Should I get tested? Advice please.

[schlafentzug]

Hi, this might be a bit of an essay. Please bear with me.

I'm 16 years old (165cm, 46kg), and I'm from Australia - we have free healthcare here so money isn't an issue as to whether or not I do get tested. I think I may have coeliac disease, for a few reasons: I have iron deficiency anemia, multiple nutrient deficiencies, back pain, I'm significantly shorter than my parents despite having a varied (and healthy!) diet as a child, brain fog and am often too tired to do anything despite getting enough sleep (no amount of coffee fixes this), and I have dyshidrotic excema (not sure if related.) My brother had tests for celiac a couple of years ago - he had the flattened villi but tested negative for celiac. He has to follow the FODMAP diet but often "cheats" and as such, is often quite unwell. 

I noticed on my fridge that my parents had stuck up some medical tests that my doctor has requested. One of these tests (there's 14 of them) is a coeliac screen. It's worth noting that I have a diagnosis of bulimia nervosa. Ever since I can remember, I have been able to vomit. I can bend over and vomit. No fingers or anything, it just happens. Food seems to disagree with me, but the foods that are the easiest (sorry) are things like bread, cereal, etc. The lowest common denominator in this appears to be gluten. When I vomit, it's conscious, but there's almost no effort involved. A few times, though, I have involuntarily vomited for seemingly no reason. The foods were bread, seitan, and sushi. 

The other thing is that I smoke. I have heard that smoking can stop symptoms of coeliac - I'm not quite sure I understand this, but for what it's worth, I'm putting it in here. 

Any suggestions on what to do next? Should I stop eating gluten? I'm just a bit confused and sick of feeling so awful all the time. 

[cyclinglady]

Welcome!

You can start by asking for a celiac blood panel.  The catch is that you have to eat gluten daily for any of the celiac tests to work (including an endoscopy/biopsies).  So, do not give up gluten until you rule out celiac disease!   Here's more information:

Open Original Shared Link

Have other illnesses like Crohn's, stomach ulcers,  EOE, etc.  been ruled out (regarding the vomiting)?

Smoking can make all things worse!  Really, where did here that?

Stop smoking now.  It is a horrible thing to do. What the *&^%?  How can you even afford to smoke?  I can cut my parents some slack because back in their day, it was cool, glamorous and everyone was doing it.  But that was before they figured out that smoking kills.   Now, it you do it, you're either an idiot or you are trying to fit in with your peer group.  Harsh?  You bet.  Because I care!  

You might even heal that vomiting thing......

Anyway, we are here to support and help.  I'm off the "Mom" soapbox for now.  

By the way, did you know if your brother actually had a full celiac blood panel?  If not celiac disease, what made his villi flatten?

 

 

[GFinDC]

Hi Schlafentzug,

The usual diagnosis process is a blood test for antibodies first, followed up by an endoscopy to check for gut damage.  You have to eat gluten for 12 weeks before the blood tests.

It sounds like your brother may have celiac disease also.  His gut lining villi were damaged by something, and villi flattening  is a common celiac disease indicator.  Being shorter than other family members is also a common indicator.

The excessive gas is probably from bad digestion.  The gut damage interferes with proper digestion and some enzymes aren't made.  Lactase is made by the villi in the gut.

You should definitely get tested and before going gluten-free IMHO.

[schlafentzug]

  On 7/30/2016 at 2:56 PM, GFinDC said:

Hi Schlafentzug,

The usual diagnosis process is a blood test for antibodies first, followed up by an endoscopy to check for gut damage.  You have to eat gluten for 12 weeks before the blood tests.

It sounds like your brother may have celiac disease also.  His gut lining villi were damaged by something, and villi flattening  is a common celiac disease indicator.  Being shorter than other family members is also a common indicator.

The excessive gas is probably from bad digestion.  The gut damage interferes with proper digestion and some enzymes aren't made.  Lactase is made by the villi in the gut.

You should definitely get tested and before going gluten-free IMHO.

Expand Quote  

Would a coeliac screen be the same as a test for antibodies, then? I have no idea why it was even included in my list of tests. It could be my brother, or my symptoms, or both - regardless, I can't say I know too much about the testing. 

It's possible that my brother has coeliac disease, I really do worry about it sometimes. He was told to follow a strict low-FODMAP diet by his doctor, and eventually my parents stopped caring. Occasionally they will remind him not to eat things like pasta, greasy foods, etc. because of his condition, but by and large they don't care. He basically just eats whatever he wants. I'm not sure if it affects him or not. However, he isn't shorter than other family members - my dad is 183cm, and my brother is 178cm at the age of 14. Our mother is 173cm. 

I do think I have bad digestion, yes. I get gassy and very bloated often, as well as constipated phases (and then following that, diarrhea phases.) 

I have tried to ask my mum to call the doctor to get the tests done, but I'm hesitant to mention anything to do with gluten as I know they won't believe me, solely because a good friend of mine has celiac disease. I know they'll think I'm doing it for attention, or to be trendy, when in actual fact I'm just tired of being sick and having no explanation for it other than diet. I'm positive it's not dairy, as I was vegan for a couple of months at one stage. When I went back to eating animal products, I had no issues whatsoever. 

[schlafentzug]

  On 7/30/2016 at 2:26 PM, cyclinglady said:

Welcome!

You can start by asking for a celiac blood panel.  The catch is that you have to eat gluten daily for any of the celiac tests to work (including an endoscopy/biopsies).  So, do not give up gluten until you rule out celiac disease!   Here's more information:

Open Original Shared Link

Have other illnesses like Crohn's, stomach ulcers,  EOE, etc.  been ruled out (regarding the vomiting)?

Smoking can make all things worse!  Really, where did here that?

Stop smoking now.  It is a horrible thing to do. What the *&^%?  How can you even afford to smoke?  I can cut my parents some slack because back in their day, it was cool, glamorous and everyone was doing it.  But that was before they figured out that smoking kills.   Now, it you do it, you're either an idiot or you are trying to fit in with your peer group.  Harsh?  You bet.  Because I care!  

You might even heal that vomiting thing......

Anyway, we are here to support and help.  I'm off the "Mom" soapbox for now.  

By the way, did you know if your brother actually had a full celiac blood panel?  If not celiac disease, what made his villi flatten?

 

 

Expand Quote  

Thanks, I'll check that out. I may have to apply for my own Medicare card in order to get any kind of coeliac-testing done beyond the screen (see above post.) 

No, nobody has even mentioned it. I'm unsure if my doctor knows that I do not need to use my hands to vomit, or if she knows about the involuntary vomiting. 

I have a part time job at McDonald's and make around $150 per week, which is how I afford to smoke. Mostly, I spend my money on (generally gluten-containing) binge food and cigarettes. I did attempt to start saving money, but then my shifts were cut at work - which meant I had more time to study, but no money, which was kind of pointless. It's complicated. Here in Australia, cigarettes are $25 per pack. These aren't fancy cigarettes either, just your run-of-the-mill Marlboro 20s. Thanks for caring. I am trying to stop

I've had the vomiting thing all my life, way before I started smoking. And no, I'm not sure. I know he had an endoscopy and the flattened villi, but I'm not sure if he got a blood test - I assume he would have done, don;t know if it was the full panel. Supposedly he has this FODMAP thing, which I'll admit that I know next to nothing about. Interestingly, people who have to follow low-FODMAP or no-FODMAP diets can't eat gluten either, so there's that. 

[GFinDC]

Hi Schlafentzug,

You can get a Biocard IgA test kit in Australia.   They aren't real $$$, and you do the test at home with just a drop of blood.  The Biocard test only uses the IgA antibodies, so it is not a complete celiac disease panel.  But it is something to start with anyway.

The compete celiac antibody test panel wold include:

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

Some people with celiac disease are IgA deficient so the IgA tests don't work for them.  So the Biocard can tell you if you have an immune response to IgA antibodies to gliaden but not that you don't have an IgG response.  Basically Biocard being positive means you have a gluten antibody, but it being negative doesn't mean you don't have celiac disease.  Because you could still have an IgG antibody that the test doesn't detect.

Open Original Shared Link

But for the price of a couple packs of cigs you have a test.

There may be other places that sell this test kit in Australia also.