15 Years They've Had To Pick Up On This!

[Birdsong]

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.

[GFinDC]

Hi Birdsong,

 

Sorry you've had such a long  process of finding your way to a possible answer.  Unfortunately it's not real unusual for it to take years for a person to be diagnosed with celiac disease.  But regardless of the length of time it takes, there is still only one treatment for the condition.  And that's staying 100% gluten-free every day for the rest of your life.  There is one test you can do without consuming gluten.  A gene test can tell you if you have the known genes associated with celiac disease.  Having the genes doesn't automatically mean you will get celiac disease though.  It just means it is a possibility for it to develop.

 

 There may be improved testing available in the future, but that could be years away.  Personally I wouldn't do a gluten challenge after stopping eating gluten for a while.  Having a doctors diagnosis doesn't change the treatment at all, so it seems pointless to me in many cases.  But each person has to decide for themselves what benefit they will get from a diagnosis vs what risks they are willing to take for testing.

[Tricia7]

I can relate to your story.  

 

My doctor was also dismissive about my bring up Celiac's disease. He told me unless I was emaciated and had loose stools all the time it wasn't celiacs. While we all know those can be symptoms, they are not the only ones!

 

Like you I am overweight, and understand about the hunger you spoke of. I saw something when reading about celiac's on that (sorry don't remember where) that said, while many with the disease lose weight, or can't put it on, others actually gain because of the malabsorption of nutrients, the hunger is your body's way of telling you it needs nutrients. We are overeating and gaining weight, yet our bodies are telling us to eat more because it's looking for something it's not getting. 

 

Now that I am gluten free, that hunger is gone, I have to remind myself to eat some days. I have been losing weight too, without trying. 

 

As I said my doctor was also dismissive, but told me if I thought I felt better eating gluten free to keep doing it.  I can't go to a GI specialist without a my doc giving me a referral, so I can't get further testing. But for me I don't really think it matters, I know how bad I feel with gluten. I didn't imagine the horrible migraines.  Some so bad that I would end up in the er.  Thats enough to make me never want to go near gluten again. Celiac or not.  While having the official diagnosis would be nice,  I don't think I could deal with a 12 week gluten challenge. I am feeling so much better than I have in years, I don't want to make myself sick for 3 months just to be told I can't eat gluten. If there was some other treatment I was missing out on, then maybe I would, but there's not.

 

Sorry to ramble on, I just wanted to let you know you're not alone!

[Birdsong]

Thanks for the replies guys, appreciate your comments.

 

Tricia, it's good to hear of someone else with a similar experience, especially with regards to the hunger/weight thing. I've had more than one raised eyebrow when I've mentioned that to people. They look at me as if I'm just making stuff up to excuse my weight issues.

 

I think maybe it's other people that make me feel as if I should get tested. My sister especially, poo poohs everything unless it's come from a Doctor officially. People are not very understanding I've found, unless it's official. I supposed I need to work out how much that bothers me. Maybe I just need to believe in myself more, I KNOW what my daughter and I experience and I KNOW how these things stop as soon as we remove gluten, I shouldn't really need the assurances of a Doctor for confirmation.

 

Our Doctors here are not very clued up imo and are far too quick to dismiss things. When we spoke to a Doctor about all the things my daughter was experiencing, she started asking my daughter about school, if she enjoyed it or had any problems etc. It was clear she thought my daughter was making things up in order to stay off school. She didn't ask any questions about her physical symptoms at all. She just wasn't interested. If I did decide to try to get tested properly, I would have to try to find a private route for this I think.