Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

A Brief History Of My Coeliac (Uk)


Cranleighbeemer

Recommended Posts

Cranleighbeemer Newbie

I am 58 and have a medically mixed history with Coeliac (as spelled in the UK!). Born in the relatively early years after WWII, I was diagnosed as having a ‘wasting disease’. Initially I had digestive problems and unable to keep food down was placed under paediatric consultant Dr Dynski-Klein at West Middlesex Hospital. I was constantly ferried back and forth to hospital to try different dietary regimes. By the age of 7 I had been on a milk-free diet for a couple of years but, despite eating like a horse, was suffering symptoms of malnutrition complete with the distended stomach.

I under-went some pretty novel test procedures including the horrendous sweat test. At age 7 I was put on the gluten-free diet and things began to improve. I was not a ‘strong child’ but started to gain weight and my school work improved.

In 1968, at age 14, Dr Dynski-Klein had retired and under a new Consultant was given a biopsy the results of which declared me ‘free’ of Coeliac. There was never any explanation as what preceded this and I am only too aware that I need to be careful with my gluten intake.

Subsequently, in her early 50’s, my mother went through some dietary problems and testing but the doctors ignored the obvious until I suggested that the symptoms reminded me of my experience and mother adopted a gluten-free diet with almost immediate improvement. Mum went on to contract a high-degree of sensitivity to gluten but lived to 89 years of age.

When my wife and I had children we were concerned about the prospect of Coeliac and spoke with our GP. Both the children and I had blood tests and were declared free of the disease.

The Celiac.com website has proved a complete revelation to me.

It explained the milk-free diet, the dietary response, the biopsy and its results and threw some light on the whole historical context. More importantly, it has explained why I have been diagnosed as ‘free’ from Coeliac when in fact it’s more likely that I do have the disease in a very mild form with some of the more vague symptoms like the need to monitor my gluten intake, occasional word-dropping, and concentration deficit. Your recent articles on blood testing suggest that this is a not the definitive test suggested by my GP in the mid-1990s.

I would like to take this opportunity to reassure newly diagnosed Coeliacs that life does go on. There is relatively good awareness of the disorder now and that there are numerous commercially available products and pre-packed meals that meet your dietary needs. In my formative years we had to get some awful gluten-free bread ordered from the CoOp bakery and when we went on family holidays, mum arranged to have the bread posted to us! When I married the love of my life, Susan, she embraced the whole gluten-free ethos and early in our married life in complete ignorance of the difficulties suggested but adhering to a gluten-free regime produced a perfect gluten-free Victoria sponge for a visit from my mother. This produced tears of joy that somebody had cared enough to produce a real cake that she could enjoy without any of the side-effects!

I would be delighted to hear of other sufferers' experiences and any advice relating to my history.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jlaw Apprentice

Nothing ground breaking to add, but it is lovely to hear a voice of optimism and hope. And a beautiful marriage by the sounds of it! Thanks for sharing your story :-)

Link to comment
Share on other sites
Celiac Mindwarp Community Regular

Hello there

I am in the UK too. Thank you for sharing your story. I, like you have found this site a revelation, as knowledge seems patchy here. My observation is that 'classic' cases are dealt with better than more complex ones.

I strongly suspect that my mother in her 60s and grandmother in her 90s have the condition. I am working of persuading them to be tested.

Your wife sounds marvelous. My husband has perfected a gluten-free victoria sponge, and it is often requested by gluten eating friends!

I assume you have spotted that the blood tests require that you eat gluten, and as you know that you are better gluten-free there seems no need to put yourself through that.

I am sure that if you have any remaining health issues you think might be related people here would be happy to help.

Best wishes

Link to comment
Share on other sites
ButterflyChaser Enthusiast

What a beautiful story!

I am glad to see there are other people who change their lifestyles for the sake of a loved one, it makes me feel less of a nutcase :P (I learnt to cook gluten-free and DF years ago when I was dating someone who had celiac, and would have everything separate when I was cooking/serving him stuff)

Link to comment
Share on other sites
1desperateladysaved Proficient

Thanks for sharing. I was so glad when your mother went gluten free so willingly. That was the highlight of your story for me

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,508
    • Most Online (within 30 mins)
      7,748

    Penny Lowery
    Newest Member
    Penny Lowery
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • McNish
      If you're ever in the Peoria IL area - Queen of Squash is 100% gluten-free.   Pekin (just outside Peoria) Whiskey Taco is 90% gluten-free.  The owner's mom is Celiac so they get it!   Just let your server know.   https://thequeenofsquash.com/ https://whiskey-taco.com/
    • trents
      Do you have online access to your celiac panel test results such that you could post them? tTG-IGG is kind of a secondary test. A weak positive in that one could indicate celiac disease but since it isn't as specific a marker as the tTG-IGA it is not real convincing. You could also have NCGS (Non Celiac Gluten Sensitivity) for which there is no test. Celiac disease must first be ruled out. It is 10x more common than celiac disease and shares many of the same symptoms. Some experts believe it can be a precursor to celiac disease. The antidote for both is the same: total avoidance of gluten.
    • powerofpositivethinking
      I haven't been on this forum for a long time, but it was absolutely wonderful during the diagnostic process!  My path for celiac disease diagnosis was the following: -Had normal IgA level, and my only serology positive test was the DGP IgG -Deficiencies in both Vitamins D and K that did not increase at first despite massive supplementation -Diagnosis of fat malabsorption both total and neutral -Diagnosis of severe exocrine pancreatic insufficiency (EPI) -Testing was completed to rule out causes of EPI, and the only one not ruled out was celiac. -Both traditional endoscopy and pill capsule endoscopy yielded negative results for biopsy confirmation, but my GI doctor said that both procedures simply could have missed the damaged spots. -EPI and fat malabsorption resolved after taking Creon for 6 months since my EPI was caused by celiac -23 and Me said I don't have either of the two prominent genes for celiac disease   Remember that you might not have 'textbook' symptoms, but you still may have celiac disease.   Also, I am SO incredibly grateful for this site for all the learning it has allowed me to do. I have a senior dog, and these last few weeks with her were very scary! After two hospital stays, she finally received an IBD diagnosis after having gastroenteritis and pancreatitis. I know that celiac disease is not IBD, however, through reading this site, I learned more about it. I was relieved when I found out she had IBD and not cancer this past Wednesday. I know IBD can be managed thanks to what I've learned here!  So celiac.com, not only did you help me, but you helped my pup too! Thank you ❤️  
    • SuzanneL
      It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 
    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
×
×
  • Create New...