The Wait Is Over…I Have a Diagnosis

So after 3 and a half months of waiting, the results came from the immunologist. I have mixed feelings since my particular case has no cure, no real treatment. But I also know what I’m dealing with and my doctors will be able to work with it easier. My primary diagnosis is Mannose-binding lectin protein deficiency, also known as MBL. Not a lot is known about the condition. I only ask that whoever reads this pray for a cure or at least a treatment to be found in my lifetime and that if not that I continue to learn to accept things as they are and face it bravely.

Immune Deficiency Foundation Reminds Us That Some People Are Zebras in the Medical Field

http://www.primaryimmune.org/zebra/images/img_zebra_logo.jpg

Think Zebras!

Visit them at http://www.primaryimmune.org/idf.asp for more information.

AAAAI – ELEMENTS of Allergy & Asthma

AAAAI – ELEMENTS of Allergy & Asthma.

http://www.aaaai.org/patients/gallery/immunodeficiency.asp

Great overview on immune deficiency.

Wheat allergy – MayoClinic.com

Wheat allergy – MayoClinic.com.

Um. Yeah. The medical explanation.

American Latex Allergy Association | Latex Allergy Topics

American Latex Allergy Association | Latex Allergy Topics.

Technical Bulletin # 10

ALLERGENIC CROSS-REACTIVITY OF LATEX AND FOODS

A compilation from the literature

Allergic reactions to natural rubber latex comprise both delayed and immediate (IgE-mediated) hypersensitivities, producing clinical symptoms ranging from contact urticaria and bronchial asthma to anaphylactic shock. Natural rubber prepared from the milky sap (latex) of the tree Hevea brasiliensis is a common component of numerous home products and medical supplies, including surgical gloves and catheters. While delayed hypersensitivity reactions to latex-containing products are often traced to additives and stabilizers employed for their production, immediate reactions are closely associated with endogenous protein components of the natural rubber latex materials.

Recently, coincident IgE-mediated allergies to latex and multiple fruits or vegetables have been documented. In vivo and in vitro investigations of clinical specificity have produced complex patterns of allergenic cross-reactivity (suggesting shared or common antigenic components) among botanically-unrelated allergens such as latex and foods. While the details of the clinical association of latex and food allergies await further study, documentation of food allergies known to coexist with latex sensitivities may be useful for identifying the risks of latex exposure for some patients.

Listed below are the allergens reported to be associated (clinically or immunochemically) with natural rubber latex.

Degree of Association or Prevalence:

High (4)

Banana

Avocado

Chestnut

Kiwi

Moderate (7)

Apple

Carrot

Celery

Papaya

Potato

Tomato

Melons

Low or undetermined (33)

Pear Mango Sweet Pepper

Peach Rye Cayenne Pepper

Plum Wheat Shellfish

Cherry Hazelnut Sunflower Seed

Pineapple Walnut Citrus Fruits

Strawberry Soybean Coconut

Fig Peanut Chick Pea

Grape Buckwheat Castor Bean

Apricot Dill Lychee

Passion Fruit Oregano Zucchini

Nectarine Sage Persimmon

Simultaneous occurrence of allergies to certain pollens and foods described above have also been documented in reports independent of those focusing on natural rubber latex. Significant levels of allergenic cross-reactivity have been demonstrated for the allergen groups listed below:

Mugwort with Carrot, Celery, Apple, Peanut and Kiwi

Birch with Apple, Pear, Peach, Cherry and Hazelnut

Grasses with Potato

Ragweed with Banana and Melons

*Might be calling the doctor after this one.

This might explain my wheat allergy and peanut allergy. It sure sheds light on some of my other food allergies!

Food Allergy Initiative – Wheat Allergy

Food Allergy Initiative – Wheat Allergy.

Another explanation of the differences between celiac disease and wheat allergy.

Wheat – FAAN

Wheat – FAAN.

One of the best explanations of the difference between celiac disease and wheat allergy I have seen.

See more on my dedicated gluten free blog “My Gluten Free Life” at http://susanelizabeth31-myglutenfreelife.blogspot.com.

Gluten Free

I’ll add more to this post later or do what another blogger I know does and do a part II, but I’m checking out glutenfreefrenzy.com right now and they have this supercool contest for Mixes from Heartland (available at http://www.mixesfromheartland.com). It’s supercool because, personally, as a newbie to the gluten-free world, I find that my mom and I have to do a lot more baking and other home-cooking and it’s so hard to find mixes that don’t cost an arm and a leg. But my wheat allergy has been a small blessing in disguise: I am actually starting to lose weight on the gluten-free diet!

Today’s Exciting Package

I got my package today! I remembered ordering it, but I wasn’t expecting it today. Well, I didn’t know when to expect it, but boy was it a happy and exciting moment. It was like Christmas in the house because both my mother and I got some things in it. Who-haw! See, I joined IDF Common Ground and IDF Friends for patients with immune deficiencies and through the message boards learned that there were some free resources available, including some wellness notebooks and binders. So, I went on the website to order my kits. I ordered like everything they would send me. I order the kit for myself and for my mother, who is basically a caregiver. I am now ordering some posters for awareness for some places I frequent in order to help them out.

But here is what I got: a backpack thing with an IGIV bear, play therapy kit and IGIV starter kit; a wellness binder with folders and three hole punch to organize all my important doctor and insurance papers; a wellness notebook for the year that helps me with appointments, medications, how I feel that day, pain level, etc. and includes an order form for next year’s kit; a brochure about GammaGard Liquid IGIV; Celina’s Story about a patient with a similar story; The ABCs of Kids Like Me and a pack of crayons; My IVIG Book Kit; IGIV’s Medical Records booklet; a poster with the warning signs of Primary Immune Deficiency; and there was even a second wellness binder with folders and three hole punch and wellness notebook for my mother to use as well!

Well, needless to say, that was ONE heavy box with some SUPER SWEET stuff!

But, I’m really excited to start using my wellness kit this week and to start helping others understand my condition better. But I’m also really excited to learn how to live with it and how to fight it and how things are going to be and how they’ll go these next few weeks and months. Strange as that bear looks, there’s something oddly comforting about him and needless to say, the next time I have labs drawn, he’s going to be right there beside me! I may be 31, but I still need a comfort object too apparently. I already do dance and music for my therapy and books for my therapy and my blogs are my therapy, so now I have another thing to look forward to.

By the way, I want to put in a plug. I am wanting to look into the possibility of seeing about an allergy dog for my really bad peanut allergy through Angel Service Dogs, but in order to even consider this, I would need sponsorship, so please consider praying over this if you are reading this. My peanut allergy has gotten to the point where if I’m in the same room as someone else who is eating something that contains peanuts or peanut butter, it will trigger an asthma attack. I am also asthmatic to wheat and mushrooms. Thanks.

“You Never Let Go” post from Facebook Notes

“I will fear no evil.” I wonder if this too applies to sickness, financial hardship, or any other trial or tribulation that may rear it’s ugly head?

“If my God is with me whom then shall I fear?” Isn’t God supposed to be the almighty protector? After all, if this God who loved me, all of us, so much that He sent His Son to die on a cross for my sins, past, present, and future, then would He not love me not enough to protect me from anything that might try to harm me, even if it is my own immune system?

Admittedly, how quickly and easily I can forget this and instead become paralyzed with fear of the unknown. I haven’t had my appointment yet. That’s not until Monday, February 8. At this point, I can only sit and wait and pray and hope for the best. Because I do not have a complete diagnosis and the stuff on the Internet does not help my natural tendency to worry any.

Worry leads to fear.

I am making a promise this week to anyone that knows me personally. I will not be researching anything further pertaining to what might be wrong or pertaining to what the immunologist might decide to do as far as a treatment plan. I will take the words of Mr. Redmond’s song to heart, and strive to remember that God IS with me and therefore, no matter what, I really don’t have anything to fear. And most of all, for my prayer warriors reading this post, I will post an updates on my blogs.

Bleak News and Brokenness

I opened the mail today and when I opened my test results from the endocrinologist, there was a prescription for prescription strength Vitamin D with six refills.

This confirms my suspicion of malnutrition since the last time I was on prescription strength, it was only for one month.

I feel so broken right now.

As a Christian, I should know that God is with me through this, and that’s what I have been learning, but I ask where is God in this right now when I really NEED Him?

How I Feel Today

I woke up feeling like I should be back in the bed. I have been having an off-week this week, with restless nights and insomnia. I came home from church Sunday with a 100 degree fever and it has yet to come down below 99. I usually run a 97-98.

I got on the scale this morning only to find that I have lost 12 pounds total in one week. I am noticing from several other factors that I am starting to become malnourished in terms of my necessary vitamins and minerals.

My neurologist’s office called yesterday. They don’t want to wait until March to see me. They want to see me next week. Probably to discuss the advantages and the disadvantages of my continuing on Topamax therapy for prevention of migraines in light of the kidney stone in December.

The urologist did not have the results of the pathology from that yet as of yesterday. But I will want them forwarded to me so I can make sure my primary care doctor, my endocrinologist, the immunologist, and I guess the neurologist and my mitral valve specialist gets them.

My mitral valve specialist told me when she looked at the results of the bloodwork that got me into the appointment with the immunologist that she would me more alarmed at my IgE level than my flagged IgG subclasses 1 and 3. Although in all honesty, even the IgA and the IgM and the other IgG subclasses 2 and 4 were a little troubling to me.

But she may be right. I have virtually no IgE, yet I have a multitude of allergies that the doctors can’t find on tests despite my clinical history-“Doctors can be stupid sometimes.” You’re right Mr. Bob. When will they learn that if a substance causes the symptoms, and the elimination of the substance eliminates the symptoms, but the reintroduction of the substance brings back the symptoms, it’s a strong possibility that an allergy exists?

But finally after two years, I am hoping to have some answers soon…. In the meantime, today, I feel kind of sick with sneezing, a slight ear ache, a fever, itchy, watery eyes and some mild pains again.