Crohn's and Celiac

[Sarahnarizona]

Hello,
I have been reading threads for a few days and thought I would introduce myself. I was diagnosed with Crohn’s and Celiac Disease at the same time, January of 2013. I was diagnosed with IBS about 7years ago and a bum gallbladder. I had the removed and dealt with the IBS for several years. Not to longer after a long hospital stay (brain surgery not related to my belly issues) my symptoms went from moderate IBS to crazy. Lots of diarrhea, nausea, and pain. I had blood work and an EEG and a colonoscopy.
I am currently being treated with budesonide and lialda and a gluten free diet. The budesonide works at 9mg but not at 6mg. I have tried and failed several times to get to 6mg. My GI has suggested remicade, humira, and cimzia. I have a lot of research to do.

So besides my bum gut a bit more about me. I am a Clinical Laboratory Scientist. I have been working in a medical lab for the 7 years and love it! I am currently working in a blood bank in a fast growing hospital in Phoenix Az. I am working on a new degree in advanced patient care. I have a wonderfully supportive boyfriend, Doug, who has been wonderful though all of my medical ups and downs. We also have a Great Pyrenees Odin. He is 130 pounds and wants to be a lap dog!!!

So here is a question…Anyone else diagnosed with Crohn’s and Celiac both?

 

[Jmrogers4]

Welcome Sarahnarizona,
I know there are others that are both celiac and crohn's and many follow a gluten free diet as it helps their Crohn's symptoms as well.
Love Great Pyrenees they are just giant lap dogs we had friends who had one, he was the sweetest, most lovable dog in the world. Just a gentle giant.
For many any of the biologics you mentioned have been a miracle drug and allowed them to resume their life free of symptoms. Hope you find what works for you and are on the road to remission soon

 

[ccec213]

Hey Sarah!

I'm not diagnosed Celiac, but as Jmrogers4 said, tons of us avoid gluten. I've heard theories that something like 70% of IBD patients also can't tolerate wheat, even if we "test" negative for Celiac. The criteria for diagnosing celiac is fairly narrow, and "intolerance" is a beautiful rainbow of degrees of severity.

If you're not familiar with the concept of "leaky gut", google it--it's a theory not officially approved by western medicine, but largely accepted by every doctor/naturopath/healer I've ever had. In short, you may find that once your overall inflammation subsides, the intensity of your gluten intolerance lessens, too. Fingers crossed for you!

 

[Sarahnarizona]

Thanks Jmrogers4! remission is the goal!

ccec213 I have read a bit about leaky gut, I followed the bunny tail on the internet one night when I started to research natural natural anti-inflammatory options. I have been having this awful pain in my left hip. Every diagnostic test comes back negative. Nsaid's do a number to my belly and I can directly contribute the worsening of my flair to them. What I read was interesting. I have been interested, and following, a fairly clean diet for the last several years anyway. I was not so much worried about gluten or wheat or anything when I started but more interested in what was in my food. I had started to notice my IBS worsening and switching my diet really helped. After the Celiac diagnosis I was already starting to prepare for that sort of lifestyle anyway. Going gluten free was not easy. I still pout about it from time to time! LOL

I am a fan of both Eastern and Western medicine and am convinced technology mixed with real knowledge can produce great outcomes.

 

[Nursemel]

Hi Sarahnarizona!
I have coeliac disease and I'm currently under investigation for ibd! Uc or . I
Awaiting a colonoscopy at present to give me a diagnosis. How are your symptoms? Iv been gf for 3 years now but I'm having the worst abdo pain ever at the minute and lots of pain after eating

 

[Nursemel]

Uc or Crohn's that should say sorry!

 

[Sarahnarizona]

Hello Nursemel!
Thanks for responding. Here is an interesting turn in my medical saga! LOL I was asked by my GI to repeat my celiac serum test (the one that gives you the TTG antibodies etc.) He is worried that my symptoms are that of celiac and not of the Crohn’s. I honestly can’t tell the symptoms apart some times. Do you have this issue? Have you had your celiac TTG and other antibodies levels tested again? How long until your colonoscopy? Please keep me informed. It’s nice to chat with a fellow celiac! I have my fingers crossed for you!

 

[Nursemel]

Well I was diagnosed as coeliac through endiscopy(it showed partial villous atrophy) which apparently is a definate coeliac result. Iv been on the diet 3 years and these symptoms I'm having now are near enough the same yes!:/ apart from mucous in my stool iv never had that. It keeps getting blamed on coeliac yet I am strict gluten free! My tummy bloats, pain ect when I eat anything at the moment! Let me know how you get on also it would be interesting to know I'm awaiting my app for colonoscopy. I just don't know whatnot is that's bothering me! Do u have mucous ect pain even when following gf?
Mel xxx

 

[Nursemel]

Iv never been asked to repeat my levels no?

 

[Sarahnarizona]

I do have a considerable amount of pain and I am following the diet. I too received my diagnose of Celiac the same way you did but my TTG antibodies were also VERY high. I guess the Dr’s thinking is that if the TTG antibodies are still high that my being “glutenated”, for the lack of a better term, more than I thought. I also have the dermatitis herpetiformis rash that starts under my left breast and runs a short ways down my upper torso. The rash is SUCKY!!!!! I hate it. Thank god no one can see it.
As far as my stool goes I have in the past had lots of mucus and foam. Those things the Dr. relates directly to the Crohn’s. I don’t currently have either of those symptoms. I am very hesitant to start the biological for the Crohn’s if the celiac is the problem. This is what I found on the website labtestonline.org. I think the GI is on the right track.
• Tissue transglutaminase antibody (tTG), IgA class is the primary test ordered to screen for celiac disease. If the anti-tTG, IgA or IgG test is positive, then the test can also be used to monitor a person with celiac disease and to help evaluate the effectiveness of treatment; antibody levels should fall when gluten is removed from the diet.
I forget how spoiled us with insurance in the United States are. I don’t have applications for procedures and I work for the largest health system in my area. My medical care is easy and cheap. But the whole system is broken over here and we are already starting to feel the effects of the up and coming changes.

 

[Nursemel]

Thanks that's really useful information. I constantly have mucous but no phone and my stools are not always loose they are sometimes but more often they are soft. I guess I just wait and see what the colonoscopy says. I am told coeliac & Crohn's together are not uncommon and that autoimmune diseases often run alongside each other so maybe you and I have both. I am contemplating maybe that I have ibs but can't believe it could cause this pain. Maybe I'm wrong. Let me know how your testing goes. I hope you find some answers. I too am spoiled here in the uk with the nhs system, however things ate very very slow......7 weeks and I'm still awaiting colonoscopy!!!.....
Spk soon xxx

 

[Niks]

My daughter was diagnosed with Coeliacs Disease last December. Going gluten free has not helped her symptoms at all, but her biopsies are now clear, where as before they were showing coeliac tendencies.

She is very good with what she eats, but it is really hard that she can't eat things when her symptoms are still there.

It must be much easier if there is an improvement in condition. She is still being investigated, but basically a year down the line we have nothing concrete.

Good luck! You will find lots of people with really great advise and experience.

(((hugs))) :ghug:

 

[Sarahnarizona]

I just read an article to that compared celiac's to snowflakes! LOL Basically the point was that no two people with his disease are alike and everyone's tolerance is different. I follow a blog of a local celiac and she has it so bad that even the smallest cross contamination will cause her some very serious issues. Like tongue swelling mouth ulcers and incredible pain with little options to help.

Hang in there NurseMel! Its frustrating to not get answers quickly! Have you tried peppermint oil to help with the tummy?

Niks has your daughter done the blood tests that I mentioned in the previous post? Seems to me that even thought the biopsies have shown improvement the antibody test is a simple way to test the bodies response to treatment (the GF diet).

Sarah

 

[Niks]

Niks has your daughter done the blood tests that I mentioned in the previous post? Seems to me that even thought the biopsies have shown improvement the antibody test is a simple way to test the bodies response to treatment (the GF diet).

Sarah

Sarah - All of Jaime's bloods have come back negative for coeliacs! Confusing huh! :confused2:

 

[lblair]

Hi Sarah

I have both just Dx in April of 2013 all started at Chritmas time in 2012. I was Dx with IBS about 20 years ago but might have been wrongly Dx!!!!!!!!!!

I started on Imuran because that was the cheapest route for my family and the I was on for 4 weeks before I went toxic and was super sick. So currently waiting for my Liver functions to go to normal so that I can start Humara hopefully on July 8th. Remicade is the last resort and would add Methotrexate with that.

They are also talking surgery I had a MRI today they are looking to see how much scar tissue I have. Currently in a bad flareup and its not fun started Mon he increased my steroids today to 40 mg I will see if that helps I hope it does.

I just want to feel normal again if that is possible!!!!!! And not going to the bathroom 20 plus times a day!!!!!!!!!

Hope we all start feeling better soon!!!

Lisa

 

[Sarahnarizona]

Hi Lisa!!

The timing with our symptoms are just about the same. Boo to that it was a LONG Christmas season this year.

Imuran would be my next step be as soon as I am remission we would like to try and get pregnant. I cant be on Imuran. I know there is a lot of controversy there but I just don't want to start a med to well on it then have to stop and start something new. The same goes for methotrexate!! I did a lot of research and sole searching and I have finally decided on Remicade. It happens to be the cheapest of all my options also. How crazy is that?:yfaint:

Surgery! Oh my! What type of surgery? I totally feel you. I am sick of being sick! I am trying so hard to stay positive.

I have my fingers crossed that the steroids bring you some relief!:hang:

Sarah

 

[Sarahnarizona]

Any updates?

I had my first Remicade treatment yesterday. I was really tired after. I think I stressed myself too much! I was so nervous I didn't think I would get out of the bathroom to actually get to the Dr's office! LOL

I had nothing to worry about. It was about 2 hours no reaction...the needle didn't even hurt! The RN who will be doing my treatments has been a certified Chemo nurse for 24 years and he was super good at what he did!

Hope Everyone is doing well!!!