Diagnosed Yet Skeptical

[turbie]

I've been having a bunch of digestion problems and stomach pains that started around a year ago. I ignored it for a long while, convinced it was just in my head, but in November I gave in and went to get it checked out. They ran a bunch of tests, one of which was a celiac disease blood test that came back negative. I ended up getting sent to a GI doctor, where I had a colonoscopy on March 28th and was diagnosed with moderate Crohn's Disease. I started medication right away and have been on it ever since (Lialda, 2 pills twice a day). By May my stomach pain had gone way down and the pain I used to feel at least 4 times a day became very rare. My digestive issues (diarrhea multiple times a day and high urgency) also started dwindling, first the urgency went down and then the diarrhea got better. My doctor said my digestive system will never be completely "normal" so while my stools are still not completely normal, it's far off from the horrible diarrhea I suffered from. In order to make sure my doctor didn't miss any of the Crohn's since it can be anywhere in the digestive system and it had only been found in my large intestine, bottom of my small intestine, and anus so far, she scheduled me for an endoscopy at the beginning of June. After which she told me there was some mild inflammation, nothing very concerning, but they took a biopsy just to check. By this point I had been on my Lialda for a little over 2 months (and as I said above, was feeling much much better). Which is why I was completely shocked when a week later they called back to say my biopsy showed celiac disease. They ran another blood test on me which again came up negative, but since the biopsy is the gold standard for diagnosis, I was diagnosed anyway and ordered to begin a gluten-free diet, sent to a nutritionist, etc.

 

Yet as I read more about celiac disease, I can't help but feel that this isn't me. They said my biopsy "strongly showed" celiac disease, but that just means I had villous atrophy, right? Crohn's Disease can cause villous atrophy, and my blood test for celiac disease was negative. So who's to say that this isn't more Crohn's as opposed to celiac disease? I haven't felt any different on my gluten-free diet, and I will admit to having a gluten filled roll 2 days ago yet I've had no symptoms or reactions to it. My stomach and digestion remained normal, I didn't get fatigued or have any other strange symptoms.

I was just wondering if anyone can give me advice on whether or not you believe I should talk to my doctor and investigate this more? It just all seems too strange for me, because cross contamination seems to make some very sick yet I had a full roll and was fine. I'm not completely sold on the biopsy diagnosing me since I am 100% certain I have Crohn's which I know can cause villous atrophy as well...thoughts?

[nvsmom]

Welcome to the board.  

 

You've been dealt a tough hand with a double diagnosis.  Sorry to hear about that.    You are correct that Crohn's can cause villious atrophy in the small intestine just like celiac disease can.  The problem lies in that the blood tests for celiac disease are not fool proof.  The sensitivities (the percentage of celiacs found to be positive) of the various tests can range from between 20% to about 100%, with most being somewhere around 85% or so.  Do you know what tests they ran on you?  The more they run, the more accurate you can be sure the results will be.

 

This is the full panel:

tTG IgA and tTG igG

DGP IgA and DGP IgG

EMA IgA

total serum IgA (a control test as 5% of celiacs are too low in IgA to have accurate IgA based celiac tests (like tTG IgA))

AGA IgA and AGA IgG (older and the least reliable of all the tests)

 

You would need to be eating gluten in the 2-3 months prior to testing. If you are on any type of steroid, that can cause false negative test results.

 

Look at page 12 of this report for more info: Open Original Shared Link

 

Some people are positive only in the IgA based tests, others only in the IgG based tests (even with normal levels of serum IgA). Others only have positive DGP tests and negative tTG tests, or vice versa.  And yet other celiacs have all negative blood tests and a positive biopsy (or vice versa).

 

I would guess that you have celiac disease, but the only way to be sure would be to have a positive blood test (did they run them all?)  OR have another biopsy run after you have been gluten-free for a good 6 months to look for signs of healing.

 

Most people need to give the gluten-free diet a few weeks or months to see benefits.  Many have a couple of improvements in the first few days, like less bloating, but most symptoms take a while to clear up.  I had symptoms that were still improving after being gluten-free for 9  months.  In order to reap the benefits of the gluten-free diet, you will need to be 100% gluten-free though.  no rolls, check your spices and sauces (like soy), avoid cc in your kitchen (like in the butter container, jam jar, or sugar bag).  Small amounts of gluten can stop any improvements and make it seem as though the gluten-free diet is not helping, when in fact the person is not gluten-free.... It's a strict and anal diet, but it could help you feel well, as well as prevent future health complications that would arise from living in that constant state of systemic inflammation.

 

My suggestion would be to make sure you had all celiac disease tests run before going gluten-free any longer. I would then give the gluten-free diet a try for a good 6 months and then redo the biopsy in the new year to check for villi improvements (if you have not noticed health improvements on the diet).

 

Best wishes to you.  I hope you feel better soon.

[NatureChick]

Crohn's and Celiac share some genetic markers. That means that some genes that are known to be related to Crohn's are the same genes that are related to Celiac. But genes can perform many different jobs, and just because it isn't doing one job properly doesn't mean that it isn't doing another. But having Crohn's does mean that you are more likely to have Celiac.

It appears from the way you've written your post that you really don't want to have celiac disease and are hoping that someone here will tell you that it doesn't sound as if you do.

My guess is that the colonosopy showed Crohn's and the endoscopy showed Celiac and you have them both. There is a distinct possibility that assumptions that Crohn's also resulted in villii damage was simply a matter of doctors not understanding and underdiagnosing Celiac disease, and the genetic links between the two are a relatively new discovery.

But because Crohn's is a progressive disease with some pretty god-awful effects, even with medication, wouldn't you rather have an additional tool to fight it, going gluten free being one of them? One autoimmune disease often makes others worse.

Many people still have digestive issues long after they go gluten free for a variety of reasons. And if you're not going all out and replacing kitchen items like cutting boards and toasters (anything plastic, wood, with a non-stick coating, etc.), you are still being exposed to gluten.

Before I hit the post button, I feel that I should also say that I concur with what nvsmom already said. Though some people can stay 100% gluten free without any test results whatsoever, others need a little more motivation. But ultimately, it is your body and you have to decide.

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[turbie]

I'm actually not sure which blood tests they ran on me, I'd have to look into that. But during both of the tests I had definitely been eating and gluten and was not any steroids. My GI now wants me to have a capsule endoscopy done so that she can have a better look at my whole small intestine for both the Crohn's and Celiac. I should be having that soon so when I'm back in the office I'll try to find out about my blood tests. A second endoscopy after I've been 100% gluten free for 6 months is also a very nice suggestion, I'll probably end up requesting that, both, to make sure I'm healing and double check the biopsy. 

 

I've never thought of my gluten-free diet as another tool to fight both of my diseases, but I really like the sound of that. A year ago I was so desperate for anything (I was taking so many probiotics/vitamins) and now I have my Lialda and a gluten-free diet. It's truly amazing how much can happen in a year and how much I've improved!

 

I have gone through all the cabinets though and gotten rid of anything either containing gluten or that had the possibility of being cross-contaminated, bought all safe food, multiple gluten-free cookbooks/magazines and have slowly replaced the cooking ware. (By now I have all new cooking ware). I've really been struggling with this and accepting it since being diagnosed, perhaps I do need that little motivation but I do want to be healthy. So perhaps for now I'll play it safe, and be as gluten-free as possible then talk to my GI about having my endoscopy redone early next year and just see how it all goes from there.

Thank you so much for both of your responses! I sincerely appreciate all of the advice! This was my first time reaching out to a Celiac community, or even anyone for that matter. I feel like it helped a lot, and I'll be sticking around because I need this positive support and motivation especially if this is to be my life from now on.

[nvsmom]

I am glad you feel a bit better about it all. . Let us know what tests were run and what you decide to do.

Glad to have you with us.