Celiac & Colitis? At Hospital Now, Confused. Please Read

[WorriedWife2009]

Hello everyone.

This is my first time at the forums, so I do appologize if this post is simialr to any of the other ones. If any of you out there reading this have any simialr experiences or knowledge of this kind of thing, please do pipe in. I would really appreciate some other people's perspective on this. We are in the hospital room right now.

My husband is currently in the hospital with some sort of "mystery" ailment. He has been diagnosed with ulcerative colitis going on about 2.5 years now. He is only 28 years old. He has had issues with his collitis off and on, and for the past month it has been especially bad. On friday night I rushed him to the ER with stabbing abdominal pains. all up and down his left side.

For a while now, we have been suspicious that he may have celiac disease as well. It is so hard to tell though, because he is constantly sick with the colitis, and we have not tried a gluten free diet.

This morning the doctors did a lower gi scope on him, which revealed a mild irritation in the small intestine, and should not be causing the high pain that my husband is in. He has a high pain tolerance, and has been actually passing out from the pain waves that hit him.

His pain is mainly on the left side from his groin area to his rib cage. His stomach is swollen and tender to the touch. The entire belly area is tender and impossible to touch, but most of the pain is coming from the left side.

On Friday night they admitted him. Have been giving him pain meds since then. A system clean out on saturday pm with nuLytely, and then a scope this morning (sunday). they took some stool samples as well, and a bunch of blood work. The bloodwork has come back inconclusive. No word on the stool samples or the biopsy's they took from the scope.

His doctor does not listen to him, and has not suggested anything besides the colitis. My husband has a lot of the symptoms of ceiliac dissease as well, including stomach upset, pain, and the tingling in the extremities. He also has excessive joint pain

Are there any specific tests that I can request for my husband? I want to make sure that the doctors do not waste any more time on this, as my husband is in major pain, and this hospital room is very pricey every single day we are here. I am not as well versed in Celiac Dissease as I am with colitis, but I am pretty sure that this is more than just colitis.

Thanks in advance to anybody who has read this post, and I await any replies, info, or advice you can give me.

Thanks so much!

WorriedWife2009

[WorriedWife2009]

Also: I forgot to mention that he also had three catscans of the area after drinking the barium drink that shows the digestive track in the scan. that also came back inconclusive.

[ravenwoodglass]

They should do a celiac panel along with vitamin, mineral and iron levels if they haven't already and they also should do an endoscopy in addition to the colonoscopy. If they are still saying everything is 'inconclusive' you can also do a trial of the diet, strictly for a couple of months and see if that helps.

[Lisa]

This is the blood panel to request (demand) from your doctor:

Open Original Shared Link

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

What are they testing for? "inconclusive" for what?.

Also demand an endoscopy exam which can view the upper small intestines and six to eight samples should be take to biopsy for Celiac Disease.

[captaincrab55]

I had the same severe type of pains almost 3 years ago... My wife was scheduled for a colonoscopy and I took her appointment. All looked fine and was told to schedule another in 10 years, but the Doc ordered a c-scan. The scan came back inconclusive. The Doc suggested spasms and I mentioned that my mom had them... He prescribed a med to take to relieve the spasm and come back if the pain gets worse. The med did work. I accepted the fact that my mom had a problem and I had the same problem. Life went on for another 2-1/2 years till my Dermatologist diagnosed me with DH & celiac disease(early June of this year)...

btw, I don't think the pain could be any worse almost 3 years ago....

[AJ-nyc]

Worriedwife2009, I am so sorry to hear your husband is in pain. I am new here also, and am currently experiencing the same symptoms as your husband, specifically the stabbing pain in left abdomen, swollen stomach, upset stomach, and tingling in the extremities such as arms or feet or legs.

I am going for an endoscopy/biopsy to check for damage to the small intestine on tuesday of this coming week. (I had blood tests done to check for celiac a few days ago and am awaiting results.) My gastroenterologist told me he thought i had Chrone's disease, but I've heard that pain is in the right abdomen if it is Chrone's.

I have been forcing myself to eat gluten in preparation for tests. when i did an experimental gluten free trial for a few weeks a while back, these symptoms were relieved, specifically he stabbing pains and swollen stomach. hope this helps!

[WorriedWife2009]

Thanks everybody for the quick and informative replies.

The doctors did not tell us what they were testing for, just that they were taking stool samples and blood tests.

Endoscopy: The GI doc did do this and scoped up into the small intestine. This is where the mild inflamation was at. They took several biopsies for testing and we will get those results in a few days. I think they are testing for cancer just to be sure. tomorrow morning I will ask about doing a celiac test on those biopsies.

Thankyou for the specific names of the Celiac test panels to do. I will give the doctor the list.

It is unfortnate that his doctor does not listen to his concerns. If he does not listen tomorrow, we are demanding a different doctor.

If anyone has anymore info or advice, I am all ears!

And thanks so much to those of you that responded.

I really appreciate it.

[Ahorsesoul]

I had the same type of pain your dh had for years. My tummy would swell, be hard and painful. Sometimes I was in so much pain I broke out in a sweat and laid on the floor because I couldn't move. As a nurse I really think my intestines were telescoping or twisting.

Be aggressive in asking for tests suggested on this site. A biopsy of the small intestine would be great. And ask them to put him on a gluten free diet while in the hospital.

I was told for years I had colitis and a nervous stomach. Was on many medications for it which never really helped. Only after going gluten free did I recover.

Many doctors are not educated about celiac disease. Call your local celiac group and see who a good doctor would be to treat your husband. You can change doctors if you would like. Don't feel timid about doing this if it's what the two of you would like.

Keep us posted.

[The Fluffy Assassin]

Thanks everybody for the quick and informative replies.

The doctors did not tell us what they were testing for, just that they were taking stool samples and blood tests.

Endoscopy: The GI doc did do this and scoped up into the small intestine. This is where the mild inflamation was at. They took several biopsies for testing and we will get those results in a few days. I think they are testing for cancer just to be sure. tomorrow morning I will ask about doing a celiac test on those biopsies.

Thankyou for the specific names of the Celiac test panels to do. I will give the doctor the list.

It is unfortnate that his doctor does not listen to his concerns. If he does not listen tomorrow, we are demanding a different doctor.

If anyone has anymore info or advice, I am all ears!

And thanks so much to those of you that responded.

I really appreciate it.

Hopefully he's feeling better by now and out of the hospital, but here's a little more information. Sorry it isn't very definitive. The Mayo Clinic on causes of ulcerative colitis: Open Original Shared Link and on complications of celiac disease: Open Original Shared Link They don't say anything definitive like celiac causes colitis (or vice versa), but between the two possibilities, I'd say it's more likely that celiac causes u.c. than the other way around. As an autoimmune disorder, celiac disease can get you in all sorts of ways.

Otherwise, I echo what everyone else says(including you): fire the doctor if he won't listen to you and your husband. However, considering how much pain your husband's in, you may want to try the gluten-free diet first to see if it offers relief. Unless you need a hard and fast diagnosis for some reason, self-diagnosis might be the way to go. That said, I hope you can get the doctor to listen (or better still, that you already have).

Welcome to the board, and best of luck to you both on finding the answer.