HealingWell
Search Close Search
☰

Could it be CELIAC DISEASE and not Crohn's???

Support Forums
>
Celiac Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/29/2009 7:59 PM (GMT 0)
My son lives in a different state than I do so I don't have daily contact with him. Yesterday, he being a Crohn's patient, e-mailed me saying that I thought that that maybe he had Celiac Disease instead. Is Crohn's easily mistaken for Celiac and vice versa? He's supposedly had Crohn's for about 6 years and is going to ask his doctor about it in 2 weeks when he has his appointment. There's a lot of talk on the internet now about Celiac. He's 27 and "contracted" Crohn's in Kuwait in the Air Force. Is it possible to (God forbid) have BOTH?
Posted 5/29/2009 8:42 PM (GMT 0)
They behave in similar manners but I think that it will be one or the other, not both. If it is Celiac he will have to really modify his diet to avoid all wheat. Good luck!
Posted 5/29/2009 8:43 PM (GMT 0)
It's possible to have both (I do).  The symptoms of celiac can vary widely, but GI and malabsorption symptoms can mimic Crohn's.   However, a GI would be able to differentiate through testing.  There are different indicators for both in the blood work.  Additionally, scopes w/ biopsies can pinpoint crohn's damage (ulcers, inflammation, etc via colonoscopy) vs. celiac damage (flattened villi via endoscopy).

If your son suspects Celiac, it's important that he continues to include gluten in in his diet through testing to get an accurate diagnosis.  The "treatment" for celiac is maintaining a gluten free diet.  Once someone starts a gluten free diet, damage done by celiac begins to disappear and testing is not accurate (it can take anywhere from a few weeks to a few years to undo the damage depending on how severe the damage is).

It's probably not the answer you wanted to hear, but I hope it helps. 

Melissa

Posted 5/29/2009 10:52 PM (GMT 0)
Diane,

Not to hyjack your post,but I am in the AF and I was recently diagnosed with Crohn's.  Was your son able to saty in the military?  If not how was he seperated?  Med retired?

Thanks!!

Posted 5/30/2009 1:38 AM (GMT 0)
You could have both Celiacs and Crohn's, but there is a simple blood test for Celiacs, most good GI's will always do that test while DX to make sure they rule out all other possibilities.

:)
Posted 5/30/2009 2:34 AM (GMT 0)
As mbw1103 said, a colonoscopy with biopsies is the definitive way to diagnose both Celiac and Crohn's. Blood work can also give indications. Hopefully your son had a scope w/biopsies done 6 years ago when he was originally diagnosed?

I have a friend with both. She was first diagnosed with Celiac and the Crohn's diagnosis came a few years later. She follows a grain-free diet.

Many people with Crohn's benefit from the Specific Carbohydrate Diet which is grain free, therefore completely gluten free. If your son finds out he does indeed have both Celiac and Crohn's, the SCD may be just the answer! Personally, we've found it easy to follow. There are tons of resources available making it do-able for even the cooking challenged--like me! smilewinkgrin Just thought I'd pass that on!
Posted 5/30/2009 11:12 AM (GMT 0)
After reading this I think I have both, Have to ask my doc about this.
http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/
Posted 5/30/2009 1:56 PM (GMT 0)
Most of us crohnies have been tested for celiac disease. I am curious as well did your son stay in with crohn's disease? And if not did he have any problems getting service connected for it.
Posted 5/30/2009 2:09 PM (GMT 0)
My previous GI doctor had a thing about celiac disease. She told me that, although my biopsies and scopes showed none of the signs of celiac, one of my blood tests indicated that I had it, along with my Crohn's. She had me go on a strict gluten-free diet, but told me that I no longer needed to follow the dietary restrictions I'd been under since my Crohn's diagnosis. The results? Worsening of Crohn's symptoms; a major intestinal obstruction (that fortunately turned out to be entirely inflammation and edema, not scar tissue); and no improvement whatsoever. I had to change doctors and start taking 6-MP, which turned out to be a lifesaver for me. She based her diagnosis on a single blood test. Yes, you may have celiac--but my advice is to research it carefully and find out what your doctor is basing his/her opinion on before you buy into the diagnosis.
Posted 6/1/2009 1:00 AM (GMT 0)
I was also reading on wikipedia about connection between Microscopic colitis and Celiac Disease.
I was DX with MC about a year ago before I was DX with Crohn's.

Looking forward to hear from my doc about this :)
Posted 6/3/2009 3:14 AM (GMT 0)
Sorry to be so late on responding, this stupid computer put all the HealingWell postings into Spam!! Grrrr!!! I'm not used to computers and "so called spam".

No, my son wasn't able to stay in the A.F. Ohhh, that hurt a lot!! Very disappointing. But he now works as a civilian at Hill AF Base where he was stationed. At first, he was getting really sick so I think that had a lot to do with it. Later, he had less problems and was hired as a civilian after about a year or so of floating around from job to job...YOU SHOULD TALK TO HIM, TXMARK! IF I CAN EVER GET HIM TO POST. I'LL WORK ON THAT. You should have a lot to talk about.

OMG thank you everyone else for the GREAT info! This is the place to come for common sense answers to questions. THANK YOU!!! I'm going to forward the page to my son, Aaron.
Posted 6/3/2009 5:39 AM (GMT 0)
After years of asking my doctor to do a celiac test via endoscopy I finally just got tested last Friday. I had done the blood work for it but it came back negative. I was told by a doctor that it could be a false negative. In a couple of weeks I well get the results when I see my doc. I hope I dont have both. :( If that comes back negative I know for sure that I am gluten intolerant. I get crazy D when I eat anything with wheat in it. My new doc wanted to go in himself and see exactly what is going inside. After 8 yrs and lots of drugs nothing has worked for me. I have never been in remission and it feels like I never will.

Posted 6/8/2009 2:40 PM (GMT 0)

Hello,

I have recently been diagnosed with Celiac disease and have a family history of Crohn's and Lupus disease.  I was diagnosed with sorgens disease and IBS in 1993.

Your son could very easily have Celiac disease and not Crohn's from what I have been reading.  However, it is my understanding that Celiac disease going untreated can lead to other auto-immune diseases due to malnutrition. 

You can find information about celiac disease @ www.celiac.com

or here:  http://www.webmd.com/digestive-disorders/celiac-disease/features/gluten-intolerance-against-grain

I hope this is helpful. idea

Posted 6/15/2009 11:49 PM (GMT 0)
I was diagnosed with Crohn's Disease almost 30 years ago and now I am finding out it could have been Celiac all the time. I was wondering what the best testing is for Celiac. I just had the entire blood profile done a few months ago and everything was negative.

My doctor decided to do the stool sample test and my index was 48.5 when a 12.5 is considered high.

Then I read this isn't a reliable test...I had an endoscopy last year for acid reflux. Would they have been able to tell from that if I had Celiac. Sorry for all the questions as I am new to this. Thanks

Kim

Posted 6/16/2009 1:24 PM (GMT 0)
There is such a thing as non-Celiac gluten sensitivity... I test negative for the IgA blood antibodies to gliadin and tissue transglutaminase, but my blood anti-gliadin IgG, stool anti-gliadin IgA & stool anti-tissue transglutaminase IgA were all positive; I also carry a copy of the DQ2 Celiac gene. I also responded pretty well to a gluten-free diet, and the symptoms returned when I ate gluten again. So I have been diagnosed with non-celiac gluten sensitivity.

Kim,

I've seen you post on the Lyme forum here as well. If you have Lyme, that could very well be the cause of your GI symptoms - Lyme can mimic symptoms and some of the radiologic/endoscopy findings of Crohn's. Lyme can also do a lot of other things as well - see http://thehumansideoflyme.net/viewarticle.php?aid=62 for details.

Take care,
Posted 6/16/2009 2:02 PM (GMT 0)
Hi Razzle- I am thinking I just have gluten sensitivity too. I don't really have an GI problems...So do you have to avoid anything with wheat? My doctor wants me to stay on a gluten free diet for a month and see what happens. I don't know if that is long enough to know but will give it a try.

I had all those blood tests done and they were very negative. I guess the way for me to find out is by avoiding wheat for a while.

I was diagnosed with Crohns in 1979 but a few years later had no GI problems and have had all clean colonoscopys. In fact the last two I had the doctors said my colon was perfect so I have no idea if I ever had Crohn's in the first place. Thanks and you take care too!

Posted 6/17/2009 11:51 AM (GMT 0)
Yes, I have to avoid anything with wheat, rye, barley, or oats (or derivatives of these grains).

Since it can take 6 weeks for gluten to clear out of the gut tissues, you might want to consider extending your wheat-free trail period to at least that long (preferrably 3-6 months total, to give the gut time to heal any potential damage caused by gluten...healing can take 6-8 weeks). I initially avoided gluten for 6 months, then tried a wheat communion wafer...when symptoms came roaring back from this one tiny bite of gluten, I was convinced I had gluten sensitivity. Shortly thereafter was when I walked down the bread aisle in the grocery store and bam - the symptoms hit with a vengence again.

Good luck,
Posted 6/17/2009 12:41 PM (GMT 0)
Hello Again,

I was told by my doctors that a false negative does not rule out Celiac because in some cases the celiac disease affects the level of the antibodies they are looking for.  They look for a certain level in your blood work but if you are deficient in the levels to begin with than the levels will not show high even if you have Celiac disease.

I was also told that some people see results after 72 hours but others can take up to six months depending on how much damage has been done to the intestines.  I saw results after just a couple of days.  Within two weeks, my "IBS" symptoms were completely gone.  I wasn't diagnosed until I developed DH.  I no longer have to guess what my stomach and bowel symptoms are from any longer because any gluten and I develop a rash, sometimes just from skin contact (lotions and soaps). 

I was told to avoid wheat, rye and barley.  I have been avoiding oats for now as well and once I figure it out I thought I would try oats again as long as they are from a "certified gluten Free" facility.  So far I have had zero luck eating out at restaurants.  Since I live in a rural community.... it looks like home cooking for me indefinitely.

Posted 7/16/2009 7:08 PM (GMT 0)
YUP, my son has both Crohn's and Celiac. Tests were done, don't know which ones. He did mention a Colonoscopy. He's had several of those since having Crohn's. And he did admit to an awful diet in years past (pre-Crohn's) of Poptarts and Pepsi breakfasts.

Being both young and a guy he's not into all this medical research and obsession. That's what mom's and wives are for and since he hasn't found a wife yet, I'm his info source. I don't know anything about all these medical tests so I AM SO THANKFUL TO COME HERE and gleen from the info-harvests all over the place here! Does that make any sense??? Bottom line...thank you!

I'm taking notes and preparing an e-mail to send to him. He's kind of a "where the rubber meets the road" guy and just asks "So Mom, what can I eat and not eat?" I'm trying to make a list of that for him.
Posted 7/17/2009 12:45 PM (GMT 0)
Sorry to hear that your son has both.  Hopefully a gluten free diet will help both.  Crohn's runs in my family and I am hoping by staying on a gluten free diet I will avoid damaging my intestines any further and prevent from developing crohns. 

I have great success searching for gluten free items by using google and typing gluten free in front of the item I am looking for.  Celiac.com and amazon.com both sell gluten free items that can be easily prepared.  I have not tried any of the prepared foods to voice an opinion on how they taste.  I have used the red mill pancakes, and rolls and thought they were good.  I really enjoyed the pancakes.  I have had no luck purchasing already prepared bread at the grocery store but have found a few great recipes off the internet for making bread and rolls.  I also found a great recipe for flour called "nearly normal gluten free flour".  I used that flour with the recipe from nestle toll house morsels and the cookies came out excellent, pretty close to the normal "wheat" ones.  My husband has been on the gluten diet with me by his choice, and has been my guinea pig.  He is normally quite picky and has always been open to telling me what needs improvement with a new recipe.  My understanding is that Krogers and Safeway are taking the inititiative to offer gluten free products, I can not verify because there is no such stores in my area.  General mills has offered some betty crocker cake, brownie, and cookie mixes. I was told they are good.  Johnsonville is lableing their items now and I know that their italian sausage is gluten free.   I hope this is helpful. 

Good luck!

✚ New Topic ✚ Reply