Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?


Diagnosis...or Lack Of One...!

Rate this topic

Recommended Posts

Hello everyone, I just found this forum through Google :o)

I am from South London, England, and have been unofficially Coeliac for almost two years now. I say unofficially...

Two years ago I started getting 'the runs' too often to be a tummy bug. The locum doctor I saw, as efficient as ever, said it was just an ongoing stomach bug (yeah cos tummy bugs go on for four weeks...) but nevertheless after me pushing sent me for a blood test. On the test forms we get here the doctor ticks a box for the kind of thing to be tested for, well I went home and ticked all the ones he had missed just in case there was something else there lol.

In the meantime I kept a food diary, as when I was diagnosed with IBS my proper doctor told me to keep one to see what was making it worse and better. I went on being ill then fine then ill again until Easter weekend 2006, when I decided enough was enough, damn the doctors, and went on netdoctor to see what my symptoms could mean. When it came up with coeliac, I checked my food diary and immediately noticed - runs after pasta, fine after potato, ill after pizza, pies, fine after roast dinner, etc etc. It all made perfect sense. I marched up the doctors and had a right go at anyone who would listen given they had missed testing me for this, only to find out they had done a blood test for it, one of the ones I ticked the box myself for, and it had come back showing I was strongly coeliac FIVE WEEKS AGO! Cue more yelling. I then cut gluten out for good.

Anyway, I got referred to gastroentology unit and told I needed an endoscopy. I had read online that I was meant to eat gluten for six weeks prior to this. Now I only weigh 7 and a half stone which is pretty tiny for a 22 year old, and I weighed even less then due to the coeliac issue for two odd months. So I says to my specialist 'not to be funny but if I eat gluten again you'l have me in hospital on a drip to get some nutrients in me, cos I'm pretty tiny!' and he said 'no we can't have that your BMI is almost dangerous. well just don't eat gluten and the test will show your coeliac anyway. I'll put it in your notes'. They booked my test, I waited six months for it, and then on the day I'm on the bed in my wonderfully flattering gown waiting to be wheeled in and they say 'have you eaten gluten for six weeks?' 'er no I was told I didn't need to'. 'oh, well go away and eat gluten then come back. we can't do your test today'.

This was a year and a half ago. I still haven't been diagnosed, as I can't bear the thought of eating gluten for six weeks. I know I will lose a tonne of weight and feel like crap again. Also how the heck do I hold down a full time job if I have to spend half the time in the loo?! The blood test results are still sitting on my record showing I'm strongly coeliac, and anyone who knew me at that time will vouch for the difference losing gluten has made - no longer is my complexion grey, my ribs no longer stick out, and I can stay awake for more than 8 hours! My depression is also nearly a thing of the past.

Does anyone have any information or advice at all for me as to how I can get the NHS to understand me? How can there be 'one rule for everyone?' I have one doctor yelling at me cos my BMI is still low, and another telling me to get the runs for six weeks and get even skinner! I don't even care about getting food on prescription, I just want that little tick that will get people to take me seriously! Has anyone else had any similar issues?

Thanks, Lynz :)

Share this post

Link to post
Share on other sites

I'm not sure how much different it is in the UK than here - but it seems like a lot of the ppl on this forum dont have a dx - tho most that were really sick do, I think. Thats too bad that your doctor gave you bad advice about quitting gluten before the test! I think your best bet is just to say I believe i have celiac due to the blood test and I am not interested in further testing. If the doctors dont respect that . . . oh, well. You're a grownup, they cant tell you what to do, they are there to do the things you CANT do - like diagnose you, prescribe tests and medicine, etc.

SO i guess the question is - what's NHS and why do you need their approval? For funding for specail foods, or just so they believe you? Certainly sounds like you do have celiac . . . so why not just tell the docs to mind their own business?

Share this post

Link to post
Share on other sites

Hi Lynz and welcome :)

I'm also in London (East) and my hubby and 1 of my sons has celiac disease.

I'm sorry you've been given the run around by your docs BUT it is generally par for the course as most are terribly UNinformed about coeliac, its symptoms and HOW to test correctly for it.

Clearly, you simply CANNOT do the gluten challenge (and new studies are suggesting you may actually need to be on a gluten diet for THREE months NOT six weeks :o )

Have you explained to your GP what happened???....he knows you had a positive blood test.

Are you not under the gastro anymore???....I was thinking maybe he could write to your GP explaining that it's too dangerous for you to do a gluten challenge...but is happy to give you an 'unofficial' dx of coeliac

There are some GP's out there who will prescribe gluten-free foods without the 'Gold standard' dx (biopsy) ...but few and far in between I'm afraid :(

Another idea is to contact Coeliac UK ....they might be able to offer you some advise OR post a message on this Brit based forum for coeliacs...there are quite a few in your situation

Good Luck and don't hesitate to ask any more questions :)

Share this post

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Top Posters +

  • Upcoming Events

    • March 24, 2019 Until March 27, 2019
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 27, 2019 04:00 PM Until 08:00 AM
      Celiac Emotional Healing Support Group
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 30, 2019 Until March 31, 2019
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
    T Jenry
  • Forum Statistics

    • Total Topics
    • Total Posts
  • Who's Online (See full list)

  • Forum Discussions

    For what it's worth, I've noticed that if it's just iodine I will not get any other symptoms. In addition to the rash, I typically get GI symptoms, fatigue, and sometimes joint swelling when I ingest gluten. I don't typically eat seafood or stuff with lots of iodized salt, but sometimes I do on special occasions knowing that there will be some relatively minor consequences. Typically this is because I am traveling - canned tuna, salty snacks, jerky etc. are often the only nutritionally bala
    While a Celiac reaction requires actual consumption of gluten, I take no risks.  Sunscreen might melt into my mouth a long bike trip or I could bite a nail.   I use CeraVe lotion for my face.  In winter, I use their heavier cream.  I also use the Equate “CeraVe” version by Walmart which is made in Canada.  I use a lot of sunscreen.  I buy Equate which does not contain gluten, is recommended by Consumer reports and is inexpensive.  Do not use CeraVe sunscreen.  For some reason they changed t
I get those same bumps on the sides of my fingers sometimes. Always wondered what they were.
  • Blog Entries

  • ×
    • Create New...