[Gerri54]

My name is Gerri, I am 54. I going for a biopsy for Celiac, Sept. 4th, of which I have many signs, especially now since going back on gluten. I have problems being in the sun, I get the butterfly rash on my face, and a rash all over my arms.

I summed up me on a Medical alert card.
Severe Auditory Processing Disorder, Severe Obstructive Sleep apnea, Narrowing Airway and Broncial Asthma, GERDS, IBS, Leaky Gut, NASH, Lung damage (scar tissue), Diabetic (Gastro-wants me on Insulin because of my allergies), Psoriasis, Hepatitis (A), Sjogren’s, Adrenal Glands cyst (1.38 cm), lesions on brain, Ultra-TSH (.3), Osteopenia, Arthritis(s) (Osteoarthritis (both shoulders, Bursitis (Hips), Fibroymyalgia, Rotator Cuff Tendinitis (both shoulders), Ankylosing Spondylitis (HLA B27+) back and ankles, Vitiligo (upper back left rib cage), some amount Alopecia back of head, Optical migraines, small amount Pericardial effusion, 3 cm cysts at sacrum from L1-L5, Hairline fracture on L5, spurs left ankle, plantar fasciitis, severe weakness in hands & legs (being investigated for celiac, lupus, RA)

ALLERGIC TO: All medications, foods, anything with sulfites as perservatives. Sulfur& Sulfates in them (Sulfa Drugs, sulfites (caused anaphylactic shock, sulfates, sulfur (cause breathing problems, swelling and rashes ) - Morphine, 292, Tylenol, quinidine, Tetracycline, Antihistamines, Demerol, Ibuprofen, Ramipril Clindamycin, Ex-law, Sucolax, Colase, Vitamin E, Penicillin 1st, 2nd, 3rd generation, Asprin (cause liver enzymes to rise), Niacin (cause severe pain right side body), Vitamin D (severe sleep apnea jumped from normal to moderate).

Food Allergies
Sulfides found in Food, Egg yokes, Alcohol (any with sulfides) Garlic & Onions (natural sulfa) MSG, Curry, Sorbitol, Manitol, Corn, popcorn, and low tolerance to sugar

Special Diets
* Diabetic * High blood Pressure * High Cholesterol * Gluten free * Corn Free * Egg Free * Lactose free
* Allergic to sulfa, sulfites, sulfates, sulfur derivatives * Osteopenia * Nash (liver disease)
*Sugar Free because of Leaky Gut
* Special note - Chronic Constipation was better when following Gluten free diet

Everything Else
Shampoo, Sulphur Fumes, Catalytic converters, matches, Dust, Grass, Oak, Poison Ivy, Mold, Mildew, Cats, Cigarette Smoke, Perfume & Colognes, Enamel Paint, Bandage (glue), LATEX GLOVES (sulfur to make gloves and cornstarch used in gloves - when wearing them)
* Special note - Sun causes rash, which sends Sleep Apnea into overdrive - if I cover up really well sleep apnea within normal range

I feel my health is going done the tubes, fast and I have no control.

I need to vent lots, because I can't have medication for anything.

Hugs

Gerri

 

[Katharine]

Hi Gerri and welcome

Wow, it does sound like you have been through a lot and I think you've a right to want to rant a little.

I hope with all that you have good docs following you up? Has one of them suggested lupus?

I'm at a loss what else to say other than to send some hugs,
:hug:

Katharine

 

[LindaMo]

Welcome Gerri

You poor thing - sounds like you go through the mill most of the time!

All I can say about these message boards is that there is always someone who has a kind word or something sensible & practical to say - or make you laugh if that's what you want :lol:

I had a few words of kindness this morning, which brought a smiling tear to my eye - just knowing, someone out there understands, without you having to try & convince them..............

Sending a hug!!
Lxx

 

[sjink]

Hi Gerri

Welcome to the list. Like Katharice says it is perfectly normal to want somewhere to come to get some support.

I have that sulfa allergy too in that I cannot take sulfa based antibiotics, but it does not seem to include reaction to foodstuffs as it does with you. This allergy is seen in lupus sufferers I think.

Hope you get the support you need here. This list has helped me regain some control over my health.

Love
Sara

 

[Gerri54]

Hi Katharine

"I hope with all that you have good docs following you up?" Don't get me started about Doctors. I had one doctor fire me because I couldn't explain to her about my health issues, because of my severe auditory Processing Disorder". She said I was too smart to have this learning disability. I wish she, lived in my shoes just for the 15 minutes while I was in her office.

I have new doctor, he is just as bad but hasn't fired me yet.

My Gastro is investigating Celiac disease, and then I believe we will be onto Lupus. I have many signs of Lupus. I have already been diagnosed with Sjogren's, Ankylosing Spondylitis, and Vitiligo. If diagnosed with Celiac, I don't think it will be long after that I will be diagnosed with Lupus.


Hi Linda

When I first started with my new doctor over a year ago, he commented, he never seen anyone with such a list of health issues. Well he keeps adding to the list. Lupus will cover most of my issues, so I am waiting for the diagnoses.


Hi Sara

My sulfa, sulfites, sulfates, sulfur and derivatives, is what got me searching into Lupus. Celiac, and Lupus, will cause my liver damage. Celiac doesn't cover all my lupus symptoms. Celiac will help slow down the my progression of Lupus from what I understand.


I just need more support, which I am not getting with from family doctor. I have my Gastro on my side.

Nice warm sunny day and I out with a long sleave shirt, sun tan lotion, and hat, so my rashes won't cause major problems with sleep apnea. Out of eleven symptoms of Lupus, I've had on and off about 9, never less than 5. My ANA is still within normal, last test over a year ago so my family doctor won't label me without my ANA out of whack. Last visit last friday he told me he didn't want to see me until after September 4th. So I told him if there was an emergency I would go to the hospital. If there wasn't a doctor's shortage here I would be finding myself another doctor.

Hugs

Gerri

 

[Surferboy]

Hi Gerri, I am so sorry to read you are having so many problems. But I hope that all on here can give you lots of advice and help and offer a shoulder and hugs

 

[KarolH]

Welcome my friend.:wink2:

 

[Gerri54]

Suferboy, thanks for the welcome - there will be many days I will need many shoulders to cry on, and hugs to pull be through.

Hugs

Gerri

 

[Gerri54]

Karol, know I am here for you when you need a shoulder.

Much love, hugs from your Canadian friend

Gerri:bigsmile:

 

[marymackay]

So similar

Hi Gerri
just to let you know that -yes, it can take so long to find d/x and to find doctors and specialists to acknowledge our problems. :worried:I have many of your problems, particularly the sulfa problem, penicillin etc etc. and more.
Problems have been all through my life, just a bit more age than you, even strokes.
But in the last 5 years doctors in my city have not helped at all, even like you, knocked me back. Research has helped, and since start of last year slowly but surely :wink2n my part, specialists away from my city suggest just parts of problems. Lupuslike symptoms d/x in September and Plaquenil has helped slightly- more tests to come.
Still many to be plumbed. When you are so ill, we all have to take a stand for our own bodies.

Luckily I have been happy, busy, friendly all my life, and to find doctors have not been has been a shock. :sad:THis site and others have been my support online, along with group Chats, fun emails, enduring friendships, such necessary information, and many lupus/aps books I have purchased.

So all the best for your quest for knowledge and d/x. Hope to see your posts, and your progress.

 

[Gerri54]

Hi Mary

Just hearing that I am looking in the right direction for a diagnoses helps me carry on.

Your friendship will help me, especially when it's so hard to get anywhere with my family doctor.

Lupus and RA runs in the family. My sister 3 years younger has been diagnosed for many years now, but she is not open to discussing what she is going through.

Thank you for being there for me

Hugs

Gerri