So It Looks Like I Have Crohn's

[Fiddle-Faddle]

Mostly, I feel pretty good! This week, I've had a lot of loose stools, but no C, and I was assuming that the loose stools were from diving headfirst into the leftover Hallowe'en candy (yes, I should know better!).

Then there's Ursula's thread about Wilson's Syndrome (check it out if you haven't yet)...honestly, my head is spinning even without brain fog!

My IgA levels were normal--but I had been gluten-free for a month and had been on Prednisone. But my symptoms (besides for the rash) were quite late-onset and mild enough to ignore--and when I have slipped up gluten-wise, I have not noticed any reaction. What that means in terms of diagnosis, I don't know.

[Rachel--24]

My IgA levels were normal--but I had been gluten-free for a month and had been on Prednisone.

I dont mean the anti-gliadin IgA....I had meant the "Total serum IgA". It is to determine whether or not your body is producing normal amounts of IgA. If not....you are IgA deficient....which means you will never test positive for Celiac in a bloodtest...even if you have it. There are alot of Celiacs who are IgA deficient....they only will have elevated IgG levels so biopsy, response to diet, and/or genetic testing are more helpful for making a formal diagnosis.

Sorry if I didnt explain it well.

I know all the other possibilites that are popping up can seem scary and overwhelming but if you're feeling good...I wouldnt worry about all the other diagnosises going around. If you continue to have problems and they are unexplainable....then maybe think about other possibilities. I wouldnt get too worried though.

[Fiddle-Faddle]

Sorry if I didnt explain it well.

Nah, you'd think I'd have a better handle on all this by now!!!!!!

Here are my results:

Tissue Transglutam AB IGA-- 4 (less than 20 is negative)

Gliadin AB (IGG) 64 (weak positive 20-30, positive > 30)

Gliadin AB (IGA) 9 (less than 20 is negative)

The biopsy of my arm was also negative.

I don't know what the AB stands for--do you?

[Rachel--24]

I could be wrong but my guess is AB=Antibody???

They did not test you for IgA deficiency.

[Nantzie]

Uff. I'm sorry about your diagnosis. I hope you feel better soon.

Nancy

[Steve5us]

Penguin

That stinks.

I know first hand i have been dx with Celiac and Crohns for 3 years.

I do take meds-Pentesa and Entocort and they work well with minor side effects-longterm who knows?

Its a scary time but with the help of your doc you should be able to function fine for a long time. Good luck and feel free to e mail me w/questions.

Steve

[penguin]

Gee, I wonder if those of us who have only elevated IgG's will join you in the Crohn Club I guess I'd better read up on it some more...

I wouldn't worry *too* much about it if you're feeling good. I, for example, feel about 60% better gluten-free, but I started having different pain and that's why my dr. decided to check it out. Keep in mind that nobody ever thought to check more extensively for it, because I never had an elevated WBC count, and no blood in my stool. My GI doc ordered a small bowel follow-through, which is a barium x-ray test, to see if I had any kinks or narrow areas, and apparently I did. More than likely, I'll have a colonoscopy to biopsy for Crohn's. If you're really concered, call your dr about testing you for it.

At any rate, either gluten is a major trigger for my Crohn's, or the allergy is causing a lot of stomach pain.

I could be wrong but my guess is AB=Antibody???

They did not test you for IgA deficiency.

Yeah, you should have a Total Serum IgA in your Celiac panel, to test for IgA deficiency.

[Fiddle-Faddle]

Thanks, Chelsea. I hope everything works out well for you, and that one way or another, your pain and discomfort disappear and that you don't need meds, etc. Sending prayers and good energy your way!

[tiffjake]

Hey girl, just wanted to let you know I was thinking about you. Hope your appt tomorrow goes well and you get lots of info! Talk to you later, Tiff

[jenvan]

Chel-

Sorry to hear girl...but I have heard some really hopeful Crohn's recovery stories via the SCD. I know you're already familiar with it...I would definitely give it another look.

[Helena]

I found this article on the reln b/n Crohn's and celiac:

Open Original Shared Link

I skimmed over the article awhile ago . . .if I remember correctly, these authors speculate that the immunological reaction of celiac and Crohn's are quite similar . . .

[jesscarmel]

Hi Penguin

sorry to hear that. im thinking of you and hope things get better real soon!!!

Jess:)

[penguin]

So I had my appointment yesterday, and it went more or less as I expected.

The poor PA looked so sad and awkward that she had to deliver the news. She explained the whole thing to me, and of course I have to get a colonoscopy to see what the damage really is . She said the only other thing that could possibly inflame, ulcerate, and narrow my ilium that way is acute colitis, which, considering I've been sick 4 years and they would just happen to see it in the short time that I would be inflamed is quite unlikely. Also, my problems are on my right side, and colitis occurs on the left. So, Crohn's it is.

They put me on Pentasa, two MASSIVE pills four times a day. They'll see if that does it, if it doesn't, they'll try steroids with it for a short course, and then if it doesn't get better, they'll try something else. All the way down the line to Remicade, which I'd rather not do until I'm done having kids, since it's not a good idea to get pregnant on Remicade.

If I got pregnant on pentasa, I could continue taking it safely throughout my prengnacy, but with Remicade I would have to be off it a while and then be on prednisone, because I can't risk a flare during pregnancy for fear of malnutrition and miscarriage. Fun stuff.

On the upside I guess, is that it'll make me better, and that's what's important. Although it will still piss me off until that happens. Looks like they found the (a) source of my anemia. Yay?

Oh, and they also said that getting the Crohn's under control will not have any effect on my gluten intolerance, since they're both autoimmune. She said it's likely that one caused the other, let's just hope autoimmune diseases only come in pairs and not threes

As my mom said, I got the trifecta

[happygirl]

penguin,

No matter the result of all this, I just hope that you find some answers and your health improves. Will be thinking of you!

Laura

[mamaw]

Chelse

Don't have anything to add but I wanted you to know I'll be praying for you.... And hoping for the very best for you.It's been a long road that you have been on .....At least now you can actually begin to understand what is going on with your body....

hugs, hugs, hugs sweetie!!!!!

mamaw

[judycolby]

Seems like you've done a lot of research already and have a good idea what you're up against. When I was diagnosed the internet wasn't as full of info as it is today, or I just didn't know how to use it then. I was diagnosed with Crohn's about 10 years ago, thankfully! The previous years were not fun. I had no idea a body could be so sick. I had surgery about 9 years ago, at that time a portion of my colon was so enlarged I felt there was something on my lap when I sat down, but they said the opening through it was only the size of a pin head, no wonder nothing went through right. After surgery the nurse told me the portion they took cut out was the size of my husband's forearm. Unfortunately mine came back in a couple of years. It's still a struggle but have finally found a good GI. I had to beg the first one for surgery. I was the walking dead, literally sick all the time, had a full time job, 2 young kids and it was awful. I stayed with him after surgery for several years and his drug of choice was always prednisone. I had a love/hate relationship with that. But even it didn't always help. Am now on something called immuran (I believe it is an anti-rejection drug so have to have lab work all the time) and am also taking entocort. It is usually my wonder drug. It is a steroid but unlike prednisone it goes to the source of the problem. It also doesn't make me fat, hairy and sleepless. Let me know if you want to talkand I hope yours is more contollable. For an alternative check out NUCCA. I've been trying this for a few weeks, my meds weren't getting their job done and I stumbled over this and thought why not. My meds are now working still have to eat very small portions. Judy