Hello - Working Theory But No Diagnosis - Advice Appreciated!

[angus]

Hello,

 

Have been having lots of problems for a long time (20 years - always told IBS).  I am still (relatively!!) young at 38, but things have got worse recently - my intestine burst last year due to diverticulitis, so I was not longer prepared to accept IBS as a diagnosis.  I live in Holland and have had lots of blood tests, scans and endoscopies - so I am definitely being taken seriously.  Current (factual) state of play after one year of tests is:

 

- Negative anti-tissue transglutaminase antibodies

- Normal IgA

- HLA DQ8 gene, but not DQ2  

- Biopsy report says "Increased intraepithelial lymphocycytes, villi archetecture intact - insufficent argumements for celiac disease".  I need to re-check but there may also be something about crypt 

  hyperplasma in the report - but all my test records are in Dutch, and google translate is not giving me a clear answer! 

- I am also having problems with my pancreas and recently developed very mild pancreatitis - cause unknown.  Pancreatic enzymes in the lood remain normal. 

- I quite often have steathorrea and low elastase (a pancreatic enzyme secreted into the intestines), but then it is also sometimes normal

- Slight elevated TSH (6 - can't remeber units) but normal free T4

- Some (very mild) bleeding in my colon - red slime was the technical term in my records!! 

- In a previous scan (5 years ago) a 2mm cholesteral polyp was found in my gallbladder, all recent scans are normal 

- All liver, kidney, scans and bloodwork is normal

- My dad died of lymphoma - don't know which type

 

My (non factual / no diagnosis) feeling is:

- I also have a prostate problem which comes and goes

- I have lots of pain in my gallballder area

- I have always had a massive appetite - don't know if normal or not as I do lots of sport

 

The specialist's working theory is "non classic" celiac's disease, he wants me to go gluten free and then have another endoscopy in 2 months.

 

Sorry - a long post!!  I have been told so many different things by specialists I am sceptical, but I wanted to throw the above out there and see if it rings any bells!

 

I am starting to get a little desperate..

 

Best wishes,

Angus

[whitepine]

Even though your vilii are intact I would think that having intraepithelial lymphocytes would be a good indication that you do suffer from celiac disease or the possibility is still there.   The only way you can really know for sure is if you start eating gluten free and see if your symptoms improve (I found my symptoms improved in about 2 weeks but it takes up to two years to feel the full effect). Maybe discuss this with your doctor as a cause for your upper abdomen issues with your pancreas and gallbladder Open Original Shared Link .  But then again did they remove the polyp in your gallbladder? In my personal experience, regardless of being gluten free for a year and a half, I still have problems with upper abdominal pain and steatorrhea. I find taking a good digestive enzyme has lessened the symptoms but it has to be taken with every meal especially during the time that you notice you have steatorrhea. Unfortunately, alcohol can make this a lot worse so I have had to pretty much take that out of my diet completely.

I am not sure but does your prostate problem result in a lot of urge to urinate or the feeling of needing to all of the time? I was diagnosed with Interstitial  cystitis, it's common in people who suffer from IBS (but really many of us know that IBS is just something doctors say so you'll leave them alone). It's not as common with men as it is with women but it still happens. It's caused by chronic inflammation of the bladder tissue which is hard to treat. If this is an issue for you I've found that glucosamine, marshmallow root and diet changes have helped You can also get something called prelief which helps reduce the acid in foods while you are consuming them (acidic foods irritate the bladder and prelief is also good just in general for the stomach when you eat acidic foods like coffee). 
Well that's all I can really think of but you should really try the diet, it can really do wonders for people, and I would imagine if your villi are intact, you may have a better chance of recovering faster than most and less likely to suffer from malabsorption problems.

Elevated TSH could be the reason for your strong appetite because T3 and T4 are metabolism stimulating hormones. Do you also feel thirsty a lot?  The normal rage is 0.4-4.5 . Not sure if your 6 there is an indication that you had a 6 on this test.

That's all I can think of that pops out at me. Hope you feel better.



 

 

[nvsmom]

I think you probably are a celiac or possibly have non-celiac gluten intolerance (NCGI). The inflammation seems to be really impacting your other digestive organs (pancreatic and gall bladder problems are fairly common around here) even if your biopsy does not have a lot of obvious damage... I am not well versed in the biopsy results, but when you wrote this:

 

- Biopsy report says "Increased intraepithelial lymphocycytes, villi archetecture intact - insufficent argumements for celiac disease".  I need to re-check but there may also be something about crypt 

  hyperplasma in the report - but all my test records are in Dutch, and google translate is not giving me a clear answer!

 

To me that means that you have a lot of irritation and very mild damage - it sounds like your body is attacking the small intestine but it's not mounting a strong attack, or your healing rate is able to keep up to the damage (just my own interpretation). Hyperplasia (as opposed to hyperplasma) is an overgrowth of cells, and in this case it is immune cells that have moved in.

 

The crypts are the dips between the finger like projections of the villi, they tend to get deeper in celiacs and fill with immune cells.  Doctors like to rate biopsies, and I would guess that you are a Marsh 1 or 2 (I'm not medically trained). Doctors often won't diagnose celiac disease unless you hit Marsh 3... So if you keep damaging your intestine they may eventually bestow a diagnosis of celiac disease on you.   Ouch.

This has some info on it all:

Open Original Shared Link

 

The tTG Iga is only one celiac test and up to 25% of celiacs test negatively on it, it's a good idea to run more than one test (if they'll allow it). The full celiac panel is:

tTG IgA and IgG

DGP IgA and IgG

EMA IgA

AGA IgA and IgG (older tests that show gliadin sensitivity rather than intestinal damage like the first three types of tests do)

 

Many who test negative in tTG tests will be positive in the DGP tests, and some who have negative IgA based tests have positive IgG based tests. You might want to ask your doctor for further testing.

 

To me, you sound like you have celiac disease but have low enough autoantibody levels as to not be detected in blood work.  I would go gluten-free for life once all testing is done, and I would guess you'll start seeing improvements within months. 

 

Editted to add:

A tSH of 6 is high and means you have hypothyroidism. That will slow your metabolism and create intestinal issues too. I too have thyroiditis, and my free T3 and free T4 have always been in the normal range (bottom end) but I felt very poorly. For someone with a thyroid problem, your TSH should be near a 1, free T4 and free T3 should be in the 50-75% range of your lab's normal reference range, and TPO Ab should be very low.

Thyroid problems are strongly linked to celiac disease - another clue pointing towards going gluten-free.

 

Best wishes.

[angus]

Thanks for the replies and lots of good information!

 

My urinary problems comes and goes so it does feel like temporary irritation which improves after a week or so.

 

Will definitely ask the specialist about: additional antibody tests; TSH - did not realise there was a connection; and about biliary cirrhosis (but hope / assume I do not have as I have had 2 CT's an MRI and ultrasound and everything is clear).  

 

Have been doing lots of research / reading on the site.  Celiac could explain lots of things for me (but then again I could be falling into the trap of trying to link everything to celiacs.  The only other things I had / have are asthma and some very very mild balance problems - which I often thought I was imagining. My balance got much worse after my perforated intestine - I was nil by mouth for 1 week, when I started eating again I got very dizzy after eating an apple pie and then had vertigo and balance issues for a 6 of months. My vestibular systems were tested and normal - it was put down to extreme stress - which could be true as I was freaked out after the perforation.

 

Will be extremely strict with my diet and see what happens!

 

Thank you for the replies / advice again and hope you are both well.

 

Angus

[1desperateladysaved]

 

- I am also having problems with my pancreas and recently developed very mild pancreatitis - cause unknown.  Pancreatic enzymes in the lood remain normal. 

- I quite often have steathorrea and low elastase (a pancreatic enzyme secreted into the intestines), but then it is also sometimes normal

- 

 

Ding! (This rings a bell.)  My functional Medicine Nurse told me, the villi in the small intestine are supposed to tell the pancreas to fire.  If they have too much damage they are unable to do their job.  If the pancreas doesn't fire, one can't break down their food well.  The damage is reversible.  In the meanwhile, I have been taking pancreatic enzymes in order to break down my food.  It does seem to help in my case.  I hope this will be useful in helping to figure out your health struggles.

 

Get well***

 

D

[angus]

Hi all,

 

I had my endoscopy after 5 weeks of gluen challenge.

 

I was told everything looked normal (no ulcers) except I had some areas of redness...  Specialist said that that was not a material finding and that celiac results were the most important thing which I get in early November.  

 

Not feeling great (and I know it sounds strange) but am hoping it is celiac as there is a good chance that it can be managed with dedication...   I think my alternatives are crohns or chronic pancreatitis....  

 

I know I need to wait until November....  but has anyone else had this redness reported in their endoscpopy?  

 

Angus

[nvsmom]

Good luck with the results. I hope they are very clear cut for you.  

 

From what I have seen, finding redness during an endoscopy is pretty common amongst celiacs. I'm not well versed in the endoscopy though; I'm sure others will chime in.