Starting Diagnosis Process - Need Opinion For Questions To Ask

[JohnMcLane]

Hi,

 

I’m new to this forum, thanks for hosting this, there is a lot of great information here.

 

I’m writing this because I’d like to get your opinion and experience on the process being diagnosed with Celiac. Here’s a quick run-down of where I’m at:

 

• I feel constantly tired. I don’t sleep well at night and usually wake up tired. Sometimes it feels as if I didn’t sleep (I don’t have sleep apnea)
• I have mood swings and often feel down. Not downright depressed, but quite down.
• I have pain in my abdomen. Most precisely lower-left abdomen. Here’s the trick though:
  • Sometimes I feel good and don’t have much pain. (but I’m still tired)
  • Then, all of a sudden I have a huge flare-up that will leave me weak and vulnerable.
  • Then nothing for X amount of time.
  • Here’s an example:
    • Last Sunday I ate a Domino’s pizza. Started feeling really bad. After about an hour and half I started to have diarrhoea. I had diarrhoea 3 to 4 times in the afternoon/evening.
    • I had a bit more Monday morning then it stabilised. When this happens, I usually eat only meat and cooked vegetables.
    • Those flare-ups leave me weak, irritable and I feel as if I’m hurt. As if my intestine we’re cut and now they’re swollen and sensitive, trying to repair.
    • I’ve been recovering this week; sleep has been disastrous. I don’t have insomnia but sleep is not restful
  • With this example, it’s likely that once it’s passed, it won’t happen for something, but right now, I feel awful. Walking to work in the morning feels like walking through a fog, completely exhausted (I just had 9 hours of sleep!) and I feel like my intestins are weighing 1000 pounds.
• I can’t exercise. If I exercise, I feel super exhausted for the next days and it negatively impacts my mood.
• Lately, I’ve had trouble focusing too. I used to be able to read for hours at a time, now reading for 15 minutes is an accomplishment.

 

 

I’m not sure if this fits with Celia or Gluten intolerance. This cycle has been happening for years now. Severe flare-ups can take over 2-3 weeks to recover from. One doctor diagnosed IBS, which I’m not sure of… Now, I’m trying with another doctor, since I moved country to the UK.

 

I already had some blood tests: Thyrroid is now ruled out. Other than that, the doctor said I’m all ok. I’m not sure if she tested for Celiac. I’m meeting tomorrow with one of her colleagues to discuss the results and I definitely want to specifically talk about Celiac, especially considering what happened Sunday. I have an idea of what I should talk about with him, but I’d like to get your opinion on other relevant topics that would be worth discussing that I might have overlooked.

 

• Discuss the blood test results
• Review the symptoms
• Discuss Celiac and if it was tested. If it was, what kind of test, what’s the error potential.
• Discuss Non-Celiac Gluten Sensitivity
• Discuss the option of ordering a full panel of tests.

 

 

Do you see anything else that might be discussed? I’m actually very keen on getting a diagnosis and want to be careful about “putting ideas in my head” and auto-diagnosing. At the same time, it feels like my symptoms are awfully close to Celiac or Gluten Intolerance, so I want to make sure the doctors consider every aspect and options.

 

Your help would be greatly appreciated.

 

 

 

 

 

 

 

[Jays911]

Get the celiac checked.  Might be something else, but your symptoms are consistent.

[JohnMcLane]

Get the celiac checked.  Might be something else, but your symptoms are consistent.

Thanks for the advice.

 

Here’s an update for people interested. The doctor said Celiac was tested through blood tests and was normal. So it isn’t it. She diagnosed IBS and told me to go on a Low-fodmap diet. We’re doing one last test (stool analysis) to see if there is any inflammation in the bowels.

 

She told me I’ll have to manage the IBS and might recommend some CBT psychotherapy. This is quite depressing to me. Yes I have flare-ups but what about the constant fatigue? What about the fact I can’t even go to the gym? The bad sleep, the foul mood? From what I’ve read, IBS doesn’t cover any of that. Her diagnosis feels like a cop-out.

 

The low fod-map diet is even more restrictive than the no-gluten diet. So, maybe it’ll help.

 

For now, back to work and tonight is “bottle of wine and top gear” trying not to think about this night…..

[cyclinglady]

Which celiac blood tests? If I had taken just the typical celiac screening test (TTG and IGA deficiency), my diagnosis would have been missed. I tested positive on only the DPG. Any possibility of taking the additonal panel? I think in the US, the complete panel is around $450 (and you have had a few of them already). Maybe you can pay cash? Not sure how it works in the UK.

In any case, you can try the FOD-MAP diet or decide to go gluten free without a formal diagnosis.

I wish you well!

[JohnMcLane]

Thanks for the information Cyclinglady!

 

As an update, embracing the IBS diagnosis, I got on the Low Fodmap food diet and am now in my second week. It feels like night and day. The bloating has reduced, pain has reduced, there is still a bit but is slowly going away. I feel much much better. The biggest thing is that I now have a deep, restful sleep. I'm definitely less irritable and less stressed, due mostly by the fact i'm able to rest properly but also because the body feels better too.

 

I had a flare yesterday because I probably ate too much salad (salads seem to be a trigger for the IBS) but I recovered very quickly and was able to sleep nonetheless.

 

I know this is a celiac oriented forum, but I figured I'd give an update if ever there are people that couldn't figure exactly what's going on, like I was. The low fodmap diet is tough to follow, but definitely working.

 

Thanks for your help!