Refractory celiac disease and collagenous microscopic colitis

[Rebecca Clayton]

Diagnosed with refractory celiac disease and collagenous microscopic colitis a few years ago. D since 2016. Diet highly restricted as sensitive to lactose and nitrites/nitrates etc etc. Same Diet daily - 2 eggs breakfast, 2 eggs lunch, meat, potatoes or rice and 1 veg evenings. Make own gluten free cake (live in Africa and VERY little gluten-free foods available) Tried one course of Entocort over a year ago, started on 6mg daily. Had  no effect. Would a course of budesonide, starting  on 9mg a day be of any use now? Any suggestions please and any suggestions re Diet??!! Thanks.

[USF1970]

3 hours ago, Rebecca Clayton said:

Diagnosed with refractory celiac disease and collagenous microscopic colitis a few years ago. D since 2016. Diet highly restricted as sensitive to lactose and nitrites/nitrates etc etc. Same Diet daily - 2 eggs breakfast, 2 eggs lunch, meat, potatoes or rice and 1 veg evenings. Make own gluten free cake (live in Africa and VERY little gluten-free foods available) Tried one course of Entocort over a year ago, started on 6mg daily. Had  no effect. Would a course of budesonide, starting  on 9mg a day be of any use now? Any suggestions please and any suggestions re Diet??!! Thanks.

I too have microscopic colitis and NOTHING has worked. For a short time, Metamucil (fiber supplement that bulks up the stool) helped for awhile. Do you have Citrucel in your country? I’m going to try that. I too tried Entocort and Welchol and it didn’t help much. I’m DESPERATE. I have more fecal accidents than I can recount.

[Scott Adams]

Welcome to the forum @Rebecca Clayton. You did not mention the symptoms or issues you are trying to treat, so it is difficult to offer any help. Could you please let us know more about the issues you are trying to deal with?

I know that there are lots of grains like teff and sorghum that are gluten-free and are available in Africa, and that some of the local foods there are gluten-free, but if you're having issues it's probably best to keep it simple until you figure out what is going on.

Also, regarding budesonide, have you seen this article?

 

[Beverage]

Before I knew I had Celiacs, I was given Budesonide for sinus issues.  It almost killed me, made my blood pressure sky rocket to stroke levels. Be careful, it's a strong steroid.

Cooked pumpkin is often used to calm digestive distress. It worked well on my kitties when they got sick (not trying to be funny, but it is what vets typically try first for dogs and cats with digestive issues, I see some articles about pumpkin and colitis, maybe worth a try).

[Rebecca Clayton]

On 10/13/2022 at 2:00 AM, Scott Adams said:

Welcome to the forum @Rebecca Clayton. You did not mention the symptoms or issues you are trying to treat, so it is difficult to offer any help. Could you please let us know more about the issues you are trying to deal with?

I know that there are lots of grains like teff and sorghum that are gluten-free and are available in Africa, and that some of the local foods there are gluten-free, but if you're having issues it's probably best to keep it simple until you figure out what is going on.

Also, regarding budesonide, have you seen this article?

 

Thanks for comments Scott.  I actually have type 1 RCD (and collagenous microscopic colitis.) The one course of Entocort  I had (starting on 6mg daily) was taken by "open capsule." i.e.  granules removed from capsules and swallowed with water. It was thought my symptoms were due more from the MC rather than the RCD hence this form of taking Entocort. My symptom has been D since 2016 with gas. Only latterly few cases of incontinence.  Weight remains fairly stable, no pain. No other symptoms. RCD is diagnosed by way of checking your genes. Can't recall how they established I had type 1. Bloods I think. Would it be unwise to try Entocort (or budesonide?) again if first course of Entocort over a year ago,  didn't help? Any advise appreciated. 

[knitty kitty]

Apparently Type Two Refractory Celiac Disease has a genetic component. 

Have you tried taking Benfotiamine?  Benfotiamine is a form of thiamine that reduces inflammation.  High doses have been shown to be beneficial.

[Rebecca Clayton]

15 minutes ago, knitty kitty said:

Apparently Type Two Refractory Celiac Disease has a genetic component. 

Have you tried taking Benfotiamine?  Benfotiamine is a form of thiamine that reduces inflammation.  High doses have been shown to be beneficial.

Thanks knitty kitty. I have not tried benfotiamine. I'll try anything! Am presently taking 1 tbsp type 1 bovine collagen powder daily - they say this can help repair "leaky gut" and this condition likely with colon inflammation associated with collagenous microscopic colitis? Any other advice/suggestions welcome!

[Rebecca Clayton]

11 hours ago, Rebecca Clayton said:

Thanks knitty kitty. I have not tried benfotiamine. I'll try anything! Am presently taking 1 tbsp type 1 bovine collagen powder daily - they say this can help repair "leaky gut" and this condition likely with colon inflammation associated with collagenous microscopic colitis? Any other advice/suggestions welcome!

Knitty kitty... re benfotiamine. Can you suggest/recommend what dose to take and for how long? I'm 5'6" 48kg. Thank you!

[Scott Adams]

BTW, just a thought here, but at the time of my diagnosis, likely due to the severe leaky gut issues, I could not tolerate around 5-6 other foods, for example chicken eggs, tomatoes, corn, casein, and a couple of others. It took me a few years to be able to add them back, and I still can only eat chicken eggs once per week. Given how many eggs you are eating have you tried eliminating them for a while to see if it helps? In my case I could eat duck eggs without issues. I can find duck eggs at Asian supermarkets (don't get ones with red Shaprie marks on top as they contain developed embryos--ask for fresh ones, or look for ones with black marker marks on top), Whole Foods, or at local farmer's markets. 

Regarding the lunch meat, they can contain an ingredient that may trigger celiac disease symptoms in some people, so be sure your does not include this:

 

[Rebecca Clayton]

39 minutes ago, Scott Adams said:

BTW, just a thought here, but at the time of my diagnosis, likely due to the severe leaky gut issues, I could not tolerate around 5-6 other foods, for example chicken eggs, tomatoes, corn, casein, and a couple of others. It took me a few years to be able to add them back, and I still can only eat chicken eggs once per week. Given how many eggs you are eating have you tried eliminating them for a while to see if it helps? In my case I could eat duck eggs without issues. I can find duck eggs at Asian supermarkets (don't get ones with red Shaprie marks on top as they contain developed embryos--ask for fresh ones, or look for ones with black marker marks on top), Whole Foods, or at local farmer's markets. 

Regarding the lunch meat, they can contain an ingredient that may trigger celiac disease symptoms in some people, so be sure your does not include this:t

Thanks again Scott. I've often wondered if my 4 chicken eggs a day is contributing to the D. Very little gluten-free foods where I live in Africa. I don't know what to eat in place of eggs. I could try baked beans on toast. I have tinned sweet corn...   Please...HOW LONG WOULD I HAVE TO BE EGG FREE, BEFORE ANY CHANGE IN D?? Don't think meat is an issue... I live in beef country and eat fresh cuts of beef and pork. Can't eat ANY processed foods... bacon, ham, polony, tinned meats etc.  I think it's the preservatives  - nitrites and nitrates that are the culprits. So wine, apple cider etc are also a no-no as they contain nitrites!!!! Did you cure your leaky gut - if so, how? Of course I'm lactose intolerant and can't touch tea  or coffee (caffeine.)

[knitty kitty]

16 hours ago, Rebecca Clayton said:

Knitty kitty... re benfotiamine. Can you suggest/recommend what dose to take and for how long? I'm 5'6" 48kg. Thank you!

I would recommend getting 100 mg capsules.  Start with one capsule with each meal.  You can take more or less.  Everybody's different so you have to see what works for you.  

Also take a B Complex (just one with breakfast) and a magnesium supplement because thiamine (benfotiamine) needs all the B vitamins and magnesium to work.  

You may want to set aside the collagen for a few weeks in order to get the benfotiamine and B Complex back into your symptoms.  (One of the side effects of collagen is diarrhea.)

I followed the Autoimmune Protocol Diet, basically meat and veggies.  No grains, no beans (legumes), no starchy vegetables like potatoes, no dairy, no processed meats.  This gives the digestive system a rest.  This diet has been scientifically proven to promote healing of the digestive tract.

I couldn't tolerate processed meats because of the meat glue.

Don't think you have to buy processed gluten free foods.    They don't contain any nutritional value.  You can always try adding them back in after you feel better.  Just do the AIP diet and take the vitamins.  

Keeping a food journal can help you identify problematic foods.

I hope you feel better soon!  

Edited October 21, 2022 by knitty kitty
Clarification

[Rebecca Clayton]

10 hours ago, knitty kitty said:

I would recommend getting 100 mg capsules.  Start with one capsule with each meal.  You can take more or less.  Everybody's different so you have to see what works for you.  

Also take a B Complex (just one with breakfast) and a magnesium supplement because thiamine (benfotiamine) needs all the B vitamins and magnesium to work.  

You may want to set aside the collagen for a few weeks in order to get the benfotiamine and B Complex back into your symptoms.  (One of the side effects of collagen is diarrhea.)

I followed the Autoimmune Protocol Diet, basically meat and veggies.  No grains, no beans (legumes), no starchy vegetables like potatoes, no dairy, no processed meats.  This gives the digestive system a rest.  This diet has been scientifically proven to promote healing of the digestive tract.

I couldn't tolerate processed meats because of the meat glue.

Don't think you have to buy processed gluten free foods.    They don't contain any nutritional value.  You can always try adding them back in after you feel better.  Just do the AIP diet and take the vitamins.  

Keeping a food journal can help you identify problematic foods.

I hope you feel better soon!  

Thanks knitty kitty for your suggestions. Appreciated!

[Posterboy]

On 10/12/2022 at 2:42 PM, Rebecca Clayton said:

Diagnosed with refractory celiac disease and collagenous microscopic colitis a few years ago. D since 2016. Diet highly restricted as sensitive to lactose and nitrites/nitrates etc etc. Same Diet daily - 2 eggs breakfast, 2 eggs lunch, meat, potatoes or rice and 1 veg evenings. Make own gluten free cake (live in Africa and VERY little gluten-free foods available) Tried one course of Entocort over a year ago, started on 6mg daily. Had  no effect. Would a course of budesonide, starting  on 9mg a day be of any use now? Any suggestions please and any suggestions re Diet??!! Thanks.

Rebecca,

It sounds like you might have developed SIBO.

Here is some resources that might help you....

https://www.eonutrition.co.uk/post/got-sibo-here-s-why-you-need-to-get-your-thiamine-status-checked

https://www.eonutrition.co.uk/post/sulfate-iv-chronic-sibo-gut-dysbiosis-as-a-protective-adaptation-to-supply-sulfate

https://ndnr.com/gastrointestinal/sibo-as-an-adaptation-a-proposed-role-for-hydrogen-sulfide/

Two or three things you can do right away is to find you some epsom salts and start doing baths in them.

Find you some Molybendum it is a powerful detoxifier and get you a B-Complex and find some Thiamax.....a special form of Thiaimine that is easily absorbed.

Knitty Kitty can provide you a link for the Thiamax.

I wrote a blog post that might also help you....

Good luck in your continued journeys in life!

I hope this is helpful but it is not medical advice.

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

[Rebecca Clayton]

18 hours ago, Posterboy said:

Rebecca,

It sounds like you might have developed SIBO.

Here is some resources that might help you....

https://www.eonutrition.co.uk/post/got-sibo-here-s-why-you-need-to-get-your-thiamine-status-checked

https://www.eonutrition.co.uk/post/sulfate-iv-chronic-sibo-gut-dysbiosis-as-a-protective-adaptation-to-supply-sulfate

https://ndnr.com/gastrointestinal/sibo-as-an-adaptation-a-proposed-role-for-hydrogen-sulfide/

Two or three things you can do right away is to find you some epsom salts and start doing baths in them.

Find you some Molybendum it is a powerful detoxifier and get you a B-Complex and find some Thiamax.....a special form of Thiaimine that is easily absorbed.

Knitty Kitty can provide you a link for the Thiamax.

I wrote a blog post that might also help you....

Good luck in your continued journeys in life!

I hope this is helpful but it is not medical advice.

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

Hi Posterboy. My, that was some reading in your links!  Thank you. I too suspected SIBO a few years ago. During one of 6 endoscopies I had over 3 years,  they checked for bacteria etc and found nothing ... other than totally fattened villi - even on a gluten-free diet for a few years - hence diagnosis of type 1 refractory celiac disease (which included blood tests.) I did read that the breath test for SIBO is not conclusive so didn't want to go to the expense of that test.  Instead I was put on a months course of strong antibiotics (horrors!) There was no improvement to the D after the course. I will certainly try the bathing in epsom sales as you suggest. I do think the D is due mainly to the collagenous microscopic colitis  as anything I eat out of the ordinary, just makes it worse. Perhaps I should bite the bullet and TRY new things... persist with (say) tomatoes, onions, bacon....with its nitrites and/or nitrates. Perhaps my gut  has an initial "shock" but with persistence, it might get used to these new foods and settle down! Who knows! The gut has a mind of its own it seems!!

[Rebecca Clayton]

On 10/13/2022 at 1:07 AM, USF1970 said:

I too have microscopic colitis and NOTHING has worked. For a short time, Metamucil (fiber supplement that bulks up the stool) helped for awhile. Do you have Citrucel in your country? I’m going to try that. I too tried Entocort and Welchol and it didn’t help much. I’m DESPERATE. I have more fecal accidents than I can recount.

Scott, on this chat group, has mentioned that my 4 eggs a day might be contributing to the D. I've been off eggs for over a week now - and the noisy gut and frequency to bathroom have definitely diminished.  Thanks Scott! I've been taking 1 tbsp type 1 bovine collagen (powder in a mashed banana daily) This may be helping too - some healing to the gut lining and leaky gut??

[Scott Adams]

Collagen can help leaky gut, and so can glutamine, just be sure both say "gluten-free" on the label to be safe. Also, after a few weeks you may want to try to find fresh duck eggs to see if you can tolerate them. 

[jddh]

Hi @Rebecca Clayton: type 2 RCD here — we're a rarity on this board, but there's a few of us!

Re: budesonide. Entocort is just a name brand of budesonide. May I ask how long you were on 6mg? Sometimes it takes a while for that medication to do its work. Mayo Clinic's approach to open capsule budesonide at 9mg is one capsule worth of granules chewed with applesauce in the morning; another capsule worth of granules swallowed whole at lunch; and an intact capsule swallowed at dinner. The idea is to distribute that drug throughout the small and large intestine (Budesonide/Entocort is manufactured to make it to the large intestine intact). Often it treats symptoms without necessarily healing severe RCD, though in my case it happens to heal me quite well without reducing symptoms. Though with RCD 1, healing per se may be less important than helping you with your symptoms.

I am NOT a doctor but IMO if you are getting medical advice to try a stronger dose of budesonide, you may want to consider carefully whether it could help you. It is usually well tolerated, and easier on the body than, say, prednisone.

I hope you feel better.

[Scott Adams]

Also, tryptophan also helps heal the gut, but again, as with all supplements and medications, only buy ones that say "gluten-free" on the label.