked it out, and found of course many things in common. I did go on a gluten free diet or as close as I can because sometimes even gluten free will make my heart race, I heat up and generally like my body is fighting something. Feeling better not great. But the leakage I mentioned above went away! Yay! Gas is not as bad, bloating here and there. I feel like I do not know what to expect from anything I may eat, I have read other things I can be more sensitive to while this is going on in full force. I have also read on here it takes some time to get all the gluten out of system, but I also have read do not eliminate if you have testing coming up. First appointment with Allergist one week from today, I am unsure if they do blood work testing there or are ordered from a lab.

 I really do feel I am always running on empty which makes me think of malnutrition

 

 

Any advice and what tests I should ask for if they do not would be appreciated. Thank you so much, I trust someone who has been through this very much, you know better then we/Drs who have not.

 

Thank you,

Jill

 

 

 

[defeatwheat]

     Definitely get an IGA/TTG test. That's the blood test for Celiac. I don't know that everything you have explained may be Celiac, but the fatigue, immune system problems and possibly the skin issues as well. Healing after stopping the diet will take a while. I always felt hungry because I was not absorbing nutrients. Upon getting on the diet I lost 20 pounds quickly. In part due to the learning of the diet and some temptations being removed.

     As far as whether you eat wheat between now and the test that is not easy to even give an option on but I will say when I had the endoscopy my wife fed me pizza while I was coming out of anesthesia. After I got my whits about me I wondered if that was a good idea. Did it affect me? I'm sure it did but I was so used to the problems that I did not even pick up on it. That was the last gluten based pizza I ever had so no regrets. I don't know how long it takes for the gluten in your system to go completely out. Good luck! This site is helpful.

[jillstarr21]

Thank you for the Information. I should add that when I looked up facial swelling I found what is called Oral Allergic Syndrome, it is usually 2 allergens attacking at once. 

Also when my Nurse Practitioner looked at my fingernails, she could see all the changes, white stripes, dents etc. That really concerned her.

[defeatwheat]

If you are diagnosed with Celiac you will want to take vitamins and supplements. Depending on your insurance situation you may want a full blood panel taken to see where your vitamin levels are. If you do have Celiac your vitamin levels will be low so it is kind of a given but your doctors may be able to assist further if they know how bad it is? I was to the point my bone density was affected and even had to take calcium for a while which oddly was hard because I thought that was for little old ladies.

If you don't get much response on this topic, you can always start another one. Sometimes the label is everything.