Crazy turn of events for daughter!

[Carolina]

Hi all. I have posted here before about my 11yo being diagnosed with IBD and Celiac this past October. She has been a bit of an unusual case even within the typical variance of any IBD/Celiac patient. I am a voracious researcher and quite stubborn so I sought out a 3rd opinion recently because her first 2 GI's were never in agreement and always left me uneasy. I am more active on IBD forum, but curious to hear from the Celiac side of things as to how common a colitis to her degree is. Pediatric IBD tends to be much more aggressive than adult on-set in case that is new information to anyone.

Summary I wrote for the Pediatric IBD folks...

Last May she had 2-3 weeks of diarrhea, by the time we could get into GI she was better so we canceled. Fast forward to August she had another week of diarrhea (mild). I was concerned given previous episode, but thought maybe it was nerves of starting school as she is an anxious child. Then October she has another week of diarrhea so we then head into GI. Prior to flares, only symptoms I can think of is paleness and dark eye circles for 2-3 years prior. We were treating with sublingual allergy drops because she has tons of environmental allergies year-round so we attributed her palor to that. She has been consistent on height curve since birth, very slow decline on weight over last few years.

First GI does Celiac blood panel. Comes back positive a few days before scheduled colonoscopy/endoscopy. Thinking we are going in confirming a Celiac diagnosis and he comes out saying it is IBD and he thinks the Celiac blood panel was a false positive. This never made sense to me, her Celiac numbers were high and she had villi atrophy. He says it is Crohn's. I push back and say I want to at least try the gluten-free diet with meds and am up front that we will seek a 2nd option. He wanted steroid/Lialda/partial enteral nutrition. I pushed back on steroid as she was no longer flaring and new on the journey of understanding the importance of getting the inflammation in check quickly. I agree to Lialda and shakes and he appeases me with gluten-free diet. Meanwhile he is clear we will have to jump ship quickly if anything pops up in small bowel with MRE.

Second GI I call daily and get in quickly prior to MRE. She says 100% she has Celiac with numbers as high as hers were. She says it is Indeterminate Colits (patchy like Crohn's and UC like inflammation). She says she suspects the MRE will be clear and that ends up being the case a couple weeks later.

At diagnosis her CRP was normal, slightly elevated Sed-Rate and fecal of 178. 2 months out on Lialda and gluten-free diet her fecal was 68 (normal). 5 months out her fecal is 19! Meanwhile her coloring is normal, she's gained 9lbs and is back on the weigh percentile sh was at, and grown 3". In 5 months she has grown and gained that much. She went from 75% in height to almost 80% so higher than ever too.

Things have obviously been going well. The Celiac has been the bigger life change since the IBD has been a non-issue since diagnosis (she was out of flare prior to scopes). It bothered me the GI's didn't agree and for peace of mind I had to torture myself and seek out a 3rd opinion. We went to the Chief of Peds at another hospital and this is where things went crazy...

He said flat out the 1st was wrong, she is textbook Celiac in terms of her endoscopy results. I said Crohn's can cause villi atrophy too. He said yes, but her bloodwork is also clear. He then went on to say what you have said that there is no way she has Crohn's and is doing this well on Mesalamine. He said her 2nd GI was closer calling it Indeterminate Colitis and Celiac. The difference in his opinion is that the root cause of the colon inflammation is the Celiac and not IBD. He recommended weaning to 1 Lialda for 1 month. We will do fecal then. Then we will do another fecal 1 month out after discontinuing Lialda. If the inflammation returns then we know it is Indeterminate Colitis, but he strongly suspects it is not. He made a comment that reminded me of Occam's Razor, basically the simplest explanation is often correct and all her symptoms can be explained from the Celiac only.

I am trying not to get my hopes up, but it would be incredibly irresponsible to suggest this if he didn't feel strongly. I was hoping to come out of that visit with 1 less diagnosis but I didn't dream it could be the IBD. We shall see, for once I wish I could fast forward time to see how this plays out.

[Carolina]

Cycling lady, I hope you see this! It's been emotional, parents of IBDers would see trying this as very controversial. You do not change treatment when your child is doing well and not flaring. I get this 100% and I would never knowingly under treat my daughter, but nothing adds up perfectly and I feel we can test this in as safe as a way as possible. If there is any chance he is correct it would also be wrong to be giving her meds she doesn't need.

[cyclinglady]

Wow!  I think your persistence and research has paid off!  Nothing like following a mother’s instincts.  Similar things occurred with my niece who actually does have Crohn’s (celiac disease firmly ruled out at this time), which was only discovered with a pill camera by her fourth GI (first three were PED GIs and she literally aged out.  Yes, it took years to get that diagnosis ?).  (I am just repeating this for future readers — not eveyone presents with classic symptoms).  

The Lialda probably did help her celiac disease. Anything to reduce inflammation can help, I would imagine (I am not a doctor).  But if it is truly celiac disease, the gluten-free diet (unless you are dealing with refractory celiac disease) is the treatment. Have those numbers (gliadin antibodies) come down (I know you said she has gained weight and improved in other areas)?  

Getting off medications would be the goal for ANY person.  You have to weigh the long term side effects vs. the benefits.  Most often, we know that the medications can help those with IBD (Ulcerative Colitis and Crohn’s).  

It sounds like the 3rd GI is on the right path.  If so, I am happy for your daughter and you!  I also understand how other IBD parents feel too.  Their kids may not be as fortunate as your daughter.  

This is a bit off topic from your personal discussion.....

Let’s say that even if she did not have celiac disease, following a gluten free diet (or the AIP diet which is more restrictive) could be beneficial.  That react small study out of Scripps showed a 70% remission rate with IBD patients (though all but one stayed on their IBD meds).  Those results are amazing and can show just how powerful a diet can contribute to good health. 

 

 

 

[Carolina]

Her 5 month follow-up on Celiac panel was that all weak positives were negative. Her ttg was over 100 (doesn't go over that) and was down to 33. Obviously we don't know where she started with that one whether it was thousands or 101. Her endomysial antibody IgA was still showing positive. So, definite improvement but still not normalized. 

In the IBD world she would be considered EXTREMELY lucky to be doing so well on mesalamine which is relatively benign and the only med that is in the line-up of treatment. I know this. I have read about microscopic colitis, but haven't seen much about more substantial colon inflammation presenting more like UC being misdiagnosed Celiac. I wish the pathology reports were more consistent, it is hard to identify all the terminology to differentiate.

The Lialda definitely got the colon inflammation under control, now the question is can it be maintained with gluten-free diet only. Adding in I know she needs the diet for the sake of being a Celiac, just commenting about whether we have another disease on top or not causing the colon issues.

[cyclinglady]

It sounds like you are both heading in the right direction.  I am so happy and relieved for you both!  ?

When I was diagnosed with Chronic Autoimmune Gastritis a few months ago, my GI just recommended just continuing with the gluten-free diet.  We have had some serious conversations in the past (Autoimmune runs so strong in my family) about my desire to avoid medications until my quality of life is impacted.  So far, so good.  My gastritis has improved based on fewer symptoms.  My goal is to try to prevent more AI issues from developing.  I only wish that my celiac disease was caught much sooner.  I think I may have avoided the gastritis and thyroiditis, but that is just my non-medical theory.  

[Ennis-TX]

With UC you have a few other additional common triggers and some like me have the more rare triggers. Gluten Free, Diary Free, Soy Free are the big ones, easy on spices, and for me the odd ball was that mine flared to glucose/fructose with Diarrhea and blood in the stool.

I found higher potassium helped with D, I started making baked good with coconut flour to add bulk, and eating more leafy greens and adding in some other stuff.

Your on the right track with the gluten free diet, for both a food diary and finding other flare triggers helps more (probably already doing this right). To help with my UC I take Aloe Vera inner fillet, Natures way Marshmallow Root and Slipper Elm. I personally dump them into a bowl work into a tea paste and eat it (hate pills). Might also look into the ketogenic diet and benefits to inflammation, I think the ketologist had some studies on it.
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Wish you luck and hope she does not have Colitis and it is just irritated for now from the Celiac induced D.

[pupppy]

On 6/1/2018 at 8:30 AM, Carolina said:

Hi all. I have posted here before about my 11yo being diagnosed with IBD and Celiac this past October. She has been a bit of an unusual case even within the typical variance of any IBD/Celiac patient. I am a voracious researcher and quite stubborn so I sought out a 3rd opinion recently because her first 2 GI's were never in agreement and always left me uneasy. I am more active on IBD forum, but curious to hear from the Celiac side of things as to how common a colitis to her degree is. Pediatric IBD tends to be much more aggressive than adult on-set in case that is new information to anyone.

Summary I wrote for the Pediatric IBD folks...

Last May she had 2-3 weeks of diarrhea, by the time we could get into GI she was better so we canceled. Fast forward to August she had another week of diarrhea (mild). I was concerned given previous episode, but thought maybe it was nerves of starting school as she is an anxious child. Then October she has another week of diarrhea so we then head into GI. Prior to flares, only symptoms I can think of is paleness and dark eye circles for 2-3 years prior. We were treating with sublingual allergy drops because she has tons of environmental allergies year-round so we attributed her palor to that. She has been consistent on height curve since birth, very slow decline on weight over last few years.

First GI does Celiac blood panel. Comes back positive a few days before scheduled colonoscopy/endoscopy. Thinking we are going in confirming a Celiac diagnosis and he comes out saying it is IBD and he thinks the Celiac blood panel was a false positive. This never made sense to me, her Celiac numbers were high and she had villi atrophy. He says it is Crohn's. I push back and say I want to at least try the gluten-free diet with meds and am up front that we will seek a 2nd option. He wanted steroid/Lialda/partial enteral nutrition. I pushed back on steroid as she was no longer flaring and new on the journey of understanding the importance of getting the inflammation in check quickly. I agree to Lialda and shakes and he appeases me with gluten-free diet. Meanwhile he is clear we will have to jump ship quickly if anything pops up in small bowel with MRE.

Second GI I call daily and get in quickly prior to MRE. She says 100% she has Celiac with numbers as high as hers were. She says it is Indeterminate Colits (patchy like Crohn's and UC like inflammation). She says she suspects the MRE will be clear and that ends up being the case a couple weeks later.

At diagnosis her CRP was normal, slightly elevated Sed-Rate and fecal of 178. 2 months out on Lialda and gluten-free diet her fecal was 68 (normal). 5 months out her fecal is 19! Meanwhile her coloring is normal, she's gained 9lbs and is back on the weigh percentile sh was at, and grown 3". In 5 months she has grown and gained that much. She went from 75% in height to almost 80% so higher than ever too.

Things have obviously been going well. The Celiac has been the bigger life change since the IBD has been a non-issue since diagnosis (she was out of flare prior to scopes). It bothered me the GI's didn't agree and for peace of mind I had to torture myself and seek out a 3rd opinion. We went to the Chief of Peds at another hospital and this is where things went crazy...

He said flat out the 1st was wrong, she is textbook Celiac in terms of her endoscopy results. I said Crohn's can cause villi atrophy too. He said yes, but her bloodwork is also clear. He then went on to say what you have said that there is no way she has Crohn's and is doing this well on Mesalamine. He said her 2nd GI was closer calling it Indeterminate Colitis and Celiac. The difference in his opinion is that the root cause of the colon inflammation is the Celiac and not IBD. He recommended weaning to 1 Lialda for 1 month. We will do fecal then. Then we will do another fecal 1 month out after discontinuing Lialda. If the inflammation returns then we know it is Indeterminate Colitis, but he strongly suspects it is not. He made a comment that reminded me of Occam's Razor, basically the simplest explanation is often correct and all her symptoms can be explained from the Celiac only.

I am trying not to get my hopes up, but it would be incredibly irresponsible to suggest this if he didn't feel strongly. I was hoping to come out of that visit with 1 less diagnosis but I didn't dream it could be the IBD. We shall see, for once I wish I could fast forward time to see how this plays out.

Any update on your daughter? Did she end up having celiac, or was it confirmed to be IBD? I've never heard of celiac causing inflammation in the colon.

[Carolina]

On 8/5/2018 at 1:04 AM, pupppy said:

Any update on your daughter? Did she end up having celiac, or was it confirmed to be IBD? I've never heard of celiac causing inflammation in the colon.

She’s doing well, huge knock on wood, feeling superstitious even typing that. We’ve been doing monthly fecal calprotectin tests to monitor intestinal inflammation. She had a high result in August when constipated, but her next was very low so I’m very cautiously optimistic. I’m still not ready to take IBD off the table, but every month that goes by without a flare is a great sign. We are coming up on our 1 year of diagnosis so eager to do Celiac panel and see where things are at. She went to half dose last May and off meds since June, so thankful she hasn’t flared.

[Carolina]

On 8/5/2018 at 1:04 AM, pupppy said:

Any update on your daughter? Did she end up having celiac, or was it confirmed to be IBD? I've never heard of celiac causing inflammation in the colon.

I realized I didn't really answer your question. Yes, she for sure has Celiac. We just weren't sure if she has IBD also. Celiac can cause colon inflammation if it presents with GI issues. The test they use for IBD to check stool for intestinal inflammation does have higher normals for Celiac patients. The results are not super high like in IBD, but higher than normal. It definitely presents there and has effects. Not all Celiacs have this issue, but untreated Celiac and Celiac that is not yet healed can. There are also lots of people that have microscopic colitis, lymphocytic colitis and IBD with Celiac unfortunately.