False Positive Celiac Results due to Crohn's

[Carolina]

Hi all. My daughter was diagnosed Crohn's in October. Her initial GI that performed the Celiac testing/colonoscopy/MRE due to bloody diarrhea flare-ups thought her Celiac results were a false-positive due to the Crohn's. After the procedures he said things looked "unremarkable" but the biopsy did end up showing diffuse villous blunting. One thing that complicates things is that Crohn's can also cause villi damage. We ended up switching GI's once she was diagnosed because I felt she would be more comfortable with a female for her long-term care and it is a part of a large Children's Hospital with all the resources that affords. Her current GI does not think it is a false-positive and we started on a gluten-free-diet along with her Crohn's medication.

I can't help but wonder a bit about the Celiac piece. My daughter is tall and has been steady on growth chart but very thin and was slowly declining on weight percentile (common for Pediatric Crohn's). She had 3 episodes of bloody diarrhea lasting a couple weeks over a 6 month period before she was diagnosed. Prior to this she had no symptoms other than her coloring seemed to be on the pale side. Is it strange that she would not have had Celiac symptoms? Is she perhaps just not sensitive to it though still a Celiac? I am glad she doesn't have obvious distress from it, but it makes things complicated to understand especially when adding the Crohn's into the mix. I met with a girlfriend that has Celiac and she seemed surprised she didn't react to it in some fashion when exposed. Keeping her Crohn's in remission and getting a better weight buffer on her is #1 priority so it is important to me to understand everything she can and cannot eat.

We are back in March for testing to check on her Crohn's and that will be the first time her Celiac test will be re-done since October. Her Doctor said she didn't want to do it sooner because it takes time for numbers to lower and didn't want me to worry unnecessarily. I would love any insight from anyone that has both Crohn's/Celiac or an opinion on why she wouldn't show signs of Celiac prior to diagnosis? I have immersed myself greatly on the Crohn's side of things but the Celiac piece still puzzles me a bit. Will anything show on the newer testing that would help clarify the false positive concern. I would think the gluten-free diet will make the numbers go down so won't tell me anything more? I'm confused...can anyone please help?

If helpful, I will include her lab results:

Antigliadin Abs, IgA  (0-19) - 6 negative

Antigliadin Abs, IgG (0-19) - 24 weak positive

t Transglutaminase tTg IgA (0-3) - over 100 positive

t Transglutaminase tTg IgG (0-5) - 8 weak positive

Endomysial Antibody, IgA (P or N) Positive

Immunoglobulin A, Qn, Serum (51-220) - 178 normal

 

Biospy results:

Duodenal Biopsies: small intestinal mucosa with diffuse villous blunting, mixed inflammatory infiltrate in lamina propria and increased intraepithelial lymphocytes. No granumlomas or dysplasia identified.

 

 

 

 

 

 

[cyclinglady]

1 hour ago, Carolina said:

Hi all. My daughter was diagnosed Crohn's in October. Her initial GI that performed the Celiac testing/colonoscopy/MRE due to bloody diarrhea flare-ups thought her Celiac results were a false-positive due to the Crohn's. After the procedures he said things looked "unremarkable" but the biopsy did end up showing diffuse villous blunting. One thing that complicates things is that Crohn's can also cause villi damage. We ended up switching GI's once she was diagnosed because I felt she would be more comfortable with a female for her long-term care and it is a part of a large Children's Hospital with all the resources that affords. Her current GI does not think it is a false-positive and we started on a gluten-free-diet along with her Crohn's medication.

I can't help but wonder a bit about the Celiac piece. My daughter is tall and has been steady on growth chart but very thin and was slowly declining on weight percentile (common for Pediatric Crohn's). She had 3 episodes of bloody diarrhea lasting a couple weeks over a 6 month period before she was diagnosed. Prior to this she had no symptoms other than her coloring seemed to be on the pale side. Is it strange that she would not have had Celiac symptoms? Is she perhaps just not sensitive to it though still a Celiac? I am glad she doesn't have obvious distress from it, but it makes things complicated to understand especially when adding the Crohn's into the mix. I met with a girlfriend that has Celiac and she seemed surprised she didn't react to it in some fashion when exposed. Keeping her Crohn's in remission and getting a better weight buffer on her is #1 priority so it is important to me to understand everything she can and cannot eat.

We are back in March for testing to check on her Crohn's and that will be the first time her Celiac test will be re-done since October. Her Doctor said she didn't want to do it sooner because it takes time for numbers to lower and didn't want me to worry unnecessarily. I would love any insight from anyone that has both Crohn's/Celiac or an opinion on why she wouldn't show signs of Celiac prior to diagnosis? I have immersed myself greatly on the Crohn's side of things but the Celiac piece still puzzles me a bit. Will anything show on the newer testing that would help clarify the false positive concern. I would think the gluten-free diet will make the numbers go down so won't tell me anything more? I'm confused...can anyone please help?

If helpful, I will include her lab results:

Antigliadin Abs, IgA  (0-19) - 6

Antigliadin Abs, IgG (0-19) - 24

t Transglutaminase tTg IgA (0-3) - over 100

t Transglutaminase tTg IgG (0-5) - 8

Endomysial Antibody, IgA (P or N) Positive

Immunoglobulin A, Qn, Serum (51-220) - 178

 

Biospy results:

Duodenal Biopsies: small intestinal mucosa with diffuse villous blunting, mixed inflammatory infiltrate in lamina propria and increased intraepithelial lymphocytes. No granumlomas or dysplasia identified.

 

 

 

 

 

 

I am sorry that your daughter has both celiac disease and Crohn’s.  Yes, Crohn’s can cause villi damage, but the celiac antibodies testing sure supports that she also has celiac disease (her results are solid and her Crohn’s would not cause such elevated numbers).   Luckily, celiac disease can be managed on a gluten free diet.  Healed on a gluten free diet.  But here is the best news.  It may help or prevent Crohn’s flares!  

Symptoms?  I had no celiac symptoms (traditional GI issues).  I was shocked.  I was fit!  I did have anemia and i also found out later that I had osteoporosis.  The old school thinking of a severely malnourished kid has been eliminated. Celiacs can be asymptomatic, fat, thin, old, have neurological issues, joint issues, the list is endless.  It is often hard to catch because it is a systemic disease (beyond the gut).  Symptoms tend to overlap with other AI issues too making it hard to diagnose based on symptoms alone.  

My niece has Crohn’s.  She did not have any “typical” Crohn’s symptoms.  She was diagnosed by pill camera, far beyond the reach of both scopes.   I just sent her a new small research study out of Scripps in San Diego.  Researchers tested IBD patients (Crohn’s and Ulcerative Colitis).  They stayed on their meds and went on an AIP ( Autoimmune Paleo) diet for six weeks or so.  Researchers heard about the diet and were skeptical (me too).  The amazing thing is that they achieved a 77% remission rate.  The reduction of inflammatory foods may be the key.  Eliminating known foods that are inflammatory like gluten, dairy, etc. seems to calm the immune system.  Now, some people have tried this diet for other AI (autoimmune) issues.  Some swear by it and for some it did not work.  There is no “one-size fits all” diet, is what I have found.  But eating good nutrionally dense foods can help heal a body and there are no side effects unless you have a specific intolerance  (like I can not eat garlic despite it having excellent healing properties).  I got to see the complete study, but it was removed.  You might be able to dig it up.    Here is the condensed version on Pub Med (governement site). 

Open Original Shared Link

I think you will see improvement on a gluten free diet.  I know that when I take a gluten hit, it triggers more than my celiac disease.  Consider the AIP in the future if meds and the gluten-free diet are not helping her Crohn’s.    This is the advice I gave my college-aged niece who just turned 21.  

Hugs to you Mom, for adocating for your daughter!  

[Carolina]

Thanks for responding, I appreciate the help. Yes, I agree there is benefit to her Crohn's with a gluten-free diet whether she is Celiac or not. One thing I have learned is that diet is an EXTREMELY sensitive topic amongst IBD sufferers and varies widely across patients. They get feisty when people suggest a gluten-free diet is the answer for all. She is doing well so far (HUGE knock on wood) but I know we are only a few months in and Pediatric Crohn's can be very aggressive and ever-changing. We seem to be in a bit of a no man's land with her Crohn's too which again adds complexities and questions. She is taking the mildest drug which is actually more for Ulcerative Colitis and it is working for her. Truth be told, I hate that she feels "broken" and part of me wishes the Celiac was wrong so it one less thing she had to worry about. That being said, we are 95% gluten-free as a family so she doesn't have to feel different with her diet, really only an issue when it comes to school and playdates, etc.

[cyclinglady]

I am glad that her current regime is working for her.  Keep your freezer full of cupcakes for her to take to parties.  Candy the teacher can keep in her classroom.  Our house is gluten-free (me and hubby).  We hosted a big sleepover on New Year’s  Eve with a bunch of teens.  No gluten.  They gobbled down the potato bar, chili, and cookies, cakes and other goodies.  No one missed gluten.  Nice thing is one my my daughter’s friend who attended was just diagnosed with celiac disease just days earlier.    It was comforting to see such support from all her friends.   Work with the other parents to keep your daughter safe.  We have a severe peanut allergy in our Girl Scout troop and we always accommodate her (but I must point out that several parents are super sharp and that not all parents get restrictive diets).  

We do know without a doubt that a gluten free diet can heal a celiac.  I would not necessarily say that eliminating gluten would benefit a Crohn’s patient.  I think it might help my niece, because she has the potential to develop celiac disease since it runs in our family.  But she is not ready to modify her diet without proof.  That is where I stand. Should I try the Autoimmune Paleo diet?  

I have celiac disease (healed based on repeat endoscopy)  I have Hashimoto’s (the gluten free diet did eliminate my nodules and enlargement of 15 years and I have not had a hypo or hyper swing in five years).  I have autoimmune hives which may be a stand alone AI or part of Hashimoto’s but it is managed on antihistamines.  I was now recently diagnosed with autoimmune thyroiditis (biopsy), so the gluten free diet is not helping that!  

While it is easy to go on the gluten free diet because I have the lab tests to prove it works for celiac disease (and possibly Hashimoto’s), it is not so easy to try an even more restrictive diet for the gastritis.  I am also a thin type 2 diabetic.  I am on a low carb diet and it works because I have the blood tests to prove it.  Again, hard to modify my diet again without easy lab tests to back up my efforts.  

I really need to psych myself up for it, but once I do, I am good about adhering to a diet.  The end result — preventing gastric cancer or avoiding one more autoimmune disorder may be well worth it.  

My niece niece is having fun and is socially active.  Her friends have supported her.  True friends never let you down.  I think your daughter will adapt.  

This is out from left field, but consider looking into a summer celiac camp.  I wish I could go!  

 

[Gemini]

It's a really good thing that you changed your GI doc because with a high positive tTg and a positive EMA, that is a slam dunk for Celiac Disease without the biopsy!    That is so basic that anyone should RUN from a doc who starts talking "false positives"!

With regards to having Crohn's and Celiac.....you never know how a gluten-free diet might help her with the Crohn's symptoms.  Eating gluten free and cleaner may really help, over time, to decrease the inflammation in her gut and colon. They are connected, after all, so anything is possible.  I have Hashi's thyroid disease too and the gluten-free diet has helped me enormously with that. It took a long time but my inflammatory markers are all getting lower and lower.  I wish your daughter the best of luck with everything!