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Non-IBD, non-celiac reasons for bleeding, villi blunting, in young adult?

Well, this a post I had hoped never to have to write, but I knew in my heart that it would eventually happen.

My adult son is ill. He is in his mid-twenties now. We have no diagnosis yet, but we have started on that journey again.

I say again because when he was a child he had a protein-losing enteropathy that caused bleeding, weight loss, lack of appetite, pain, cramping, nausea and fatigue and swelling in his fingers and toes (no redness, no pain—the cause was thought to be related to the protein loss). The doctor described his problem as my son having an asthma attack in the bowel—some environmental allergy he was inhaling was getting into his digestive system as well and causing the mast cells to over-react. He was put on a mast cell stabilizer for a year and he became healthy again. Yay! Lucky us.

Because of worsening GI symptoms recently, he had upper and lower scopes done with no obvious inflammation seen—biopsies are not back yet. The GI did get into the TI of the small bowel where there was some blunting of the villi noted; however, my son does not eat a lot of gluten and, as he had been tested for celiac disease several times in the past, he did not up his gluten intake before the scopes. So if he does have celiac disease, the biopsies are likely to be inconclusive anyway.

He is trying to up his gluten intake before going for celiac testing at the lab, but the GI doc told him two pieces of toast was enough to make the celiac test positive if he had it. From previous reading, I always thought that it was at least four servings of gluten-containing grains to ensure a positive test.

Anyway, the past three years he has been getting more ill. It started with bloating and nausea and generally feeling unwell. He saw a GI who tested for Celiac Disease (no scopes) and then told him to try the Low FODMAPS diet and to come back if he didn’t get better. He cut out garlic and onion, but did not do the full FODMAPS diet testing (it is really complicated). He found that if he did eat garlic and onion his symptoms definitely got worse. (He also doesn’t consume any dairy, as he is lactose-intolerant.) His symptoms did not get better, but he did not go back to see the GI because he hadn’t done the full FODMAPS testing like he was supposed to do, so he thought he shouldn’t go back until he had done the full diet.

That year he had two ER visits over a couple of days for sudden and severe RLQ abdominal pain. The US showed swelling of the bowel. No other imaging was offered. He was given meds for pain and nausea and told to head back if things got worse. He started vomiting severely and returned and they decided one of the meds was causing the vomiting. After about three days he passed very foul green stool and then was better. My opinion is that he had a partial bowel obstruction. (I am not a doc though!)

Hi lived away from home to attend university over these three years and managed OK. However other symptoms developed—mouth sores, aching joints with no redness or swelling, foggy brain, fatigue, unexplained rashes of red dots (not itchy) that lasted a few days and then went away, and lots of cavities in his teeth. (Very few as a kid.) His eyes ‘bother’ him quite a bit, and they seem to be red a lot, but he blames that on his contact lenses or too much reading or computer work.

This past March he was in the ER again with severe and prolonged vomiting. It was so severe that he noticed that he had developed a small hernia from it a few weeks later. He was not admitted, but sent home with anti-nausea meds. No follow-up or imaging was done. After a couple of days he started to get better and after a week he was back to his usual ‘sick’ self.

I tried to get him to ask for a GI referral where he was living at that time, but he just wanted to focus on completing his program.

In May he started to bleed and lost 8 pounds. (He has always been very slender, so that is a lot of weight for him.) He was going to be travelling, so he did not want to see a doctor then. When he returned from travelling he went to an urgent care centre, where they ran some lab work and told him to see his family doctor as nothing significant showed up. By now the bleeding had stopped and he was felling a bit better. He saw his new family doctor where he would now be living as he was finished university. That doctor sent in a referral through the the GI triage system. We thought he would be seen soon. Not.

While he was waiting, he gradually gained back the weight and got used to functioning while ‘sick’. He forced himself to eat, despite the nausea and bloating. He has continued to have intermittent bleeding—both speckles throughout the stool and mixed in with mucous around the stool. His brain fog and fatigue are becoming issues at work now. He says every joint in his body hurts and he has not exercised since May. (The previous summer he was training for a charity bike ride and routinely rode 50km a day.)

He finally followed up with his doctor at our insistence and he found out that he was on a waiting list for 2 ½ years! You read that correctly. He finally asked us for help, so we had him come back to see the urgent care doctor he had seen in May who then referred him for the scopes.

The GI who saw him was very thorough in his questioning and examination, but he can only treat what he sees. I think it is rare to have bleeding with just Celiac disease or Irritable Bowel disease. The GI is of course waiting for the biopsies and lab work to be done. He said that he wants my son to start on the full FODMAPS diet as soon as the celiac testing is done (after this week). If he has no answers after the results and the FODMAPS is going well then he may leave it at that for a bit. If not, then he may do some more imaging and refer him to an allergic GI, but this could take up to two years for my son to be seen. The GI has also ordered a fecal calprotectin test, but by the time my son had the scopes, he was no longer bleeding again.

If there are no certain results, as I expect, I was thinking that he should be getting some imaging of his small bowel and then if nothing shows here, then a capsule endoscopy. However, the pill cams are rarely done here. Because my son is not doing very well, I really don’t want to wait for months and months of testing. I want to be sure that we are being strategic about what tests are being done. He is getting quite depressed because he can’t do anything other than drag himself to work every day.

I have read that eosinophilic colitis can cause some blunting of the villi and bleeding and may be related to food allergies. Also, whatever condition he had as a kid (IMHO it was mastocytic enterocolitis), may now be his current condition if it is seen on the biopsies, and it could also explain his symptoms. But I am wondering if there are any other conditions that may cause bleeding and his other symptoms without there being obvious inflammation. Thoughts anyone?
 

my little penguin

Moderator
Staff member
Wow great big hugs
Spondyloarthritis can cause painful “joints” without redness or swelling
Ds has this - his tendons are inflamed so the joints hurt but not swollen
Spondyloarthritis is commonly associated woth ibd
Also spondyloarthritis can cause sub clinical inflammation in the gut
Inflammation but not quite ibd
https://www.spondylitis.org/Types-of-Spondylitis

Allergic colitis is typically seen in infants due to milk allergy

Fecal should still show inflammation since it takes months for the numbers to go down (at least we were told that )

FWIW Ds first scope looked pristine but biopsies showed the chronic inflammation

MRE might be your other option

Sorry things are taking so long wow
 
Whipple's disease? Intestinal lymphangiectasia (I mention this because it also causes protein loss, though maybe that's not a concern for your son anymore)? Dancemom is on here; her daughter has IL. I'm actually not sure if these cause bleeding, though I believe both may cause blunt villi. Someone will correct me if I'm wrong. :)
 
His symptoms do sound a lot like Intestinal Lymphangiectasia. My daughter has frequent stomach pain, occasional bloody stools, diarrhea, swelling (usually in the face), erythema nodosum, random vomiting, and most recently random fevers. Her IL was diagnosed with biopsies plus an elevated alpha1 antitrypsin (stool test) and low IgG (blood test). We tried a low fat diet which is the standard treatment but she became severely malnourished. She's now on Cellcept and Hizentra and doing fairly well.
 
Hi. Thanks so much for your responses. It helps us to think a bit outside the box. We are still waiting for most of the test results. Of the 'many' biopsies the GI took, he said there was only one that showed very mild superficial colitis. He said this could have been caused by the scope prep and does not really help us get to a diagnosis. I will post again once all the test results are in.
 
Hi,
Well we have not made much progress. The fecal calprotectin was normal. The doc asked my son to do the full Low FODMAPS elimination diet, which showed that perhaps a couple of types of sugar were giving him grief, and perhaps gluten--but did not reduce his symptoms at all. It has actually caused him more problems because his symptoms are still so severe that he has not been able to food test to add foods back. He was started on a three-month trial of Mezavant for 'colitis'--but this has not helped either.

He was not been able to gain any weight, despite increasing his intake while still on Low FODMAPS. He has had 3 weeks of flaring out of the last 6 weeks with diarrhea with bleeding, fatigue, nausea, bloating, brain fog, some night sweats, no fever, and intermintent joint aches.

Last visit with the GI resulted only in the medication being given. The doc did not want to do any small intestine imaging. His next visit is in two weeks. I am encouraging my son to insist on SI imaging as obviously he is not absorbing what he is eating. Anything else we should be advocating for?

Also what is your opinion on the best IBD centre in the US for young adults. We are in Canada and I am thinking of trying for a week-long diagnostic visit in a well-recognized US centre. Thanks in advance for your help.
 

my little penguin

Moderator
Staff member
One of the tops for ADULTS (not kids ) would be Mayo Clinic in Minnesota
They do team and week long visits to figure things out
 
If there are no certain results, as I expect, I was thinking that he should be getting some imaging of his small bowel and then if nothing shows here, then a capsule endoscopy. However, the pill cams are rarely done here.
Was the capsule camera endoscopy ever done? I suffered for years from pain, bleeding, and eventually severe anemia. Labs and upper and lower scopes were all normal, but my GI was finally able to make a diagnosis of CD when the capsule camera showed ulcers in the small bowel.
 
Hi Scipio, no he has had no capsule endoscopy and no small bowel imaging. The doctor said he was "worried about the amount of radiation for small intestine imaging" so he would not order any testing for it. And it is very hard to get pill cams here--that is why I am looking elsewhere to make sure that we have done everything we can to help him.

Thanks for the suggestion though--this is what I am thinking as well.
 

Maya142

Moderator
Staff member
What about an MRE? That's no radiation and would give you info on his small bowel. It would show both inflammation as well as chronic changes (narrowing, strictures) if there are any.
I know MREs are expensive, but here (in the US), we had an easier time getting insurance to cover an MRE than a pillcam. Not sure what the system is like in Canada. We have a few Canadian parents on here - I'll tag Pilgrim and Tesscorm.
 
Hi everyone. Thanks for your replies. I recently updated a thread about seeking care elsewhere for my son--this is that thread: https://crohnsforum.com/threads/best-ibd-centre-in-us-your-recommendation-for-young-adults.85048/#post-102206
I will consider all of the above advice when we make an appnt for a US consultation in October if that becomes necessary. I will keep you posted as we continue this unpleasant journey. It is really hard to see him like this as I personally am the healthiest that I have been in years despite continuing to have some malabsorption problems myself ( Vitamin A and D and possibly others). I keep trying to tell him that we cannot predict the future and that despite him feeling that his life will now always be this way, it is likely that it will improve eventually--we just do not know when or how yet. And the smart folks on this forum will continue to help us. :)
 

Lady Organic

Moderator
Staff member
Im so sorry for your son Happy. If I remember correct, you used to take enteral liquid diets right? Would your son be willing to try a course to see if his health improuves with that? -Just an idea!
 
Hi Lady organic, Yes, I did the full exclusive enteral nutrition followed by a full food testing diet and after a long period of time achieved remission. I have suggested this option to my son, or even to add liquid nutrition as a supplement to his diet. Unfortunately he certainly remembers me drinking the formula and the smell of it is a very bad memory for him that he cannot seem to get past. I have told him about other formulas and other ways to take it rather than drinking it, but at this time he is adamant that he is not going to try that option. It is too bad because I think it would really help his overall nutrition and that in itself would help him feel better.

I think part of it is that he is not currently as acutely ill as I was when I was taking the formula, so I think to him, if he starts needing formula then somehow that will mean that he is even sicker than he is and psychologically I don't think he can get past that. And I can certainly understand him feeling like that.

I also think it was really hard for him when I was so ill. To him it must have seemed as though I was dying and I don't think that he wants to have anything to do with anything that reminds him of that time.

All that being said, I think if he gets worse, he would try the formula just to see if it would help him keep going to work.

Thanks for reaching out Lady Organic. I hope you are doing well.
 
I have just been over reading some the articles posted on this thread: https://crohnsforum.com/threads/heard-from-doc-today.35732/page-10 and I followed some of the links, including getting to this article that summarizes the research on several of the diets used to treat IBD: https://www.ecco-ibd.eu/publications/ecco-news/committee-news/item/update-on-elimination-diets.html

And I am just thinking out loud here, but I think that in addition to inflammation that we have not been able to find on clinical tests so far for (and not everything that should be done has been done yet), my son did have some IBS. He cannot tolerate garlic, onion and certain sugars. However, he flared right around the time he went on the full elimination phase of the Low FODMAPS diet. Because he was flaring, this diet did not seem to help and then he was too ill to get off that phase of the diet because the premise is that you get better on the elimination phase and then when you are reintroducing foods, you go by worsening symptoms to decide which foods you must still eliminate while reintroducing others.

Unfortunately, he has not been able to get back to adding foods because of his base level of symptoms--it is hard to tell if it is a food or just his regular symptoms. So I believe that, as in the article mentioned above, the Low FODMAPS diet has actually made his biome worse as his symptoms of bloating, brain fog and fatigue are worse, not better, because he likely has inflammation as well.

So for others out there experimenting with diet--do be careful how long you stay on something, especially if you do not think it is working. For me formula followed by a full elimination diet eventually did put me into remission. I still had to tweak my diet a lot afterward--cross contamination with gluten was a big trigger for me and I certainly got a lot better after figuring this out. My diet now looks a lot like the anti-inflammatory diet or the Crohn's Disease Exclusion Diet mentioned in the article and it keeps me well. :)
 
Hey there!

I can not explain it but after a month of high dose steroids and about 30 days in the hospital the GI suggested the CDED and my daughter, O cut over to it strictly. In the 4-5 days she has been on the diet her frequency has cut way down and her BM's are more solid. She doesn't LOVE the diet and since her GI only suggested we "lean" toward the diet, we told her she could have a little cheat today. She flat out refuses because while she hates the diet she feels so much better on it and doesn't want to risk anything.

Not a scientific trial by any stretch of the imagination. Her improvement could simply be her improved nutritional status (from TPN and home overnight lipids and hydration etc), could be Entyvio finally kicking in or even the steroids finally working. But for her and for now she will be staying on CDED. She has an appointment with her GI on Friday and we will be asking for a referral to the registered dietician for more guidance on diet.
 
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