Celiacs not crohns!?

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Niks

Niks

Joined
Nov 18, 2012
Messages
1,547
--------------------------------------------------------------------------------

More confused than ever!!!!

Jaime (my 18 year old daughter) and I have just got back home from her GI appointment. She has been diagnosed with first proctitis, then colitis, then crohns and now celiacs!!!

Does anyone know if she does have celiacs, (we really hope so as this is a much better diagnosis!) if that would cause bleeding from the colon, severe abdo pain, obstructions, vomiting (to the point where she couldn't even hold down water, constipation and diarrhea.

I really want to believe this and her GI has told her to wean off the pred. She is at the moment feeling better than she has for about 4 months!!

Before all of the diagnosis' she did try a gluten and dairy free diet as we thought there maybe some intolerence, but it didn't seem to make any difference!

Her GI has come to this conclusion with negative blood tests but postive biopsies.

I am so confused, the last time she weaned off pred she was so poorly and back in hospital for a week! Anyone else had similar experiences??

Thank you

Niks
 
Our GI was convinced she was going to find Celiac when she scoped Gracie. But, it wasn't. It was inflammation more indicative of IBD. She said she was "thrown sideways." We have since done the bloodwork again and still no Celiac. I do think she's gluten sensitive, but I kinda just think gluten is hard to digest and if you're inflammed then it is going to be harder, ya know?

I am sure the experts will weigh in here, but I sure hope it is Celiac instead of Crohn's!!
 
Are they sure it isn't both? Our GI ped really expected E to have both because a GF diet did bring a great amount of relief to E. He couldn't get a certain celiacs diagnosis though. Our pediatric GI said that they are diseases that tend to "walk together" and he treats several patients with both.

I will say, the symptoms of Crohn's and Celiac's are very similar and they are often misdiagnosed for each other. It happens frequently. I have a friend who was diagnosed with Crohn's and then they found out it was Celiacs instead.

I would much rather have Celiacs! I hope that is what you find out.
If it is Celiacs then you can't "play around" with a GF diet. You need to be extremely certain everything is 100% GF. Cornmeal and other technically GF foods are often processed on wheat equipment and the risk of cross contamination is so high. Also, many with Celiacs find they don't feel completely better until they go completely grain free. A paleo diet may be a good fit for your dd.
 
I wanted to add in that dairy is important to avoid for at least one year. Most of the time Celiac patients have so much damage to the villi that they can no longer digest milk products. That may come back with time. They told me to wait one year with E and then try something, if that failed then retry in 6 months and so on.

I know quite a bit about celiacs because E was "diagnosed" by a general ped as having that and we moved forward in life as if he had celiacs. He had great improvement, but then he would have these flares regardless of what he ate. I finally saw a pediatric GI who diagnosed him with Crohn's disease. So that is our history with Celiacs :)
 
Hi Charleigh

Yes Celiac's is a much better diagnosis!! Thanks for the info, we will look into it and be very careful with what she is eating!

He seems to want to go with just Celiac's but I am worried about the obstructions, bleeding. These don't seem to be typical of Celiac's. I guess we will soon see once she has weaned off of Pred and completely gluten free. Her bloodwork all came back negative for Celiac's. She has had more tests today though.

Momto2girls, yes now she is on high Pred is symptom free with no problems digesting anything!! I think gluten is hard to digest when inflamed. It is so confusing, let's hope he's right!!! Just so hope she doesn't become so poorly again.
 
Niks said:
Hi Charleigh

Her bloodwork all came back negative for Celiac's. She has had more tests today though.
Click to expand...


Biopsy is the gold standard for a celiac's diagnosis. They don't need the lab work to agree as the labs for celiac's are often considered very inaccurate anyway. It sounds like she definitely has celiac's disease, my concern is ~ how does he know she doesn't have both? What is his evidence of that? I would be curious to know.
 
I guess until we wean off Pred, we won't know! I really hope he's right. Although she has had the bleeding which was associated with inflamed bowel. If it comes back when she stops the Pred and Pred and Salofalk rectal foams, I guess that will be one way of telling.

The very first sign of any symptomsand I will be back on the phone to them!!
 
Niks said:
I guess until we wean off Pred, we won't know! I really hope he's right. Although she has had the bleeding which was associated with inflamed bowel. If it comes back when she stops the Pred and Pred and Salofalk rectal foams, I guess that will be one way of telling.

The very first sign of any symptoms and I will be back on the phone to them!!
Click to expand...


Well, for her sake I hope he is right! It sounds like you are keeping a good eye on her and you should know on the earlier side if it isn't working since you now know what to expect. I just read a great book called Breaking the Vicious Cycle and it is about Celiac's, Crohn's, and UC. Her info on Celiacs just made a lot of sense. She believes that you need to take a step beyond just GF in order to truly heal Celiacs. It is very interesting. You might want to check it out.
 
Although the Celiac diagnostic gold standard is the biopsy results because the damage is very distinctive and specific to celiacs.

So I sincerely doubt that the celiacs diagnosis is wrong.

The question would be whether she has Crohn's or not since the celiac's could be contributing to or causing the sx that have been labeled Crohn's.
 
Hi Patricia

That's my concern. We know the celiacs is right, but what about everything else that's been going on!

I think all we can do is wean off Pred and see what happens, although last time it really was not good!

Hopefully with the right diet and weaning off Pred, she should do better.

Thank you for the links! They are very helpful :D
 
Involvement of the large bowel and bleeding can occur with coeliacs disease but they are on the less common end of things so I would continue to push for verification that it is coeliacs alone that you are dealing with.

Good luck! I sincerely hope that it is coeliacs! :hug:

Dusty. xxx
 
My son has both Celiac and Crohn's and it is very, very, VERY confusing and frustrating trying to sort out the two! All the symptoms you listed could be due to gluten ingestion, even trace amounts from cross contamination. I never know what I'm dealing with when my son starts vomiting. The only way we've been able to work it out is by completely and totally eliminating gluten everywhere. One hundred percent gone so when his Crohn's is flaring and the GI doc asks, "Could he have had gluten?", I can confidently say no.

With the positive biopsies for Celiac, the dx is pretty solid. Like others have said, biopsies are the gold standard. With my son, they also did biopsies for the Crohn's. Did they mention anything like that to you? Has she had a colonoscopy? Or MRE?

Since your daughter is 18 and I'm assuming past puberty, it can take adults a good six months to a year before seeing improvements with symptoms. And, unfortunately, symptoms for Celiac can be all over the board. Anything from tingling fingers to constipation to headaches.

Another interesting bit, my son's lab work showed inflammation when he was dx, but three months after eating a gluten free diet, his labs were normal. He wasn't on any meds for Crohn's at the time, so the inflammation improved with diet alone.

Just some things to think about...
 
Mehita said:
Another interesting bit, my son's lab work showed inflammation when he was dx, but three months after eating a gluten free diet, his labs were normal. He wasn't on any meds for Crohn's at the time, so the inflammation improved with diet alone.

Just some things to think about...
Click to expand...


Similarly, when DS was thought to have Celiacs and we put him on a GF diet, he made great progress without meds. Then when they wanted to do a colonoscopy they wanted him back on gluten to double check for Celiacs. He went downhill really fast in the 6-8 weeks where he had to eat gluten again. So, when the diagnosis turned out to be Crohn's, we began looking at diet change.
 
Hoping that it is solely Celiac..and wishing you luck!
I had a SUPER hard time shopping for a gf diet...although we did Paleo this summer SO easily...I think it was easier to avoid replacement products (like trying to make GF bread) and choosing alternatives instead. Although I am easily overwhelmed lol!
I am no help re: celiac symptoms but hoping she is showing improvement quickly with some diet modification!!
 
izzi'smom said:
Hoping that it is solely Celiac..and wishing you luck!
I had a SUPER hard time shopping for a gf diet...although we did Paleo this summer SO easily...I think it was easier to avoid replacement products (like trying to make GF bread) and choosing alternatives instead. Although I am easily overwhelmed lol!
I am no help re: celiac symptoms but hoping she is showing improvement quickly with some diet modification!!
Click to expand...


I also find this so true (about diet modifications). We are paleo and completely grain free. When we thought DS has celiacs we were only GF. In many ways a paleo diet is easier than trying to find GF substitutes. If you avoid packaged food altogether then there is no stress over ingredients or factory cross contamination, etc.
 
Thank you all for your advise!

J has had a colonoscopy, which showed inflamation in her large bowel. She has not had an MRE. They tried a barium meal test, but it just got stuck in her stomach, two hours later, she vomited and ended up very poorly and in the emergency room!

What was left solidified in her stomach.

She has since Wednesday reduced her Pred and stopped her rectal Pred and Salofalk. She has not eaten anything at all with gluten in since Tuesday. (I do realise this is a very short period of time!!) Today she has had 10 bouts of diahhrea and bleeding!!! This is the first time for weeks! She is normally constipated but when she does go it is very watery and mucussy
 
As this study showcases, there is a high prevalence of Celiac in people with Crohn's disease. For that matter, there is a high overlap in other forms of IBD as well such as Lymphocytic Colitis (what I have). In my opinion, if someone has IBD, they should try a gluten free diet (for at least 6 months to allow proper healing of villi to see if symptoms improve) whether Celiac or gluten sensitivity is confirmed or not as it's possible to miss even with endoscopic biopsy. It's just not worth the risk and gluten free isn't that big of a deal with all the great new products out there. I think it's part of the reason paleo and SCD diets work well for many.
 
Just a word of caution for those parents of kids with Ibd ( Not Celiac)
A lot of Ibd kids are also atopic ( allergies asthma etc)
If you eliminate a major food group such as wheat ( gluten)
In an already atopic kid you run the risk of sensitizing his system.
That means the next time the child "cheats" and eats something with wheat instead of having gut symptoms the child could go into anaphylaxis which can result in death in under a few minutes.
This is not going to happen to every child but is a string possibility since they know not consuming a food group regularly thus exposing the body (immune system)to those proteins proteins allows the body to see them as foreign and something it should attack .

Not to mention truly avoiding food because it can kill you has a high price socially and emotionally for a child . Taking it out of a child's diet when it is not really necessary since all Ibd kids need an individualized plan is just plain cruel in my opinion.
 
That's so true with my kids and I.

My son and I are lactose intolerant and when we thought Grace was, so we cut out ALL dairy.
For a year or two we help tight to that BUT my mom (thanks mom:ymad:) secretly gave the kids a scoop of ice cream and the spent the night vomiting until it was all up. I was told to add a little dairy every day to build a slight tolerance and we did and it worked great. We'll never be able to drink a full glass of milk but know I can cook or bake with it, without getting a sore tummy.:ghug:
 
my little penguin said:
Just a word of caution for those parents of kids with Ibd ( Not Celiac)
A lot of Ibd kids are also atopic ( allergies asthma etc)
If you eliminate a major food group such as wheat ( gluten)
In an already atopic kid you run the risk of sensitizing his system.
That means the next time the child "cheats" and eats something with wheat instead of having gut symptoms the child could go into anaphylaxis which can result in death in under a few minutes.
This is not going to happen to every child but is a string possibility since they know not consuming a food group regularly thus exposing the body (immune system)to those proteins proteins allows the body to see them as foreign and something it should attack .

Not to mention truly avoiding food because it can kill you has a high price socially and emotionally for a child . Taking it out of a child's diet when it is not really necessary since all Ibd kids need an individualized plan is just plain cruel in my opinion.
Click to expand...


I think this would be a rare child. I have never heard of it and in all of my nutrition research I have never heard of any Scientific evidence to support it. I have traveled the world and eaten many things that I had never touched before in my life and it didn't suddenly make me sick because my body didn't recognize it. And I am anaphylactic to walnuts, so I have that tendency. Also, I loved avocados and ate them often but then suddenly I became sensitive to them without any warning. It took three times of eating them and getting the worse case of vomiting and stomach cramps imaginable to figure out that it was the avocados. The first time I just thought it was food poisoning. It was not a food that I had removed from my diet.

I agree with David. Anyone with IBD should try a GF diet for 6 months. It isn't to be cruel, it is because there is a strong link between the two. Will a GF diet work for everyone? No, but how do you know what will work unless you try?
 
I will disagree with you there is scientific evidence.
In children who outgrow an allergy if they fail to consume it on a regular basis they will become resensitized and anaphylaxis .
We were told specifically by our allergist for my son not to avoid anything that he has proven antibodies in his blood(Rast) test.
I am not talking avoiding for a few months but a year or more.
Again children are different than adults since their immune system is constantly changing.

It may be rare but so is Ibd in children below age 10.
Apparently my kid didn't get that memo.
There is a whole board dedicated to parents of kids with food allergies which is based on scientific fact.

As is tree nut allergy to eight different tree nuts is also rare but that doesn't matter when it lts your child.
Adding another food for anaphylaxis is not worth the risk.
Additionally there is no scientific evidence that removing gluten is helpful in all Ibd kids.
Some yes all no.
I was not saying not to try it but to talk with your allergist if your child has atopic tendencies.

Adults avoiding things no harm no foul - we have had DS on a diet avoiding things since birth when it was medically proven and necessary not on just because.

I think it is important to present both sides and the risks that may come into play including rare ones since we know many avoid certain drugs due to the rare possible side effects.
 
my little penguin said:
I will disagree with you there is scientific evidence.
In children who outgrow an allergy if they fail to consume it on a regular basis they will become resensitized and anaphylaxis .
We were told specifically by our allergist for my son not to avoid anything that he has proven antibodies in his blood(Rast) test.
I am not talking avoiding for a few months but a year or more.
Again children are different than adults since their immune system is constantly changing.
Click to expand...

Aha ~ I get you now. You mean in a child who had an actual allergy (not an intolerance) to a food and then outgrew it? I do agree with you there! I misread you to mean that anyone could gain an allergy by avoiding a food.
 
my little penguin said:
Btw we did have him on Gf corn oat milk nut shellfish free diet - it did nothing...
Click to expand...


GF or Grain free is definitely not a cure-all! I actually would not have necessarily sought that out for my son for Crohn's had he not been misdiagnosed with Celiacs. We went the GF and Dairy free route because of Celiacs and we saw almost a complete remission through the celiac diet. That is the only reason I knew it was a huge key for my E, but definitely not a key for every person. Crohn's is still such a mystery in so many ways!
 
Correct crohn's is a mystery.
I still go with the 5 types of Ibd theory many researchers are working on.
Yes most do not grow into an allergy but if you have allergic tendencies always good to check with your allergist .
Glad the diet is working for your son.
Has his blood work improved, fecal caloprotectin levels decreased, imaging improved or just a lack of symptoms?

Hope it continues...
 
my little penguin said:
I will disagree with you there is scientific evidence.
Click to expand...
I believe you, but could you please reference it as I can't find it. I ask because this is possibly one of those situations where we need to look at the risk versus reward. If what you describe is common, I definitely want to change my opinion. And even if it is rare, I want to be able to warn people like you did :)

Thanks!
 
I could be completely misunderstanding what MLP is saying but I do know when C first when to see the allergist about his issues and they explained the testing the doc did tell us not to remove certain food groups because this can develop into a full blown allergy. I looked around, but my skills aren't up to par with you guys and this is the description my allergist was alluding to I believe:

Do not necessarily eliminate a food that causes mild atopic dermatitis, since elimination of a food can develop into a true severe food allergy.

From this site:
http://csmosaic.org/2012/09/14/notes-on-food-allergy-testing/

This is what the allergist was saying to me as we were doing the prick testing on the skin.
 
ight percent of children who outgrow their peanut allergy have a recurrence, and this risk is higher for those who con- tinue to avoid peanut after passing a food challenge [61]. For tree nut al- lergy, approximately 9% outgrow their allergy. Fleisher and colleagues [62] recommend that patients 4 years or older with tree nut IgE levels less than or equal to 5 kua/L be considered for food challenge
Click to expand...

From :
http://www.aapdistrictii.org/blog/FoodAllergyandAnaphylaxis.pdf

More later
 
my little penguin said:
Correct crohn's is a mystery.
I still go with the 5 types of Ibd theory many researchers are working on.
Yes most do not grow into an allergy but if you have allergic tendencies always good to check with your allergist .
Glad the diet is working for your son.
Has his blood work improved, fecal caloprotectin levels decreased, imaging improved or just a lack of symptoms?

Hope it continues...
Click to expand...


He has his recheck on January 2nd and I will be very curious to see what it is like. I am not completely opposed to meds if the diet alone isn't working. I think that E might be one of the cases where food plays a huge role. I will not say that food is the big key for everyone though.
We are all so different, it is quite possible that there is no one real answer.
I do believe there are different types of IBD and I will be curious to see where the research goes on that!
 
Jaime is having to go Gluten Free because her her celiacs. For her this is no real big deal if it helps make her feel better.

Although now she has reduced her Pred and stopped the Pred foam and Salofalk enema she has started bleeding and has diarrhea back. She is bleeding even without having a BM. :-/. She has rang and left her IBD nurse a message, I don't see how this can be just celiacs which is what her GI has said.

She received an appointment with GI for May next year!!! Really?!! GRRRRRRR.
 
It is the same GI, although the nurse is fabulous and I'm sure she will get J seen soon if needed
 
He has contacted us and doing more bloods, put her back on salofalk and Pred foam! He has told us to stop reducing oral Pred. So we seem to be back to square one!
 
Citation 61
I need to find the study done by Hopkins with peanut flour DS sentization
Basically kids who out grew their peanut allergy passed an in office food challenge but refused to eat peanuts in a regular basis had a higher reoccurrence of "growing " back into there allergy. So much so that it is standard protocol at a food challenge if you pass the allergist gives a form stating the patient must carry an epi pen for a year after passing the challenge provided at least one serving per month of the offending food is consumed.
If not consumed then carry the epipen for life .

Some allergist used this as a basis as clash said if a child has an IgE positive test to a food group but not considered clinically reactive at that point to avoid potential true allergy developing they are to consume that particular food group on a regular basis .

Need to find the particular study though.
 
Background: Although peanut allergy may recur, the frequency with which this occurs is unknown.
Objective: The goals of this study were to determine the rate of peanut allergy recurrence, identify risk factors for recurrent peanut allergy, and develop specific recommendations for the treatment of patients with resolved peanut allergy.
Methods: Children who outgrew peanut allergy were evaluated with questionnaires, skin tests, and peanut-specific IgE levels. Patients were invited to undergo a double-blind, placebo- controlled food challenge (DBPCFC) unless the history of
a possible recurrence reaction was so convincing that
a challenge would be potentially dangerous.
Results: Sixty-eight patients were evaluated. Forty-seven patients continued to tolerate peanut, of whom 34 ingested concentrated peanut products at least once per month and 13 ate peanut infrequently or in limited amounts but passed
a DBPCFC. The status of 18 patients was indeterminate because they ate peanut infrequently or in limited amounts and declined to have a DBPCFC. After excluding 12 patients originally diagnosed with peanut allergy based solely on
a positive skin prick test or peanut-specific IgE level, 3 of 15 patients who consumed peanut infrequently or in limited amounts had recurrences, compared with no recurrences in the 23 patients who ate peanut frequently (P = .025). The recurrence rate was 7.9 (95% CI, 1.7% to 21.4%). Conclusion: Children who outgrow peanut allergy are at risk for recurrence, and this risk is significantly higher for patients who continue largely to avoid peanut after resolution of their allergy. On the basis of these findings, we now recommend that patients eat peanut frequently and carry epinephrine indefinitely until they have demonstrated ongoing peanut tolerance. (J Allergy Clin Immunol 2004;114:1195-201
Click to expand...

Peanut allergy: Recurrence and its management
David M. Fleischer, MD,a Mary Kay Conover-Walker, MSN, RN, CRNP,a
Lynn Christie, MS, RD, LD,b A. Wesley Burks, MD,c and Robert A. Wood, MDa


From:
http://ainotes.wikispaces.com/file/view/Peanut+allergy+Recurrence+and+its+management+-+JACI+2004.pdf


David
Here is one of the studies
So only if your child is atopic then they would typically have an allergist who they should discuss this with
 
Niks said:
Jaime is having to go Gluten Free because her her celiacs. For her this is no real big deal if it helps make her feel better.

Although now she has reduced her Pred and stopped the Pred foam and Salofalk enema she has started bleeding and has diarrhea back. She is bleeding even without having a BM. :-/. She has rang and left her IBD nurse a message, I don't see how this can be just celiacs which is what her GI has said.

She received an appointment with GI for May next year!!! Really?!! GRRRRRRR.
Click to expand...

Hi, I'm new here but saw your post so I thought I'd add my 2c.

As some background; I was diagnosed with celiac disease (or Coeliac as we say over here) 27 years ago now. I was also diagnosed with Crohn's 8 years ago and had an extended ileectomy that involved some bladder surgery too due to a fistula to my bladder. I'm free of drugs mostly, though during periodic flare ups I take a course of Pred which seem to be effective. My stepfather fought with quite severe Crohn's for 35 years or so, had some awful experiences, quite a few ops that ended in a Colostomy during the last 10 years of his fight.

Okay, after all that preamble, as others have said, it's definitely possible that she has Celiac and Crohn's. I'm guessing the Dr wants to remove the Celiac symptoms from the equation before they investigate Crohn's further as Celiac symptoms can confuse things. It's really important that you are extremely careful with even trace amounts of Gluten as some of us are so, so sensitive. So, that means be careful in the kitchen with things like bread (breadcrumbs get everywhere!) and flour as even tiny amounts of these can be damaging. Best is to use core ingredients from scratch to cook (potatoes, vegatables, meat) and not prepackaged foodstuffs until you are sure what the ingredients are. Best to consult with celiac.com too.

Also, good call on the person that mentioned dairy products. It's very common that we Celiacs are lactose intolerant and there was some research I read many moons ago which indicated exposure to dairy products slowed the recovery of the small villi by quite some time. So, remove dairy and lactose too from the diet for a while. 6 weeks - 2 months should be enough before you try to reintroduce it and see what happens. I know, it's a pain but it's worth it.

As for the risk of Anaphylaxis due to over sensitivity; I've never heard of this with gluten bearing grains. Yes, more sensitivity to an allergen is expected after removing it long term from a diet (and I experienced this) but Anaphylaxis is extremely unlikely in such an event (nuts seem to be in a different category of risk altogether though).

Good luck!
 
Last edited:
You can have anaphylaxis to any allergen that you are allergic to period.
That is why the top eight allergens are required by law to be labeled on foods in the us. This includes wheat and milk. Nuts get all the press since they are the least likely to be outgrown and have more reported cases of fatalities since parents are not there to watch there older kids like hawks like they do with milk and wheat etc....
That is not up for debate.
Whether pulling a food group in a atopic child who tests positive ( igE ) would increase the possibility of developing into a true allergy.
Was what was being discussed.
 
my little penguin said:
You can have anaphylaxis to any allergen that you are allergic to period.
That is why the top eight allergens are required by law to be labeled on foods in the us. This includes wheat and milk. Nuts get all the press since they are the least likely to be outgrown and have more reported cases of fatalities since parents are not there to watch there older kids like hawks like they do with milk and wheat etc....
That is not up for debate.
Whether pulling a food group in a atopic child who tests positive ( igE ) would increase the possibility of developing into a true allergy.
Was what was being discussed.
Click to expand...

Okay, that's fine. But as I said, never heard of it and I've yet to see any research presented that shows this is likely for gluten bearing grains.

Edit;
Okay, after a quick google one of the first links I hit was this; http://www.ncbi.nlm.nih.gov/pubmed/17365018

Given that it's more prevalent than I'd imagined then yes, I can accept that over-sensitizing due to unnecessary abstinence could lead to future risk of anaphylaxis.

Of course, this point is perhaps moot if there is a positive reaction to a GF diet. And if there isn't a benefit, I don't see why anyone would want to deliberately stop eating gluten grains.
 

Similar threads

Maya142
Surgery questions and experiences
Replies
9
Views
2K
Maya142
Maya142
H
Tests Come Back Normal, but Still Diagnosed with Crohn's. Is this normal?
Replies
16
Views
2K
Andersen007
A
F
does this seem like IBD?
Replies
33
Views
4K
my little penguin
my little penguin
A
What would you do?
Replies
22
Views
2K
Delta_hippo
D
S
Chronic Fissure and now more than one
Replies
11
Views
2K
my little penguin
my little penguin

Latest posts

Back
Top