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Diagnosis - fecal calprotectin high, alkalosis, next stages?

Hey - this is my first post and it might be a bit long as there's quite a bit of backstory. I'm a 23yo woman and have several long term health problems including type 1 diabetes, autoimmune hypothyroidism and skin conditions (psoriasis, eczema, allergies). I'm also autistic.

2 years ago I suddenly developed severe diarrhoea, nausea and malabsorption. At the time, the fact that I had just returned from a holiday abroad made my GP think it was more likely an infection of some kind than anything long-term. However, stool samples for infections detected nothing and it went on and on. It was quite severe for about 3 months and then calmed down a bit but has still been ongoing for the past 2 years.

I get what seems to be constipation (or at least blockage of some kind) where I don't pass stool for up to 1-2 weeks, during which there is a lot of mucus. However when the "constipation" passes I don't have a hard mass of stool at all, but almost invariably have diarrhoea with a lot of mucus and occasionally bleeding. I also have vomiting on a regular basis after eating. My GPs have been throwing around IBS for a long time but I eventually pushed them to do blood and calprotectin tests. They found that I am in metabolic alkalosis (i.e. my blood is too alkali) which is "unusual" but we haven't got much further than that. Additionally my fecal calprotectin was high at 450 (the lab's reference range was <50).

I'm now waiting for a specialist appointment with a gastroenterologist in 12 days but worrying quite a lot about what this is and what the next steps will be. With a calprotectin that high, it looks like it's almost definitely something inflammatory? But my GP won't make any kind of definitive statements at the moment so I feel really in limbo, even though lots of people need to wait WAY longer than me to get answers so I shouldn't be too bothered. I'm currently just in a difficult state where I'm so exhausted, dizzy and stuff that walking around makes me feel like I'm going to faint. And eating is making me incredibly bloated with severe stomach pains. If anyone could tell me anything about what the diagnostic process is likely to entail that would be really helpful.

Also, going on steroids is likely to be basically catastrophic for my diabetes control (I already have "brittle" diabetes with very large and difficult to control blood glucose swings) so reassurance that thee aren't the only option would be pretty helpful as well!
 
Although your fc number is high it's not incredibly high. When my son's inflammation is simmering his fc is around 300+ during a flare it's been as high as 1700.

The GI would likely want to run more tests since fc can be elevated for different reasons. Usually the GI will do scopes (my son had upper and lower), some GIs will do imaging as well such as MRI or MRE.

If the diagnosis were to be IBD, although pred is often used to calm things while a maintenance med builds to therapeutic levels entocort (a gut specific steroid) as well as enteral nutrition could both be options.

Hope you get answers soon
 
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I have hypothyroidism also and am on synthetic. I am sorry for all you are going through and hope you get an answer soon.
 

scottsma

Well-known member
Location
Tynemouth,
You probably have some inflammation as although you Calprotectin level is higher than normal it's not excessively so.You GP will be reluctant to help until your GI appointment.My Cal.level was 400 I think,and I was on steroids for one month. I always find it helpful to make a list of symptoms etc.to take with me to the GI appt.,also a list of your present health problems and meds. You may be overwhelmed and anxious and might forget to mention something.Although they are usually pretty thorough.Kind thoughts to you.

You will probably be invited to have tests to view your insides and maybe have biopsies taken,but they are nothing to worry about,and it's all done with discretion and kindness.Being in the UK it's the waiting between appointments that makes things so stressful. If you're really worried and are at the end of your tether,you can go to emergency at your local hospital.But all they can do is ease your present symptoms.You should also have an IBD nurse at the hospital,who you can contact for advice.
 
Although your fc number is high it's not incredibly high. When my son's inflammation is simmering his fc is around 300+ during a flare it's been as high as 1700.

The GI would likely want to run more tests since fc can be elevated for different reasons. Usually the GI will do scopes (my son had upper and lower), some GIs will do imaging as well such as MRI or MRE.

If the diagnosis were to be IBD, although pred is often used to calm things while a maintenance med builds to therapeutic levels entocort (a gut specific steroid) as well as enteral nutrition could both be options.

Hope you get answers soon
Thanks - this is good to know as my GP seemed quite surprised by how high it was - I guess she just hasn't seen too many IBD patients. Thanks for the info, good to know there are other options beside prednisone. Just want to see the GI now so they can start helping me to deal with it.

I'm also kind of worried that if it calms down before I have the scopes then perhaps they won't be able to see what is going on and I'll be in limbo even longer... I don't know if that's a reasonable worry or not. Since having the calprotectin tests things have got worse again (flare started about a week after I gave the sample) and I'm struggling with nausea and a lot of pain so it would be ideal if they could just scope me now so they can see what's happening when it actually happens (lol). But I guess loads of people have to wait a couple of months before the scope so if that was too big an issue they'd be sure to rush it more. Basically the idea that this stuff could be going on in my body without anyone knowing about it is freaking me out a lot and I just want to know *exactly* what's happening NOW even if that's unreasonable.
 
I am on synthroid I meant. Are you on iron or b12 for the exhaustion?😭. Has the doctor done any blood work?
Thanks - I'm on levothyroxine and have been for 6 years now (diagnosed with hypoT when I was 17). Remembering to take it is the hardest thing :)

All my RBCs were normal:

"Mean cell volume 86.1 fL [80 - 99]
Mean cell haemoglobin level 27.8 pg [27 - 33.5]
Haematocrit 0.413 [0.355 - 0.455]
Red blood cell count 4.8 10^12/L [3.9 - 5.2]
Haemoglobin concentration 13.3 g/dL [12 - 15.6]"

I also had normal folate and B12, but I think they might be messed up because nobody told me to fast for the tests and I had a fortified cereal beforehand. Will ask them to repeat as it says online it should be fasting.

The thing which has historically been an issue for me is sodium levels - they tend to drop if I don't eat a high sodium diet. This is presumeably linked to malabsorption of some kind. I also know I'm not absorbing carbohydrates at the moment as I hardly need to take any insulin with my food! But the tiredness seems more related to electrolytes and malabsorption of carbohydrates than to vitamin/mineral deficiencies, from the blood tests I've had.
 
You probably have some inflammation as although you Calprotectin level is higher than normal it's not excessively so.You GP will be reluctant to help until your GI appointment.My Cal.level was 400 I think,and I was on steroids for one month. I always find it helpful to make a list of symptoms etc.to take with me to the GI appt.,also a list of your present health problems and meds. You may be overwhelmed and anxious and might forget to mention something.Although they are usually pretty thorough.Kind thoughts to you.

You will probably be invited to have tests to view your insides and maybe have biopsies taken,but they are nothing to worry about,and it's all done with discretion and kindness.Being in the UK it's the waiting between appointments that makes things so stressful. If you're really worried and are at the end of your tether,you can go to emergency at your local hospital.But all they can do is ease your present symptoms.You should also have an IBD nurse at the hospital,who you can contact for advice.
Thanks, I have actually got some medical insurance through work so I'm going privately for diagnostic tests so the waiting lists are shorter (I will then probably need to be referred back to NHS for treatment as the insurance pretty much only covers diagnostics). That advice is very helpful, I always forget to mention something. I will print out the bloods and stool tests I've had so far, and definitely take a list of meds.
 
Thanks - I'm on levothyroxine and have been for 6 years now (diagnosed with hypoT when I was 17). Remembering to take it is the hardest thing :)

All my RBCs were normal:

"Mean cell volume 86.1 fL [80 - 99]
Mean cell haemoglobin level 27.8 pg [27 - 33.5]
Haematocrit 0.413 [0.355 - 0.455]
Red blood cell count 4.8 10^12/L [3.9 - 5.2]
Haemoglobin concentration 13.3 g/dL [12 - 15.6]"

I also had normal folate and B12, but I think they might be messed up because nobody told me to fast for the tests and I had a fortified cereal beforehand. Will ask them to repeat as it says online it should be fasting.

The thing which has historically been an issue for me is sodium levels - they tend to drop if I don't eat a high sodium diet. This is presumeably linked to malabsorption of some kind. I also know I'm not absorbing carbohydrates at the moment as I hardly need to take any insulin with my food! But the tiredness seems more related to electrolytes and malabsorption of carbohydrates than to vitamin/mineral deficiencies, from the blood tests I've had.
I am on the same medicine you mentioned for hypothyroidism. It is sometimes hard for me to juggle all the medications sometimes. It is hard between my Crohns Disease and the resection for my body to always absorb all the nutrients. I hope you get some answers.
 
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