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Kricket73

So could I be right or is he just an idiot?

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Three years ago I lost about 40kgs (Aussie lol) by better diet & exercise. All was going great til I stopped losing. I upped my exercise but bizarrely started gaining weight.

One night a week of not being able to sleep soon became two, then virtually every night with either 1-2hrs tops or none at all.

These weird symptoms started about two years ago, becoming worse in say, the last 9mnths.

Then I started to get diarrhea. Occasionally then weirdly 2-3 days with multiple occurences then a day or two with nothing, then back to loose & offensive.

My GP ran tests, including the TTga (hope that's  right) antibody blood test. Negative so he tells me that's not it. After 9mnths of this he shrugs and says, "I don't know what it is I've run out of ideas what ideas do you have?"

Finally refers me to a gastrointerogist.  Private, of course and can't really afford it but we (my fiance and I) go. Stools and blood samples are ordered, basically bye, see you in a month. I have looked my symptoms up and they seem to point to Celiac.

Today we went back. I have been having bloated stomach, sore back and limbs,  lovely burps, constant urination and crushing anxiety attacks folowed by depression (which I have never had before in my life). Admitted over the last weekend I didn't sleep for two and a half days and found myself hallucinating and crying to just be able to sleep.

Mr fancy pants gastrointerogist says," Hey great news, the stools samples rule out parasites and Crohns!" I tell him how excrutiating the last month has been to which he replies,

"It's not Celiac disease, (points at negative blood test results). Celiac doesnt present with diarrhea, anxiety and frquent urination all together."

I also had a fecal occult blood test which showed positive & notes say are maybe due to a lower gi bleed, and a ct scan that says shows some damage which, in their words, could be due to a condition such as Celiac disease.

He has booked me for a double scope as the next step, has a few ideas what it could be (won't tell me because he doesn't want me to be 'anxious').

Told me to consider that all these symptoms could be me just worrying and being anxious. Told him when this started I was not worried about anything, shrugged and said, It could stil have happened, hey, sometimes we never find out what causes it and your just stuck with diarrhea forever." Then as I was leaving he slapped me on the back and said, "Don't worry so much, see you soon."

I need to have the scopes done but is it me or are the things I was told today not true?  I would honestly love it not to be Celiac disease but could he be wrong?

Edited by Kricket73
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Hi Kricket,

Welcome to the forum! :)

Yes, he could be wrong.  Not everyone passes the blood tests.  And they are just one part of the diagnostic process anyway, although an important one.   Did you have the complete celiac antibodies 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

If you didn't have the full celiac disease antibodies test panel, I'd insist on getting it done.  There have been numerous people on the forum who tested positive on one antibody but not on others.

Edited by GFinDC

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The first two tests (at least in the US and most of the EU) have been replaced by the DGP tests (at the bottom) of GFinDC's list of celiac tests.  Not all celiacs test positive to the common Screening TTG.   The TTg is good and catches most and it was cheaper to run the best one (it is all about the money), but researchers realized they were not catching all celiacs.  Here is a link to the University of Chicago's celiac website.  When I was diagnosed three years ago, this site recommended just the TTg (as did the American GI Association).  Now they have expanded the list of celiac tests.  

http://www.cureceliacdisease.org/screening/

Luckily, my GI must have just attended a GI conference and he ordered the complete panel for me.  ($400). It paid off.  Only my DGP IGA was positive and the rest of the blood panel (including the popular TTG test) was negative.  My biopsies revealed some severe intestinal damage.  My new health provider only allows PCP/GP doctors to only order the TTG.  So, if I want the follow-up testing to see if I have improved or had a gluten exposure, I must go to my New GI.  Yep, it is all about the money!  

Keep eating gluten and make sure your  GI takes four to six samples during the endoscopy.  Maintain copies of all your results.  

Your symptoms?  Yes, there are over 300 celiac disease symptoms.  celiac disease does not just affect the gut, but mis-informed and those who do not keep up with the latest in medical, do not seem to know that!  

Do not give up!  

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Ok, I can't seem to find my first lot of blood tests that were done for Celiac screening, they did include TTG I remember that much, and I am getting another copy of it but another test did come in today.  I don't know how different tests are done around the world and I don't get all the medical jargon but this is what it states,

*******************************************************************************

HLA DR/DQ Genotyping for Coeliac Disease,

Specimen type : EDTA blood

Method : Detection of sequence-specific oligonucleotides (Gen-Probe).

HLA-DR - 1, 13          DRB1 - 01, 13

HLA-DQ - 5,6        HLA-DQA1 - 5,6      HLA-DB1 - 05, 06

Interpretation : No genotype susceptibility for coeliac disease.  The DQ2 and DQ8 antigens associated with increased risk of coeliac disease were not identified in this patient.  In the absence of these antigens, coeliac disease is extremely unlikely.

 

*******************************************************************************

  I have read the horror stories of blood tests and scope biopsies not be done right or flawed but here is what I do know as of now,

At the moment the most non invasive test I can have done say negative.  I have double scopes (endoscopy and colonoscopy) booked for the 12th of October with results from biopsies expected a week or two after.

Chances are they will show, a) signs of coeliac disease (even if the odds are low it can still happen), b) show signs of something else entirely and we will be busy dealing with the ramifications of that or c) it will show no signs of coeliac but I will still be suffering from gluten sensitivity (which is harder/impossible to measure clinically).

My GP has told me that stress and anxiety can be a cause of all the symptoms I have been experiencing and suggests if the scopes show nothing that I may benefit from something to treat anxiety, i.e. antidepressants.  Not in a, "Oh we don't know what it is so have these," kind of way, he agrees with the thought that the scopes could indeed show coeliac, something else or even be negative.

I did tell him that I could have a sensitivity and that even without benefit of clinical results, some people have gone on a gluten elimination diet for a period of time to see if they get any relief. 

My question is this, if the scopes come up negative and I try eliminating gluten, how long would it be before I saw any results or improvements?  I have read enough here and elsewhere to know that everybody is different, some see results within days, some see results longer but are there any guidelines for how long a test like this should be undertaken for?  I have heard everything thing from two weeks to two months.  All of this is entirely moot at this point but I know that even if the results said clear, there would always be a little part of me that wonders if it could be a sensitivity that is the problem.  Any thoughts or advice greatly appreciated, and a thank you to all those who have taken the time to respond and offer advice and encouragement so far.

 

 

 

 

Edited by Kricket73
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Hi Kricket,

I think you could do a really good elimination diet test in 6 months.  You could start by eliminating gluten, wheat, rye, and barley.  Oats probably ought to go too.  Then consider eliminating all the top 8 common food allergens.  I think in Europe the have a longer list of maybe 10 or 11 common food allergens, but in the USA it is 8.

It may take some time but an elimination diet can identify issues with food intolerances that doctors have no tests for at the moment.

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Had double scopes a little over a week ago. Saw gastrointerologist yesterday. They found a small sliding heitus hernia near the oesophagus, 2 medium sized polyps in the descending colon and the larger (15mm) in the rectosigmoid colon. Also small 1st degree haemorrhoids noted.  He took samples from the oesophagus, stomach and duodenum. They all came back for celiac, said it was 100% I don't have it.

Gave me a script for my sore throat which he now thinks could be acid reflux.  Still having terrible diarrhea, urinating frequently, insomnia still horrendus, back pain and horrible anxiety.  Made an appointment with a dietician he uses for food intolerances to see if it's a food based problem but I can't see her til the end of next month.

Saw my GP today and he thinks that with no concrete evidence of anything we should probably start on anti depressants because anxiety is probably causing all the symptoms.

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There is still a possibility that you have NCGS (non-celiac gluten sensitivity).  People with NCGS can have similar GI symptoms as people with celiac disease, but without the damage to the gut.  There's also the possibility of lactose intolerance, or a reaction to any number of other foods.  There is a test the doctor can do for lactose intolerance.

I assume you are going to have the polyps removed?  My sister had polyps removed, she said it was no big deal.

It's great that you are getting some answers! :)

Edited by GFinDC

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The polyps were removed on the day and biopsied, came back as non cancerous or problematic, they usually get removed if possible at the time of the procedure so as not to cause problems down the road.  It wasn't a major deal, I was asleep through it after all!  I researched the dietician recommended and she basically places people on a restricted diet for awhile then works out what food/chemicals you have a problem with and goes from there.  Working out what causes the problem is the main thing.  I will ask about the lactose intolerant test.  I don't care at this stage if it's NCGS, I'd happily adjust to even a full non gluten diet.  I can't handle much more of the symptoms.

Yesterday I urinated approx. 20 times, had diarrhoea at least 7 times and last night I got my usual 1-2 hrs of sleep.  Whatever it is that can stop this and make me as close back to how I use to feel is what I have to do.  This isn't living it's torture.

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Kricket, you asked earlier about how long to try the diet. I would say give it a good 6 months and be sure not to get cross contaminated. Be very strict with it. Read our Newbie 101 pinned at the top of the Coping Section to help you learn the diet & cross contamination concerns.

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