Subscribe to FREE Celiac.com email alerts
Birdsong added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms15 Years They've Had To Pick Up On This!I'm sure the title will convey my frustration. I've recently had a bit of a 'eureka' moment and I'm pretty sure I'm right in my thoughts but if me, an 'average joe' (or joanna, lol, I'm female) type can join the dots, why has the Doc not done so?!
I thought my daughter might have been Coeliac but the initial blood test we did at home came back negative. (We're in Scotland and it's a nightmare dealing with the Health Professionals here, you wait at least 3 weeks for an appointment then if you need blood taken you need to wait another week for an app for the nurse to do that. Red tape gone mad! So we bought an online test recommended by Dr Chris Steele who is the Ambassador for Coeliac UK and is Coeliac himself.)
Despite the negative result, we were positive daughter had gluten issues and we removed gluten from her diet earlier this year. Her health has improved hugely, she had many many issues from birth which were all previously unexplained and all these have now gone.
Anyway, I stopped eating gluten too at the same time. I didn't think |I needed to, I was just doing it to support my daughter. However, I actually now think |I might be Coeliac myself.
I'd welcome your views on my thoughts?
I was a skinny kid, so skinny you could see my ribs. I suffered severe stomach pain every day but it was always worse in the morning and Mum used to think I was putting it on to get out of school. I genuinely wasn't. I had recurring tonsillitis and ear infections. I had migraines from very early teens.
I was still getting tonsillitis as a young adult as well as upset stomachs and frequent migraines but not too much else that I can recall.
When I was pregnant with my 3rd child, I developed a severe angry red itchy raised rash on both legs mainly on the front/side thigh area from hip to knee. The rash has small spots/blisters that were full of clear fluid and I scratched these until they bled. once the blisters had burst, the itch wasn't quite as bad. Doc had no idea what it was and suspected washing powder allergy or similar. He gave me cream that didn't help and I had the rash for weeks. I got this rash regularly, it would die back then appear again a few weeks or months later, every time it was in exactly the same place. A new Doctor also didn't know what it was but gave me a different cream which helped a little. After maybe 3 or 4 years of this, the rash finally stopped coming back until it appeared once out of the blue a few years later.
I'm obese and was (until I stopped eating gluten) manically hungry all the time. I'd eat a meal then want to eat again within a short space of time.
I went to the Doc with complaints of dizziness, tingling in hands and feet, a feeling like my brain was full of cotton wool and migraines that were increasing in severity and frequency. Because my Father had strokes, the Doc sent me for an MRI scan, this was completely normal.
No reason was found for all my complaints. My suspicion is that the Doc thought I was either a hypochondriac or someone who just moaned about trivial things for the sake of it. I'm not, I just had lots of unexplained things going on and I wasn't happy about accepting the 'you're just getting old' or 'it's because of your weight' stock answers.
It's only since my daughter's issues that I've started looking at my own. All of the things I'd been complaining about have gone and I've lost 10lbs so far without doing anything differently other than removing gluten.
I ate a bag of crisps one day that were supposed to be gluten free and within an hour I had to go to bed as I felt so awful, dizzy and 'woolly headed'. I had no idea why I felt so bad as I knew I hadn't eaten gluten. A week later I saw a recall notice online about the crisps as they contained wheat despite the pack saying they were gluten free. I figure that kinda proved things.
So, what do you think? Does it sound like I could be Coeliac? I haven't eaten gluten since Feb so the usual testing wouldn't work now. Doc insists there is no gene test she can do that would be of any relevance at all and she was pretty dismissive about it all imo. Her opinion was if removing gluten is helping you and your daughter than why don't you just keep doing it? Which of course we will but I do wonder if I should eat gluten again to get tested properly. I have to admit to feeling a level of frustration about all of this as I feel someone somewhere should have picked up on the possibility of a serious condition.
I think I'd just be glad if someone could confirm I'm not a loopy old bat who's over thinking things now and has joined the dots wrongly.
- 3 replies
- 1,093 views
Birdsong added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)This Is Down To Being Glutened Isn't Is?Daughter is 14. After a 'Eureka' moment, I realised (with no help from the medical profession who were very nice but pretty useless during all the times we looked to them for help with miscellaneous symptoms) that my girl had gluten issues.
After taking gluten out of her diet, she improved hugely. No more sore stomachs, heartburn, feeling sick, tingling hands and feet, joint pain, dark circles under eyes, anxiety, yadda yada yadda. She had many many of the listed symptoms, not just one or two.
After being small all her life and not growing at all in the last two years, she's grown almost an inch in the last month. (We took her off gluten at the start of February.)
I don't need a Doctor or a test to tell me she has gluten problems.It's pretty evident imo.
Anyway, she was at a school thing at the weekend and ate a packet soup there on Saturday afternoon. She hasn't been feeling well since Sunday and it's got so bad that she had to get sent home from school today (Tuesday). She has a migraine, sore joints, really bad pains in her stomach even if she eats good food we know is ok. She feel sick and has a pain in her chest when she breathes. All these things she has experienced before so I'm sure it's because she's had a severe reaction to ingesting gluten via the packet soup on Saturday. I know this is wheat and gluten heavy after looking it up online.
In my heart I feel all her symptoms are as a result of being glutened but as all this is new to us I think I'm looking for other opinions or reassurance that being glutened after removing gluten from your diet can be really quite severe and her symptoms do fit with this? Also, does the timeline seem reasonable to tie her symptoms down to being glutened?
- 12 replies
- 1,183 views