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Microscopic Colitis

scootRN

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scootRN Rookie
scootRN
Posted

I recently had an EGD/colonoscopy with biopsies to try to figure out what is going on with me.

I believe that I have celiac disease, or at the very least gluten intolerance. I have chronic diarrhea, bloating, nausea...I even get a rash that I believe is DH.

I am very annoyed with my Dr. because he doesn't seem open to the idea at all. It was only after much persuading that he would even do an EGD to take a biopsy of my duodenum.

Anyway, the results said that it showed no blunting of the cilia, which I believe is the marker of Celiac...but it did show microscopic colitis and duodenitis. I was reading on the Mayo Clinic site, and it listed Celiac as one of the main theories as to the cause of MC.

The doc wants to diagnose me with IBS and just give me Imodium...but if my body is really trying to get rid of gluten, I don't want to slow it down with Imodium and cause the gluten to stay there longer. Also, I read that MC does not occur with IBS. I don't know how to get him to look at a bigger picture than, "Oh, you have chronic diarrhea...must be IBS"

I was wondering if anyone has any experience with this and could give me some info to bring to my follow up appt. I need some ammo, or a new doctor, or both. :unsure:

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kareng Grand Master
kareng
Posted

Is the only part of your small intestine that was biopsied the duodenum? Did he biopsy any other part of the small intestine? My duodenum was clear but the rest of my small intestines had blunting.

scootRN Rookie
scootRN
Posted
  • Author

Is the only part of your small intestine that was biopsied the duodenum? Did he biopsy any other part of the small intestine? My duodenum was clear but the rest of my small intestines had blunting.

He also biospied my colon...but to my understanding they can't go much farther into the small intestine than the duodenum. Maybe I am wrong about that. But, no, no further biopsies were taken in the small intestine.

Skylark Collaborator
Skylark
Posted

The Mayo Clinic isn't good enough for your doctor? The founder of Enterolab used to do microscopic colitis research and found a lot of overlap with microscopic colitis and celiac disease/gluten sensitivity.

Open Original Shared Link

Remember that you do not need a formal diagnosis to try the gluten-free diet. You are in control of what you eat, not your doctor.

ravenwoodglass Mentor
ravenwoodglass
Posted

If you have a rash that you think is DH head to your dermatologist. A biopsy of the area NEXT TO the lesion can pick up the antibodies. A diagnosis of DH is a diagnosis of celiac and no more testing is needed. You do have to have active lesions and do make sure to tell the derm that DH is what you are looking for.

After you are done with testing do give the diet a good strict try. That really is IMHO the best way there is to know if your body doesn't want gluten.

scootRN Rookie
scootRN
Posted
  • Author

Thank you for all of your responses. I really am at a point where I want to give up on trying to get a "real" diagnosis.

I have gone gluten-free in the past (not before the biopsy, I loaded up on gluten for a while before my tests) and it did seem to help. But, I don't think I was strict enough.

It's going to be really hard for me to give up restaurants. They were my downfall the last time. There are a few in our area that claim to have gluten-free selections, but I am not sure I can trust someone who doesn't understand not to contaminate my food.

hoot Rookie
hoot
Posted

Thank you for all of your responses. I really am at a point where I want to give up on trying to get a "real" diagnosis.

I have gone gluten-free in the past (not before the biopsy, I loaded up on gluten for a while before my tests) and it did seem to help. But, I don't think I was strict enough.

It's going to be really hard for me to give up restaurants. They were my downfall the last time. There are a few in our area that claim to have gluten-free selections, but I am not sure I can trust someone who doesn't understand not to contaminate my food.

Yeah you really do have to be strict. Also try removing dairy.

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poopedout Apprentice
poopedout
Posted

I had a similar experience with a GI clinic appointment recently. This doctor would not even consider the possibility that I might have celiac disease but he did say that I could have microscopic colitis or post-infective IBS. I did some research on this today and found some interesting papers on it. One said that 15% to 20% of patients with microscopic colitis have celiac disease and that a gluten-free diet often helps the diarrhea of microscopic colitis. Also one-third of patients with celiac disease have histologic findings (in the colon) consistent with microscopic colitis. This paper said that MC should be considered in celiac patients who have diarrhea that fails to respond to a gluten-free diet. The genes for MC and celiac seem to be the same. The point was made that anyone diagnosed with MC should be tested for celiac. MC could be celiac in the colon.

The other thing I found is that Pepto-Bismol is a good treatment for MC so I am going to try it starting today. You have to take it daily for 8 weeks.

jerseyangel Proficient
jerseyangel
Posted

The other thing I found is that Pepto-Bismol is a good treatment for MC so I am going to try it starting today. You have to take it daily for 8 weeks.

My GI uses the Pepto as a first line treatment before she moves onto something stronger. I had excellent results with 8 Pepto caplets a day for 8 weeks.

poopedout Apprentice
poopedout
Posted

My GI uses the Pepto as a first line treatment before she moves onto something stronger. I had excellent results with 8 Pepto caplets a day for 8 weeks.

That's the treatment I am going to try. How long did it take to work? What happened when you stopped taking it?

  • 2 weeks later...
Zizzle Newbie
Zizzle
Posted

I just started the Pepto treatment after giving up on it 4 months ago. Thank goodness for Pepto tablets instead of chewables! I probably had mild post-infectious IBS for 10 years, which developed into microscopic colitis (dx'd last summer). My doc wanted me to take Asacol but I declined and pursued food sensitivity testing instead. Patch tests were inconclusive, so I did Enterolab testing and discovered significant gluten sensitivity, and possible dairy, yeast and soy sensitivity (low titers).

I went gluten/dairy-free 45 days ago and haven't felt this good in 10 years!! No more bloating and indigestion (I looked 4 months pregnant all the time and my abdomen is flat now!), better mood, no cramping, no feelings of anxiety in my stomach. The diarrhea improved only 60% so far. Frequency and urgency are much improved (I'm now going 1-3/day versus 4-6!). And I don't have that feeling that my gut is deperately trying to get rid of whatever it is I just ate. No more racing to the bathroom after meals. No more blaming my problems on MSG, toxic food additives, fat, lactose and spices.

I know my problem is gluten - after being gluten-free for 10 days, I slipped up twice and paid a serious price. Within moments of eating it, my stomach rumbled as if to ask "what have you eaten!?" and I was in the bathroom within an hour and multiple times that day.

I expect it will take time to heal the inflammation in the colon after removing the trigger, so don't expect overnight results on the diarrhea. I've started reintrodicing cheese and butter with no ill-effects, and I never fully eliminated soy, so I'm hopeful I'll be able to eat most foods again (minus gluten and lactose). I'm taking 5 pepto a day (2-1-2) for 8 weeks but I notice it makes me bloated - might be the calcium content. I'm hoping Pepto helps heal the inflammation so I can stay drug/gluten/diarrhea free from then on. I'm also taking Culturelle 1/day (Lactobacillus GG). My doc still wants a confirmatory endo with biopsy, but I'm not sure I want to bother. If it's celiac, I think it developed in the last 10 years (post infection or pregnancies), and I don't have anemia or other nutrient deficiencies. I suspect a biopsy could be negative (I'm not willing to eat gluten for 6 weeks to make it accurate) and early disease might heal quickly and not be detectable. I do beleive MC could be celiac of the large intestine.

If the MC is not gone post-Pepto in 7 weeks, I'll revisit the biopsy then. But for now I'm listening to my body and enjoying my new gluten-free life!

Zizzle Newbie
Zizzle
Posted

BTW, Enterolab also found I was HLADQ2 and had a second gluten-sensitive gene. My doc was most impressed with the gene testing (I thought she would blow off Enerolab results completely). I've also have high ANA and autoantibody titers (discovered due to an itchy rash 5 yrs ago). I want to beleive MC (and possibly Celiac) are my only autoimmune diseases, but I have to get thyroid and liver testing annually to make sure I'm not developing associated autoimmune diseases.

Will find out soon if being gluten-free reduces those titers. Fingers crossed!

jerseyangel Proficient
jerseyangel
Posted

That's the treatment I am going to try. How long did it take to work? What happened when you stopped taking it?

It took 2-3 weeks to kick in. Nothing really happened when I stopped taking it--my doctor said that the treatment can be repeated if it works for me, but I haven't needed to repeat it--yet.

I took a Pepto capsule with each meal and before bed for 2 months.

margrieta Newbie
margrieta
Posted

like this message board on celiac, there is also a message board on microcopic colitis. I also suffer from microscopic colitis and that board helped me a lot to deal with my disease. To find the group go to www.perskyfarms.com and click on the link to the messaga board.

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    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
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    • Wheatwacked
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    • NanceK
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      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
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