Help please - gastro tells me to get over it?

[juliaanna1701]

Hi all - I am at my wits' end - can someone just let me know if I am on the right train of though? My problems have been going on for years now; I am only 26 and this is not a way to live in constant pain. I am just so tired.

Long story short, I have coeliac disease, gastroparesis + Eosinophilic Eosophagitis but aside from that I suffer from MULTIPLE gastrointestinal problems that really affect my quality of life; can't gain weight and struggle daily with severe cramping, gas, regurgitation of food,tiredness, ulcers and pain (especially after eating and localised to the descending colon) are a few, not to mention having a bowel obstruction requiring hospitalisation three times now. Constipation is a massive problem, along with involuntary vomiting and inability to digest some foods. My diet is limited to soft foods that are easy to digest. I still make sure I get adequate fibre and water though.

My calprotectin tests came back at >300; specialist told me this was normal as I have also had a colonoscopy + endoscopy that came back clear, apart from small polyps in my colon and inflammatory cells present in my oesophagus.

Is there a chance I can still have Crohn's disease? I have all of the other symptoms, minus the positive colonoscopy results. Specialist has said it is all in my head the symptoms cannot be that bad based of my test results and all I need to do is to eat more fibre (which only makes my problems 100x worse and I have said this to her numerous times) Apparently I just have slow transit time for bowel movements.

Please help?

 

[ronroush7]

Hi. Maybe you need a second opinion. Crohns Disease can affect different people in different ways. It is possible you have Crohns but I don't know. .

 

[Cat-a-Tonic]

Hi, I'm so sorry to hear you've been suffering and not getting the help you need from your doctor, that's terrible. To answer your question as to whether you could still have Crohn's - the scopes don't really look at the small intestine at all, aside from the very beginning and the very end of it, but there's a whole lot of small intestine that they don't see. And Crohn's can manifest anywhere in the digestive tract, so it could very well be hiding in your small intestine. Long story short, yes, you absolutely could still have Crohn's. The fact that your inflammatory markers are up and that you have ulcers and vomiting and that your weight is down, that sure sounds like it could be IBD to me (I am not a medical professional by any means though, so definitely continue pursuing medical testing). Certainly it's not something that you can or should try to just "get over". It's something that absolutely needs further investigation and proper treatment.

If that's your doctor's attitude, the first thing I'd do is to find a new doctor. They should not be dismissive of your pain & symptoms like that, that's awful! Find a doctor who takes you seriously, that's the key. Once that's accomplished, if it were me, I'd request tests to look at the small intestine. I'd ask for either imaging tests such as CTE or MRE, or a pill cam (also known as capsule endoscopy - you literally swallow a small camera the size of a pill and it takes photos all throughout your small intestine).

As for the fatigue/tiredness - have you had bloodwork done to look at your vitamin levels? With IBD, certain deficiencies are common and can cause fatigue - look into having bloodwork done to check your levels for vitamin D, vitamin B12, iron, and folate. I can tell you from experience that I had a severe iron deficiency last year and it made me horrendously fatigued, I could have slept 24/7 and still been exhausted. I got several iron infusions, and it made a world of difference. So for the fatigue at least, you may be able to get some relief reasonably easily if it is indeed due to a deficiency.

 

[ronroush7]

I was surprised the doctor said the fecal calprotectin was normal.

 

[my little penguin]

Could be lots of things and not just Crohns
Inflammatory cells in the esophagus
Eosinophilia disorders such as EoE
Trouble eating -EGiDs or gastropatesis
Poor motility (thyroid issues )
The list can go on and on
My point is don't try to stick to one dx
Try to work with a doc who wants to figure out what is wrong not one particular thing is wrong

They (many different docs) thought ds has eosinophilic Colitis when he wa scoped
Came out and said he had a normal scope and it was food intolerance
Biopsies came back for Crohns
Later trouble eating abdominal pain etc..,
Kept looking for a Crohns flare
Nope took alotlonger to figure out it was gastroparesis

Hope you find answers

 

[juliaanna1701]

Thanks everyone - I have been diagnosed with gastroparesis + Eosinophilic Eosophagitis in the past, but the digestive symptoms I am having seem to affect my gastrointestinal tract far more which is why I am concerned it may be IBD.

As a student in the public health system, I am not in a position to seek a second opinion quickly (the waiting list is so long) so I will seek the advice of my gp to see what other options are out there. From the outset my GP has said it seems like a classic case of Crohn's disease, esp when she puts me on steroids + antibiotics all the symptoms improve dramatically; when I had my colonoscopy + endoscopy, I was just finished a two month course of antibiotics; would that make a difference?

I just got unlucky with my gastroenterologist sadly; it is so hard when people tell you it is not as bad as you are making out and to stop making such a fuss. It really gets to your self esteem, along with everything else I have going on.

 

[ronroush7]

If it is Crohns, you will probably need something more than antibiotics.

 

[juliaanna1701]

Yes I know - my specialist is not willing to though. Question: does a colonoscopy + endoscopy go through the whole digestive tract or can it miss sections of the small + large bowel? I thought it did?

 

[ronroush7]

I don't think so. There are others who know better than I. I would consider looking for another specialist.

 

[Clash]

With colonoscopy and endoscopy there is a large portion of the small bowel that cannot be visualized. An MRE or pill cam can be used to visualize that area. Of course, neither of those tests offer the benefit of biopsies in the small bowel but they can show thickening(mre) or inflammation/ulcerations (pillcam).

 

[MissLeopard83]

Hi all - I am at my wits' end - can someone just let me know if I am on the right train of though? My problems have been going on for years now; I am only 26 and this is not a way to live in constant pain. I am just so tired.

Long story short, I have coeliac disease, gastroparesis + Eosinophilic Eosophagitis but aside from that I suffer from MULTIPLE gastrointestinal problems that really affect my quality of life; can't gain weight and struggle daily with severe cramping, gas, regurgitation of food,tiredness, ulcers and pain (especially after eating and localised to the descending colon) are a few, not to mention having a bowel obstruction requiring hospitalisation three times now. Constipation is a massive problem, along with involuntary vomiting and inability to digest some foods. My diet is limited to soft foods that are easy to digest. I still make sure I get adequate fibre and water though.

My calprotectin tests came back at >300; specialist told me this was normal as I have also had a colonoscopy + endoscopy that came back clear, apart from small polyps in my colon and inflammatory cells present in my oesophagus.

Is there a chance I can still have Crohn's disease? I have all of the other symptoms, minus the positive colonoscopy results. Specialist has said it is all in my head the symptoms cannot be that bad based of my test results and all I need to do is to eat more fibre (which only makes my problems 100x worse and I have said this to her numerous times) Apparently I just have slow transit time for bowel movements.

Please help?

I recommend looking into refractory Celiac disease. It's rare in that most people who have a strict gluten-free diet are symptom-free after a year. However, some people still experience symptoms due to a problem with the immune system producing too many white blood cells. As you may or may not know, Celiac disease is an autoimmune disorder and the white blood cells attack the healthy cells and make the body go into crisis-mode. If your GI doesn't have a solution, I would look into getting a consult with a rheumatologist to have more tests done in regards to your immune system to see if the WBC counts (specificially, T-cells and lymphocytes) and/or cytokines are high. Here is more information:

https://rarediseases.org/rare-diseases/refractory-celiac-disease/

http://www.mayoclinic.org/medical-p...ot-be-culprit-in-nonresponsive-celiac-disease

 

[Jabee]

Has your entire small bowel been imaged? A traditional endoscopy only allows visualization to the end of the duodenum, and colonoscopy to the end of the ileum, so there are more than a few meters of intestine they can't reach. Severe constipation which leads to a bowel obstruction isn't really an "in your head" thing. My crohn's has been located mostly in my jejunum and ileum, although when it first cropped up it was in my duodenum. Can you get any more imaging done? Refractory Celiac disease also causes anemia and other nutritional deficiencies; can your GP do any blood work?

 

[juliaanna1701]

Has your entire small bowel been imaged? A traditional endoscopy only allows visualization to the end of the duodenum, and colonoscopy to the end of the ileum, so there are more than a few meters of intestine they can't reach. Severe constipation which leads to a bowel obstruction isn't really an "in your head" thing. My crohn's has been located mostly in my jejunum and ileum, although when it first cropped up it was in my duodenum. Can you get any more imaging done? Refractory Celiac disease also causes anemia and other nutritional deficiencies; can your GP do any blood work?

Hi all - thank you so much for your comments + advice. Its good to know there are others out there who don't think I am making it all up!
I have had my bloods done by my GP, and they are all okayish - borderline anemia (which is usual for me) vit D is okay along with everything else, apart from sodium which is chronically low + urea is always high. I take supplements though on her advice so hopefully that is helping me avoid deficiencies.
My bloods always suggest I am dehydrated, despite being incredibly thirsty everyday and drinking at least 4 litres to try to stop the feelings of thirst.

I didn't realise the endoscopy + colonoscopy don't get a look at the small intestine - I was told it did (by the specialist, surprise ) I will see if my GP can see if there is anywhere I can have the pill cam done. It sounds as though that might help me find some answers.
According to the last endoscopy my coeliac disease is under control, so I don't think it is refractory coeliac disease, but will look into that more. Luckily my family are very supportive (after seeing me on numerous occasions screaming curled up in a ball on the floor in pain from my GI issues) so maybe they can help me to find another specialist. She comes highly regarded but has no empathy whatsoever.

Thank you all again for your help and if anyone has any other thoughts/opinions, please let me know - its nice to have support for once!

 

[juliaanna1701]

Hi all - sorry for the delayed reply; I have finally been able to access my endoscopy + colonoscopy reports from the Gastroenterologist after almost a year of delays. Here is what they say:



I have posted them before in the forum previously but have done a bit of research myself, and I for some reason could not see the last post I did with the results? Anyway, I'm just going back over things as my health has gotten progressively worse.

If someone could give me some advice whether I should pursue the IBD issue, or just accept that I'm looking for a result when there is none?

Kind regards

 

[Jabee]

So from what I can gather (and I’m not an MD), you show some signs of celiac disease (which is troublesome since you already know you need to be gluten-free) and a small area of inflammation in your small intestine—duodenum I think (cryptitis) and your esophagus shows signs of chronic inflammation (“a sprinkling of chronic inflammatory cells”). I’m assuming you had a regular endoscopy and not a double balloon enteroscopy which can access the lower parts of the small intestine (you normally have general anesthesia for this), so I am quite confused about why your consultant hasn’t suggested a capsule endoscopy or any other imaging tests to examine your small intestine completely. If you are following a gluten-free diet you probably shouldn’t have shortened villi in your duodenum, and crohn’s can blunt the villi. I would definitely push for imaging of your entire small intestine.

 

[juliaanna1701]

Thank you Jabee - you are right in saying that this was a normal endoscopy; I did specifically request a capsule endoscopy as I was concerned that I was having more trouble with my small intestine as opposed to my large, but my gastroenterologist said it was unnecessary after looking at these results as he states now that 'there is no sign of Crohn's or other iBD so it would be pointless'. I know I am eating a strict GF diet, as there are only ten foods I can eat (I rely on Neocate for about 50% of my calories at the moment, as my eosinophilic oesophagitis is constantly flaring despite medication).

This was my second endoscopy, and my gastro on both occasions has stated that he does not believe coeliac disease and EoE should be the cause of my ongoing pain, but has no other suggestions as to what could be causing it. He mentioned that he doesn't like to treat 'chronic' pain patients as they often overstate their levels of pain when there really isn't any evidence to back it up. He said both my small and large intestine looked fine and no need for further follow up.

Needless to say I'm at a loss as to what to do; I do not believe it is all in my head, but perhaps I am wrong. This gastro was my second as I headed your advice a year ago and sort a second opinion, as my first gastro told me that I had nothing wrong with me.

Am I looking for red flags when there are none for Crohn's? Should I just go with the standard IBS conclusion that he has given me? If I am looking for something that isn't there to explain all of my symptoms, then I'd be Okay with that - it is just not knowing why I suffer like I do is the issue.

Thank you again for your help and taking the time to read my report, I do appreciate it. I'm very shy, so I find it hard to ask for help in the first place.

 

[ronroush7]

Thank you Jabee - you are right in saying that this was a normal endoscopy; I did specifically request a capsule endoscopy as I was concerned that I was having more trouble with my small intestine as opposed to my large, but my gastroenterologist said it was unnecessary after looking at these results as he states now that 'there is no sign of Crohn's or other iBD so it would be pointless'. I know I am eating a strict GF diet, as there are only ten foods I can eat (I rely on Neocate for about 50% of my calories at the moment, as my eosinophilic oesophagitis is constantly flaring despite medication).

This was my second endoscopy, and my gastro on both occasions has stated that he does not believe coeliac disease and EoE should be the cause of my ongoing pain, but has no other suggestions as to what could be causing it. He mentioned that he doesn't like to treat 'chronic' pain patients as they often overstate their levels of pain when there really isn't any evidence to back it up. He said both my small and large intestine looked fine and no need for further follow up.

Needless to say I'm at a loss as to what to do; I do not believe it is all in my head, but perhaps I am wrong. This gastro was my second as I headed your advice a year ago and sort a second opinion, as my first gastro told me that I had nothing wrong with me.

Am I looking for red flags when there are none for Crohn's? Should I just go with the standard IBS conclusion that he has given me? If I am looking for something that isn't there to explain all of my symptoms, then I'd be Okay with that - it is just not knowing why I suffer like I do is the issue.

Thank you again for your help and taking the time to read my report, I do appreciate it. I'm very shy, so I find it hard to ask for help in the first place.

Keep on fighting. You know your body better than anyone else

 

[Jabee]

Hi Juliaanna:

Your consultant sounds distinctly unhelpful. I’m so sorry. I really think he should be paying more attention to the changes in your villi on a strict gluten free diet. I do think all GIs think celiac patients cheat on their diets; mine usually runs a test to check my gluten levels even though I’ve never eaten gluten in the 17 years since my diagnosis (I was in so much pain when he diagnosed me that I’ve never been interested in cheating). If he is assuming you regularly consume gluten then he is probably writing off your pain as a gluten side effect. Have your vitamin levels been checked? Are you anemic at all? Can your GP run blood tests looking at your inflammatory markers? I hate to recommend getting another opinion but I do think your entire small intestine should be looked at. Do you have a helpful GP?

Here in the US no doctor really wants to treat pain; they’re very nervous because opiates were really over prescribed. That leaves many patients with chronic illnesses in a bind. I’m hoping they’ll find a happy medium between the two extremes. Are you keeping a diary so you can look for patterns in when you have symptoms and note what the symptoms are? Is your consultant given you any IBS medications if that’s what he believes you have (anti-spasmodics for gut pain, like levsjn and donnatal, and linzess for constipation)? IBS can be extremely painful so the least he could do is try to treat that pain rather than fobbing you off as a chronic pain patient.

I wish I could be of more help. Perhaps you could be referred to a research hospital for another look? Someone should be checking you regularly since you still have mucosal damage from celiac disease and that does put you at risk of more serious intestinal problems.

I’m always here if you want to talk.

 

[juliaanna1701]

Thanks Jabee,

He is writing off the blunted vili as my cheating on my GF diet, despite my insistence that since I only eat ten foods, all of which are clearly GF along with elemental formula, that that cannot possibly be the cause. But he says he has patients who also state that and then they later realise they are ingesting gluten... but anyway, I know I am not so I do not want to press the matter and make him think me more of a hypochondriac than he already thinks. I have only been to see him twice.

Yes I have had bloods done and have a terrific GP - I have anaemia, and have needed B12 injections in the past. I have chronically low sodium and phosphorus. I have been prescribed prucalopride in the past (resotrans) as liziness did not work, but the prucalopride stopped working after two months and so I am back to relying on using two fleet enemas each week to have a bowel motion. I have tried high and low fibre diets but neither seem to make any difference to my constipation levels. I have also had blood in my stool.

My CRP was most recently 94; the gastro told me this is nothing to worry about as it is non-specific and can change daily.

I also take domperidone, erythromycin and metoclopramide for my gastroparesis, so I have the motility drugs down pat. I also used to take three times the recommended amount of PPI to help treat the EGID, but they did nothing to help so they were stopped. I do not take any medication that could cause these side effects at all; like I said, my GP is as frustrated as I am that no one is taking me seriously. I have had three bowel obstructions/impactions in the past, and have been admitted to the ER on five occasions with severe constipation.

I have also suffered from ascites (fluid in my abdomen ) that no one could explain. I also have had arthritis in my feet, suffer from osteoporosis with no none cause. I am 27, have a BMI of 16 and like I said am very shy and not outgoing so I do find it hard to voice my concerns, and am being told constantly that I need to be more assertive. I guess the only times I have been, I have been knocked back and told there is nothing wrong, so yes I do feel a bit defeated.

I suffer constant nausea and vomiting on occasion, despite my gastroparesis medication.

I simply do not know what to do. I have considered a third opinion, but know this specialist will simply read my biopsy and come to the same conclusions as the last. It is all in my head, and the inflammation is a) my fault and b) nothing to worry about.

Australia has a long way to go for IBD research I have found as well. Can Eosinophilic Enteritis account for these biopsy results?

 

[MissLeopard83]

Based on your symptoms and test results, it sounds like you have eosinophilic gastroenteritis.

https://www.iffgd.org/other-disorders/eosinophilic-gastroenteritis.html
https://rarediseases.org/rare-diseases/eosinophilic-gastroenteritis/

 

[Jabee]

What about getting your GP to run a blood test to check for gluten. I’m not sure which test it is; it could be to check for gluten antibodies (which I’m sure you’ve had before), but I think it there is an ELISA test which can check for actual gluten. Then your GP could show the test result to your consultant as proof you don’t cheat.

 

[juliaanna1701]

Thank you for that advice Jabee - I have been to my GP, and aside from having very low iron and sodium, my gluten antibodies were within the recommended limits (<7). I'll just have to see if my GP will be willing to give me a referral to another gastroenterologist; I'm worried she may start to think it is all in my head as well, but I don't really have another choice. Thanks everyone for your help.