New member, waiting for diagnosis

[x0lou0x]

Hi I am new to this website, I'm 20 years old and have been feeling ill for over a year now, starting with extreme fatigue, diarrhea, gas and stomach pains.
I got diagnosed with IBS and anaemia I had a course of iron tablets and felt better and my iron levels went back to normal but after a month or so of coming off them I went back to feeling extremely tired and it turned out my iron levels had dropped right back again.
Around 5 months ago I started noticing blood in my stool, ignored it for a while thinking it might be a fissure or piles but after a month I went to the doctor and they suggested it might be IBD.
I got scheduled to see a consultant and they said they wanted to do a colonscopy, I had this done at the end of August and they did 26 biopsies and said I had nodules and mucosa in my terminal ileum, after analysing the biopsies they didn't find anything specific but diagnosed me with LNH which could be related to Crohn's.
I have only spoken to my doctor about this over the phone and have no idea what this means and can't find anything on the internet about this.
My next meeting with the consultant is in November and I feel this is a long time to wait with feeling ill/tired and stressing over why I am bleeding whilst trying to complete my third year of uni. I am also too scared to go out with my friends and drink as I never know if I a going to get ill.
Has anyone had a similar story or been diagnosed with LNH? I would appreciate some advice, Thanks.

 

[David]

Hi x0lou0x and welcome to the community.

Did they provide you the words that LNH stands for is that all they said you had?

Unfortunately, too many have similar stories to you Sometimes the road to diagnosis can be very difficult. I suggest connect with the folks in our Undiagnosed Club as many sadly are going through exactly what you are.

We're here for you.

 

[x0lou0x]

it stands for non specific nodular lymphoid hyperplasia, all my doctor said was that my lymph nodes were working too hard and they don't know why.
I will check out that forum, thank you

 

[David]

I'm not familiar with that one, sorry Paging Aussie and Dustykat to see if either of them understands it. Both of them are wicked smart folks.

Please keep us updated on your progress though and let us know if there's anything we can help with.

 

[DustyKat]

Matt's pathology from his surgery showed hyperplasia of his lymph nodes which isn't surprising under the circumstances but don't know that those findings are the same as LHN, IYKKWIM.

I did do a bit of reading about it at the time and came across quite a bit about LHN. IIRC there was a lot of conjecture as to the significance of a finding of LHN and how it may or may not tie into it's role with gastrointestinal disorders. I think the confusion stems from the fact that it is not an uncommon finding in children that are otherwise healthy.

What did repeatedly come up though was the idea that it may have to do with food allergies. Symptoms associated with it are what you describe...pain, bleeding and diarrhoea.

I'm sorry, I don't really know much more about it than that but in view of your age I personally think it may be of significance and would push for further answers and testing as to why it is present.

Good luck!

Dusty. xxx

 

[Aussie]

Hi David and Lou, common to have nodules in the terminal ileum of young people (includes 20 yo's), which when biopsies come back as nodular lymphoid hyperplasia - usually completely benign. They tend to disappear as you get older.

Can occasionally be associated with viral and bacterial infections, and immune deficiency states and some studies linking it with Food Hypersensitivity.

You'll probably find a lot of information linked to autism on google, quite controversial, although not relevant to your presentation.

If you've had symptoms for over 1 year, unlikely to be active viral or bacterial infection, but you may have post infectious IBS. Wouldn't explain anaemia and rectal bleeding. Ensure you get a faecal calprotectin, if this is in the normal range while you have symptoms, then this is quite reassuring.

Given you've had a normal colonoscopy, the rectal bleeding is less concerning.

In regards to the iron deficiency, common in pre-menopausal women (do you have heavy periods for example), however, shouldn't be anaemic with normal heavy periods.

Also, make sure you've had an endoscopy with small bowel biopsies to ensure you don't have coeliac disease (would also explain the anaemia).

Food hypersensitivity may explain some of your symptoms, might be worth seeing a dietician and try an exclusion diet if your really struggling.

Best wishes.

 

[x0lou0x]

Because I got migraines I had to go on a pill that doesn't give you periods so it can't be that that's making me anemic, I was tested for celiac disease and it came back negative so I don't know what it could be I'm hoping the consultant will suggest more tests as I really feel something is wrong, thank you for all the advice I will research more into food allergies and try and go on a special diet and see if I feel better. Thanks, Louise