Coeliac Disease and other auto-immune diseases...

[FionaGFG]

How many members here either have or are a parent of someone with Coeliac Disease and another auto-immune disease (e.g. Thyroid, Diabetes, Lupus, Sjogren's, Pernicious Anemia, Arthritis)? How long did it take for diagnosis? Which came first CD or the other auto-immune disease? How hard is it balancing CD & Diabetes ? Does your medication conflict e.g. iron & thyroxine?

[zanydog]

Hi there,

My Coeliac disease was diagnosed after five weeks in hospital in agony withjD&V plus acute joint pains. Finally, after three more months the joints deteriorated to the point where i could no longer walk or do much unaided.

The Rheumatologist told me that the gluten had irreversibly damaged my joints and that had I been diagnosed sooner may have prevented it!

I have just had a bone scan that the radiographer told me was "abnormal" but I have to wait 2 weeks to find out what else has gone wrong!!!

I never eat gluten now and last week even accidentally ingested it as my diet coke (Sainsbury)had Gluten! Now for the last few days I am very immobile and need to wait for the effect to wear off and see how much damage to my joints has been done now!!!! I would be very interested to hear if others have suffered similar symptoms.

[FionaGFG Administrator in reply to zanydog]

Hi Zanydog,

Sorry to hear that. It's never fun when you have to wait ages for the results. What do you mean by jD&V?

Re joint pains:

I've seen a lot of Coeliacs online mentioning this. I also have many joint pains and my sister who was later diagnosed with CD was told she had juvenile arthritis in her 20s (pre CD diagnosis!), she could hardly walk as her knee joints swelled up very badly. After GF diet she's much improved.

You might want to also check out another question on Osteo issues and DEXA scans. It has a lot of good comments and info. Meanwhile I'd suggest that if the docs haven't already tested this try and get your local Dr to test for vitamin D, B12, Calcium, Phosphate levels. In particular low levels of Vitamin D can make you feel awful. Cramps, spasms and joint pains can abound. Many Coeliacs really notice their joint aches again when they forget to take theirs. I'd suggest some tonic water then trying ginger teas to help with the glutening. They always make me feel better. It is such a pain that many own brand supermarket fizzy drinks contain gluten (esp barley in the cloudy lemonade's). I'd recommend reading every label. It is a bore and it's easy to forget to yet it's always worth while.

Let's see if others on here also have R Artristis and Coeliac Disease. I'm sure most see a benefit to a GF diet (albeit late in diagnosis for you - once you get over the recent glutening event I bet you'll feel an improvement).

Also check out: arthritisresearchuk.org/

Keep us posted on progress and results. Hope you feel better soon.

Others: What tips and experience of living with CD & RA can you offer?

[zanydog in reply to zanydog]

Sorry for the confusion-I meant diahorrea and vomiting!Yes,I have just had 11vials of blood tests,so will await those too! It is reassuring to know I am not alone with the joint problems,although sad that others suffer too. One thing that really bugs me is that I cannot lose weight & I often feel as if I could eat forever and never be full up! I attend toning tables twice a week to try and keep supple,but as I am on crutches or in a wheelchair, I am limited with exercise due to constant pain. Id love to be able to lose weight so if anyone has a good tip! I don't eat processed food much and try to eat low fat and low sugar too. Life sometimes feels v.tough! Am glad of groups like this tho,great. To have online support

[FionaGFG Administrator]

Hi Zanydog

Best of luck with the tests do keep us updated. You're not alone with joint problems in fact a lot of Coeliacs have that as one of the main symptoms (due to low Vitamin D and Iron levels caused by the CD).

Weight is also a common problem. I'd love to lose some - no-one seems to warn you that going gluten free (even if you avoid processed Free From foods means you'll often put on weight). Well done for being active despite your pain!

Do see what pain medication you can take to ease the pains. I've been reading online that often if we get regular pains our brain expects to receive the pain even if we're not receiving pain any more so it's always worth trying to ease it. Also try cold/ warm packs on joints.

Have you tried acupuncture? I know lots of friends who swear this sorted a host of problems even one who used it to recover after after a really bad motorbike accident. I'm sure I've also read that ginger and pineapple supplements and the foods themselves are naturally anti-inflammatory. Do remind me to check further.

Glad you find the group useful! It often helps to share doesn't it?!

Feel free to start some questions yourself. You might also be interested to know that there's a new HU group for Arthritis. Often joining more than 1 group means you get the best of both worlds.

Keep in touch and don't give up. We all have good and bad days. Fingers crossed the results shed more light on things for you and help ease your pain.

[Irene Administrator]

I was embroiled in long discussions re my various problems with a snr gastro guy and I thought I would, of my own accord, get a followup appt with endocrine re my thryoid op from 30 yrs ago.

It was the endo doc who did the bloods that showed up my anaemia, low vit D and low B12. When I looked up what these three are responsible for in maintaining a healthy body I was shocked, some really significant symptoms matched what I was experiencing.

I marched back to the gastro doc and asked why my symptoms weren't matched to these deficiences and was offered some waffle on similarities and the blood tests not being standard.

I'm now on the vit d and iron supplements and vit b12 injections.

I also had ovarian cancer 15+ yrs ago so the good ol auto immune system has been working overtime

[Hidden]

I was diagnosed with chronic kidney disease stage 3 in April last year and after lots of other problems and test was sent for blood test for coeliac which was positive had a biopsy in November and officially diagnosed with coeliac disease just before Christmas, have been gluten free since new year but for now still feeling so drained, have cramps and keep losing feeling in hands and fingers and hands are forever cold though i have also got carpel tunnel syndrome. some days it seems as if i don't know if i'm coming or going.