Please Please Help, I Cant Carry On Like This - 6 Stone Weight Loss In 16 Weeks

[cristiana]

Hi Autumn Sky

Just to say first that my computer is in dire need of surgery so I will go silent for a few days (unfortunately I do not have any other means of going online at the moment).  

I will leave the blood results to those better acquainted with their meaning but thanks for posting the references.

Just to say - do you think the diarrhea has cleared up because you might have given up dairy (that is, if you did decide to?).   My diarrhea cleared up literally within that sort of time frame, as far as I can recall.

Anyway, all the very best to you and catch up when I get back on line again.

xx

[autumn sky]

I didn't give up dairy just yet. I decided to wait until after the endoscopy after all.  Puzzling - wish I understood it all! 

Hope your pc survives its surgery!!!

 

Autumn

x

[cristiana]

Hi Autumn

 

Ah - so not dairy.  But whatever the reason, glad you have had some good days.  About five months before my diagnosis I had the most awful diarrhea which I thought at the time was down to stress and iron supplements.  It cleared up after a while, then came back again, independent of stress and iron supplements.  Then I got the right blood tests that led to diagnosis - so for me, it did wax and wane.  

 

I'm going off line now, but all the best for tomorrow!  Remember, talk to your team and tell them your problems, and ask if there are any other tests they would recommend if the endoscopy comes back normal, such as perhaps a colonoscopy?  I say this because a friend of mine has had a colonoscopy, an endoscopy on her stomach, but has still not had a small intestine endoscopy, despite recurrent abdominal pains!  The NHS is wonderful but sometimes we as patients need to be proactive in connecting the dots.

 

xx

[squirmingitch]

Thsi is the full celiac blood panel:

 

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA 

 

The DGP test was added recently to the full panel.

 

 

Also can be termed this way:

 

Endomysial Antibody IgA

Tissue Transglutaminase IgA 

GLIADIN IgG

GLIADIN IgA

Total Serum IgA 

Deamidated Gliadin Peptide (DGP) IgA and IgG

 

I am not great at the blood interpretations but here is an explanation of the C - Reactive Protein:

Open Original Shared Link

 

and here for the Erythrocyte Sedimentation Rate:

Open Original Shared Link

 

So they are both to test for inflammation in your body & it also appears they are both dealing with the immune system. But there's that question of whether the test results on the 10th & 13th of October are a wash because of being haemolysed. 

 

I wish you well tomorrow & try like heck to prod the doc to take at least 5 samples, 8 would be better. Tell the doc you suspect celiac. 

[autumn sky]

Sorry for the delay in posting and telling you all how it went.  I was completely demoralised with no answers whatsoever.  Feel as if im no further closer to knowing what on earth is happening?

 

The Results:?

 

Risk Factors

None

 

Current Relevant Treatments

None

 

Past Relevant Surgery

Not Specified

 

Procedural Medication

No Sedation Given

 

Indications

Change in bowel habit

 

Findings:

 

Anus - Normal

 

Recturm - Normal

 

Sigmoid Colon - Normal

 

Descending Colon - Normal

 

Splenic Flexure - Normal

 

Complications

None

 

Comments

The quality of bowel preperation was satisfactory.  The preparation used was Citrameg.

6 Stone weight loss

Abdominal pain

FS to mid transverse - all normal

Will book for OGD as intolerant to wheat and weight loss

Thanks

 

Follow up

GP.  No further investigations are proposed

 

Rescope

No

 

--------------------------------------------------------------

 

He wouldnt take any biopsies - even though i asked. He said everything was fine.  He has referred me for a gastroscopy because of the symptoms but i feel so so demoralised - i really thought i was nearing finding out what the problem was and how i could start to heal myself.  Now im back to square one.

 

The only thing he did was to give me information on IBS - ive read it, but it the signs / symptoms dont seem to  fit.

 

He also said not to bother going back to the gp to get the blood tests repeated and to wait for the gastroscopy.

 

I have no idea which way to turn now and cannot tell you how truly hacked off and fed up i am

 

Autumn

[icelandgirl]

Oh wow...what the heck? Why wouldn't he take a biopsy? I'm so frustrated for you! ((Hugs))

Can you go back to your GP and request/demand full celiac and thyroid panels? It definitely seems like you need both run. Your GP should be concerned about such a significant weight loss in this amount of time.

I'm so sorry this happened to you...A lot of us have had bad Dr experiences as well. I've walked out of the office, into my car and just cried.

Hang in there!

[cyclinglady]

So, if I am following this correctly, you had a colonoscopy? Everything is normal? That is great! But a colonoscopy is not going to find celiac disease which occurs in the small intestine and not the large (colon).

Ask for the biopsies during the gastroscopy (a.k.a. Endoscopy). Keep eating gluten until all testing is complete.

I would really push for the complete celiac panel.

Take care!

[autumn sky]

As far as i understand it - i  have had an endescopy, which checks the lower half of the colon (Camera up rectum) and i am due to have a gastroscopy (camera down throat or nose) to check the upper half of the colon?

 

I think i will go to the gp and ask for the full celiac panel and print off exactly what they are and go armed to the gp?

[kareng]

As far as i understand it - i  have had an endescopy, which checks the lower half of the colon (Camera up rectum) and i am due to have a gastroscopy (camera down throat or nose) to check the upper half of the colon?

 

I think i will go to the gp and ask for the full celiac panel and print off exactly what they are and go armed to the gp?

 

 

endoscopy is the top half - colonoscopy is the bottom half.   The camera will not be taking any biopsies of the upper intestine (i would check on that if I were you). These biopsies are needed to diagnose Celiac disease.  Usually a gastroscopy is for the throat, stomach and maybe a few inches of the small intestine.  You might want to check that, too.

[autumn sky]

ermm this is probably tmi, but ive just been to the loo and now there was a small clot of blood in it.  Im kind of hoping that its after effects from saturday - although 3 days seems a bit of a stretch?

[autumn sky]

Karen - I dont know enough about it, everyone has referred to the procedure i had as an endoscopy, I watched the camera inside me and i could feel it - definite lower colon and rectum (plus they showed me where they would be checking on a 3d model). 

The nurse and the Dr referred to the next test as a gastroscopy - altough on the notes it gives the acronym OGD as the next investigation? Im just so confused???

 

My weight has stopped crashing and seems to be stabilising though, just not sure when its likely to all start up again?

[kareng]

Karen - I dont know enough about it, everyone has referred to the procedure i had as an endoscopy, I watched the camera inside me and i could feel it - definite lower colon and rectum (plus they showed me where they would be checking on a 3d model). 

The nurse and the Dr referred to the next test as a gastroscopy - altough on the notes it gives the acronym OGD as the next investigation? Im just so confused???

 

My weight has stopped crashing and seems to be stabilising though, just not sure when its likely to all start up again?

 

 

Whatever they want to call it - I am just trying to give you some info so you can ask the right questions.  

[autumn sky]

thank you i appreciate all the help i am given xx

[beth01]

Autumn- sorry it has taken me so long to reply. I stick by what I said earlier about your results, the ESR and CRP would be the only ones that are abnormal. Having a hemolyzed specimen will affect your CRP, but it wouldn't make it that high, a borderline test should have been questioned, but not a value that high. Had it been on the earlier day where you had the complete blood count and renal/bone/liver panels done, I would hope they would have redrawn your blood. That would have affected all but the blood count.

I hope you start feeling better soon and when they do the endo they figure out what's up. My weight also leveled off after I lost a bunch, but then I started losing really fast again. Three months ago it leveled off and stayed stable, but now I'm back to losing again. Take care and hugs to you.

[cristiana]

Hi Autumn

 

Well I am back - I thought I wouldn't be able to come on line this week but I have had the chance, as it turns out!

 

It sounds as if the doctors were checking you for colitis, that sort of thing, rather than celiac disease which would have been an endoscopy as in a camera down the throat.  Still - at least you know that your lower intestines are OK and some other conditions that would cause diarrhea have been ruled out.   It isn't always straight forward - I think my own doctor suspected colitis with me at first.  I seem to recall that when my initial blood tests revealed I had non-specific inflammation (my results showed slightly elevated gamma globulins) she asked me did I have bloody diarrhea,  At that stage I didn't - that treat was to come!  Finally six months on from that I had the full celiac panel and as I said previously, two of the three tests were unconvincing but the third was through the roof.  Which shows how important it is to have the full panel.   Even so, sometimes an endoscopy is the only way of confirming a diagnosis, the panel isn't enough.

 

What I would do is contact Coeliac UK and tell them your story.   Perhaps, then, they can send you some information to hand to the GP.  I was told by someone recently who is married to a GP that the BMJ have sent out a bulletin, I think saying that if a patient presents with certain specific symptoms (or perhaps weird unexplained symtoms, I must confess I haven't read it) to think coeliac.   Hopefully the GPs at your surgery will do exactly that.

 

Dear Autumn, this is sent with a big hug to encourage you to keep going.  I wanted to also enclose  quote by  Winston Churchill who said something along the lines of never, never, never give up etc etc.  I wish I could find the quote for you - this is not my usual computer and I can't figure out how to search for it online!  So you shall probably have to make do with a misquote.

 

Anyway, all the very best.  Keep us posted.  We are all here for you.

 

xx   

[squirmingitch]

I believe he said several things that would apply here.:

 

“If you are going through hell, keep going.”

 

“Never give in–never, never, never, never, in nothing great or small, large or petty, never give in except to convictions of honour and good sense. Never yield to force; never yield to the apparently overwhelming might of the enemy.”

 

“If you have an important point to make, don’t try to be subtle or clever. Use a pile driver. Hit the point once. Then come back and hit it again. Then hit it a third time-a tremendous whack.”

 

“Success is not final, failure is not fatal: it is the courage to continue that counts.”

 

~~~ Winston Churchill ~~~~