Celiac or Gluten Intolerance? Please help.

Hi Rosie. Unfortunately I have also had a very similar experience to you. I have never been a well person, always picked up bugs, diagnosed with IBS at 11 years old and have just 'tollerated' my stomach problems for 25 years. But over the past 10 years I've gradually becme very interested in nutrition. I began to hold a belief that the cause of my problems was in my diet and have spent a lot of time researching nutrition and making my diet very, very healthy. But despite all of this, I was still often ill and last year, it just got unbareable. I was ill all the time- either a sinus infection or full on viral flu type symptoms. Plus I developed the most painful rash on my face and scalp. I was attending the GP regularly. They saw everything as a seperate condition, ignored my stomach problems and treated my skin and sinus infections with antibiotics and later antivirals plus creams. Nothing worked. At one point a GP told me it could be HIV, which obviously freaked me out! (I was tested negative thankfully) Eventually another GP asked if I'd ever been tested for coeliacs, I didn't really know what it was but once I'd read up on it, I thought it explained everything. That was in early Oct last year. Once I'd read about it, I upped by gluten intake thinking I could get tested in 6 weeks but when I was getting routine bloods done, I was also tested for coelics. I'd only been eating enough gluten for a week so unsuprisibgly it came back negative. That was the end of my coeliac disease idea as far as my GP was concerned.

So I decided to take it into my own hands and gave up gluten. It's been 4 months now and generally, my health has improved dramatically. My skin completely cleared up within 2 weeks and my stomach problems are 90% resolved. My fatigue has mostly gone. Brain fog gone. Tingly hands gone. Palpitations gone. Anxiety at night gone. The only thing that's changed in my life is the gluten and it's hardly any change to my diet as I ate a very clean and nutritious diet before this, plus I took supplements before. 

I've gone back to my GP to tell them all this. They referred me to a dermatologist and to gastro. I've had my dermatologist appointment and it was a total waste of time- I was informed you can't get DH on the face/scalp which I know isn't the case. She didn't appear to have any knowledge about coeliacs. I'm still waiting on my gastro appointment and I'm debating whether to reintroduce gluten for it. I want an actual specialist to see what my problems have been and properly advise. On the one hand, I feel I'm on the road to recovery and don't want to come off this road but on the other, I do wonder if it really is gluten and whether it's maybe just a coiincidence I'm better now- reintroducing gluten is the only way to find out! 

Ultimately though, I think you're very, very lucky if you find a doctor with specialist knowledge in coeliacs. I think as far as autoimmune diseases go, they're really only begining to understand them. 

Going gluten free is a hassle and can be quite anxiety provoking at times (eating out, eating news things) but ultimately, I think having a disease/illnesss that can be completely controlled by eliminating something from the diet, is kind of the best case scenario as far as chronic illnesses go. My being convinced I had HIV for 4 weeks has given me a different perspective on this though! :D

If you do have coelicas, there is little the GP can do anyway, there's no medication to cure it or even help, it's purely controlled by diet (and I think these 2 fact are completely linked- if there was a medication to be prescribed and money to be maed by drug companies, you'd be getting tests thrown at you!). There are also lots of things we can do to repair our bodies. Helping our gut to heal I think is really important as is helping our body deal with stress. Being sick for a long time puts a lot of strain on your body and I'm sure my stress/cortisol levels have been through the roof. So at the moment I'm trying to do everything I can to help my body repair- eliminating processed foods (espeically sugar) and all stimulants as well as making my food very nutritious (i.e. limiting all that 'gluten free' packaged food in the supermarkets!).

I hope you get some answers or positive changes to your health soon  

 

Hi Rosiebud

Sorry to hear your story.

Do so totally understand the frustration you are feeling with a doctor that is really not listening or really not being bothered to help you.

I too had this for a long time😫

But I changed to a different surgery and this doctor did listern he took

blood test then I was set for endoscopy and that showed I had celiac

disease....the doctor at the hospital said I probably had had this for many years and no one had picked it up... One doctor just kept giving me iron

tabs,and if you do have

celiac they will just go straight through you and is a total waste of time.

I use to get very dry and ichy skin, feel bloated, feeling sick

had mood swings

Constipation /or either running to the loo!! feeling very tired and just

generally felt very unwell.😖

I am on a strick cluten/wheat free diet now for rest of life.

But I feel sooooo much better now.🙌

So do change your doctor or ask for a second opinion don't b afraid to

ask and don't give up .

Good luck please let me know how you get on.

Jeanie

I also think you should have your rash biopsied. Here in the U.S., if the rash is considered DH, the patient is considered to have Coeliac without even testing blood and biopsies. Not that we've had that experience, but just from what I've read over the last year or more.  

My son has CD and his eczema is still pretty bad.  Been having a rough winter here, weather-wise and that doesn't help...but neither has his GF diet for a year now. Bleach baths have done more than just his prescription creams and thick lotions alone. He does not have DH, though. 

I may or may not have CD but I went for a check up and told my Dr. about my exhaustion and other symptoms and she discovered that I'm low on B12.  Three weeks into treatment, I do feel much better (not all better, but that takes longer). It's just such a relief to KNOW in the first place!  Here we wait weeks/months to see specialists, so my GI appointment isn't until the end of March, but the more B12 I get, the more I think it's probably just that.

Don't let the GP keep you from getting answers - see another if you can't make your own appointment with a GI doc! From what I understand in some European countries, you have some government help with food expenses if there is a CD diagnosis and since it's an autoimmune disease, you owe it to yourself to find out if you have it or not before you give up gluten.  For your sake, I hope it's "easier" and that you get well soon!