Microscopic Colitis, Sensitivity, No Celiac Diagnosis

[davenbacker]

Hi everyone!

Long time reader, first time post. I believe I have celiac disease, but I don't have a diagnosis, and I've tested negative a couple of times (while gluten-free). I wanted to see what you experts think after hearing my story. I'll try to keep it short Sorry in advance for yucky details.

 

I've had really minor digestive issues most of my life that I can remember...  just 2-4 BMs a day until a few years ago when it got worse. I had itchy bumps on my back (mostly upper back, but extending down as far as my buttocks) since my late teens or early 20s. I always thought they were just acne; after all, I could pop them. But they tended to itch like crazy, and scratching/popping them "burned" in a way that acne on my face didn't.

 

A few years ago, my wife went gluten-free to try to solve some digestive issues of her own, and I went along with it. I'd say this was about 3-4 years ago. Now I know we were really just gluten "light" at the time, and I would still "cheat" when I was away from her since I didn't assume it was my problem.

 

Gradually, I realized that when I "cheated" I'd pay for it with some more diarrhea than usual for myself.  Even on an average day, I was going about 6 times, while I'd go more like 10-12 when I "cheated". Meanwhile, I'd developed what I think is "brain fog": I'd have trouble focusing my eyes to do my work as well as trouble focusing my mind on whatever problem I had to solve. All along, I didn't realize my digestion was abnormal, and I thought the brain fog was just me being bored of my work or lazy.

 

As I started making the connection to gluten, I started reading more and trying to eat more carefully. My work offers free buffet-style lunch. I started moving to just the salad bar with no dressing and grilled chicken. We started being somewhat more careful about restaurants (though we still ate out 1-2 times a week). After about two months of this, I finally had normal BMs for a few days! I was able to focus and think in a way that I'd forgotten I could do! My back had stopped itching!

 

So the timeline was something like this:

- 1-2 years "gluten light". Hamburgers w/o buns, but occasional cheating, and no avoidance of "hidden gluten" like soup stock.

- After that, 6-8 months of no cheating (but being clueless about hidden gluten)

- after that, 2 months of being as careful as I knew how.

At this point, I'd lost symptoms I didn't know I had. I was elated, but also thought it was time to go get tested. (Silly, ignorant me...)

 

I started reading and realized I should've had a gluten challenge! I kept my doctor's appointment anyway, and talked to her about it. She said "some of the tests don't require you to be eating gluten". So I thought "cool, there's some new test!". I started a gluten challenge that day, since I'd read I needed to that if I got an endoscopy. I made it 5 days. Oddly, during that 5 days, my digestion didn't get that much worse, but I got new symptoms I hadn't seen before. My eyes were red and hard to open every morning...  the white of my eye got swollen for a day (I think it's called episcleritis.) Some of my joints started hurting. I had a pain in my gut that I'd never felt before (though some pain was just "life" before). After 5 days, my test results came back negative...  my doctor said "if you feel better without gluten, then just don't eat it". (I think she means well, but doesn't really understand how hard it really is!) This was mid-September last year.

 

So at this point, I stopped eating gluten again and tried to be as careful as I could. Unfortunately, I think those 5 days did a fair bit of harm. Over the next ~3 months:

- I lost about 30 pounds (225 to 193) while eating about as much as I could.

- I wanted to sleep all the time...  napping during the day when I could, and going to bed early, and waking up 10 hours later feeling like I needed several hours more.

- My diarrhea never went away...

- I noticed myself getting more sensitive...  I think these were all "glutenings" (that ought to be a horror movie...  "The Glutening")
--- most restaurants would make me sick, even ordering "gluten free"

--- I got sick after picking up a malt vinegar sea salt potato chip and not eating it. Didn't wipe my hands?

--- I got sick after handing my daughter some roasted sunflower seeds and eating something safe with the same fingers.

--- Got sick at my mother-in-laws when we used her utensils to cook.

 

For me "getting sick" means that about 1-2 hours after the offending food, I get very urgent diarrhea, and I end up not able to go far from a bathroom for the rest of the day. I'll go something like 10-12 times a day the first two days, tapering off to about 6 times a day over the next week. (Recall I got to "normal" before the stupid 5 day challenge!) Also a couple of days after what I think is a "glutening", those itchy bumps return on my back. Sometimes not many; how many and how itchy might depend on how badly I got hit. My gut will sometimes (not always) hurt in a weird way, like my intestine wants to digest itself or something. Very distinct from gas pain (with which I'm also unfortunately very familiar :-p). But for me, the very worst is the "brain fog". I can't focus on anything...  it makes me terrible at my job and a terrible parent and husband, and I hate it. The first few days are the worst, and  it gradually improves over 1-2 weeks I think.

 

Fast forward a few months, and (aside from learning the ropes of cross contamination), I had the most energy I had in years, the itching was gone, and a bald patch on the back of my head had started growing back. But since my diarrhea hadn't gone away this time, my doctor sent me to a gastroenterologist for a SIBO test. I think that was in December? Anyway, it came back VERY positive. I only had to blow for a baseline reading and then three more times (two was the minimum). So good news was, I was done with the 2+ hour test in less than an hour :-p. The nurse asked me about my problems and thought I should see the GI. He prescribed Xifaxin and told me to get back with him if it didn't help.

 

That didn't help much, so in January I called back and had an appointment with the physician's assistant at that office. She listened to me very patiently and decided I should have a colonoscopy and another celiac test (same one plus genes). Having been gluten-free again for several months, it was negative! But when they saw that I had HLA-DQ2.2 (why does that show up as "inconclusive", anyway?!?), they added an endoscopy to see if refractory celiac might be my problem. I asked her at that time if I should do a gluten challenge, and she thought it would be a bad idea to put myself through that. The endoscopy/colonoscopy was set a few months out for April...  I was very tempted to start a gluten challenge two weeks beforehand (my wife thought I was nuts).

 

Well, in March I started having a decent amount of blood in my stool...  when I called and told the GI nurse that, they squeezed me in the very next day. That was awesome, but it thwarted my probably stupid plan of a gluten challenge ;-)

 

OK, so did the endoscopy, and the doctor noted my intestines (both) were "friable" (fragile?) but no visible lesions. The bleeding was from internal hemorrhoids, so no big deal there, and I had a benign polyp removed. Biopsies on my small intestine were negative, but I was POSITIVE for Microscopic Colitis.

 

I've since been put on a bunch of pepto bismol for ~8 weeks, which brought me down to 4 potty trips a day. More recently my GI doc more recently put me on entocort; I'm in about week 6 now, and I'd say it's helping. I honestly feel funny even complaining about that, because I feel so much better than I have in about 10 years.

 

Some other weird stuff I've had that may or may not be related:

- Had neuropathy where half my hand was numb for about 6 weeks in my mid 20s.

- A few months ago, I had a big/weird bump on my finger, and got joint pain on that joint of my finger, and the same joint on the other hand for some reason. My doctor thought it was cellulitis, but antibiotics did nothing for it...  later, steroid cream helped, and it's under control now.

- I've discovered that even a little lactose makes me super gassy and adds to my diarrhea. Fructose does too, just not quite as badly. I don't think that was the case before the 5 day challenge.

 

Summary of symptoms/evidence:

- Diarrhea that gets worse with gluten

- Microscopic colitis. (I gather this is highly associated with celiac?)

- Extreme tiredness after gluten challenge

- Major weight loss after gluten challenge

- Gut pain with gluten.

- BRAIN FOG!

I see a lot of people recommend a gluten challenge, but I'm really afraid to do it. The 5 day gluten challenge I did set me back for months at least as far as I can tell; I don't want to give myself any more long term health problems... I'm still not back to as healthy as just before I did it, but I do actually feel really good, and it's addictive! Most of all, I'm afraid of the kind of husband, father, and employee I'll be if I try it. 12 weeks just sounds like a nightmare.

 

Oops, I was going to be brief, but instead wrote a novel! Sorry!

 

So what do you all think??? Am I likely to be on the right track? Is it worth trying to badger my GI doc (who overall is great) into a diagnosis _without_ a positive endoscopy or blood test? I still unfortunately obsess about it and doubt myself enough that I sometimes think about the challenge, but I just can't do it to my family.

 

I'd appreciate your expert opinions...  thank you for reading!!!

-Dave

[cyclinglady]

I think a gluten challenge should be the least of your worries! I would focus on getting well and healing from SIBO and MC and that probably means going gluten-free forever!

I am diagnosed formally (two years) but my husband went gluten-free per the advice of my allergist and his GP 14 years ago. It took a year for him to get the diet down (no cheating) but the end result? Good health! All his symptoms resolved. He refuses to do a gluten challenge. He and I both know gluten makes him sick. He will say that I get more support from medical staff and family/friends with my firm diagnosis. He is thankful that our kid can get tested for celiac disease (negative so far) because of my dx. But he still won't do the challenge. I can not blame him!

To be honest, I was accidentally glutened five weeks ago and my antibodies were sky high. I was on vacation and I ate out at several restaurants. I tried to be very careful.......but got hit multiple times. Based on how I feel now, there is no way that I am going to let down my guard for a long time. I can not imagine a challenge!

Only you can make the decision to go gluten free. If you decide to do it, I would strongly recommend that your whole house go gluten-free because you are dealing with multiple issues. Read our Newbie 101 section under "Coping". Read anything you can find about cross contamination, finding hidden sources of gluten, how to be prepared when you travel, etc.

If things resolve on a gluten-free diet, your GI just might give you a diagnosis anyway if it is important to you. If your kids or other family members start developing sympyoms, get them tested while they are consuming gluten (my kid eats gluten at school).

I wish you well!

[davenbacker]

Thanks so much for the response! My wife read it over my shoulder and was glad somebody agrees with her that the gluten challenge would be silly right now. So does it sound like possible celiac to you? Or maybe with the SIBO and MC it just doesn't matter...

Our house is gluten-free. I'm really lucky that my wife is very supportive; she herself is still gluten-free, though she can take more chances with restaurants (probably NCGS?) It's just taken some time to figure out just how careful we have to be for groceries to bring home (e.g., getting certified gluten-free nuts and granola, etc). I also stopped eating the free lunch at work and always bring my own, and have a very short list of restaurants I trust at the moment (we have 3 100% gluten-free ones where I live!). So I've been making it several weeks at a time without a "glutening"; gradually minimizing my mistakes!

Congrats on your child being OK so far! That's something I worry about; our kids never eat gluten, so we have no idea if any of them would have trouble if they did. We pack lunch for our school-age kids. I guess I'm hoping that there will be an easier test in the next few years, or at least they can do a gluten challenge when they're not so young and still developing (currently 2, 5, and 7). But that's a topic for another time...

 

Hopefully the entocort clears up the MC, and hopefully I can get to where I can digest lactose and fructose again like before the challenge. Life would be great

[cyclinglady]

Glad to be of help. I would avoid going out to eat until your symptoms are under control. It is like Russian Roulette -- especially with SIBO and MC. Also, I would research the SIBO diet and adhere to that for a while. At least discuss this with your doctor. From my understanding antibiotics can not do it alone. The diet helps. I am pretty sure granola, even if gluten-free is off the list! It is way too sweet!

Make sure all the medications are gluten free. Check with the drug companies yourself.

Take care!

[dark wolf]

Hi,
  IM no expert,  I have Celiac Disease (since 2000 Dr confirmed), Ulcerative Colitis, and stage 4 Rectal Cancer. I would say 100% gluten-free diet wit 0 cross contamination, Low Residue diet keeping a food diary so that you can help find triggers better (this may mean you need to stop eating out every week, or all together), Reading a current copy of the book "Eat Right 4 Your Blood Type", and continuing trips to the GI Dr regularly. Since learning I have UC there are so many things I cant eat than just Gluten now. I have also removed all GMO from my diet. Wish you well I share a lot of your issues.

[davenbacker]

Gray Wolf: Really sorry to hear about your issues Sending hugs and good vibes your way.

 

Thanks both of you for the advice. I kind of wanted confirmation that I was doing the right thing, so I appreciate it...  I struggle when explaining to people why I bring my own lunch to work or avoid restaurants, since I don't have an official diagnosis, and I don't want to get lumped in with fad dieters. I might just start saying I do have it, since it's easier. All I've read about MC says that there's not evidence that a gluten-free diet helps with that, and even if there was, it's not as well known. Anyway, my point is, thanks for the support...  my symptoms are enough to keep me gluten-free, but the social stuff with family and coworkers still makes me doubt myself sometimes.

 

I'm getting back to a careful low FODMAPs/SCD diet...  the first time I tried, it didn't really work, but that was pre-MC diagnosis. Now if I can just get all my ducks in a row at the same time, I think I'll recover the rest of the way.

 

Thanks again!
-Dave

[dopaminegirl]

Hi Dave, 

 

I'm glad your starting to feel better. My gluten challenge did a similar thing to me, and low fodmap is the only way to get relief. I did learn from past experience that eventually I'll heal enough that I can start eating normally (minus the gluten). Do onions kill you? They destroy me. I look forward to the day that I can eat JUST gluten free, without having to worry about all these other random foods that send my stomach into fits of rage. 

 

Next time you get glutened (it's inevitable) and get that itchy rash, you should try to get it biopsied. It sounds like potential Dermatitis Herpetiformis. If it comes back positive, then you're one step closer to knowing that you likely have celiac. On it's own I don't think it will be enough for a firm celiac diagnosis, but from what I understand, it's a pretty strong indicator.  

 

Make sure they do the biopsy correctly:

From celiac.org/celiac-disease/dermatitis-herpetiformis/

"It is important to have your dermatitis herpetiformis skin biopsy performed by someone who has diagnosed the skin condition before and knows how to do the biopsy. The skin sample must be taken from skin directly adjacent to the suspected dermatitis herpetiformis lesion, as opposed to directly from the lesion, since inflammation in the lesion can destroy the IgA deposits."
 

[notme]

 (that ought to be a horror movie...  "The Glutening")

 

 

HAHAHAAAHAAAAA!  that is hilarious!!!  

 

opening scene:  brain fog comes rolling in.  toilets flushing furiously.....     LOLOLZ !!

 

i hope you feel better, dave & welcome to the forum.  don't eat the gluten.  it obviously hates you     

[davenbacker]

Hi dopaminegirl,

Yes, I've only in the last few weeks figured out that onions are one of my problems...  I get pretty awful unpleasant gas from them (my wife puts up with so much :-p). I was hopeful I could heal enough to eat more foods again eventually...  glad that's worked for you before! Hopefully we can both get tolerance back for those foods... Gluten is hard enough :-p. At least with FODMAPs, the "fallout" of having just a little bit is more like a day of GI discomfort (for me at least), rather than 1-2+ weeks of what gluten does.

 

I did a post in the DH forum about my rash with a picture, and squirmingitch explained that it may or not be DH, it's very hard to get a diagnosis, and it likely would require eating more significant quantities of gluten to get a positive biopsy. So that's probably out. But I do have an annual visit to my dermatologist coming up (I had a basal cell carcinoma a while back), so I'll ask him what he thinks and whether he's diagnosed it before. I never thought to ask him about the rash because I thought it was just acne I hadn't grown out of, and I think the rash and the itching are definitely on the mild side of DH if that's what it is. So I'm lucky for that! It sounds awful for people who get it worse.

 

Thanks for the tips!