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Raean's Journal: A Celiac Survivor

Forum: Autoimmune Diseases and Disorders


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March 14th, 2010, 12:06 PM
Mega Super Mommy
Join Date: Jun 2009
Location: California
Posts: 3,532
Here's my first journal entry, just a repost of my introduction post. It's very TMI but I wanted to post everything so that those who might have similar symptoms can know that you're not crazy and something really might be wrong!

Originally Posted by appleofdanielseye View Post
Hi ladies. I've been struggling with medical issues all my life. As an infant I had 'gerd' or 'reflux' and as a toddler I had what they thought was lactose intolerance, I remember I was always feeling sick, and my mom would just tell me 'you're just a sensitive girl is all' Almost all of my birthday pictures I'm leaning on something, and look like I'm just miserable in the middle of a party. As a preteen I remember sitting on the toilet for hours, doubling over and crying in pain just begging God to make it stop! At the age of 10 the doctors (without proper testing) said I probably had a gastric ulcer and put me on zantac. Well I still had problems... they thought I had gall stones and did an ultrasound but nothing.. When I was 16 they said I probably had IBS, and to eat a high fiber diet. OUCH! It just about keeled me over, I mean I really tried hard to follow doctors orders because I was so tired of being miserable but it seemed nothing worked. I would tell my mom "I don't think the doctor was right mom." and she would say "Well they only make their best guesses, we shouldn't pester them" The doctors were starting to get tired of seeing me and my parents were starting to act like I was making it up for attention. I started getting depressed and at times thought about just ending my life, why live in misery? Especially when no one can tell me what's wrong and people are starting to no believe me.

I had my first daughter and the first two trimesters I was in a lot of intestinal pain, but the third trimester I was fine. After that I didn't notice anything too bad, I would have "flare ups" from what I thought was IBS... I started having bleeding and freaked out of course, so went to the ER. They confirmed I was bleeding but didn't know what from. So they told me to go see a GP who them referred me to a GI. At the age of 20 I had a colonoscopy. He said they took biopsies but found nothing other than a lot of inflammation to which they assumed was the cause of IBS. He mentioned me having a significant amount of auto-immune antibodies in my blood work and to see my GP about it because it could mean that I have an auto-immune disease. My GP then checked me for Lupus, thyroid disease and RA but nothing came back real positive.

Things somewhat settled down for a while or maybe I just learned to manage it. But then I started having a lot of burning in my stomach, or beneath my stomach and I went back in. They did an upper GI with the x-ray and it showed that I had a lot of scarring in my stomach lining and the beginning of my small intestine was very inflamed so she put me on Nexium and left it at that. They kept saying that yes I had some stuff wrong with me but they didn't know exactly what it was so they didn't know what to do for me.

In 2007... I remember eating spaghetti for dinner one night and afterwards I just felt like I was in SO much pain! I felt chest pain and stomach pain and it just burned and cramped so badly! I went to the ER and they did an EKG for the chest pain and said it was fine and that I probably just had acid reflux and to see my GP. So I went a few days later to the GP, and couldn't even sit up straight, I had to 'sit' laying back but propped up on my elbows. They said it sounded like my gall bladder so sent me for another u/s...that came back with no stones. I was in so much pain that I went back the next day and said "Do something!" and when checking me over again they thought maybe it was appendicitis.

So they sent me straight over to the ER, and upon their assessment they got worried too. When doing the 'heel tap' thing I about jumped off the bed and screamed so they admitted me. They did all the tests for appendicitis but nothing came up clear. I was still writhing in pain and needing narcotics via IV every 4hrs or I was screaming in pain...they said again 'maybe it's your gall bladder' and decided to check it's function via a HytaScan (sp?) So they took me for that test and the guy told me you might feel nauseous or cramping when I insert the dye but that doesn't mean it's positive or negative.

I said ok man whatever just do it. And oh man when he inserted the dye I about died! I got hot and sweaty and felt like vomiting and my side cramped like I was in labor! He was nice and wet down my face with a cool damp cloth and it was over in a matter of minutes to which he 'laughed' and said yeah yours is probably positive. Thanks man! So the surgeon comes into my room later that day and said 'we normally take gall bladders out when their function is less than 30% because it's basically useless after that....yours was working less than 10%!" Well halleluja get it out of me!

After they removed my GB things got better after healing from the surgery and all but I still seemed to suffer with some foods. Pizza really bothered me so I tried eating veggie pizza w/ little to no grease on it thinking that grease would flare up my IBS. For two more years I suffered, and this past year I really noticed that I was ALWAYS bloated, if I wasn't 'going' I had cramps and diarrhea and it was just getting more and more frequent. My joints started aching, I was getting tingling in my limbs, I was always tired, I would often feel (esp during a 'flare up') that I felt so malnourished, I know this is gross but I noticed my BM had an odd smell to it, my DH noticed that I always had bruises, I started taking a liquid form of vitamin B complex and noticed a boost in energy. When the bottle ran out I procrastinated getting a new one and noticed a huge drop in energy. I kept thinking that at 25/26 years old I was falling apart, how could someone so young have so many problems! And why can't the doctors tell me anything solid? THIS LIFE IS SO UNFAIR!

One day last month I noticed someone on JM talking about celiac disease, and out of curiosity I looked it up to see just 'what' it was. When I read the list of symptoms I was in shock....

* unexplained iron-deficiency anemia
* fatigue
* bone or joint pain
* arthritis
* bone loss or osteoporosis
* depression or anxiety
* tingling numbness in the hands and feet
* seizures
* missed menstrual periods
* infertility or recurrent miscarriage
* canker sores inside the mouth
* an itchy skin rash called dermatitis herpetiformis
* Abdominal cramps, gas and bloating
* Borborygmi (stomach rumbling)
* Coetaneous bleeding
* Chronic Diarrhea
* Easy bruising
* Epitasis (nose bleeding)
* Failure to thrive
* Fatigue or general weakness
* Flatulence
* Fluid retention
* Foul-smelling or grayish stools that are often fatty or oily
* Gastrointestinal symptoms
* Gastrointestinal hemorrhage
* Hematuria (red urine)
* Hypocalcaemia/ hypomagnesaemia
* lymphocytic gastritis
* Muscle weakness
* Muscle wasting
* Nausea
* No obvious physical symptoms (just fatigue, overall not feeling well)
* Osteoporosis
* Pallor (unhealthy pale appearance)
* Panic Attacks
* Peripheral neuropathy (nerve damage)
* Stunted growth in children
* Vertigo
* Vitamin B12 deficiency
* Vitamin D deficiency
* Vitamin K deficiency
* Vomiting
* Voracious appetite
* Weight loss
* Obesity

I brought this to my doctor's attention immediately and asked her "Could this really be it!" and she looked at everything all together and said 'Yeah.' So I got tested and am waiting on the lab for results but I just thought I'd share... for anyone out there that feels sick all the time and crazy because they don't know what it is. To not lose hope, to look harder and for yourself if you have to! Be the medical investigator or whatever if need be. I've gone on a gluten free diet since the beginning of the week and already I notice a difference. I'm relieved to tears!

Thank you for listening

So there you have it... I'm still having a few flare ups but it's only when I don't stop to really look at the label or I don't realize something *might* have gluten in it... like last night for dinner I think the BBQ sauce had gluten in it, I made scalloped potatoes from the box too and they do contain wheat products.. like I told DH, it's amazing how many things have wheat product in them...this is definitely a life change for me! But I can't wait to start feeling better, like a real person again!
Me, 33 - wife to DH, 39 (6.25.16) Chloe Elisabeth (1.2003) & Savanna Dawn (8.2005),
Jesse: 10 weeks - Feb 2017 TTC #4 w/ lots of prayer our RAINBOW baby!
"For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen. If you look for me wholeheartedly, you will find me."
Jeremiah 29:11-13

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