CSID
What I went through to find that I have CSID; it was a long and grueling process over the years wasted going to doctors. To find out through a simple breath test late last year that I have a rear disease. I pray nobody ever gets this rare disease. Yet if you do there is hope. Please contact me.
Do I really have the disease or is it a fluke? Am I just missing the enzyme due to being ill often, or do I really have the mutation? Maybe that's why the Allergist could never figure out my underlying cause of repeated sickness.
Should more people be tested for this? Yes If you have similar issues it's okay to ask your doctor.
I welcome all comments, support, suggestions, and thoughts.
I a 33-year-old stay at home homeschooling mother who was just officially diagnosed with CSID / GSID in November 2019. I was also officially diagnosed with Candida. Which explains so many other diagnoses over the last 12 years.
GSID is not just IBS!
It's like migraines. You know the migraines I have had for 15 years.
I have been also diagnosed with esophageal damage likely due to my Acid Reflux.
Frequent UTI's and Bacterial Infections swelling to point of looking pregnant last summer. I mean I went to bed in pain with a UTI or so I thought. It was a bacterial infection and I didn't know better even after reading the label of an over the counter yeast infection medication. I woke up the next morning looking 9 months pregnant. I rushed to a doctor who sent me to a hospital. Where it was discovered I had a UTI, Bacterial and Fungal infection.
Fungal Infections Jock Itch specific to food reactions aka sugar from wheat bread especially...
RIP pumpernickel bread. Oh, I miss eating wheat! I stopped eating it for months and tried eating it again to only find out it was what was causing my skin to itch all over.
Fibromyalgia, Arthritis, TMJ, TOS which effect my nerves and muscles. I had a freak accident with a doorway stretch 11 years ago and passed out and woke up with my neck and shoulder no longer in place in a hospital. Years of pain and therapist later a month of no sugar and most of the pain is gone. PAIN GONE! Eat any form of sugar and within minutes, I get a headache and pain all over my body like the flu. I do have bone spurs in my neck and disc deterioration also in the neck. Doctors want to fuse my C2-C6. I've mentally fought this idea for over two years now.
I'm extremely low in Vitamin D and Iron. Which has made me so tired over the years. But you know what; who cares! I jump up the next day if I'm not waddling the waddle of ouch; that step hurts my feet; oh no now that steep hurts. But once I'm standing most discomfort is gone and I get to rolling playing the role as a mother and school teacher. I love homeschooling it keeps me going. Well, that and scouting with two separate troops. My family is my Rock! That and my Faith!
Abnormal food Allergies and Intolerances. Haha yeah, I got that down pat:::
Cilantro, Cumin, Coriander,
Onions, Black Pepper, Sugar Sucsorse, and Apples.
The Cilantro allergy started exactly at the same time my other symptoms did while pregnant with my second child 11 years ago. I was pregnant with my first child 12 years ago. The Cilantro allergy warrants me to have to carry an EPI pen daily. I use to eat Mexican, Vietnamese, and Indiana food regularly not anymore. I can't even walk into the Indian market for more than 5minuates without feeling like passing out.
And in recent discovery that brought me to the hospital, ENT, and GI doctor was the discovery that fats are also closing my throat. That I can't explain. Fried foods make me feel like my airway is closed up. Especially fried chicken. The last time I went to a local fast-food restaurant half my face turned red and numb. I was told I likely have Candida and that I have a bacteria/ yeast imbalance.
And many other things have happened over the last 12 years. Examples: I have been tested for Leukemia 4 times. Because of having extremely high white blood counts. I keep getting tested for Diabetes, Thyroid, Celiac Disease, Lupus, and food allergies. Thankfully those all were negative.
I have gone through Immunologist for Immunotherapy. My vaccines I received as a child are no longer valid in my system. After two rounds of retaking vaccines, doctors stopped suggesting I retake them. My body just kept rejecting the shots. Just like when I tried getting weekly allergy shots for my dust might allergy; my body rejected the histamines and I had to be given Benadryl in the office.
Oh, Benadryl I often wonder if I should just buy stocks and bonds in this amazing company. I never leave home without my trusty friend. Yes, It's not meant to be taken regularly but it has been a lifesaver on so many different occasions.
I have eaten generously healthy for my entire life but struggle through out the day with my (not water retention problem) in the morning after waking my clothes are tight as the day goes on there almost falling off. Like I'm swelling at night and losing flood throughout the day.
I'm always extremely thirsty and have felt especially hot my entire adult life. I mean beyond hot flashes. Growing up I always remember people commenting on how my ears turn red when I was hot. Once I had my second child I had to have surgery to stop bleeding. I bleed for 14 months straight. Then my body jumped into early menopause or so I believe. I'm not sure if it's related to the sugar intolerance or the menopause. But most days I'm so hot people comment about me giving off body heat. When I cut out all wheat, dairy, and sugar for a week I become stone-cold now... For the first time in my life I have felt cold. I'm loving it. Winter is my month. I have been freezing for a month now. A month.
This relates to how I found the correct path to finding out I had Candida which lead me to find out I had a rare disease. I was itching non-stop. I mean I wanted to claw off my skin type if itch. All dry skin locations didn't help. I don't have dry skin. Fungal cream would help for a day or two but you can't use that in large quantities all over your body.
And then one day I was bathing after showering 3 times that day with just water because I needed to cool down and stop itching. I felt like I was running a high fever always. I was sweating. Not like I just pick up something heavy and walked across a room. I mean like just ran a marathon. And was followed by a horrific underarm body odder that was gagging me.
Let me rewind a moment. My spouse and I did Keto last year. I did amazing. But once I came off Keto I became so ill again. We had done keto for 7 months. So for the last few months, I have been getting sick. So my body odder kept getting worse and worse and so did the sweat. It got to the point that every time I would go out I would bring spear clothing and a washcloth and soap.
One day I was home alone and started looking up natural remedies to clean my dog's hair. She has a flea allergy. So while researching natural remedies I found a video about body odder. So I Googled body odder related to jock itch. BAM! I found Candida.
That day I set up an appointment with my doctor's office. Yeah she blew me off because she said I didn't have thrush of the tongue. Next, my ENT doctor scooped me. He didn't see thrush either. But he did say my Acid Reflux was back with a vengeance and I had no idea because the mucus in my throat was so thick. He sent me to get an ultrasound of the throat because I was not able to swoll things. He also sent me to a Physical therapist for TMJ.
Finally, I went to the GI doctor all up in arms angry because the other two doctors dismissed the idea because of the lack of thrush on my tongue for that week. Don't get me wrong my other doctors are still good doctors. So I tell the GI doctor I need you just to test me for Candida and I just blurt out everything on my mind and how insurance won't cover. Another endoscopy or colonoscopy since I just had one with him 4 months before this visit. So he sits there for a moment with his hand raised to me and says I have an idea.
I walk out with a Sucrose breath test that I need to do at home a few days later. Well, that baffled me I just told the man sugar was making me choke. But I did it. I went home breathed through a paper straw into a test tube. Drank an awesome glass of sugar water. NOT! And had to repeat breathing unto different tubes every 30 minutes to an hour.
A week goes by and I go camping with my son. I get a call.in the woods Mrs. Rocquin I apologize you won the bet; you know you had something wrong with you and you were right. That its. Come by and pick up a packet at the front desk. A drug rep will be mailing you some medication. He didn't mention he realized I had a rare disease that I will have to alter my diet for life. He only said you were correct about Candida.
Well, a month later and I'm still trying to get insurance to confirm or deny payment of the medication. I'm hoping for the best. I will have to refill the medication month. 5 months of medication is more than our annual household income. 3 Months go by and I just got my medication.
I took my first dose this morning. Here is to best of hopes.
During the 3 months of waiting, I also got sick twice. I've gotten 4 boils in since Christmas and its the end of January. I knew something was wrong. I went to the primary care she dismissed me and said you likely will need to go to a surgeon but go to the Dermentolist first they can cut out the boil in there office we don't d that here. I go to a Dermentoliogist who sends me to a General Surgeon with a referral to see me asap the next day. The next day I'm barely walking because of the pain. I climb up onto the chair and she looks at it and tries to start poking it. I almost passed out I was seeing stars and turned ice cold. She says I'm bringing you to the hospital to put you under and we will cut this out now. MRSA STAFF infection. It's not a nice thing. A month after getting the original boil and I'm still feeling ill. The procedure was 2 weeks ago. Every time I stand up I fell like fainting. When sitting at different angles I'm fine. But upright my stomach feels like it's going to rupture from the pain. I fell dizzy and nauseous at all times since the producer / since the boil. It was the size of a golfball. MRSA means you must clean and clean and clean so no one else gets it. This is just but a small stage of things that can happen during a year....
Though when I fell health I take on the world and have been noted to be an overachiever.
Anyone with CSID/GSID has any of the above also??? Please tell me I'm not alone. I have been suffering in pain for years and have learned to deal with it. But no more will I let it rule my life.
I can't eat out at restaurants due to my wacky food allergy and now I'm trying to find a happy diet with living with Candida-CSID-Acid Reflux.
I'm currently on a eat fresh seafood or Chicken with no sauces or seasoning diet with only leafy greens.
I'm looking for support and friends along this journey. And any suggestions.
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