Maybe It's Crohn's And Not Celiac?

[girlulu]

Hi, I've been posting my story and it keeps changing everytime I see a dr! So i need help. Again:)

 

The last GI dr. I saw agreed that I had Celiac however, it was more of a ruling out of everything else and not a clear scientific diagnosis. My symptoms are Extreme fatigue, sharp pain from time to time in my right, lower belly and extreme inflammation of the ileum. And if I eat Gluten...horrible digestive issues.

 

I have battled fatigue most of my life intermittently. I have been gluten-free for about a year now which has been great. I actually just went almost four months feeling perfect, fantastic..and then I overdid it with guests here and the fatigue hit....along with a new issue of asthma/bronchitis. The fatigue comes if I overdo it in life....one too many drinks (I keep it to 1 drink now when I do drink), too much travel and not enough rest, etc. And if I get glutened which is rare.

 

I will not do another endoscopy (had one 8 years ago that showed negative for Celiac but as Cycling Lady was so great to point out they did not test enough tissue samples) as I feel they wipe me out and I will not take drugs if they think it's Crohn's.

 

More recently I had a colonoscopy (beacuse I turned 50)  that showed extreme inflammation in my ileum but the biopsy showed negative for Crohn's. I had the genetic test done and I have 03 and 05 if that makes sense.

 

This week I went to a "Celiac specialist" at UCLA in Westwood since I've had fatigue now for almost a month. I thought I should have a dr. guide me through this. The dr. looked at all my test results and said "You COULD have Celiac but you don't have the right genes." and "You COULD have celiac but typically ileitis is not a symptom of the disease...Crohn's is." And that I separately and unrelated....have a severe gluten intolerance. He said the inflammation in my ileum shows a history of old inflammation which is not in line with Celiac. He said a gluten-free diet will not fix my ileum if it's Crohn's.

 

My gut still says it's Celiac. He wants to do an endoscopy and insert a pill cam to see how far spread the inflammation is...I had this done 8 years ago and it didn't show anything. I know there is a chance of bowel obstruction in that process so I don't want to do it. If I had major digestive issues maybe I would consider but I think because of my diet...overall I am getting better.

 

Anyway, here are some test results from this week...he had me do a Celiac panel even though I'm not eating gluten. The only test out of range was a low IgA. I did some googling and it seems like low IgA is common in Celiac patients. Also, I had a low IgA in September. It was 50.

 

IgA 53

Ab, IgG <20

Gialiadin Ab, IgA <20 (negative)

Transglutaminase IgA Antibody <4 (negative)

Endomesial IgA <4 (negative)

Celiac Ab group Performed

C Reactive Protein <.3 (negative)

 

Thank you for your help!!!!!!!!!!!!!!!

 

 

[cyclinglady]

Well, it seems like you have been adhering to the gluten-free diet. Were these the first celiac blood tests you took? You might have had a negative result in the past, but perhaps the doctor did not check for an IGA deficiency then.

I admit that I am stumped! Unless you must have an official diagnosis, just keep eating gluten free. Try researching the low IGA result. Perhaps that is contributing to your fatgue (I know nothing about it.....). Try following any Crohn's dietary and lifestyle advice and soldier on!

I wish you well!

[GFinDC]

Hi, My younger brother had both Crohn's and celiac disease.  So it's possible to have both conditions.  If you read some of the Crohn's forums people sometimes follow the gluten-free diet for Crohn's.   Some find it helpful, others don't.  I wouldn't rule out taking drugs for Crohn's myself.  From what I understand, sometimes people take a drug until they go into "remission" and then they stop or take a lower, maintenance dose.  There's an awful lot not known about Crohn's still.  But if drugs can prevent having to get a surgery, it seems worthwhile to take them,  IMHO.

[kareng]

  On 6/12/2015 at 5:01 PM, girlulu said:

I will not do another endoscopy (had one 8 years ago that showed negative for Celiac but as Cycling Lady was so great to point out they did not test enough tissue samples) as I feel they wipe me out and I will not take drugs if they think it's Crohn's. The risks for fixing an fistula or " hole" in your intestines is much higher.

Because major intestinal surgery in a couple of years is better?

Personally, I would want to know if I had something serious like Chrohn's. The possible risks of an endo/colonoscopy are low. Sure, there are risks for any medical procedure, but thousands are done every day with no issues.

[girlulu]

OK, Thanks for all the responses.  I will get the endoscopy. It wasn't the endoscopy that I was worried about it's the pill cam. The dr. said there's a low chance it could cause bowel obstruction. But knowledge in my case is important and this will give me more of that. Thanks again.