Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1-m):


Archived

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

CurrantCottage

Well Thats It Then !

Recommended Posts

Well, I saw the Consultant today who went through my medical history and asked questions about my longstanding digestive problems.  I went through everything and mentioned my asthma/eczema/hives but she wasnt interested in that.  She asked lots of questions but said that she felt my fatigue and digestive problems were separate.  That my fatigue is linked to my low ferratin which is linked to having had four pregnancies and heavy periods and not ever having sorted out the low ferratin levels.  She said my digestive issues were linked to my gallbladder removal and prescribed me bile salts to aid my digestion and settle everything down.  She said I cant be coeliac because the blood test I had a year ago was comprehensive and is 98% accurate and its practically impossible to have a false negative so she wasnt going to do a biopsy.

 

I mentioned the nutritionist I'd seen and that I'd give up gluten for a month - felt better, then added it back it to see what happened and that my bloating/brain fog/cramps/tiredness etc came back.  She said that everyone was very quick to jump on the gluten free bandwagon these days and that what is usually to blame is the bread, it being a high Fodmap food with the yeast but as I'm a vegan she didnt recommend me cutting out any food as I already have a restricted diet and said I wasnt gluten sensitive.  

 

One thing to note - for a vegan although my ferritin is extremely low always, my red blood count is normal and my folate and b12 is good so I must be doing something right - also, its funny but I dont see my diet as restricted - I eat lots of things, just different to other people I guess!

 

Anyway she sent me for a blood test to check my Vitamin D and Cortisol just to see if they are low and said she'd see me in 8 weeks and would tell me the results of the blood test then.  Oh she also said she'd book me in for an iron infusion rather than issue more tablets.

 

i feel so embarrassed and like a hypochondriac - as if I've imagined all the side effects that I had since going back onto gluten - honestly, I felt like crawling under a rock I felt such a time waster especially as this doctor is a coeliac specialist!  Oh well, I guess I need to be thankful that I am well and dont have anything serious wrong, but i am going to cut bread out - I'm sick of stuffing gluten in so that I can get a biopsy done, no point now !

 

I do want to thank all of you lovely kind people on this forum who have been such a help and encouragement to me, I couldnt have got through these past 5 weeks without having somewhere to post questions or just read other peoples posts.

 

Thank you!

 

Ali

 

 

Share this post


Link to post
Share on other sites

Join eNewsletter


Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


She could be right and it could be FODMAPS.  Wheat is a high FODMAP food.  So cutting it out cuts out a lot of the problems for many.  The good news, if that is the issue, is that you don't have to be super careful about being gluten-free.  You can go to a restaurant and not worry about the soy sauce - just don't get wheat based noodles, for example.


 

 

Share this post


Link to post
Share on other sites

Join eNewsletter

And that doc doesn't know what FODMAPS are - yeast isn't the issue with bread.  Here is a nice easy and basic explanation:

 

https://stanfordhealthcare.org/content/dam/SHC/for-patients-component/programs-services/clinical-nutrition-services/docs/pdf-lowfodmapdiet.pdf


 

 

Share this post


Link to post
Share on other sites

Join eNewsletter

That really doesn't have to be it.  If you aren't happy with the answers you are getting, get a different doctor.  Just because you tested negative last year, doesn't mean you haven't started producing antibodies now.  It's not a test that if you test negative, you are negative forever, those numbers can change.  I hope you figure it out and get to feeling better soon.


Diagnosed April 7th 2014

Share this post


Link to post
Share on other sites

Join eNewsletter

I agree you should get another celiac panel done. It doesn't have to be done by a GI doctor any doctor can order one. If you can't get anyone to test any further listen to your body.  I suppose you could try going gluten free again and then when you are feeling better maybe have soups with barley daily for a week or so to see if there is a reaction.That might tell you whether you have a gluten issue or not.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

Share this post


Link to post
Share on other sites

Join eNewsletter

I agree with everyone.  It could be FODMAPS, or it could still be (seronegative or early) celiac disease, or it could be non-celiac gluten sensitivity (NCGS) which affects somewhere between 5 and 20% of the world. 

 

If it is celiac disease, then retesting on all the tests is called for.  If it is FODMAPS, then avoiding those foods will help and it will also help with NCGS (and celiac disease) since you will be eating gluten-free on that diet too.  https://stanfordhealthcare.org/content/dam/SHC/for-patients-component/programs-services/clinical-nutrition-services/docs/pdf-lowfodmapdiet.pdf I now find it funny that doctors are pushing the low fodmaps diet before the gluten-free diet because low fodmaps seems more restrictive than going gluten-free.... You think you'd try that first. 

 

Anyway, there is no test for NCGS except a positive response to the gluten-free diet.  Don't rule out NCGS yet - the symptoms are very real and are just as bad as those of a celiac, minus the intestinal damage.  Both are nasty.

 

Best wishes to you.  I hope you get feeling better soon.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

Share this post


Link to post
Share on other sites

Join eNewsletter

A very belated "thank you" to all your replies and advice!  I've felt so upset by the consultant that I feel I've been hiding away!!!  She really wasnt interested in my issues as a whole the asthma, eczema etc along with the digestive issues, fatigue and low ferritin etc, she kept saying that they were all separate issues and not linked, I think what hurt me most was the fact that I was seeing her as a private patient so thought it would be different !!! Well, I've kept the status quo - eating gluten foods that is, I've got a stool sample to do (testing for colitis which I'm sure I dont have - abdominal pain and diarrhoea is not acute enough) and I've got to get the results of that and the cortisol and vitamin D blood tests in 7 weeks when I see her again.  I will wait and see what she says next time and I guess it makes sense to keep eating gluten until then and if she wants to think about a Fodmap diet then well, I will give it a go.

 

Thanks again!

 

Ali 

Share this post


Link to post
Share on other sites

Join eNewsletter



Join eNewsletter