Urticaria And What Life Was Like With Undiagnosed Celiac
Urticaria is Not a “Typical” Symptom of Celiac
After my diagnosis of celiac, I voraciously learned about this disease that had always been there, but didn’t have a name. I read everything I could and quickly discovered that it wasn’t something that had just recently happened to me, it had always been a part of my life.
Some childhood symptoms of celiac include (there are more than 200 symptoms):
- Decreased appetite
- Failure to thrive- poor weight gain and growth *
- Bloating and gas *
- Diarrhea *
- Alternating between constipation and diarrhea
- Anemia *
- Damaged or discolored tooth enamel *
- Itchy skin with blisters and sores (Dermatitis Herpetiformis)
- Eczema *
- Cranky/irritable *
(The ones with * are the ones I had.)
As a baby
When I was a baby, I was very small. I weighed only 19 pounds when I was 2 years old. When I was 9 months old I started walking. People would tell my mother to sit me down and keep me from walking, because I was too small. They would tell her that babies that small shouldn’t be walking. I was cranky and irritable. When my teeth came in, they looked horrible and had enamel damage. By the time I was 3, I had to have most of my teeth filled because of cavities. I wrote a post all about Dental Issues and Celiac.
I had a lot of gas and it was embarrassing especially as I became a teenager! Once, I mentioned it to my mom and she told me that some people are just more gassy. She also said that I take after my grandpa. Yeah! That’s what I want to hear! (A teenage girl who is like an old man!!!) My brother always told me I smelled and I was so self-conscious of it.
If you live near the Great Salt Lake, you know about the horrible lake smell. It smells like rotting brine shrimp, sometimes. I thought that smell was me, until I was in high school. I remember someone talking about the smell and I was so worried everyone would point to me but then they started talking about that lake smell. The relief I felt! I had heard about the lake smell before, but never connected it with that horrible smell.
Throughout elementary and Jr. High I would have bouts of unexplained diarrhea. My mom would say that it couldn’t be diarrhea because I wasn’t running to the bathroom constantly and it didn’t happen more than once or twice a day. I often took Pepto-Bismal so I would be okay at school. My mom told me to wash my hands better.
I often felt lousy! However the rule was, if you weren’t dying, you went to school! Problem is that I was blessed to be happy through most things even when I feel really sick. My mom never thought I was sick, unless I was laying flat and moaning in pain. (Which I have never done.) My brother, on the other hand, had the sick and moaning down to an art. Consequently, it has taken a long time for me to learn to listen to my body and how and when to take it easy.
Then around 16 or 17 I began breaking out in hives! They were mainly on my abdomen but also frequently on every part of my body. I hid them as much as I could and carried on. When they were the worst they would be in my mouth, on my lips and eye lids. There was no comfort from them. Oat meal baths and some other products on the market for dealing with skin conditions; which usually contain oats, didn’t help! (Imagine that! [sarcasm] Currently, I can’t use any body products that contain gluten or my skin itches and I have broken out in a DH type rash from body products, before!)
Thought I was allergic to bananas
We searched for answers to my hives for 18 years! They would come and go and seemed so random and unexplained. The doctor told my mom it was stress and something I was eating. For a while we thought it was bananas. I avoided bananas for a year and sometimes it seemed to help, but mostly not. I felt like if I were only drinking water, I would STILL break out in hives!
If you would just relax, the hives would go away. . .
Because the doctor said it was likely related to stress that became the new and constant remedy! It was all in my head! My parents constantly telling me to settle down, lighten up, don’t take things so seriously, let things go, etc, etc, etc. Basically, I was a basket case. I must be crazy because I can’t handle any amount of stress! It didn’t matter that weeks when I had a lot of stress would be hive free. Weeks when there was little to no stress I would be covered in hives! The biggest stress I would feel is that I was breaking out in hives and itched like crazy! I wanted to tear all of my skin off!!!
Obviously you are stressed, you are covered in hives!
I remember telling my parents that I didn’t feel stressed! I was trying to explain to them that I didn’t think stress was the problem. They just pointed at me and said I was obviously stressed, just look at me! I tried to explain that my biggest stress was breaking out in hives ALL the time! Absolutely, no help or compassion!
So, I was itchy, cranky, miserable, and evidently couldn’t handle the slightest amount of stress! Not great for self esteem, making friends and enjoying life! Benadryl was the only thing I found that offered me even a little bit of relief! Drowsy was better than itchy and after taking it long term, it didn’t affect me the same. The hives were still there, but they didn’t itch.
The only time I was hive free, for long periods of time, is when I was pregnant and/or nursing.
Not You, too!
The worst is when my husband jumped on the band wagon of telling me I had to learn to relax. I felt like a complete mental case. Who can’t handle the slightest stress in life! Evidently, ME! I did breathing exercises and imagery exercises. Nothing ever helped! I felt like a failure in dealing with the basics of life. I was angry and miserable!
Tests are normal, you are in perfect health!
No doctor had answers for me! Every test ran would come back “normal” or no allergies to be found! The last allergist I went to told me I have Urticaria- chronic hives. (Really?!!! [sarcasm, again]) Then, he told me that 90% of people with Urticaria never find out why and that I just needed to learn to live with them. I cried and cried and cried. Life was so miserable! Not knowing when or for how long the next hive outbreak would last and wanting to rip the skin from off my body!
You don’t have celiac, we don’t need to test. . .
I went to soooo many doctors over the years for various issues besides hives and the tests always came back normal with little to no help or direction in where to go from here! I asked, when I was 19 years old, to be checked for celiac and my doctor told me I didn’t have it. He refused to do the blood test. I wonder if my health would be better now, if I had been diagnosed then?
When I was 34 years old, I asked to be tested for celiac and that doctor told me he could guarantee me 100% that I didn’t have celiac. He talked me out of being tested. I kicked myself from the time I left that office for not being tested and standing my ground! My body quickly started to have a lot of issues and problems! You can read more about that in My Story- Health.
What?!!!! I Actually Have Celiac Disease?!!!
Lots of tests and they all came back as negative and normal! When I found a doctor who finally agreed to check me for celiac I was sure it too would come back negative. I didn’t have “typical” symptoms and few places listed hives as a symptom. In fact, I have been to celiac and gluten intolerance conferences and have felt blown off by medical experts when I mention hives were my biggest symptom!
It was such a huge relief to finally be diagnosed and put a name to everything I had experienced!!!
I would love for someone to do a study on Urticaria and celiac! How many people are needlessly suffering like I was? I haven’t had a single hive since my diagnosis and going gluten free! That is really a miracle, to me!
If you are struggling with your health, don’t give up! Keep going and find a doctor who will listen!
Some of the images in this post came from Freeimages