Jump to content

  • 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:
    Support Our Content
    eNewsletter
    Donate

Hi, I'd Really Appreciate Some Advice...

English Chick

Recommended Posts

English Chick Newbie
English Chick
Posted

Hi everyone,

Since the age of twelve I've suffered from IBS although I wasn't diagnosed until a few years ago, at first it was quite severe I was constantly on the loo sweating/feeling faint/sick with diarrhea, I went to the doctors numerous times but they couldn't diagnose me so I guess I learned to live with it. Over the years It has improved, it only get's really bad maybe once/twice a week but then again it really does depend I go through good and bad phases...A few years ago I started with another symptom, bloatedness. My tummy would get so big I would look 6 months pregnant! This was when a doctor finally diagnosed me with IBS and gave me Colpermin which eased the bloatedness a little (passing wind helped, sorry to be so graphic!) I never found something to ease the first symptom. I've tried watching my diet for something that triggers either symptom but haven't found anything in particular really...

About 18 months ago I started getting migraines every day and this lasted weeks, was constantly tired from this, had no energy etc, I went to the doctor and he told me that it was probably just a phase and the migraines would probably go in their own time. I wasn't happy but I thought oh well I'l wait and see. It got worse so I thought I would go and get my eyes tested, they referred me to a specialist and they found nothing. They suggested diabetes, went back to the doctors, did blood tests and everything came back fine. I went to see another doctor and he told me that it was the contraceptive pill I was on the hormones didn't agree with me. He said I was at very high risk of having a stroke, put me on these tablets to stop the veins in my head from swelling which spaced me out completely! I ended up coming off them and all the other medication as I just didn't feel right having all this med in my system. The migraines stopped for a short while but now they're back. First started with headaches then the migraines came, IBS still as bad if not worse, constantly lethargic, I have mood swings (always had them really I always put it down to the pill) and recently I've started to get really dry skin on my hands with blotchy patches. All in all over the past few months I've felt considerably worse in myself.

I went to the doctors yesterday and told him I had been looking on the internet about food allergies/celiac after someone asked me if I had been tested and he simply replied with 'because your asthmatic you would probably be intollerant to most things so it's not worth you getting tested' and advised me to cut out wheat then lactose until I feel better. I've been looking at this site for the past week or so and my symptoms seem to be very similar to a lot of people on here. I would really appreciate it if I could get some advice as I don't seem to be getting anywhere with my doctors and everyone on here seems so nice, this has been the best Celiac site I have come accross :D I've stayed off Gluten food for three days now and feel a lot better but I don't know if that's just coincidence...

Thankyou in advance, I apologise for the extremely long post!

X

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

Celiac.com Sponsor (A8-M):


~alex~ Explorer
~alex~
Posted
I went to the doctors yesterday and told him I had been looking on the internet about food allergies/celiac after someone asked me if I had been tested and he simply replied with 'because your asthmatic you would probably be intollerant to most things so it's not worth you getting tested' and advised me to cut out wheat then lactose until I feel better.

I am asthmatic and definitely not intolerant to most things. I have Celiac and have found only a handful of other food that I may be intolerant to.I really don't think asthma would result in a false positive on the Celiac panel. At least your doc suggested cutting out wheat but you would really need to cut out all gluten sources.

I think you should be tested if that is what you want to do. I hope your doctor will test you or that you can find a different one that will. If not, you could always try going gluten-free and see how you feel. I hope you find some answers soon. It sounds like you have been feeling quite ill for awhile.

edit: I initially read your post wrong so I edited my response accordingly.

Lisa Mentor
Lisa
Posted

Welcome and we're glad that you found this site so informative. :)

I am not a fan of the doctors you have been seeing. There are three ways (to date) for Celiac testing. 1. You can have an IgA Antibody Blood Panel. 2) An endoscopy/biopsy exams can confirm Celiac, but it is often hit or miss. 3) Positive dietary response could confirm Celiac or Gluten Sensitivity without an "official" diagnosis.

Should you decide to pursue further testing it is important to remain on a full gluten diet.

If you choose to forgo testing you can begin your gluten free diet immediately. Here you can learn how to begin. The diet is much more involved than just removing wheat from your diet. This site will be helpful.

I hope you find your answers soon and feel free to ask away.

nikki-uk Enthusiast
nikki-uk
Posted

Hi English Chick!!!

My husband and son are both coeliacs.

First off - assuming you are in England - your experience is fairly typical...my hubby was ill for many years before being diagnosed ..and my son only diagnosed 'cos of his Dad :rolleyes:

Your GP is WRONG to say 'because you are asthmatic you would be allergic to most things'.....DEAR GOD!!!!

First off Coeliac Disease is an intolerance NOT an allergy - and if your GP knew didly squat he'd also know it's an autoimmune reaction.

Secondly - DON'T GO gluten-free YET!!!!!

Insist on the blood tests (get them done NOW whilst you potentially have gluten anti-bodies in your system) - once you go gluten-free for any length of time it may give you a false negative <_<

Is there another GP you can see??? (I found the younger of the 2 at my surgery has more knowledge about celiac disease )

If he's not sure what tests to do contact Open Original Shared Link who can advise :)

English Chick Newbie
English Chick
Posted
  • Author
Hi English Chick!!!

My husband and son are both coeliacs.

First off - assuming you are in England - your experience is fairly typical...my hubby was ill for many years before being diagnosed ..and my son only diagnosed 'cos of his Dad :rolleyes:

Your GP is WRONG to say 'because you are asthmatic you would be allergic to most things'.....DEAR GOD!!!!

First off Coeliac Disease is an intolerance NOT an allergy - and if your GP knew didly squat he'd also know it's an autoimmune reaction.

Secondly - DON'T GO gluten-free YET!!!!!

Insist on the blood tests (get them done NOW whilst you potentially have gluten anti-bodies in your system) - once you go gluten-free for any length of time it may give you a false negative <_<

Is there another GP you can see??? (I found the younger of the 2 at my surgery has more knowledge about celiac disease )

If he's not sure what tests to do contact Open Original Shared Link who can advise :)

Thanks Nikki, I'm going to go docs again and see another doctor. I went into Holland & Barretts today and asked about allergy/intolerance testing and they said there's a woman who works there that can test me against 81 different foods! And it costs me

nikki-uk Enthusiast
nikki-uk
Posted
Thanks Nikki, I'm going to go docs again and see another doctor. I went into Holland & Barretts today and asked about allergy/intolerance testing and they said there's a woman who works there that can test me against 81 different foods! And it costs me
English Chick Newbie
English Chick
Posted
  • Author
Why indeed - although the above mentioned test CANNOT test for coeliac disease ...and has had quite a bit of bad press <_<

Good Luck :)

The Holland & Barrett test? I mentioned that I thought I might have Celiac and she didn't say anything...what have you heard?

Also apparently Boots have a test you can buy normally

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

Celiac.com Sponsor (A8-M):


nikki-uk Enthusiast
nikki-uk
Posted

Here's one article re: Holland and Barrett Open Original Shared Link

They do not do the specific tests for celiac disease which are:

Anti-tissue Transglutiminase IgA (tTg)

Anti-Endomysial IgA (EMA)

Total serum IgA

These all together give a clearer picture of what is going on.

There is one test you can buy that is advertised on CUK's website - but it's only one component of the test (tTg)

Open Original Shared Link

:)

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,893
    • Most Online (within 30 mins)
      7,748
    Sgp
    Newest Member
    Sgp
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
    • trents
      How Come Gluten Didnt Bother Me In Italy

      By trents · Posted

      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 
    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.