Finally an answer?

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BetsyS
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Finally an answer?

Postby BetsyS » Sun Aug 28, 2022 10:38 am

For those that don't know me, I caught CDiff in Nov. 2019 while in the hospital recovering from a hemicolectomy for appendix cancer. It was a severe case and spent an 5 extra days there. I had two relapses and finally was cured after several rounds of Vanco and a taper. What is unusual in my case is i have had chronic D and what we suspect have been rounds of mild recurring CDiff ever since. My normal is 3-4 bouts of D daily. I've been seen by both an ID and GI. Both have told me the damage to my colon was severe, and that coupled with IBS and a shortened small intestine was the cause. It's been a tough pill to swallow, but I accepted it.

I recently started seeing a Rheumatologist. I've noticed that I have been experiencing severe arthritis whenever I get these recurring bouts of CDiff. She immediately ruled out rheumatoid arthritis and is looking at other possibilities, including Celiac disease. I thought she was crazy because I did not seem to have a gluten sensitivity when I did all my testing two years ago. She ran some blood tests, and I do have the genetic marker and indication of an underlying inflamation. She immediately put me on a gluten free diet. Lol, I was already eating only rice and eggs because of severe D earlier in the week. It's been 5 days since I've had any gluten, and this has been the best my gut has felt in 3 years. I have had normal stools for two days, and am hopeful.

She still hasn't confirmed Celiac so I am going through additional testing. She is inclined towards gluten intolerance due to the damage from CDiff and IBS. In either regard she says I probably will have to stay on a GF diet. After researching Celiac and talking with a friend who has it, I am not so sure because it would sure explain a lot. I have a long history of D issues as well as other Celiac symptoms including mouth ulcers, blistering rashes etc. All has been attributed to IBS and "hyper-reactive" skin. My mom also thinks it's Celiac because of family history with my dad and grandmother; both suffered lifelong D issues which were diagnosed as IBS.

Whatever the final diagnosis is, CDiff has been a huge factor because of all the damage it caused. I am not thrilled with the prospect of eating GF the rest of my life, but am hopeful we may be getting to the heart of my problems. Chronic D and the accompanying symptoms and fatigue has ruled my life for a long time; I had given up and accepted it. I am grateful for the new perspective my Rheumatologist brought in.

beth22
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Re: Finally an answer?

Postby beth22 » Sun Aug 28, 2022 8:16 pm

I'm glad that you got some help and are starting to get some answers about your ongoing issues. I can tell you that a relative of mine who was never gluten intolerant got a severe E coli infection when she was in her 50s and became gluten intolerant after. Even the tiniest amount would set her off. Eventually she was able to incorporate some foods that had gluten, but it was only after a few years. Maybe being off gluten entirely for some time will give your body a chance to heal and then you can talk to the doctor about re-introducing if you still want to. I have read that severe intestinal infections can trigger this as well as a lactose intolerance, which is what I got.

BetsyS
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Joined: Wed Jan 08, 2020 10:33 pm

Re: Finally an answer?

Postby BetsyS » Mon Aug 29, 2022 9:10 am

Thanks Beth! I can now understand how a severe infection can cause permanent impact. CDiff certainly is the number one factor for me. It either exacerbated a preexisting condition or the damage from it caused a new problem. I've been reading up on both Celiac and gluten intolerance. I don't know if it's increased awareness in the medical community or modern diet, but the number of people diagnosed has been increasing.

I am fortunate to live in an area which is highly aware and accommodating for people with dietary issues. Most restaurants list allergens in their menus and offer alternatives. Main stream grocery stores carry GF, lactose intolerant, vegan, etc.. I went to our local health food grocery store and was blown away by all of the options. They had GF pizza by the slice in their deli take out. You'd never know it was GF; it had a nice crispy crust, amazing sauce and toppings. Even our church offers GF wafers at Communion (lol, I recognized they were sesame rice crackers from Trader Joes!)

Lissaucd
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Re: Finally an answer?

Postby Lissaucd » Wed Aug 31, 2022 10:51 am

Hi Betsy!

Of course I remember you! You helped me a lot during my cdiff journey! Wow, that’s very interesting! Congratulations on having some solid stool- that just wonderful! I still get excited when mine is solid! Lol GF would be hard at first, but it will just be routine after that! I can’t have dairy, total routine now! I find alternatives for sure like dairy free ice cream. I hope you get some answers soon bc you deserve it! You have been through so much, but you are such a strong person! Just amazing!!!!

BetsyS
Regular Contributor
Posts: 107
Joined: Wed Jan 08, 2020 10:33 pm

Re: Finally an answer?

Postby BetsyS » Thu Sep 01, 2022 9:42 am

Thanks for the kind words Lissaucd. This is the longest spell I've been without D, and I am starting to feel much better. It's strange,my ID out me on lentils and rice 2 years ago to let my gut heal. I was gluten free for several weeks. My D did not stop but it got better. Wheat (bread) was one of the first things I added back and I did not consider it a trigger.

It will be interesting to see the final results from my testing. I don't think I realized just how sick I've been; I've been just coping. We knew my wbc has been high this whole time, but no specific answers other than IBS and possibly mild recurring CDiff. I wish I had pushed my Drs harder.

Lissaucd
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Posts: 230
Joined: Wed Aug 11, 2021 10:57 am

Re: Finally an answer?

Postby Lissaucd » Fri Sep 02, 2022 11:24 am

How exciting Ans I say this bc you may have found the answer to your issues!!! Be excited! You are starting to feel better, your gut will have time to heal with your new special diet. I felt like this when I discovered that probiotics was causing D after cdiff! It always makes me wonder, did I actually have cdiff when I tested the second time… or was it naturally in my tummy and I just so happen to have D bc probiotics? Who knows! Try Pinterest for some fun recipes doe GF, also tons of restaurants have choices now! I’m so happy for you, no more having to just deal with it. Now, onward to healing and feeling great !!!!

I would think of you when I would have an off day and how you still lived your life fully despite having chronic D. I need to be like you more. I still struggle. In fact, if I have a bowel movement during the day rather than at night or in morning I freak out. Like yesterday. I never did start anxiety medicine but I think that’s going to be my way back to normalcy. I got them in the mail, now I just have to be strong enough to try it and except that it may screw up my stomach or it may make me more anxious. But I’ve tried everything else and nothing has alleviated my anxiety related to CDiff! Excuse all the grammar errors I’m using Voice to talk! Multitasking and making my sick daughter pancakes!!! She started preschool and I think she’s been sick twice in two weeks!!!

BetsyS
Regular Contributor
Posts: 107
Joined: Wed Jan 08, 2020 10:33 pm

Re: Finally an answer?

Postby BetsyS » Wed Sep 07, 2022 9:39 am

thanks Lissaucd-

We each have our journey. I love this forum because you can connect with people facing similar issues. Good luck with the anti anxiety meds. It has helped several of my friends.

Gluten free seems to be working for me on the whole. I've been out of town a couple of days, and it ruined a good run of 6 days with no D. I was careful in what I chose to eat, but still got sick agan; I suspect cross-contamination in cooking. I am much better now that I'm back home a doing my own cooking. The Dr. mentioned meeting with a dietician, probably a good idea if I'm going to get reactions like this eating out; I thought I was being so careful.

BetsyS
Regular Contributor
Posts: 107
Joined: Wed Jan 08, 2020 10:33 pm

Re: Finally an answer?

Postby BetsyS » Thu Sep 15, 2022 9:39 am

Quick update. My Celiac panel came back negative, but just barely. They did not run the full panel on my initial test, so they took new samples my second visit. I had been gluten free a week, and the Dr said it may have caused the negative result. I do have other results that indicate Celiac, so I have been referred to my GI for biopsy, which is the definitive test. They're backed up, so my Endo-Colonoscopy will be in November.

No question eliminating gluten has had a huge and positive impact. I have regular stools most of the time now, something which I haven't experienced in years ( pre-CDiff). I think it's been the root cause of much of my IBS; CDiff just blew it off the charts. I do seem to have an acute sensitivity; a slight trace brings back symptoms, but this I can live with! Who would have thought a trip to the Drs. for arthritis would have brought answers to my post CDiff D? I had truly given up.

(Btw- gluten-free is also helping with the arthritic flare-ups, showing I was right in my belief they were connected.)

beth22
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Joined: Tue Apr 07, 2009 2:23 pm

Re: Finally an answer?

Postby beth22 » Fri Sep 16, 2022 1:25 am

I'm glad to hear that you are getting some answers and more importantly, help for your symptoms!


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