Flare Symptoms Changed

[cloud9er]

Hi Tex,

To be fair most people are going down with multiple colds/bugs/flu or covid this year. My brother in law has had two bad cases since just before Christmas (wonderful Christmas present ), I only had an upset tummy in between Christmas and the New Year but it could have been self inflicted food poisoning.

I’ve largely been following the advice provided here and unfortunately for me I feel I’ve been getting worse since my diagnosis. Except for when I was briefly running. I do appreciate all the advice! Most of my diet has been strict, stage one or two. My iron saturation was 15% in November, plus my B12 and vitamin D were reported low in 2021; so my diet isn’t great. I’m taking Osteocare which contains magnesium, vitamin D and zinc amongst others. I take epsom salt baths 3+ times a week. Taking folic acid also now. I’m hoping the obstetrician tomorrow will test my general vitamins and minerals. My gastro appointments since 2019 have all been private not NHS funded.

Do you think I should just wait it out?

Kind Regards,

Amy

[Gabes-Apg]

Amy
how much Vit D3 are you taking per day.
Be Mindful that you are having loose stools, you may not be fully absorbing the full dose

my thoughts are, the drink protocol you did, reduced inflammation but did not help the body heal. that is why things are as they are now.

A post that you did around Christmas mentioned the items that you ingested and you were aware they caused issues. Your body is in highly reactive mode. any change in routine, variance from safe ingredients coupled with the virus activity is very likely to cause major issues.

sadly most mainstream medicine doctors do not acknowledge the impact of foods, virus, stress on conditions like MC.

I know you struggled with some of the medicines like cholestryamine etc but if you want to slow the watery D, you need medicine of some type

If you want some form of long term wellness, you need to embrace the eating plan and supplement suggestions we have made, it has to be for months (not weeks)
the combo of the covid pre xmas and eating wrong ingredients at xmas - you are only at ?2 weeks of bland eating since those events.
the stage you are at, there is no quick fix.

In the early stages of healing we encourage only Vit D3 and magnesium. Vit D3 dosage would need to be about 5000iu per day to provide benefit
given the virus issues Zinc would help with the immune system

[cloud9er]

Hi Gabes,

You’re correct about when I went back to a strict diet, diet started in the new year I’ve been eating Amy safe food since the start of July (though that including the drinks), so I’m baffled why I’m still ill/flaring in general. Before that too. I only had some custard powder for two days over Christmas! All other foods would be stage one or two. The drinks are supposed to allow a bowel rest, maybe my body needed a boost from steroids too.

Osteocare and the previous vitamin D tablets I was taking were both from Vitabiotics:
https://www.vitabiotics.com/products/os ... al-tablets
https://www.vitabiotics.com/products/ul ... 96-tablets

Both contain 1000iu of vitamin D. I’m starting to take both osteocare and vitamin D now, does that help? The elemental drinks also contain vitamins and minerals.

Going back on the drinks always seems to help my symptoms, but I’m trying to get off of them! Not sure what I’m going to do about conceiving which is imminent. I read that Prednisone is taken by ladies who go through IVF so that may be an option.

Sorry to be a pain!

Kind Regards,

Amy

[Gabes-Apg]

as I mentioned previously - the drinks have low qualities of these vitamins /minerals.
ie they have the daily RDI. the daily rdi is based on healthy people with no inflammation

to fix deficiencies and allow the body to heal you need WAY more than the daily RDI

when I was really poorly with MC I was taking 7500 - 10,000 IU per day of Vit D3
If I have the flu/virus I would take 15,000 iu of VIT d3 for 3-4 days

my maintenance dose for Vit D3 is 3000iu. A test 6 months ago showed me in the upper ranges so I dont have deficiency

EDITED ** . The osteocare only has 1000iu of Vit D. (and taking calcium also depletes magnesium)
how many tablets are you taking per day?

while the body is inflamed it can take a mouthful of the wrong ingredient to cause a flare that coupled with the covid and cold is enough to explain the ongoing issues
When I was first healing - drinking water from a different water supply would cause me issues

I would encourage you to hold off conception /pregnancy until you can have a month or more of 'stability'. ie minimal symptoms with a basic eating plan

[cloud9er]

EDITED ** . The osteocare only has 1000iu of Vit D. (and taking calcium also depletes magnesium)
how many tablets are you taking per day?

I’m taking two tablets per day. If it’s safe to do so I can try more. If you take more of 1000iu, does the number increase or is there a difference in strength? Hope that makes sense. What vitamins can you have too much of?


After speaking to the obstetrician the advice is that it’s best to wait until I’m in stable remission for 3-6 months! Although they understood that this may be the new normal and it’s as good as it’s going to get lol. I need to boost my folic acid and iron intake above the normal amounts recommended in pregnancy, plus micronutrients. Ideally I would be on a wider diet. Especially if I suffer from nausea in case I don’t fancy eating some items. They advised eating 100 additional calories in the first trimester, 200 in the second and 500 in the third which is above the normal guidance for women I think. Again ideally a woman is at optimum health before conceiving. They liked the idea of going on steroids for a boost, there is a lot of data of pregnant women taking steroids while pregnant also. The obstetrician, dietitian, gastro and possibly my GP will liaise how best to go forward and during pregnancy.

So first step is remission. Maybe I’ll be better around the time we go to New Zealand in April, fingers crossed!

Kind Regards,

Amy

[Gabes-Apg]

if you are worried about taking too much Vit D3 then I would suggest getting a test and verifying your current levels

my opinion ( I am not a medical professional) based on what you have shared with us about symptoms, reactions etc you are deficient in Vit D3 and to have a dose of 5000iu per day for 3-6 months would not cause you to have a Too high a reading if you re-tested it in 6 months time

The other aspect is that to get the full benefit of the Vit D3 to manage the inflammation you also need good amounts of the RIGHT Magnesium,
with the osteocare product - The magnesium product in the tablet is the laxative form of magnesium
I would not continue taking this product given your D issuesI

I would encourage getting a Vit D3 / K2 product on its own and a better form of Magnesium

[tex]

Amy,

I don't know if you've seen the reasoning behind Gabes' recommendations or not, but here's some background information that emphasizes the importance of what she's saying.

All of the vitamins in our food, and normal supplements, are in the inactive forms. Before our bodies can use them, they must be converted into the active forms, and this process requires adequate magnesium, or it cannot proceed. Over half of us have MTHFR gene defects that compromise our ability to complete the activation process. When our MC is active, the inflammation causes most of the nutrients in our food, including the vitamins and minerals, to go down the toilet. That's why we have vitamin D and magnesium deficiencies to such a severe degree. Our immune system operates on the active forms of vitamin D3 and magnesium, so deficiencies make us especially vulnerable to disease.

According to published research, the UK is currently experiencing a resurgence of rickets, due to Vitamin D deficiencies among the population. The problem has been increasing for years, and is getting to the point where many authorities are worried that rickets Is going to become a major problem, much as it was almost 100 years ago. Rickets is already increasing in the UK, and the problem is caused by mothers who are vitamin D deficient before their babies are born. But as Gabes points out, the problem can also be called by a magnesium deficiency. Some authorities estimate that about 70% of the general population of the world is currently magnesium deficient. Because MC depletes magnesium, as MC patients, virtually all of us are magnesium deficient, unless we're properly treating the issue, Many forms of magnesium supplements are not absorbable, and as Gabes pointed out, they're only useful as laxatives, not as supplements.

The deficiencies of vitamin D and magnesium are so widespread in the UK that it's no wonder that the majority of the population is passing viruses back and forth — they have no resistance, because their immune systems cannot function properly. The problem is widespread in virtually every country, but for some reason, it seems to be worse in the UK. Few doctors emphasize the importance of vitamin D, and virtually none of them ever detect a magnesium deficiency, because they always order the wrong type of test when checking patients' magnesium levels. Everyone has to take care of those issues themselves, because they certainly can't rely on their doctors to do it.

I hope this helps.

Tex

[cloud9er]

Hi again,

Found this as a draft on my phone: One of the reasons I’m taking osteocare is for calcium, to replace nutrients I’m missing from dairy for bone care. Let me think about this one and research if there is an alternative brand or just take all supplements separately.
I stopped the b12 tablets as there is cherry flavouring in them.
I’ll try and find the correct magnesium on the forum.
I may be able to get one of the doctors to run a nutrient blood test but if not then I’ll seek a lab out. Although the obstetrician warned that folic acid isn’t accurate in a blood test, I’ve been prescribed more potent folic acid btw.


I found out today that my calprotectin result from 17th was 517! I did have that horrible bug at the time though. My original calprotectin test was 289 back in January 2015. I’m going for another scope in a couple of weeks. My original differential diagnosis was early Crohns so we will see I will likely be put on Prednisone but there was talk of a biologic. Advised to definitely not get pregnant yet What a drama

Also I started taking antihistamines again, thought that was the answer, as well as a low histamine diet but then it always goes back to the way it was before.

Kind Regards,

Amy

[Gabes-Apg]

Amy
Calcium can only benefit bones if you have adequate levels of Vit D3 and magnesium

I have not eaten dairy for over 20 years, nor taken calcium and do not have any bone health issues

Vit D3 and magnesium are the key ingredients needed for bone health (it is one of the many reasons we encourage it)
There are numerous discussions on this forum about this with medical evidence supporting this

Also there are many non dairy MC safe sources of calcium in foods.

[cloud9er]

Hello,

I’m finding that I’m ok eating boiled rice, roasted sweet potato and roasted potato but adding in a protein of white fish or chicken is causing problems. I assume it could be due to histamine issues but otherwise I’m stumped. With myself preparing the three items I can limit bms to 3-4 times a day but protein increases it to 6-10 times a day.

Kind Regards,

Amy

[cloud9er]

Amy
Calcium can only benefit bones if you have adequate levels of Vit D3 and magnesium

I have not eaten dairy for over 20 years, nor taken calcium and do not have any bone health issues

Vit D3 and magnesium are the key ingredients needed for bone health (it is one of the many reasons we encourage it)
There are numerous discussions on this forum about this with medical evidence supporting this

Also there are many non dairy MC safe sources of calcium in foods.

Hi Gabes,

Thank you for your continued replies, support and advice (and Tex too)!

That’s good news regarding calcium as I don’t really eat non-dairy sources of calcium at the moment. I’ve limited my supplements to only a high vitamin D at the moment as I was starting to take a cocktail and worried they were upsetting me.

Kind Regards,

Amy

[Gabes-Apg]

re the fish and chicken - many people can react to these proteins.
are you buying fresh? or frozen?

that's great that the rice, sweet potato and potato are going ok

animal protein is very important so try some other protein sources - we encourage MC'ers to have protein each meal / snack.

[cloud9er]

Hi Gabes,

I’m travelling at the moment so I’m not sure how fresh the protein is. I’m a bit sad that they haven’t served me sweet potato as I am missing the veggie. I order my shopping from an online delivery provider called Ocado (not sure how unique that is to the UK). I tend to freeze meat and fish that I won’t cook in the next day or two as I find it difficult to remember getting said protein out of the freezer in time!

I’m a very fussy eater as I’m sure you’ve noticed. I tried pork belly last week with horrific results :( I’m nervous about testing pork unless I’m at home. Otherwise I like turkey, lamb and beef, sometimes duck. I don’t like game meats (except a couple of venison dishes, I do like guinea fowl though) and most fish. In fact a lot of vegetables too. I’ve not been allowed to try red meat just yet. Not sure where the elimination diet is going now to be honest

Kind Regards,

Amy

[cloud9er]

Hello,

I had my colonoscopy and gastroscopy today (top and bottom endoscopy). I’m feeling more sore, nauseous and sorry for myself than usual with a distinct lack of appetite (despite feeling strong hunger before the procedure), some of those things could be because of the sedative though. Anyway, everything looked better than the previous one from June 2022 so the dietary changes must be working! Waiting on the histology obviously. Interestingly I still have very mild gastritis. One noticeable difference though was that I had a sclerotic ileocaecal valve (narrowing) and my gastro could not move forward to the terminal ileum. This didn’t happen in early 2020. I provided another calprotectin sample today to see what level it is at, at the time of the procedure. If it is still high then the small intestine will be investigated. Otherwise it looks like I’ve healing my gut :) Good news for pregnancy.

There was a brief conversation about my lack of progress with diet. I was warned against anorexia in pregnancy and passing the behaviour on to my child/ren, through observation I’m guessing. Research with Dr Google told me that anorexia is not necessarily anorexia nervosa and means a lack of appetite without body image issues… Not sure if I’ve fully documented my issues with food but I’ve been aware of it for some months. Currently I actually no longer know which foods are causing me a problem! Especially ones that I’m currently eating I’ve been on a full and partial elemental diet with mostly white fish/potatoes/rice for 6 months with minimal improvement in symptoms.

I’m passing mahogany colour liquid stool (mostly brown mixed with blood) which is different to the normal clots of blood, I’m hoping that will stop tomorrow!

Anyway a long winded update, it will likely be two weeks for another update with results.

Kind Regards,

Amy

[cloud9er]

Hello,

In the recent scope they found:

Gastroscopy: duodenal mucosa with patchy architectural abnormality of the villi, short and broad villi, rudimentary villi and some normal villi. There is crypt hyperplasia with a moderate diffuse excess chronic inflammatory cell infiltrate within the lamina propria and a few superficial neutrophils. There is marked and diffuse increase in intraepithelial lymphocytes, which accounted at >30/100 epithelial cells. The duodenal biopsies showed partial villous atrophy, suggestive of coeliac disease. They thought it would be Marsh 3a.

CD3, CD8 immunochemistry shows preserved cyto-plasmatic staining with no loss of reaction through either CD3 or CD8 with an intraepithelial lymphocytes. - don’t understand this bit! Not sure if this looks for Lymphoma or gluten sensitive enteropathy

Colonoscopy: moderate diffuse excess chronic inflammatory cell infiltrate of the lamina propria. This includes plasma cells, lymphocytes, eosinophils and some neutrophils. Increase in surface and crypt intraepithelial lymphocytes are seen. There is patchy active cryptitis and occasional crypt abscess formation. This is more marked in the right-sided biopsies. Surface epithelium is focally degenerate and denuded. The subepithelial collagen plate is not thickened. This was seen as significant lymphocytic colitis, perhaps with superimposed Crohns.

A nugget of information for you by the pathologist by the way, apparently up to 30 or 38% of LC can have acute cryptitis and crypt abscess formation. That was in regards to potential Crohns. They haven’t found granulomas so I assume that’s the main reason why they aren’t thinking it’s that anymore, followed by lack of macroscopic evidence.

The mast cells are in the upper normal limit.

I wonder if the celiac-like pathology is because I’ve been eating oats? If I’m found to have celiac disease I guess it’s better to find out for definite. I started trying oats in December. I honestly can’t remember when I started seeing more undigested food in my stool, some time in February I think. I’ve been eating oats regularly since the colonoscopy, I will be stopping them after the celiac blood tests (IgG too).

The stool sample apparently couldn’t be tested (will provide another with blood test). They weren’t concerned about the ileocaecal valve.

I’m to stop the drinks. Will start taking Q10, a prescribed antihistamine and we will try Budesonide again (now delayed!). If the latter doesn’t work then we will try Prednisone. They obviously mentioned that Budesonide made things worse last time, they’ve been discussing my case with multiple medical staff (doctors/pathologists etc.).

I’m mostly posting these details in case it helps someone else. If anyone can offer anything that would be helpful.

Another point is that I’m now rocketing towards the New Zealand holiday, we are flying the long way round and have at least two very long flights! No idea what I’ll be able to eat! Especially as I can no longer eat the drinks Why are airlines so bad with multiple allergies?!

Thank you and Kind Regards,

Amy