MICROSCOPIC COLITIS SUPPORT

Hi all,

This is difficult for me to write, as the last time I posted on this forum I felt like I was feeling a lot more positive about my situation.

I’ve been on a strict elimination diet for 4 weeks now...it was going well at first, but now my bloating has returned with a vengeance. I finally got rid of the D, but now I feel backed up and so bloated again.

I have Celiac disease and MC, and just recently diagnosed with hypothyroidism, infertility, and osteoporosis (I’m 32). I feel like things just keep piling on and it’s hard to even know which issue to tackle first. I am seeing so many specialists and feel like I am getting nowhere. I definitely feel that gut health is at the root of everything, but even on an elimination diet my symptoms were up and down.

I recently had blood work done and the results were awful. My GFR was low, creatinine high, estrogen and LH non existent, low T3 and T4 (TSH okay but I’m on Synthroid). I can’t help feeling that this is more than just a food thing, maybe there is something more going on?

I am on the leaner side, but constantly feel like a whale due to all the bloating, so I’m finding it hard to eat more and gain weight. I fear that I am developing a very negative relationship with food, and it is becoming harder and harder to stay positive.

Just needed to vent as I feel like everything is working against me, and doctors just want to prescribe drugs rather than helping me treat the real problems. Would love to hear from anyone who has dealt with similar issues and has come out the other side!! I know my negative attitude is not helping, but some days I just want to cry :(

Amanda wrote:and doctors just want to prescribe drugs rather than helping me treat the real problems

You said a mouthful there. The problem is, that's all they're trained and encouraged to do in med school, and on the job.

It's easier to feel positive when we have a plan. So let's put things into perspective. All of your issues are due to gluten sensitivity, and one thing leads to another. Rare indeed is the doctor capable of tying it all together. Both your MC and your osteoporosis are caused by untreated (or undertreated) gluten sensitivity. And most likely, so is your hypothyroidism, because according to our informal poll results a few years ago, MC patients are 7 times as likely as anyone in the general population to have thyroid issues. The hormone issues are probably caused by the undertreated hypothyroidism, but it's possible that active MC is contributing to the problem. At any rate, the original cause was almost surely untreated or undertreated gluten sensitivity.

I can assure you from personal experience (been there, done that) that your compromised kidney function (high creatinine/low eGFR) is caused by undertreated hypothyroidism. If you need to see the medical research to back this up, so that you can convince your doctor to increase your treatment, let me know, and I'll look it up. My eGFR was in the 30s because my Free T4 was low, even though my TSH was fine. My low eGFR eventually caused me to have arrhythmias (my heart began skipping beats), which caused me to have a stroke. A year-and-a-half later I was still having occasional arrhythmias and my eGFR was in the 30s I discovered the research that tied it all together (undertreated hypothyroidism can lead to low eGFR, and low eGFR can cause arrhythmias. Arrhythmias can lead to a heart attack or stroke). I showed all the research to my doctor (my GP) and asked him to double my thyroid treatment. He did, and the arrhythmias disappeared (and never returned) and My eGFR is over 60 now, higher than it has ever been. I take armour, even though I'm 79, so my insurance won't pay for it. You might have to have your doctor switch you to armour in order to correct the low free T3 problem.

So your thyroid issues need to be addressed first, because low eGFR is a serious issue. The gluten issues need to be addressed next, in order to stop the MC symptoms and the osteoporosis. It's possible that gluten might not be the culprit, because apparently it's possible for soy to cause villous flattening, also, which suggests that some other food sensitivity might be causing the problem, but cross-contamination of some sort is apparently sneaking into your diet and preventing you from reaching remission. Are you absolutely 100 % sure that not even tiny traces of gluten are somehow sneaking into your diet?

I hope this helps.

Tex

Thank you so much Tex!! I am very concerned about the thyroid issues and may have to get a second opinion, as I feel like I am getting some resistance from my endocrinologist. She feels that since my TSH is fine now(with the minimum dose of Synthroid), the borderline low T3 and T4 don't really matter to her.

I am quite sure there is no gluten in my diet. My house is almost 100% gluten free, minus a couple of snack foods my husband eats in a designated room. I have been on a GF diet for about 3 years now, since I was first diagnosed with Celiac disease. I have had repeat endoscopies since going GF and only mild gastritis was noted, no more blunted villi. However, I believe my MC is still fairly active and can't seem to get my food sensitivities pinned down. Perhaps I just need to stick to it longer? I feel like I can eat the same things for weeks and feel fine, and then all of a sudden the bloating and alternating D/constipation return, and I throw up my hands and give up. I feel like how can this be if I was sticking to my "safe" foods?? Then I question if those are actually safe foods for me and feel like I'm back to square one!

I feel that stress is a factor as well, with all the juggling of appointments and stressing about what to eat :(

That sounds like a typical endochrinologist attitude. I was lucky — I had an old country doctor who was around back before the endochrinologists approved the TSH test. Back then, doctors had to treat hypothyroidism by treating (resolving) the symptoms, so most of them probably actually knew what they were doing.

If you don't have any wheat flour anywhere in the house, then gluten probably is't the problem. You know certain foods (such as broccoli, for example) cause gas (but not an MC reaction). Is there a possibility that you might have diverticulitis, or a stenosis (narrowing) in your colon? When I had a stenosis in my colon, I had the same symptoms — alternating diarrhea and constipation.

If it weren't for the bloating, I'd suggest colestyramine. But if you don't have a stenosis (with alternating D and C), that suggests that your MC might not be in remission. You might just need more time, as you mentioned. Some of us take much longer to heal, compared with others.

Tex

Hi Tex, I had never considered diverticulitis or a stenosis. How would these conditions be diagnosed? My last colonoscopy was over a year ago, but my report does not mention anything like that.

I feel like my bowels do not empty completely, ever. But perhaps I am just inflamed all the time and that leads to this feeling. I really don't know.

Thanks for your feedback! I'm definitely going to be chatting more with my Endo about treatment options as the Synthroid is not working for me.

Thanks again!

The easiest way to diagnose a stenosis is with a CT Scan. But if you had either of those issues, they would have been reported in your operative report associated with the colonoscopy. Since your last colonoscopy was so recent, that rules out those issues if they weren't mentioned in the report. You have to be able to interpret "doctorspeak" to read those reports. Diverticulosis would have been mentioned as "tics" in the report, and a stenosis would have been mentioned as an area of difficult passage of the colonoscope tube somewhere in the sigmoid region of your colon (diverticulosis and any stenoses normally occur in the sigmoid region, because stenoses are usually caused by diverticulitis). Anyway,the point is, if neither of them is mentioned in the report (the original report by the doctor who performed the colonoscopy, not your doctor's interpretation of the report), then that rules them out.

Amanda wrote:I feel like my bowels do not empty completely, ever. But perhaps I am just inflamed all the time and that leads to this feeling.

That sensation is known as tenesmus. It's quite common among MC patients when their MC is active and their intestines are inflamed. It will fade as the inflammation is controlled.

Tex

Thanks Tex, yes I figure I'm just inflamed. I'm glad to know that's typical for MC. I will be checking my reports though just in case I missed something.

Thanks again for all your help so far!!